PositiveLite.com - Dave R

The other side of love (Part two)

Thu, 09 May 2013 00:00:00 -0400

Dave R writes… in the second part of a report concerning same sex abuse, about how it works, why it happens and what to look out for. What should we as a community be doing to help and how can we look out for our friends?

''People feel, 'Why should we air our dirty laundry? People feel so negatively about us already, the last thing we should do is contribute to negative stereotypes of us.' ''

Dave Shannon, (coordinator of the violence recovery program at Fenway Community Health, a gay and lesbian clinic in Boston)

You’re afraid to leave and afraid to stay. You’re afraid of other people’s reactions if they find out. Your gay friends will look at you differently and assume that you’re a walkover, or weak with possible masochistic traits and unable to stand on your own two feet. They’ll snort and claim they would never allow themselves to be in that position. Your family and the world at large will jump to conclusions. You can hear them saying it; they’d really never expected anything else from a same sex relationship; they knew nothing good would come of it. In short, the world will mock and criticise and somehow assume you must have deserved it. ‘After all, you’re not the easiest person to live with’.

All these things terrify you and you’re trapped, unable to move one way or the other and the keys to all your locks belong to the person you love and purports to love you back…your abuser.

Can you imagine how lonely that must feel for a man or woman, totally dependent upon someone who batters them, whether verbally, physically, or mentally? What must they do and why don’t they do it? What’s wrong with them? Get out already! If only it were that simple.

This sort of situation has various names: domestic abuse, same-sex abuse, intimate partner abuse; the point is; it’s all abuse. Furthermore, according to almost universal organisations, both LGBT and otherwise, between 25% and 33% of LGBT people are either living in, or have experience of an abusive relationship. Now statistics can say anything and frequently do. If it’s true that there’s evidence of abuse in a third of LGBT relationships, what about all those who never report their problem and solve it themselves? That would surely push the figures even higher, or maybe the statistics are taking that into account and thus become little more than guesswork. We’re used to hot air stats in the HIV community but the point is that even if just one in a hundred LGBT people is being abused, isn’t that one too many!

But as a community we don’t want to talk about it; why is that? Wouldn’t you think that the LGBT community has learned over the decades that strength and support lie in unity and looking after our own? Apparently this subject is as taboo in the LGBT community as husband beating for instance, is in heterosexual society.

“LGBT communities have been reluctant to discuss same-sex domestic violence for fear of validating negative stereotypes and detracting from the push for legal recognition of such relationships. The relative silence on this issue continues despite the fact that individuals in same-sex relationships are more likely to be abused by their partners than beaten in an act of anti-gay violence. The political downside of discussing same-sex domestic violence is obvious. Anti-gay organizations invoke same-sex domestic violence to bolster their assertions that homosexuality is a dangerous lifestyle and that same-sex relationships are unhealthy, unstable, and violent... …Same-sex domestic violence also challenges our highly gendered (and heteronormative) understanding of domestic violence because it cannot be explained by reference to gender difference, the historical subjugation of women, or the private nature of family violence.” Read more here.

Whether you agree with the above is for you to decide. I believe one of the main reasons why this is such a taboo subject is the shame engendered by intimate partner abuse. The victims don’t want to talk about it, so impress on their immediate circles not to talk about it and so on.

Going to the authorities is also seen as deeply shameful and potentially opening you up to ridicule and publicity. The only people who really want to bring it to the fore are the people who have to pick up the pieces in the hospitals, abuse shelters and LGBT organisations. They can see the results of abuse at close quarters but come up against a wall of indifference or unwillingness when they try to raise it as a community social issue.

(CNN) - Patrick Dati had reached his breaking point.

‘With a metal pin in his arm and Vicodin coursing through his veins, he picked up the phone to call his psychiatrist. Dati had undergone surgery for a broken arm after his then-boyfriend allegedly threw him down the stairs when he tried to leave their home. Now he sat on the phone with his doctor, explaining why he couldn't carry on, as he tried to overdose on painkillers.

The attempt to end his life, which landed him in a psychiatric ward for two days, resulted in part because he felt trapped in the abusive relationship and saw no way out.

"I couldn't let my boyfriend go because he wasn't allowing me to," Dati said.

Dati is one of a quarter of gay men in America who report having encountered intimate partner violence’ Read more here.

One of the biggest problems is that the word ‘abuse’ is so generic and covers a multitude of sins. It may be worth reminding people exactly what constitutes abuse. It’s not just a question of physical injury and bruises; there are far more damaging elements. If you recognise yourself, or any of your friends in any of the following, it may be worth asking yourself if there’s something more going on than at first appears.

Physical abuse; everything from the lightest slap, via severe injury, to food and sleep deprivation.
Emotional abuse; from continuous criticism, to humiliation in front of family and friends. Lying, undermining, exploiting, convincing someone to behave against the grain and pressurizing them to behave against their nature.
Isolation; reining in personal freedoms; controlling contacts with friends and family; destroying existing external relationships. Restricting information and participation in hobbies and leisure groups. Monitoring phone calls, internet use, reading letters. Physically preventing people from going out.
Threats and intimidation; threats to harm the partner, or his family or friends or even pets. Threats to his or her job and work colleagues. Threats to inform the authorities. Threats to disclose HIV status or sexuality to family, friends, neighbours and work.
Stalking; by turning up at family occasions, or the workplace. Following you to check up on your movements. Creating traps on internet to try to establish infidelity. Repeatedly phoning or mailing victim, family, friends or colleagues.
Financial abuse; taking control of bank accounts, domestic finances, wage checks. Stealing money, encouraging dependence and making financial decisions without consultation.
Sexual abuse; forcing sexual acts, rape, pressuring into unwanted sexual behaviour with partner or others. Criticising and denigrating performance.
Destruction of property; breaking things which have emotional value to you; furniture, windows. Throwing and smashing objects in rage; destroying clothes and other personal possessions. Crashing the car.

There are more; these are just an overview of classic abuse symptoms. I’m sure most people in a relationship will recognise certain of these traits; the question is, when is the line crossed and will you be aware of it when it does? As a basic guide, you should always ask yourself if you’re afraid that your partner is going to hurt you, either physically or emotionally. Are you scared of challenging them for fear of a comeback? Do you trust him or her to have your best interests at heart? Are you happy in your relationship and if not, why not? These are simple questions you can only answer after really thinking about them. Negative answers may not always mean abuse but you will know when you’ve lost full control of your life and surrendered important elements to your partner. After that, you need to ask yourself if the situation is going to get better or worse. Blind faith that it will get better, when this, that or the other situation improves, may reflect your own fear of change more than the truth of the matter.

In heterosexual society, women are far more abused than men, which may seem like stating the obvious but in LGBT society the statistics vary widely. In general, the pattern of abuse is thought to occur in roughly the same proportions for both sexes. Lesbian abuse is therefore as big a problem as gay male abuse and both seem to be growing across all LGBT communities. The occasional lurid headlines and reluctance to bring the problem out into the open, have led to a number of myths and misunderstandings about the nature of same sex abuse. These myths persist even in the LGBT communities who should know better.

. The first is that aggression in LGBT relationships is largely mutual, on the assumption that both partners are physically and mentally equal, in contrast to the obvious strength advantage in heterosexual relationships. It’s nonsense of course, because most often physical strength is not the driving force behind abuse. The need for control of another person is. However, initially a same sex partner may well try to fight back.

. Same sex abuse is based on something sexual; a sort of extension of S&M practices. The receiver of the violence either enjoys it or puts up with it to satisfy the partner’s desires. More complete nonsense. Violent behaviour is never sexual. There is no mutual contract as with S&M relationships. The victim is unwilling and the aggression is enforced.

. The victim needs to change his or her behaviour in some way and then the violence will stop. No, the person who needs to change and stop is the perpetrator. Battering is a behavioural choice. If the person being abused is forced to change behaviour then there is no reason to assume the abuse will stop there.

. Victims exaggerate the extent of the abuse. If it was as bad as they say, they would leave. Actually, most people being abused understate their experiences to the outside world. Self-shame and guilt prevent them telling the full story. If they eventually find the courage to leave, they have to leave everything they know behind in order to find some peace and the fear of being pursued is very real. Perversely, it may sometimes feel easier to stay.

. The victim gets the blame. It’s true; many people look at the victim of abuse and subconsciously feel that they should have done something about it and if they haven’t, why not? They should have read the signs. In fact, the emphasis should be lain on the abuser and his or her reasons for resorting to aggression to get their way. They deserve the criticism, not the victim.

. Alcohol, stress and drug use cause domestic violence. In many cases, they can be the triggers but it’s all about responsibility for decision making. Abusers themselves use drink or drugs, or stress as excuses but that’s just shifting responsibility away from themselves. After all, they don’t attack their bosses, or the bar staff for serving them too many beers.

. Females are by nature not violent and won’t physically abuse their partners. Many women put more faith in their female partners, especially if they also have experience of dominant males in their lives but lesbians are just as capable of controlling and aggressive behaviour as anyone else. Abusive behaviour is actually non-discriminating in this sense.

The following paragraph perfectly sums up how abuse begins and develops:

“Domestic abuse is always about power and control. One partner intentionally gains more and more power over his/ her partner. Tactics can include physical, emotional or verbal abuse, isolation, threats, intimidation, minimizing, denying, blaming, coercion, financial abuse, or using children or pets to control your behavior. Domestic violence runs in a cycle. Typically, things are wonderful at the beginning of the relationship. Gradually, tension starts to build. Finally, an act of violence occurs. This may be verbal or physical. The victim is shocked. The relationship then moves into the "honeymoon" phase. The abuser is remorseful and attentive, and the victim wants to believe the abuse was an isolated incident. Again, the tension gradually builds until another violent act occurs. The longer the cycle goes on, the closer together the acts of violence happen.”

Author

Dave R

The other side of love (Part one)

Thu, 02 May 2013 00:00:00 -0400

Dave R writes...one of the remaining, unspoken taboos in LGBT society is same sex abuse. Up to one in three LGBT people may be living in fear of their partner and can’t see a way out! I know what that’s like; I went through it myself.

“That over one-third of LGBT people have been subjected to violence from an intimate partner is evidence of the brutality we can inflect upon one another, even those whom we claim to love.”

David Phillips

The quote above from David Phillips, was a comment on an earlier post of mine. At the time I thought, ‘Damn, he’s right. I should have mentioned that side of it in the article.’ Then a couple of days later it hit me that by saying that, he had inadvertently reopened a chapter of my life that I’d more or less successfully filed away. It shocked me that I hadn’t thought about it for years and that other events had overtaken it on my list of life changing moments.

It’s one of the last remaining taboos, along with men being abused by their wives. If you are a man you just don’t readily admit that you were in an abusive relationship …with another man and yet if the statistics are true and one in three LGBT people are being abused by their partners, shouldn’t we be talking about it? After all, we lay our sex lives bare and confess all about our relationships with HIV and yet revealing a past full of same-sex abuse somehow makes us losers, weaklings and unable to hold our heads up in society.

An abiding memory I have is one which still gives me chills and one which David Phillips reawakened.

The pub would be its usual boisterous self on a Friday night. It was loud, full of smoke and both working and unemployed men from a tough industrial town in the North East of England. It was a straight bar and my partner’s brothers would be there, full of fighting talk and Newcastle Brown Ale (a lethal combination). I was sat on the edge of the group playing 5-card Stud, silently supporting my partner but not standing behind him, otherwise the others would accuse you of cheating. At any given moment but usually after Pat had had that elusive one beer too many, he’d turn his empty glass upside down on the table. At that moment my world would stop. The noise in the bar would be blocked out and my heart would start thumping in my chest. At that moment, mostly without warning, I’d know I was in trouble.

I was 21 and he was my first real love, after a few years of fumblings, furtive adventures and infatuations here and there. He’d completely swept me off my feet. I was the deepest shade of green you could imagine and met someone who was street smart and a player and knew exactly how to manipulate my naivety; talk about putty in someone’s hands! I didn’t know he was psychotic, or had been behind bars, or was an ex-boxer, or was addicted to betting on the horses, or came from a family of five brothers living on and off in a small council house, with a mother desperately trying to cling on to the reins. I didn’t know that he had a sort of sugar daddy who worshipped him and funded his gambling and rent arrears out of his own meagre pension and hated me from the first moment he set eyes on me. I didn’t know any of that; all I knew was that he was the handsomest man I’d ever seen and after one night at one of his hook-up’s houses, after he had begged him to let us use a room, I was completely hooked.

The timing was appalling. I’d just qualified as a teacher and had my first job in a town a few miles away. I had my own bedsit, my independence and loved the work I was doing. I was already set for promotion and my working future looked rosy. Pat ruined all that within six months. I should have taken the hint after a furious row during the morning after the first night before. I even walked away, horrified at the appalling arrogance of the man and the already evident aggression. The fact that I believed his apologies after he ran after me and swore undying love and unremitting attention, was a mistake that I lived to regret.

Funnily enough, looking back in many ways, I don’t regret it now. I grew up in those three years and I needed to and there’s no doubt that part of who I am now was forged through those harsh lessons. The road through life might have been easier and I would have avoided losing my job and my family and any other friends I used to have but in a perverse way, Pat taught me how to survive and read people in a way that I wonder if I could have done on my own.

It was the beatings that I still carry the scars from, both mental and physical. I’m convinced that half of my current back problems come from his thumping me repeatedly on the back instead of the face, because I had to go to school and face a class the next morning. He would take out his rage on me and until that rage was spent, there wasn’t much I could do about it. In the beginning I fought back but I was out of my league and of course, the classic apologies and promises never to do it again always worked. Now I know I fit the profile of a classic abusee but I didn’t see it then.

There came a point where it was too late and I couldn’t get out. The love changed to fear but I’d burned my boats with the schools, who got sick of my constant absences due to illness and I ended up on sickness benefit. I’d also turned my back on my family after a disastrous visit, during which Pat started an argument with them, as he loved to do with virtually anyone. My mother couldn’t take the swearing and the aggression and I ran out in sheer horror and shame. I learned later that Pat had added a few other choice home truths after I had gone and after that I couldn’t face them again.

So there I was, living in his family home with battle-worn siblings and his mother who, in her own way, tried to take me under her wing. I had no job, I’d cut the ties with my family; I had nowhere to go. I had to adapt pretty damn quickly and learned what it was like to, shall we say, live on the other side of the tracks. I learned about honour amongst thieves and the fierce loyalty his family had towards each other. Luckily, his brothers were sympathetic. It was never mentioned that Pat and I were gay, although it must have been obvious. Pat was their brother and I was his partner and that’s all that was important to them; the rest of the world had better watch out with their comments.

We went down to London a couple of times to get jobs and I built up experience in different trades (supermarket manager, record shop manager etc). Again, I’m grateful for that. A teacher often goes from kindergarten to his pension without ever leaving a school situation and it’s frequently true when they say that a teacher is a man amongst children but a child amongst men. The problem was that Pat could never hold down a job and was repeatedly fired for starting rows and being aggressive. He’d take out his frustrations on me via alcohol and the beatings got worse. One day after turning up for work with a black eye and broken nose, the penny began to drop.

To cut a long and painful story short, I eventually walked out on him; rang my parents and begged their forgiveness for two years of silence and asked if I could come home. To my astonishment, they later told me that they were convinced rough, tough, macho Pat was gay but didn’t ever suspect I was! Go figure! They protected me whilst I got myself together, got back into teaching, got my own place and got my life back on track.

What I didn’t know was that they had to put up with months of a drunken Pat ringing them, threatening them and abusing both them and me and once even turning up on the doorstep. Thank God they had the strength to put up with all that while making sure I never knew about it. It was only later when I came out to them and told them the whole story that they in turn told me about the aftermath of the break up.

So why did I put up with all that crap for so long? Why would any sane and supposedly intelligent person allow his life to be dismantled and his body to be regularly battered in this way? Well, I could write a whole article about my theories as to why Pat was the way he was; a psychologist could have a field day but in the end you have to own your own mistakes and face up to the fact that it is nobody’s fault but your own. I was so naïve and my life experience had never prepared me for someone like Pat. I was in love, at least for the first year, after which I was in too deep and I was forever finding excuses for his behaviour.

From what I read now, these are classic avoidance techniques and classic abuser and abusee scenarios. My naivety also led me to romanticise the situation somewhat. His life and background was a sort of exotic ‘otherness’, with enough danger to make it exciting; it was almost seductive.

Only after the reality became apparent did all that nonsense disappear and it became a question of making the best of a very bad job. Perversely, although he was the beast personified in the outside world, he was passive sexually (more food for the psychologist). I’m sure that made him hate himself and by extension me even more but there you go, I just wasn’t aware what went on in the mind of a psychopath.

There will be people reading this who make instant judgements. Yes I should have left him after the first fists were raised but nobody ever got away with threatening me in that way again – lesson learned! I’m not a masochist either; that was never a part of the equation. Yes, I should have been more responsible concerning my job and family; why would I put both in such a situation where they had to deal with my failure? I should have reported Pat to the police, or gone to a social worker. That’s possible today but in 1971, it was much more difficult. The police would laugh you out of the station and social services just weren’t equipped for same sex violence (they could barely protect people in heterosexual abusive relationships). Battered women’s shelters didn’t even exist and believe it or not, I still had enough pride to know that you didn’t go running to the authorities if you were being abused by your boyfriend.

One in three LGBT people are apparently still being abused by their partners. Believe me, it isn’t just physical abuse either. (One of Pat’s favourite tricks was to humiliate me in public by exposing my weaknesses in a sort of reverse snobbism.) Verbal abuse can be just as damaging although the scars are mainly on the inside and not visible to the outside world.

There’s clearly still a taboo round the subject. So, if it’s really true that a third of gay people are being abused by partners, why aren’t we hearing about it? Social workers will tell you that it’s a big problem which they do their best to deal with but society as a whole is far from sympathetic to the woes of the ‘sissy being slapped by his boy or girl friend’. Yet bullies can take all shapes and forms and same-sex bullies aren’t interested in having you as an equal partner, they search for conquests and possessions; people they can call their own property. It’s a mind- trip, a kick, a compensation tactic, call it what you will but if you’re on the receiving end, it can damage you for life.

Last week, I read a comment on an HIV forum that many young people wish older guys would stop giving in to the urge to tell their life stories…enough already! I get it, I really do. We come from a different generation, different circumstances and different truths and continually pushing the past into youngsters’ faces will of course turn them off big time. My point in writing this piece is that some things are universal and belong to every generation.

One in three LGBT people suffer abuse from their partners in 2013! Let that sink in for a minute. If it’s only half true, it’s shocking and proof that the stigmas and taboos are not confined to HIV. Surely, we as a community should be addressing this social cancer amongst us, or should we sweep it under the carpet like every generation before us?

Telling my own story has not been easy for me. I’m still ashamed that I let it happen (I’m blushing as I write) and with hindsight, which is a wonderful thing, I should have been strong enough to get out early but if one person reading this recognises the signs and makes the right decisions, then maybe it’s been worthwhile.

Remember, you can be outwardly the butchest creation on God’s earth and be regarded by society as a rock and someone who could deal with anything but behind closed doors, you could still be subject to someone else’s sadistic tendencies and living in your own private hell. It needs to be talked about and it needs exposing, so that people feel safe enough to get help if they need it. Unfortunately, breaking down society’s silence and disdain, is so much easier said than done.

“You're only as sick as your secrets, but the truth shall set you free...” (via David Geffen).

Author

Dave R

Neuropathy: facts and fiction

Thu, 18 Apr 2013 00:00:00 -0400

.Dave R writes…Neuropathy remains a mystery disease for many people; both those who have it and those who’ve never heard of it. Its symptoms are largely universal yet both the disease and the various current treatments for it, affect everyone differently.

Neuropathy is one of those diseases that affects millions of people (20 million in the USA alone) and between 30% and 40% of people living with HIV and yet if you ask 100 people on the street what it is, the vast majority of them won’t have a clue what you’re talking about. This article is meant to establish some facts and clear up some misunderstandings about the disease, especially in relation to people with HIV.

What is neuropathy?

Simply put, neuropathy is damage to the nervous system. The nerves have been attacked or compromised for one reason or another. Very often the protective layers surrounding the nerves themselves or the nerve cells have been destroyed or eroded and this leads to what you could term, ‘short circuits’ in the nervous system. This means that signals that normally travel between the brain, spine and the organs and limbs to enable normal function, are disrupted, causing both erroneous instructions and sometimes strange and painful symptoms. Neuropathy is categorised as a disease of the nerves, so it’s not just a random happening caused by an unexpected accident (except in those cases where physical injury is the obvious cause).

I’ve seen lots of sites on the internet about neuropathy caused by diabetes, or as a result of chemotherapy: is my HIV-related neuropathy the same, or totally different?

That’s true, you’ll see many more sites about diabetes-related neuropathy than anything else because diabetes is the commonest cause, especially in the Western world. There are however, over 100 different categories of neuropathy and over 100 different causes but that doesn’t mean that the neuropathic symptoms you may be feeling are generally any different to those brought about by other causes. Many things will bring about nerve damage but once you have neuropathy, you’re sharing symptoms with about 90% of all other neuropathy patients.

I don’t understand why people with HIV get neuropathy?

Don’t worry, you’re not alone. At first it was thought that people who had been on older HIV drugs (d-Drugs, Kivexa, Videx and others) were more likely to suffer nerve damage as a result. That is certainly still true in places like sub-Saharan Africa where older HIV meds are still distributed because they are cheaper. The neuropathy cases there are much higher than in the rest of the world. However, because people living with HIV are still getting neuropathy, despite being on modern combinations with no record of causing nerve damage, scientists began to look into why that was and have established that the virus is perfectly capable of attacking the nervous system on its own and without outside help. However, it’s important to remember that people with HIV can still be diabetic, or get cancer, or have alcohol problems, or any of the many other contributors to neuropathy. Finding the exact cause of your neuropathy can often be tricky but in the end, the cause is not as important as reducing the effects of the disease on your daily life.

I saw an advertisement from a local clinic that claims to be able to cure neuropathy for good: is that possible?

No, unfortunately, nerve damage cannot be cured at the moment. There are cases where nerve damage is caused by injury and if the surgeons are quick enough, they may be able to repair the damage at the site of the break but in almost all other cases, when the nerve damage is established, it is virtually impossible to repair. You can assume then that the clinic is exaggerating at best. These clinics are in the business of making money and unfortunately they have few scruples about promising people the impossible to boost their bank accounts.

However, what clinics, doctors, specialists and neurologists may be able to do is reduce the effects of the symptoms but that is entirely different to achieving a cure.

I’ve been told that the numbness, burning, tingling and pain will go away by itself; is this true?

This is where neuropathy can confound even the experts. Sometimes, if you haven’t had the symptoms for very long, they may gradually disappear, possibly due to the body being able to repair the nerve damage itself. However, in these cases, the nerve damage was probably only slight to begin with. In the vast majority of cases, if you have had neuropathic symptoms for more than 6 months to a year, you’re more than likely to be stuck with them and there’s a good chance that they will be progressive and get worse. At that point, you will need some help to cope with the effects and keep them under control.

My neurologist says that my neuropathy probably comes from a back injury; is this possible?

Oh yes; it’s mainly called radiculopathy and is one of the many causes of neuropathy. It occurs when a nerve becomes trapped between discs and vertebrae (in the hands, it may result in carpal tunnel syndrome) and this is quite common. There is some light at the end of the tunnel for radiculopathy patients in that the trapped nerve may be able to be surgically ‘released’ thus relieving the pressure and the symptoms. However, the longer a nerve is damaged due to impaction, the less likely it will recover fully. A study in the British Medical Journal, showed that three quarters of back pain sufferers who receive no help will have pain or disability a year later, so the quicker you get your condition checked out the better.

I’ve been told that neuropathy is a natural result of aging; is this correct?

This is by no means true. Many neuropathy sufferers are older people but it affects people of all ages, especially in cases of diabetes, chemotherapy, or HIV-related neuropathy. Many African HIV positive children suffer agonies from neuropathy thanks to being supplied with older HIV drugs and neuropathy amongst Western children is unfortunately more common than you think.

My doctor told me I just have to learn to live with it.

Personally, I’d change doctor if I was told that but to be brutal, it’s partly true at the moment because there’s no cure for the condition. However, there are series of about 10 medicinal treatments (plus many alternative treatments) which you can work through until one of them reduces the symptoms for you. That’s not having to live with it; that’s finding the best current way of making your life easier and you shouldn’t accept anything less.

Lots of people I know have different symptoms and my pain isn’t the same as theirs. Have I got something else?

Just like the causes and types of neuropathy, the symptoms can vary widely but generally fall under one of the following:

Numbness, tingling, burning sensation, pins and needles, twitching (even restless leg syndrome is a form of neuropathy), loss of balance and sharp, severe pains. These are most often felt in the feet (soles of your feet), legs to your knees, hands and arms but can appear on other body parts as well.

If you have what they call ‘Autonomic neuropathy’ then various involuntary functions of the body may be compromised (breathing, digestive functions and sexual performance amongst others) and bring further misery.

So just because your symptoms are different doesn’t remove the possibility of neuropathy. Personally, I believe the symptoms are pretty much unique to the disease and you know it if you’ve got it but both the degree of discomfort and the range of symptoms can certainly vary.

My doctor told me I have Idiopathic Neuropathy; what on earth does that mean?

Actually it means very little. Idiopathic neuropathy is not a disease on its own, or even a form of neuropathy; it just means the doctors can’t identify the cause of your problems. Many people leave the doctor’s appointment feeling both dissatisfied and perhaps even disbelieved if they are told their neuropathy is idiopathic and it’s the doctor’s job to reassure you that your problem is no less serious for it. Up to 40% of all neuropathy patients have idiopathic neuropathy but that says more about the efficiency of the testing systems than the severity of the symptoms. With causal diseases like diabetes, or HIV the doctor/ specialist/neurologist will probably make a reasonable estimate that the cause is linked to those external problems. Similarly, if you have undergone chemotherapy after cancer, that is a common cause of neuropathy but in many cases, the diagnosis is made on the basis of your symptoms, which are so clear that there is little dispute as to what you have. If you tell your story and describe your symptoms, you should never feel that you’re exaggerating, or being underestimated. The cause is not the end of the matter; the treatment that follows the diagnosis is what’s vital for you.

Although, I’ve worked my way through the medication lists, my neuropathy is now being controlled by opiates. The problem is that I have a feeling they’re not working as well any more.

This is a problem that many people eventually face. They work their way through this, that and the other medication and nothing has worked for long, if at all. They may also have reacted badly to the side effects of certain drugs and end up on opioids just to control the pain. The problem with opioids is that eventually, you need more of the same to achieve the same pain relief. This can be a horrifying scenario for many neuropathy patients and it requires careful and thorough monitoring by both your specialist and your home doctor. You should never be issued an opioid prescription and be left to get on with it; they’re not M&Ms. They are powerful and potentially addictive drugs which need careful handling. If you are in the position where your current opioid seems to be losing its power, then consult your doctor straight away; don’t wait until you are totally dependent and don’t ever try to go cold turkey. With careful handling, you should be able to move onto another sort of opioid but the after-care and medical control is vital.

Why am I being given antidepressants for my neuropathy?

That’s a very good question and one which every neuropathy patient should ask their doctor. Almost as far back as the Second World War, there has been an accepted course of treatment for neuropathy and there are roughly 10 drugs which can be tried until something works (or doesn’t).

You start with ‘normal’ analgesics, most of which you can buy over the counter
Then you move on to anti-depressants (either Selective Serotonin Reuptake Inhibitors (SSRIs) or Serotonin Norepinephrine Reuptake Inhibitors (SNRIs)). Those names may not mean much to you but the most common antidepressants used for nerve problems are amitriptyline and nortriptyline (Aventyl, Pamelor), which were originally developed to treat depression.In theory these can reduce pain by interfering with chemical processes in the brain and spinal cord. In the second group of antidepressants (SNRIs) you will often see duloxetine (Cymbalta) prescribed but there are others in both groups. The problem is the potential for side effects (nausea, drowsiness, dizziness, constipation and lack of appetite) and many people find these worse than the neuropathy symptoms themselves.
If the anti-depressants haven’t worked or been effective enough (and unfortunately this is true for most neuropathy patients) then you will probably be moved on to anti-convulsants, or anti-seizure medications (drugs meant for epilepsy). These include; gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) but once again, the side effects can be a big problem. These drugs work on the sodium channels and neural signals in the brain and spinal cord. If you’re having problems with a drug, don’t keep going because you don’t want to complain; discuss it with your doctor. By the way, Pfizer, the makers of Lyrica have withdrawn their own promotion of the drug for diabetes and HIV-related neuropathy because a) it has been proved to be largely ineffective and b) they were being confronted with more and more court cases thanks to the side effects. When a major drug company withdraws positive advice for its own money-spinner, you should take note, despite what your doctor may say.
If the anti-convulsants haven’t worked then your doctor may well ask you to try a number of other treatments before moving on to the serious stuff. These include lidocaine patches, capsaicin patches (based on chili pepper extracts); various supplements such as Acetyl-L-Carnitine and Alpha Lipoic Acid (there are many more) and even yoga, acupuncture and courses of exercise. Even marijuana is being recognised as being an effective neuropathic pain suppressor (depending on the laws of your area). These treatments should also not be taken lightly however, especially the patches which can cause painful burning if not applied properly.
Finally, if all else has failed, you may be put onto drugs from the opioid family such as Tramadol, Oxycontin, Tapentadol and morphine. The question above talks about how these should be approached and it cannot be overstated that you need help both beginning these drugs and coming off them if you need to. Constant monitoring of progress is essential to avoid addiction and unnecessary suffering from side effects. Your doctor should do this but if possible, get your specialist to double check; you should never be allowed to plot your own course through opioids. They will however, work if used properly but remember, if your pain is much less, it doesn’t mean that your neuropathy is being cured, it just means that the symptoms are being suppressed by the drugs.

I’m at the end of my tether. I’ve tried everything and nothing makes the pain away completely. What can I do?

I wish that I could offer you more than platitudes but at this moment in time, the drug companies are working very hard to develop new treatments for neuropathy. They have finally woken up and recognised the scale of the problem and have realised that using drugs meant for other diseases is like putting a plaster onto a severe injury; it can only be a temporary and unsatisfactory solution. Furthermore, they have realised that finding effective treatments for neuropathy will be a huge money-spinner and without being cynical, that’s their bottom line. Consequently, extensive research is being done at molecular, cellular and even at DNA level to discover how nerve pain actually works and what can be done about it. The bad news is that it will be some years before anything gets onto the chemists’ shelves and is available for most patients. Quite rightly, all new treatments have to go through assessment procedures, trials and approval from medical authorities before they can be deemed safe for the public. It’s frustrating but better that than serious mistakes.

In the meantime, if all the accepted treatments have failed, you do unfortunately have to learn to live with neuropathy and the way it’s affecting your life, in the best way you can but you’re not alone and there are many strategies which you can try to relieve your symptoms. Following the links below will provide you with lots of information to do just that.

What you need to remember is that everybody reacts differently to current neuropathy treatments; what may work for one will not work for another. You need to plough your way through the minefield until you find a single drug, or combination of drugs, supplements and alternative treatments that will help you. If, despite all your best efforts, like the questioner above, you’re still plagued by almost unbearable symptoms, you need to get support from your specialists, your doctors, your families and your friends. You may not look ill from the outside but you need to convince people that you have a serious problem and that occasionally you need a listening ear, or a hug or a good chat to unburden yourself. You may be surprised; people may not be able to feel your pain but they can be amazingly empathetic at times. Neuropathy support groups and forums may help fill in the gaps.

Further information: (there are many more sites – just Google and see)

http://www.neuropathy.org/

http://neurotalk.psychcentral.com/forumdisplay.php?f=20

www.neuropathyandhiv.blogspot.com

http://neuropathyawareness.blogspot.nl/2011/11/living-life-with-peripheral-neuropathy.html

http://www.neuropathytreatment.com/

Author

Dave R

Medication: for every action an interaction

Thu, 11 Apr 2013 00:00:00 -0400

Dave R writes…Unfortunately many people with HIV also have to deal with other conditions too. Given that our HIV meds must come first, how can we be sure that other prescribed drugs, vitamins, minerals and supplements are not interacting negatively?

Most people have to deal with various illnesses and complaints during their lifetime and by definition, the older you get, the more likely something will come along to ruin your year. If you are HIV-positive then it’s an extra burden on top of the illnesses you might have reasonably expected to get according to your age and lifestyle. This means that at one time or another or if you’re really unlucky, permanently, you’ll be taking multiple medications at the same time to deal with what’s ailing you. This is when you really need to watch out for what you’re putting into your body because the very things meant to cure or control your problem may end up fighting each other in your system, to the detriment of one or the other, or both. Not only medications can interact negatively but supplements and vitamins can influence the working of your medical treatment also.

Drug interactions are a serious issue and for people living with HIV, it’s not just a question of avoiding grapefruit and St. John’s wort. It requires careful checking of each of your HIV drugs and components against anything else you might be taking, to see if one reduces the efficiency of another, or worse, interferes with it to the point of making it dangerous.

Most people take medications on trust. They go to their doctor or specialist and are prescribed something to treat a specific problem. If you’re lucky you’ll be warned about possible side effects but mostly you take your doctor’s word as being gospel and swallow your drugs at the appointed times each day without a second thought. Furthermore, most people don’t read the information leaflet inside the box, a) because they don’t want to become paranoid about all the possible side effects; b) because the print is sometimes so small you need the Hubble telescope to read it or c) because they just can’t be bothered.

The list of potential side effects is indeed intimidating but if you remember that it’s there to cover the pharmaceutical company’s ass if something goes wrong – “Well, you were warned in the leaflet!”; you can read the most common side effects and then do your own research on the internet. However, reading the leaflet anyway is not a bad idea, if only to see whether the recommendations match up with what your doctor has told you. If they don’t then you’re entitled to phone and ask why; there may well be a reasonable explanation but leave nothing to chance.

Doctors are also human beings who make mistakes; they shouldn’t but they do and we should be able to forgive them for it, considering their workload and stress levels plus the fact that you may be patient number 35 of the day and he/she can’t remember that this particular antibiotic actually clashes with this particular HIV medication. It happens more frequently than you may think and when something goes wrong it may be some considerable time later and the mistake may be very difficult to trace back.

HIV meds are complex compounds and in order to work to the optimum, they have to be taken at the recommended times and regularly but if they are mixed with other chemical drugs meant for other diseases, the clashes may have consequences. It’s logical really. In the best of all possible worlds, the right prescription is given for the right disease and the eventual interactions will flash up on your chemist’s computer screen before you even begin the course. However, in the real world things will be missed, especially when taking supplements over which your doctors or pharmacists generally have little control.

It’s up to us then to check everything we throw down our throats because simply put, it’s in our own best interests.

The links shown here are two of the best sites for checking both what’s in your drugs, what the side effects are and what the possible interactions with other drugs can be. . . .

The 17^th Annual HIV Drugs Guide and How do your medications interact with others?

There are other good drug comparison sites on the net but these two are trustworthy and you really need accurate information. If in doubt double check somewhere else.

Whenever you come away from the doctor or specialist, take a few minutes (it really doesn’t take long) to use these sites to see exactly what you’re taking and what its purpose is and then check its interactions with any other medicines, or supplements you may use.

N.B sometimes you will need to enter the proper name of the drug and not just its market name. For example, Truvada is a combination of Tenofovir and emtricitabine and Isentress is Raltegravir. This is because different countries often have different brand names for drugs but you will always find the proper name on the box, generally in brackets after the brand name. Most common supplements can also be checked on the second link.

If you have any doubts at all about clashes or contra-indications, or even side-effects, first check that you haven’t misread the information and then don’t hesitate to contact the person who has prescribed it for you. They may be slightly irritated that you’ve had the nerve to question their judgement but really they should be pleased that you’re so on the ball because if there is a problem and your HIV or other drugs are compromised by something else you’re taking, then they won’t work properly and the last thing you want is to be resistant to this that or the other because of other chemical influences. Doing a bit of research on your own may save wasting time and money due to complications later.

If you think that you’re perfectly healthy, your HIV regime is working fine and everything is hunky dory, remember that you may become diabetic, or be unlucky enough to get a cancer, or any one of a myriad of lesser or greater diseases later in life – it happens! Remember also, alcohol is one of the commonest negative interactions with drugs so everybody needs to keep their wits about them. Besides that, even antibiotics used for common infections can interact with your HIV meds. There are enough good alternatives, so why put yourself through more misery for the sake of a few minutes reading up the facts.

I’m aware that this all sounds a bit like a lecture from your parents and I apologise for that but so many people are unaware of both what they put into their bodies every day and how one chemical can work against another, that it can’t do any harm to at least think about adding these two links to your favourites, in case something comes up in the future. Don’t rely 100% on doctors; they just don’t have the time or the resources any more to check absolutely everything in the pantheon of medicines and remember your case is unique; you may react badly to a certain drug while others don’t.

It seems a no-brainer to be at least partially responsible for looking at our own treatment efficiency and sharing the load with doctors. Your treatment should ideally be a partnership between you and your doctor instead of being one-sided and assuming that ‘God doesn’t fuck up every now and then’. Don’t let yourself be caught out by ignorance; you’re the only one who may suffer in the end.

Further information:

http://www.fda.gov/ForConsumers/byAudience/ForPatientAdvocates/HIVandAIDSActivities/ucm118915.htm

http://www.hivclinic.ca/main/drugs_interact.html

http://www.nlm.nih.gov/medlineplus/druginformation.html

http://www.prohealth.com/library/showarticle.cfm?libid=13668

Author

Dave R

Bacterial meningitis: new killer kid on the block

Thu, 04 Apr 2013 00:00:00 -0400

Dave R writes…Just as we are beginning to hope that the worst of HIV/AIDS is over and that there may be a vaccine or cure on the horizon; along comes another killer bacteria aimed at gay men. Will meningitis be the new AIDS?

The problem with scare-monger titles like this one is that you can be accused of over-reacting (especially if it turns out to be a false alarm) and therefore devaluing every warning in the future. That said, sometimes the message is more important than the delivery and a dramatic title may at least catch the eye.

Recent reports concerning the deaths of HIV positive men in New York who have suddenly contracted a new strain of meningitis may seem localised (especially when you look at the numbers involved) but they may well be the precursor to a very serious problem indeed. The ease in which meningitis can be spread, both sexually and via normal social contact, makes the New York situation a problem we ignore at our peril.

We can’t forget that HIV began as a localised problem with a few people coming down with strange symptoms. The good news is that there is a vaccine to prevent it; the bad news is that if you already have it, you need to get help before it’s too late.

“The Health Department issued new recommendations today for vaccinating against invasive meningococcal disease – commonly known as meningitis – after an increase in cases. Vaccinations are now advised for men, regardless of HIV status, who regularly have intimate contact with other men met through a website, digital application (“App”), or at a bar or party.”

(March 6, 2013, New York Department of Health and Mental Hygiene.)

Many people won’t really understand what meningitis actually is, so first, a few facts.

The meninges are three protective membranes which cover both the brain (cranial meninges) and spinal cord (spinal meninges). You could describe them as layers of glue, following every contour of the brain and they prevent fluids from coming into contact with the brain and spinal cord. In this way, the nervous system is protected from blood and other fluids pressurizing those vital organs, although there is a layer of cerebro-spinal fluid between two of the membranes. They also serve as a framework for blood vessels. Isn’t nature wonderful!

Meningitis happens when these membranes become inflamed or damaged. There are two distinct types: viral meningitis and bacterial meningitis and generally, meningitis can be treated with antibiotics. The current problem in New York and amongst LGBT people is that this outbreak is a new form of bacterial meningitis (meningococcal) and it is very easily spread from person to person. It is unique and so new that it hasn’t yet been named but it is particularly deadly and kills one out of three people instead of the normal one out of five, as with other forms of meningitis. Most worrying of all, it seems to be targeting gay men.

Those are the basic biological facts; so what has actually happened in New York and should we be worried?

Since 2010, there have been 22 reported cases; 13 of them in 2012 and four so far this year. Seven of them have died and 12 were HIV positive. The cases are spread across various New York districts and the pattern and connection to HIV is just beginning to be fully realised; hence the warning from the authorities.

“It’s been sort of marching through the community in a way that makes us very scared,” Dr. Jay Varma, the deputy commissioner for disease control at the city’s health department, said last week.

Because meningitis very often attacks young men, the 12 cases of men in their early 30’s; eight of whom were HIV+, becomes an alarming factor. Four new cases in the last month and four deaths among the 12 younger men; plus the fact that the normal incidence of bacterial meningitis amongst gay men is about 20 times higher than in the rest of the population, all adds to the growing sense of alarm.

“Fortunately for meningococcus, we surely have the tools to prevent the next case. A vaccine is available to prevent almost all the cases seen in the U.S. It’s comprised of bits from four of the five strains that cause most human disease. In the usually drab world of hard-boiled science, these strains are organized by an eccentric lettering system: A, B, C, Y, and W135 (don’t ask). The current shot works against all but the B strain, which remains difficult to develop for reasons that only a vaccinologist could describe.” (Kent Sepkowitz: Infectious disease specialist.)

So what happens if you get meningitis and what should you look out for?

The symptoms of meningitis usually emerge pretty quickly (normally two to five days after contact) and because they progress very quickly, it can be a fatal disease if not treated as quickly as possible. It can go from a fever, to a headache; maybe a rash of red spots and a stiff neck and then death within a few hours. Without wishing to exaggerate in any way; people have reported sick and have died before the ambulance could arrive. This is a nasty disease. People need to see their doctor and receive at least preventative, prophylactic antibiotics as soon as humanly possible.

“This disease is spread by prolonged close contact with nose or throat discharges from an infected person. Examples of prolonged contact include living in the same household or intimate activities, including kissing and sexual contact.” (HIV and Hepatitis.com)

So yes, unfortunately sharing cups, tooth brushes and all the things that led to stigmas for HIV are pertinent in the case of meningitis.

What can you do about it if you display these symptoms?

First of all, we all know how common these symptoms are individually and how easily people may panic at the first sign of a headache, so it’s important to listen to your body and take action if you know that the symptoms you have just don’t feel normal. If you’re worried, contact your doctor immediately and report both your symptoms and the story behind them. In this way, the doctor will have a reference point from which to start and know what he or she should be looking for. This is a disease where quick action could save lives, so without being pushy, make sure you’re taken seriously. Unfortunately, the vaccine won’t cure those who are already infected but that equally doesn’t mean a death sentence. Quick and effective treatment is the key but delay can be dangerous.

What should you do if you have no symptoms but are now pretty worried that you’re at risk?

Again, try not to give in to rampant hypochondria (we’re all guilty of that from time to time!) but be aware of your local situation. If you live in New York, then you should heed the warnings and get vaccinated; if you live elsewhere, it will do no harm to ring your local LGBT/HIV/local health authority and ask if any cases have been reported near you and what their policy is. It may be that a vaccination is advisable for all gay men, especially younger gay men but then you may meet problems of availability, cost and general unwillingness plus the inevitable insurance coverage issues. Your local LGBT groups may be able to put pressure on health authorities to implement a vaccine programme or at least make the vaccine readily available.

As you may have gathered from reading so far, bacterial meningitis is no joke. Hopefully it will remain confined to small outbreaks but as this snippet from The Daily Beast shows; medical practitioners are holding their collective breath at the potential of this outbreak:

“So when the New York City Department of Health and Mental Hygiene yesterday sent around an alert about recent meningococcus cases in HIV-positive homosexual men, it caused a real gasp among practitioners everywhere—this one is scary. When you see a newspaper photo of people in a town lined up for shots and pills to prevent spread of the case of meningitis, it’s meningococcus causing the problem. Its name, which is already alarming enough, actually understates its potential devastation. The meningococcus bacteria can cause two different diseases—when it’s “just” meningitis, the death rate is about 10 percent, but the more lethal sepsis form (called meningococcemia) kills about half by overwhelming the body’s blood vessels while sparing the brain’s lining. We don’t know yet which manifestation is being seen among gay men in NYC—perhaps cases of both—but the high death rate suggests the more dangerous meningococcemia.”

Finally…

It does seem cruel doesn’t it? We’re coming to terms with the consequences of HIV and both living longer and developing effective strategies to avoid its spread and along comes something else to scare the living daylights out of us. It may all turn out to be a storm in a teacup (with respect for those who have already died) but if HIV/AIDS taught us one thing, it’s that our own organisations are sometimes quicker to sound the alarm bell than the authorities.

That’s possibly not true in this case. When the New York medical authorities advise all gay men to get vaccinated that’s a pretty swift official response and one that shows how seriously they are taking the threat. They too may have learned their lessons from the past and want to prevent an epidemic before it takes hold. However, the problem is getting the message out.

What happens if you’re active sexually, or using intravenous drugs, or hiding behind marriage, or hiding from stigma, never read the gay press or websites and don’t take much notice of health warnings? These are the guys that may be at greatest risk and the ones who could spread bacterial meningitis out of control. The warnings need to be displayed as widely as possible; in doctors’ waiting rooms, hospitals, train stations, public libraries and of course, all gay establishments, wherever, in order to get the message across.

It’s not the only cloud on the horizon either: the spread of bacteria resistant gonorrhoea and the potential for resistant strains of syphilis and hepatitis may be occupying our thoughts in the years to come. It’s the way of all viruses and bacteria; those life forms have a survival instinct just as we do and are constantly seeking out ways to resist the things we develop to kill them. Plagues and viral epidemics are a part of human history; there’s no reason to suppose it will stop now. The key is remaining alert and just as in New York, reacting quickly when a threat comes along.

Bacterial meningitis is easier to catch than HIV and potentially much deadlier; the good news is that we can vaccinate against it at the moment; the bad news is that making people aware of this is not as easy as it sounds.

Further information:

http://en.wikipedia.org/wiki/Meningitis

http://www.dailykos.com/story/2013/03/24/1196531/-Health-Alert-Meningitis-Outbreak-in-NYC-Among-Gay-Men

http://www.huffingtonpost.com/michael-broder/gay-meningitis-outbreak-new-york-city_b_2932956.html

http://www.queerty.com/nyc-health-dept-issues-meningitis-warning-for-gay-men-20120928/

Author

Dave R

“If more men were homosexual, there’d be no wars."

Mon, 25 Mar 2013 00:00:00 -0400

Dave R writes…As a respected voice of his generation, Morrissey claims that wars wouldn’t happen if more people were gay. Do you believe that we have the ‘peaceful’ gene in our makeup, or is this statement too idealistic for words?

This title quote comes from a February, 2013 interview with Morrissey, by Amy Rose.

For those of you who are asking ‘Morrissey? Who?’ he was the lead singer of The Smiths in the early 80’s before going solo in 1987. The group was massive and yet had a cult status and the same could be said for Morrissey himself. The personification of an anti-hero and the absolute antithesis of those we would call superstars today, Morrissey’s angst-ridden lyrics spoke to a whole generation of bedroom-bound teens and young people. Strewing gladioli over his audience and singing songs with titles like ‘Heaven Knows I’m Miserable Now’ and ‘Meat is Murder’ he struck a chord with those who felt alienated from the mainstream and still has one of the most loyal fan bases of any of his generation. People literally swear that he saved their lives!

I never got Morrissey and probably never will and although I admired his daring as a gay entertainer, I couldn’t cope with the relentless depression. but then again, I was also the wrong generation and looked at the bleakness of 80’s Britain and the rise of the ‘loads of cash’ generation more with cynicism than despair. Nevertheless, he became a cult icon and considering the fact that he hated the very idea, success like that can’t be denied.

However, in this recent interview, he comes out with some pretty controversial statements, the validity of which you will need to decide for yourselves. One of these is the theme of this article:

“War, I thought, was the most negative aspect of male heterosexuality. If more men were homosexual, there would be no wars, because homosexual men would never kill other men, whereas heterosexual men love killing other men. They even get medals for it. Women don’t go to war to kill other women. Wars and armies and nuclear weapons are essentially heterosexual hobbies.”

Has he got a point? I believe we’d really like to think so. In the best of all possible worlds, LGBT people are non-aggressive, pacifist and have no secret longings to play with war toys. I’m not sure Jeffrey Dahmer, Huang Yong, Fritz Haarmann and many other serial killers would agree but maybe psychopaths are cases apart and can’t be said to be representative.

However, surely most people would find Morrissey’s statement naïve to say the least? LGBT people are surely as susceptible to rage and violence as anyone else. Because we are more often than not victims of violent crime doesn’t mean that we wouldn’t kill under the right circumstances. Surely history has taught us that if you scratch the surface of a human being in certain situations, any person can quite easily revert to the animal and behave like the beast. Every civil war in the last fifty years has shown how easily people can turn on their neighbours and slaughter them because of their different beliefs. It’s an instinctive kill or be killed drive that often stems from following the herd.

Why should LGBT people be any different? We don’t have a peaceful gene that distinguishes us from the rest of society. Enough gay men and women join the armed forces, or the police, or criminal gangs; are we saying that they would eschew violence when required in their line of work? No of course not, so what on earth is Morrissey on about?

There isn’t a shred of evidence to prove that children who are brought up to be gender neutral in respect of their toys (no toy guns, tanks, swords, bows and arrows etc.) grow up to be any less susceptible to aggression and violence than others. Girls are no less prone to aggression if they are denied Barbie’s and Cinderella costumes. That said, they, may well be more tolerant and less inclined to gender stereotypes but despite what Morrissey claims, I don’t believe that aggression is a gender stereotype; it’s a universal human instinct that is easier aroused in some than in others.

To underpin his argument by claiming that women don’t go to war to kill other women is just too simplistic. As more and more women find their way into armed forces across the world, they will inevitably end up indulging in same-sex killing because it’s part of their job and like all human beings, integral to their nature. Apart from the legendary Amazons, all-female armies haven’t existed, although historically, many cultures have had female military detachments within the main army. That however, is a social construct and nothing else. When women are forced to raise the children and be housekeepers; fighting is left to the men. Male pride has denied female warriors their chance because males have traditionally been the hunters and physically stronger but whether that’s nature or nurture is open to debate.

There are two other reasons why I disagree with Morrissey’s idealism. Anger management in the LGBT community is one of the largest topics of discussion on therapists’ couches. Repressed frustration; anger at stigmatisation and unfair treatment; aggression through guilt or even illness (as with people living with HIV, cancer, hepatitis and more) are growing problems amongst the LGBT community. I would claim that there is nothing wrong with that. It’s a perfectly natural reaction due to stress from outside influences. If LGBT people were really non-aggressive by nature, that wouldn’t happen because we’d all look at life’s setbacks with a Zen acceptance. Rage against the machine is a universal reaction to injustice and LGBT people are as entitled as the next man to do it and they do!

Secondly, if you go into any gay social situation, you will encounter the same aggression towards other like-minded people as in the heterosexual community. Okay, it doesn’t often end in killing but neither does it amongst heterosexuals. The aggression is there however. Look at gay humour. Bitchiness can be cruel, direct and words can hurt, even when cloaked in humour. It’s generally a safe escape valve. In the heterosexual social environment, that may end up as a full blown argument, with a physical fight as a result but they don’t have the humour as a catharsis. However, take both situations and move them one step further and violence can be applicable to both groups.

Morrissey’s main point I suppose is that LGBT people would never go to war because they don’t love killing like heterosexual men do. That supposes that heterosexuals enjoy killing as a hobby and gay people don’t. Sorry but where’s the proof and is that anything more than pure stereotyping? If we take an honest look back at our childhoods, I’d wager that we got the same perverse satisfaction from squashing the poor fly or spider as the rest of humanity.

Anyway, men or women don’t go to war of their own volition, politicians, political idealists and religious leaders do. Their armies are professional employees who are ordered to do a job but the orders come from above and we know there are enough LGBT people in the corridors of power!

Okay, you might assume that LGBT people are less inclined to become soldiers, policemen, or other positions who occasionally need to implement violence but is that because that’s their nature, or is it because they aren’t accepted in those jobs thanks to their sexuality?

I would claim that actually, LGBT people are just as violent and able to kill as their heterosexual counterparts. Put any man or woman in a situation where it’s kill or be killed; protect your loved ones, or give them up and fight for what’s right, or surrender. I believe that the human animal in us all, fuelled by the adrenalin in us all, will then kill or maim if necessary.

I’m not saying that Morrissey’s talking out of his ass and he’s entitled to his opinion but I do believe he’s way off the mark with this one. That said, if any one of the generation who, locked in darkened rooms and overwhelmed with depression are prevented by his words, from taking out their frustrations on society in ways that have dominated recent headlines, then I’ll be the first to bow down and join the ‘Morrissey for sainthood’ movement.

Author

Dave R

The bitter sweet pain of remembrance

Thu, 14 Mar 2013 00:00:00 -0400

Dave R writes…As you get older, parts of your life begin replaying themselves. Maybe too difficult to fully appreciate at the time, experience and a life-lived can give you the mental strength to look at them again.

Memories, may be beautiful and yet

What's too painful to remember,

We simply choose to forget.

Barbra Streisand: The Way We Were

As you get older things come back to you out of the blue. They do. Unannounced, unexpected and unwanted most of the time and usually in the quiet, more contemplative moments when you just want to switch off and not think of anything.

When you’re young, you’re busy building up libraries of experiences and memories and filling your head and heart up with trivia and absorbed knowledge. When you’re older, your memory banks are stuffed to the gills and although you may not be able to remember what you did yesterday, your childhood and later years will burst out of dusty memory files, in spontaneous clips of recollection and without apparent rhyme or reason.

So it is with me and especially concerning HIV. Not only HIV actually but almost every mistake I ever made as a child, teenager or young adult reappears to jab insistently at my conscience again.

Some of them are still too embarrassing. I just have to shrug them off with a shudder and a, ‘can’t cope with that now’ sort of thing. However others are things I never imagined would resurface and although uncomfortable, probably need to be faced.

The HIV memories though, are a special category to themselves and they’ve been interrupting my present life with unnerving regularity lately. It’s probably to do with accepting your mortality and all that sort of amateur psychoanalysis and I admit, that is a tricky concept for me but I also believe that there’s nothing wrong with revisiting horrors and traumas. I’m not looking for any sort of closure; people with HIV don’t get closure until their last breath but I find it therapeutic looking back and knowing that I can deal with it now when I couldn’t at the time.

Here in the Netherlands, the death surge due to the virus came a short while after that in the US. We looked across the Atlantic in slight disbelief, at the stories that were emerging out of New York, and San Francisco. It just didn’t seem a global threat at the time because it wasn’t happening here on the same scale. Of course people were beginning to die, especially people working in the airlines and other international companies at the same time but unless it touched us personally, we carried on pretty much as normal. Then my partner and I slowly but surely learned of friends and acquaintances being infected and the hospital, house visits and funerals began.

The first memory that came back to me recently was of a friend who was what you would call a ‘snappy dresser’, someone who took pride in his appearance and enjoyed life to the full. When his face and body became covered with KS lesions and his mouth was constantly surrounded by saliva, I remember thinking that it had little directly to do with me and still felt somehow detached. I wasn’t cold-hearted or unemotional; at that time, I just felt that this sort of thing could never invade my own life. What I do remember, is how sad it made me feel that someone so vital and so fastidious about his appearance could be so quickly reduced to those purple blotches and little else.

When he died, my partner and I were given some unimportant, small things but above all, his clothes and I still break out in a cold sweat remembering how odd that felt and how ‘wrong’ somehow. I also can’t remember his funeral and that troubles me. Maybe that will come back one day too.

What these memories do allow me to do, is come to terms with my dispassion at the time. I was naïve and I realize that now and maybe it’s a human reaction to separate yourself from reality in order to protect yourself. Soldiers at war must do it all the time.

Another awkward recollection that surfaced recently was that of a colleague and friend who calmly told me one day in the staff room at school that he was positive. I was shocked but not surprised. Of course I knew he was gay and knew a little of his personal life and although his behavior was no more risky than the rest of us, we were all slowly becoming more aware of the dangers and the consequences. He carried on teaching for quite a while and to his eternal credit, told the head of the school and school governors straight away. This memory is a positive one in that I was and still am, full of admiration of the way they handled it. These were early days and yet the school supported him through thick and thin and although he was teaching young children who had daily accidents with bleeding and bruising, they trusted him to always do the right thing and he did. I somehow doubt that school authorities would be so understanding these days and that’s really sad.

I was one of the last people to speak to him as he lay dying at home and it was his compassion to me as I struggled to hold back the tears that sticks in my memory. He took my hand, said it would be okay and that he was okay with it and then said goodbye; with meaning. An hour later he was gone. Yet in the memory that recently came back, I remember most clearly the white pimples on his face which I know now were probably caused by the medication. Strange what sort of things stick in the memory! I had to speak at his funeral in front of his friends and family, other teachers and one or two parents and it was unbearable. Needless to say, I didn’t do a great job of it and only just struggled through to the end. That still feels so bad because I’m sure he would have been far more composed had it been the other way round.

His partner was the next to go in our circle. We didn’t know him that well but had got to know him during the last months of Steve’s life. He was a young guy, cynical and street-wise and we visited him in his last weeks too. That particular memory hit me in the middle of the night sometime last week and took me back to his small, third story apartment with white walls and dozens of religious icons, paintings and statuettes filling the place with a church-like atmosphere. It was almost surreal seeing him so ill in that context but I can still see those religious symbols and still recall how ironic I found it at the time.

I recently saw a documentary about how AIDS struck the Dutch national airline KLM pretty severely in those years. The airline kept much of it hidden from the public which may seem slightly underhand now but behind the scenes, they cared for the victims and their families and went out of their way to ‘share’ the problem. The public silence was probably understandable at the time but the in-house after-care was impressive.

We had made friends with two KLM employees a year or so before and got on with them really well but they too eventually succumbed to AIDS. Those memories are luckily of good times and laughter and not so much of the details of their deaths. By that time, nobody was surprised anymore when they heard that someone in their circle ‘had it’. You and they got on with it and you did what you could when necessary. The virus had made us all into cynics with walls but also people who learned to deal with it when it happened.

That built-up experience probably saved my sanity when my partner also became ill. No details necessary here but among the memories that flood back more often than ever these days is that of driving to the hospital every day with his mother, just hoping above hope that the doctors had found something new to try. He had a PCP type lung infection and lay there, a skeletal shell of the man he used to be and there seemed to be only one inevitable outcome. He’s since told me that looking in the mirror and seeing himself as he was, shocked him into triggering a subconscious fight back which probably saved his life; plus the fact that the fantastic doctors found an antibiotic combination at the last minute which allowed him to slowly claw his way back to health. Much of that time is still a blur. More specific memories will probably emerge the older I get.

I frequently think of the effect that had on his family and friends. His sister came up from France with her boyfriend, who stood the whole time at the foot of the bed like the angel of death and didn’t say a word. There was something both weird and spiritual about that at the time but really, I don’t think he knew what else to do.

My partner’s best friend since his school years also eventually visited after putting off and prevaricating because she couldn’t cope with it. She wasn’t much use, bursting into tears and staying about ten minutes. I understood that perhaps better than he did but he never forgave her and they never spoke again. Other disappointments with other friends and acquaintances at that time aren’t worth remembering but they were there.

My partner survived, recovered to his old self and despite two serious illnesses since, is still going strong and although we eventually split up, we still have a close relationship. What doesn’t kill you makes you stronger eh!

So that’s what’s increasingly happening to me in my old age. The past drifting in and out of my consciousness like so many ghosts. I can’t shut these recollections out because I can’t predict them but then again, I’m glad of them because they allow you to revisit situations in glorious memory technicolor and re-evaluate what they meant. I still can’t remember what I did two days ago, or who played what on the TV but memories from long ago seem to pop up via a smell, or a taste, or a tune, or just in the empty quiet times between living.

Perhaps as you get older you have more of those times and your memories get the chance to sneak in because your brain isn’t so hyperactive. At first, I took it as a negative sign that I was speedily heading into senility because I remember my grandmother doing the exact same thing but now I’m glad that these things come back because we never take photos at the time; or perhaps that’s exactly what our memories are.

Author

Dave R

I took my ego to a gay bar

Mon, 04 Mar 2013 00:00:00 -0500

Dave's big adventure: "with HIV, sometimes you have to grab life by the horns and face it head on. However, low self-confidence levels can take you one step forward and two steps back. The trick is not letting the bastards grind you down.

I don’t know what possessed me but it was a Friday night and I’d been stuck inside for what seemed the whole winter. I had a severe case of cabin fever and had to get out. It was nine thirty in the evening; a time when I’m normally fixated on the box and longing for my bed because the feet are playing me up and I feel like crap. Then out of nowhere came this urge to go out and meet people - gay people.

There was another motive. I’d been contacted via the internet by an attractive man just a couple of years younger than myself. Cultured, interested in the arts, music, seen a bit of life and wanting to get to know someone at least superficially before hitting the sack; you know the type. He’d expressed interest in a meeting and said that he was in the bar on Friday nights and specifically, this Friday night.

Now despite my dotage, I’m not stupid and fully realise that that is not a date under anybody’s definition. He hadn’t arranged a time, so clearly wasn’t so interested that he wanted it contractually bound. It was a vague, ‘maybe I’ll see you there’ sort of thing. Nevertheless, it was the deciding factor and I decided to give my need for social contact and the possibility of something more a go; you should never give the needy half a chance!!

The last time I’d been to a bar in Amsterdam was probably two or three years ago. I can’t be more specific because my memory about that sort of thing’s shot to pieces these days. One of the reasons is that the bars are soulless deserts until about ten thirty at night and don’t get busy until after the witching hour. By that time normally, I’m in a medication-induced half-sleep and battling the demons in my feet and legs. This particular evening however, I was wide awake; in less discomfort than normal and seized by the need to take advantage of every window of opportunity my neuropathy gives me. Nevertheless, I knew that just getting to the nearest bar wasn’t going to be easy, requiring some walking and a tram ride and taking the walking stick wasn’t an option, so I took an extra pain killer just in case.

Now I’ve learned a thing or two over the years and in preparation, gave myself a serious talking to. I awarded myself ten self-confidence, bonus points to start off with, with the aim of hitting more before the evening was over and knowing that point zero was the time to come home. For those who don’t understand, these are the single guy’s imaginary boosts to his confidence designed to make him feel good enough about himself during the evening ahead and help him through the first hour or so, or at least until drunk enough not to care anymore.

Then came the hour of primping and preening in the bathroom. Don’t laugh, the older you get, the longer it takes to achieve even looking your real age! So nose hairs, ear hairs, wayward eyebrows, goatee and side burns were all dealt with. Showering, scrubbing, hair washing and personal hygiene all scrupulously done.

Clothing was the next problem. It’s still winter, so showing off the hairy chest under the T-shirt ‘V’ wasn’t an option and I needed a top jacket that would have enough pockets to stuff the cap, gloves and scarf in when I got there. I settled for good-fitting jeans and a shirt big enough to hide the spare tire. Both jeans and shirt were dark coloured. I wanted to blend in, not stand out like a geriatric peacock. So, finally satisfied that no matter what I did, I wasn’t going to improve the best I could be, I set off on my little adventure.

I was heading for a bar that I thought would be the most comfortable and least intimidating for a first venture out in a long time. From what I remembered, the patronage was a mix of bear types, bar flies, bored tourists and Asian boys with their mentors, plus the odd complete psycho to liven up the proceedings. More importantly, it was generally a slightly older crowd and I wasn’t going to expose my fragile ego to a bar full of narcissi (is that the plural of Narcissus?)

When I arrived outside the bar the feet were playing up, the butterflies were doing the fandango in my stomach and I nearly turned around and went back home. I had to lecture myself; ‘For God’s sake, you’re 63, not some virgin teenager hitting the scene for the first time!’ The virgin teenager in me was screaming to get the fuck back home but bravado won out and I walked in.

Now body language is everything during the first two minutes when you walk into a bar. I knew this and had rehearsed the casual confidence and natural half smile that were necessary but still stumbled in with two left feet; fixed my rabbit-in-the-headlights stare on the row of stools at the bar and flew, jet-fuelled onto the nearest vacant stool. One of my ten self-confidence bonus points already gone and the evening hadn’t even begun. Not a great start and the disinterested glances that greeted my arrival seemed to go on for hours. Nevertheless, once ensconced on my stool, I felt more at ease and ordered a beer from the grizzled barman. The last time I’d been here, this barman was on my wish list for Christmas but time takes its toll on us all,l I guess.

A beer wasn’t a good idea considering my medication but it was ordered before my rational brain kicked in. Oh well, one wouldn’t harm. Actually, after five minutes, most of my fears were ebbing away. One thing about gay bars in Amsterdam is that they never change, never! The bar owners are too tight to invest, the few tourists that still come find it quaint and the local clientele is not that demanding. The only thing that moves with the times is the price of drinks. Three and a half euros for a small beer; good grief!

My favourite begin to an evening had always been perching on my stool, with my back to the wall and with a good view of the circus. Taking time to case the joint and see what, who and where was essential, especially if I was on my own. See but not be seen was the motto, at least in the beginning. I began by looking around to see if internet guy was here and then realised I wasn’t entirely certain I’d recognise him if he was; there’s a certain generic look that I find attractive but lots of guys have that look and no matter how much I tried, I couldn’t really recall his profile face clearly. I had to hope that he would find me first. Actually, the bar that Friday was not exactly teeming with ‘my types’, so I was pretty sure I hadn’t missed him.

There were two guys whom I recognised from twenty years ago. The difference being that now they were both bursting out of their T-shirts like Arnold Schwarzenegger and were probably just as old. Always intimidated by muscle Mary’s, I bitchily concluded that these guys were steroid queens but nevertheless still slumped over my bulging stomach on the stool. One more point lost!

There was a clique of a few really young guys acting like humming birds round a feeder. They were hyperactive and alternating between frenzied chatter amongst themselves and flitting to the bar to flash impossibly long eyelashes at whoever might buy them a drink.

Another group was gathered round the pinball machine. These were lads in their late twenties; smartly dressed, short hair and street savvy. These guys are at the peak of their game and know their own pulling power. I used to be like that for a few short seconds in time. However, that didn’t shake my confidence; I’ve never been into younger guys so I didn’t see them as intimidating, until that is…

…I’d been staring for too long. I realised it at the very second that one of them turned to meet my gaze but it was too late. The lip curled into a Presley sneer and the eyes narrowed, gimlet-like, into bullets of sheer venom. As he turned to inform his friends that the perv in the corner was eying him up, another self-confidence point bit the dust. The collective group glare that followed nearly lost me another point but by that time I was ordering another beer I shouldn’t drink and considering flight.

For the next few minutes, I counted all the spirits bottles hanging behind the bar; fixated on the mechanical porn on one of the TV screens and tried to regain some self-control. Luckily I was rescued by a tap on the shoulder. Thinking it was the guy from the internet, I turned optimistically to greet my saviour. It wasn’t that guy but it was someone else that I half-remembered from years ago and he looked pretty good! After confirming mutual recognition, I bought him a beer and he sat down next to me. My twenty five year old internal man-about-town, returned and the next half an hour was spent chatting, catching up on mutual friends and subtle but unmistakeable flirting. The restoration of a point to my confidence chart came from the fact that he was also flirting with me! And he wasn’t drunk and didn’t seem to have any hidden agenda; yippee!

Okay, to cut a long story short; I’d repressed my needy gene, brought about by a long time without this sort of contact and was playing it cool. I was proud of myself because everything was in control and we had clicked. You know that feeling when it’s just right and you know you’ve read the signs and body language correctly. It got to the point where I was musing on the evening’s end and what I’d do if internet guy walked in. Overconfidence; fatal!

He asked me if I’d like to get out of there and go back to his place nearby. I contained my excitement and feeling like that teenage virgin again, demurely accepted. Trust my rational mind to choose that moment to poke me in the conscience…’Ahem, aren’t we forgetting something!’ I swear to God, I got icy chills but came out with it anyway. Lowering my head close to his, I uttered the words!

“By the way; I think you should know; I’m HIV positive; is that going to be a problem?”

I honestly thought it wouldn’t be but that was completely my own fault. By his look and his conversation, I’d sort of assumed he was too. Big mistake; never judge a book by the cover! He recoiled as if I’d thrown my beer over him and I could see him struggling to remain politically correct:

“ Uhm…yeah, well you see…I didn’t realise…uhm… no I can’t do that, I’m sorry. See you around.”

Two immediate confidence points lost right after the look he gave me and one more after the excuse and I felt as though someone had hit me with a sledge hammer. I was furious but not at the fact that it actually was a problem; that’s a risk we all have to live with but at the lily-livered, cowardly response! This was a guy who had lived in Amsterdam for most of his life; was not much younger than me and must have lived through the HIV/AIDS years and yet he couldn’t get away fast enough, despite apparently finding me sexually desirable just five minutes before. Talk to me damn you!

Only five bonus confidence points left and they were barely keeping me from running out of the bar in hysterics. I decided to wait another half an hour to see if internet guy showed up and had prepared every available barrier to that being a potential disaster too. This time, I would ask him right out first but even then I knew that I’d still have to confess sooner or later. The eternal optimist kicked in then and the third beer was ordered. I was feeling somewhat woozy but nevertheless perversely proud of myself. I hadn’t always disclosed at the right time and realised that I’d overcome a subconscious barrier without really trying. I felt I’d be telling every time from now on; not that the opportunities were falling at my feet but there you go, three beers can work wonders and blunt edges.

It was getting busier but it remained the same eclectic mix that I was comfortable with. I accidently caught the eye of the younger guy from earlier but this time my lip curled first and he got ‘the look’ full in the face. Revenge is a sweet bitch, however small the victory.

Suddenly my sixth sense alerted me to the fact that I was being watched. It was a guy at the other end of the bar and he was staring unashamedly. Not bad looking, if a little worn around the edges. Now I knew I looked more than a little rough around the edges too, maybe there was a match here. I casually picked up my glass and putting on my slightly tipsy, ‘come hither’ look, stared back, more meaningfully. I think the penny dropped when his head suddenly lolled forward. He recovered quickly but the glazed eyes gave him away and when he dribbled as he leered at me, I got the message; he was completely out of it. Another point lost; I was being seduced by someone who needed to be blotto to do it; great boost to the ego that!

Okay, enough already. I looked at my watch and realised I’d been there for less than two hours. I got up, put on my coat and headed for the exit. Of course, internet guy chose that very moment to arrive and despite looking me full in the face, he walked right on by. With my remaining confidence points falling to the floor like leaves in autumn, I stalked out and went home.

It was okay, really; c’est la vie. It sounds like a good old, self-pitying rant but the evening had actually been good for me and I quickly realised it. I’d confirmed my place in the world at that snapshot in time and was okay with it. You’ve got to laugh at life sometimes, because it can never be a Hallmark greeting card: it wouldn’t be so interesting if it were.

Author

Dave R

The Gay Scene: “The Biggest Suicide Cult in History”! Say What Now

Thu, 21 Feb 2013 00:00:00 -0500

Dave R writes...more and more influential figures from within the community are speaking openly about behaviour excesses on the gay scene, leading to yet more HIV infections. However, is it justified to call it a collective suicide wish?

It's morning, I open my eyes
And everything's still the same
I turn to the guy who stayed last night
And ask him, "What's your name?"

‘So Many Men, So Little Time’: Miquel_Brown 1983

I must admit, when I read this title quote by the much-lauded, British performance artist and TV personality David Hoyle, I thought it must be something from a late eighties politician and one not exactly gay-friendly. In fact, the very gay David Hoyle said it in 2007, on the day before World Aids Day and on the flyer for a night at the Royal Vauxhall Tavern in London, was added the following text:

'All over Vauxhall they are fucking without condoms', it reads. 'All over Vauxhall they are dancing till Tuesday morning. All over Vauxhall they are taking G, K, C, V and E [that's GHB, ketamine, cocaine, Viagra and ecstasy]. All over Vauxhall they are dying.'

Depending on your viewpoint, this was either in your face, plain speaking by a prophet with street cred or the outburst of a gay artist, exhausted and frustrated by the hedonism of the scene in which he performs?

Let me try to put this in context. The numbers of new HIV infections in the UK have remained more or less the same between 2001 and 2011, despite awareness and sexual health education having reached practically all young people. So somehow, the message which is understood by everybod, is not being translated into action between the sheets. Despite the current youth culture being brought up with the mantra that safer sex saves lives, HIV cases are just as high as 15 years ago and are being fuelled by rampant alcoholism and drug abuse within the gay scene itself.

Now I can’t judge; I was young too once but sex, drugs and alcohol are a powerful cocktail and the potential for harm is self-evident on the gay scene. In Britain particularly, there is a cultural expectation amongst young people, both straight and gay, to get wasted on either drink, drugs or both. Sex is the climax to the evening but by that time, rational thought is by definition diminished.

There has been a spate of drug-induced deaths in gay saunas and clubs recently but even this hasn’t deterred people from giving in to peer pressure and the weight of gay social expectation. More stories are appearing of horrible situations where a partner who has been on GHB suddenly dies straight after sex. Apart from that and despite the lurid publicity many young people also seem to agree with the following from Time Out:

“Several younger gay men I've spoken to in the past few months have argued that HIV is no big deal. They've heard about combination therapy, they've seen the ads with muscular men climbing mountains and they've jumped to the conclusion that life on anti-retrovirals is one long picnic. There are even the fatalistic few for whom contracting HIV is seen as some sort of rite of passage, or a stepping stone towards having lots of unprotected sex without having to think about the consequences.”

On the other side of the coin, Hoyle’s sentiment from 2007, is echoed in a recent article by Matthew Todd in the Guardian, titled, ‘The Roots of Gay Shame’. He says,

“If you didn't think you were worth caring about in the first place, why would you care if you caught HIV?”

The rise in HIV infections amongst older guys, shows that the problem is not confined to the ‘live hard, die young’ generation. In the older age groups, the causes may lie more in a rejuvenated sex life thanks to erection enhancers than the gay scene in which even the fittest older guy struggles to keep up. The risk taking, though, is proportionately as high. Maybe the older you are, the stronger the feeling that you’ve dodged the bullet so far, why should it change now? My HIV-specialist shakes his head, bemused at the sheer lack of logic regarding new infections in the 45+ groups. After all, it’s not as if they’ve not seen what can happen and no age group is better educated, so what’s going on in the gay psyche, both young and old, that shuts out reason at crucial moments?

"Do we really have an uncontrollable problem that nobody’s talking about?"

Was David Hoyle right? Are we part of a massive, subconscious suicide cult? Do we really have an uncontrollable problem that nobody’s talking about? We can surely assume that if it is happening in UK cities, other urban conurbations across the world will be similarly affected.

It may not be helpful to take the moral high ground either. Many people, will be quick to jump on the ‘serves ‘em right’ bandwagon and people living with long term HIV may also wag stern fingers but it can’t be as simplistic as that. Maybe it’s good that LGBT insiders like David Hoyle, are criticising behaviour from within the scene, however much it sounds like he’s betraying his own by speaking to the world at large. However, he’s not alone. All sorts of people from club owners to social workers are quietly bemoaning the consequences of unbridled hedonism and asking for it to be talked about at least. The point is that it’s not done to be a whistle blower in any social group but in this case something is clearly going on within the scene and could threaten resistance to the virus if it gets out of hand.

To my mind, however tempting it may be to come over as, ‘outraged from Amsterdam’, this isn’t a cut and dried moral issue. Very few people actively set out to catch the virus and there’s never been so much information available on every social platform. So why is a substantial group of LGBT people rushing lemming-like off the cliff despite knowing a hundred reasons not to?

I’ve got to disclaim here: many people go out socially, have a few drinks, meet someone and have safe sex with them – everything in moderation. Not everybody is socially reckless and having unsafe sex; the virus would be out of control if that were true. So I’m not talking about those who follow the ‘rules’ and live fulfilled and happy lives but the rise of a hedonistic culture which leads to a carpe diem attitude and if they get something, too bad. Enough people are spreading the virus to keep the statistics at a stable high. It’s almost as if for every ten converts to safe sex, ten ‘refuseniks’ emerge to take their place and then the stats never improve.

It surely has to be a social issue, with a very strong sexual component attached. You’re bought up in a society that still discourages homosexuality and encourages normality. You discover you’re gay and are immediately confronted with dilemmas over what to do about it. You may have a tough time with your family and at school and via school peer pressure, may take to distractions like drugs, alcohol and smoking even before you hit the gay scene. Heterosexual youth culture sees getting wasted as a rite of passage and then, with hormones raging, you take your first tentative steps onto the gay scene, where your insecurities are quickly masked by the availability of everything in the candy store. You then learn how to mask rational thought with excessive drink and party drugs and before you know it, your trousers are round your ankles, without a condom in sight.

So that’s maybe how it starts but god knows, there are enough social messages and pressures to make you think twice, so why do so many ignore them and wilfully seeking out yet more thrills without brakes. Even ‘normal’ STDs like, gonorrhoea, chlamydia and syphilis don’t stop them in their tracks: antibiotics for a few days and then back on the scene but it’s only a matter of time for many before the law of averages kicks in and hepatitis and HIV take their disease dossiers to the next level. Even then (and here lies the great unspoken problem) people aren’t deterred by disease; as long as it doesn’t kill them, they carry on regardless.

Why do they do that? Very few people can be sanctimonious about it; most people with HIV have slipped up somewhere and not just once and rejected reasonable behaviour. So what drives us to indulge in irresponsible behaviour; irresponsible for ourselves and irresponsible for others?

Maybe we underestimate what my ex-partner used to call, ‘the power of the cock’ and the nature of the sexual act itself. We all know that there’s a point of no return with sex and especially sex with strangers. You’re condom-aware throughout the encounter until the point where you’re going to do it or not and then desire, lust and your sex-drive determine your decision making and sometimes, the sexual urge is just too strong. We’re built that way by nature; remember the original idea was to beat off the competition and procreate like bunnies to extend your own section of the gene pool. It’s one of the most powerful human autonomic reactions and in the moment, very difficult to resist. If you have to break off to put a condom on, not only do you lose the moment and a part of the excitement but you have to have enough willpower to overcome ‘the power of the cock’.

"All you want to do at that point is have sex; the urge can be irresistibly strong, especially if fuelled by GHB and the rest. It takes a strong mind to unwrap both condom and lube packets and roll it on, with every chance that your bee has buzzed off to another flower . . "

For many, the very act of putting a condom on is enough to lose them their erection - and nobody likes that. So although we know we should and must, it’s not easy and your mind has to be at its most rational to do it every time. Put yourself in the situation where you’re on recreational drugs to get you through the night, possibly drunk as a skunk and you’ve exchanged ‘the look’ with a hottie heading for the darkroom. All you want to do at that point is have sex; the urge can be irresistibly strong, especially if fuelled by GHB and the rest. It takes a strong mind to unwrap both condom and lube packets and roll it on, with every chance that your bee has buzzed off to another flower. Morally we all know it’s wrong but it happens and the blame has to be shared between the person himself and the social pressures around him. It’s maybe those social pressures; the drink, the drugs and the social mores, that allow sexual impulse to overcome rational thought but it’s just as likely to be your own biological urges.

I think that maybe if we’re being realistic we will never achieve 100% safe sex behaviour and maybe we should be satisfied if the current HIV new infection statistics for each country remain stable. Aiming for the total eradication of HIV transmission, as HIV organisations trumpeted last year, can only come as a result of a cure or a vaccine because people’s behaviour isn’t going to change, however much you confront them with the facts.

This sort of thinking is, of course, blasphemous in the eyes of health organisations and socially conscious HIV groups. We feel we have to strive for the elimination of HIV but considering social behaviour in certain groups across the world, I’m not sure if we can by trying to change behaviour alone. Moralists can preach that we need to return to taking personal responsibility for our actions but take a step into a modern gay club and you can count on the fingers of one hand how many eyes that stare at you aren’t glazed, or hyper active. Party drugs rule! Pragmatism and not preaching is what we need.

David Hoyle and others see it differently. They believe that there’s something much deeper behind it all. It’s claimed that the apparent lemming-like behaviour amongst our youth groups, stems from shame and self-loathing, rather than outside influences like drugs, drink and hormones. It sounds like a very old-fashioned concept, stemming from the days when staying in the closet was more the norm than the exception. LGBT society was bombarded with messages that it should be ashamed of itself and its behaviour was disgusting to decent, god-fearing folks. It’s not something that you would expect to hear in these days of gay marriage and Gaga birth certificates that prove we were born that way. So what do they mean when they link HIV infection to shame and loathing on the gay scene?

The theory goes that internalised shame leads to compulsive behaviour and this is applied to LGBT people in the following ways:

Children are brought up to believe that sex and sexual relationships are wrong and sinful and gay sex sends you immediately down to Satan’s sin bin.

When they’re old enough to make relationships, society barks at them from every corner like rabid dogs that any relationship they might make has no value and actually causes a breakdown of society.

They learn that some people hate them enough to make their lives a misery of social network sites, or even attack them physically on the street.

They see cases of teenagers killing themselves out of horror at what they’ve become.

So it’s believed that people turn to compulsive behaviours to either compensate for, or hide from, their real selves. People become addicted to drink, drugs, smoking, porn and promiscuous sex, etc. This then leads to situations such as those on the gay scene, where safety is found in numbers and solace in collective substance abuse and sex. These feelings then become so embedded, you hardly know they are there. Becoming infected with HIV becomes a sort of culmination of the lifestyle and when it’s too late to turn back, people get a sort of perverse pleasure in the fact that they were right all along and their shame and guilt has led to this ‘deserved’ punishment.

The British and gay pop singer Will Young claimed recently that his own shame at being gay led to dysfunctional relationships and an addiction to porn. Now Will Young seems like an okay guy and someone fairly typical of his generation but is his claim purely personal or representative of many?

On the face of it, you would think that most of the sorts of behaviour that go on in many areas of the ‘scene’ are hardly symptomatic of shame and guilt. It looks to be more the result of a sort of arrogance and fuck you attitude which young people have had since time immemorial. Add to that the feeling that you’re immortal when you’re young and you have to ask whether guilt plays any part at all, never mind a subconscious collective suicide wish!

That’s the theory and although I may have described it far too simplistically it sums up what many people believe. Although I’m sure that many people carry guilt around with them like a Prada purse and some of them become compulsively obsessive; it by no means explains the problem, except as a sort of moral judgement based on amateur psychology. Why can’t we accept that young straight or gay people these days are just out for a good time because with the pressure that society brings to get a job and have more ‘stuff’ than the next man everybody needs an escape?

"When their own ‘elders’ preach the plague years and bitter experience and every gay site on the planet tells them to avoid HIV by all means possible, of course a percentage are going to rebel and do their own thing . . "

Possibly the only difference between gay and straight twenty-something’s, is that three letter acronym HIV. It’s such a loaded term that the pressure from society that it’s evil and morally reprehensible, leads to what all youngsters have always done; they do the opposite! When their own ‘elders’ preach the plague years and bitter experience and every gay site on the planet tells them to avoid HIV by all means possible, of course a percentage are going to rebel and do their own thing. After all, they’re immortal, right!

Maybe we need a more pragmatic approach to unsafe sex; accept it will happen and aim research at newer and more direct forms of prevention (effective anti-viral lubes for instance). Ease up on attacking the morals of those who indulge in reckless behaviour and concentrate on creating barriers to the virus, while at the same time taking active steps to change people’s recreational stimulant use. Stop treating HIV prevention as a moral issue maybe and concentrate on killing the virus.

It’s no good lecturing young people that they don’t know what they’re getting themselves into because a significant proportion will get themselves into it whatever you do. At the same time, I’d wager there isn’t an LGBT person on the planet who hasn’t felt guilty, or ashamed, or angry at some point, at the cards they’ve been dealt. But by no means have all of them ended up with HIV through reckless living as a result.

The title of this article is a brilliant sound-bite but in my opinion not very strongly grounded in the truth. I’m beginning to believe that the best policy is to mop up afterwards, do our best to give unbiased advice and a safe environment and go for the throats of drug dealers and exploiters just interested in making a buck. It may sound heretical to many but we’re all aiming for the same result it’s just the approaches that are open to debate.

Author

Dave R

Sharing responsibility for your treatment: you know it makes sense

Thu, 14 Feb 2013 00:00:00 -0500

Dave R writes...many people take their daily HIV and other medications as prescribed plus vitamins and supplements in the belief that they’ve got it all covered. However, how much do we really understand about what goes into our system?

‘Knowledge is power only if man knows what facts not to bother with.’

Robert Staughton Lynd

How much interest do you take in what you’re swallowing every day? Okay, wrong article: stop sniggering at the back of the class!

No seriously, do we know exactly what’s in the medications and supplements that we take and do we know what they do to our body and exactly how they affect our health? Of course we don’t and nobody reasonably expects you to. However, we do tend to bury our heads, ostrich-like, in the sand and blindly accept whatever we’re prescribed without having any idea what sort of risks and side effects are involved. Even with innocent sounding things like supplements and vitamins, we throw them down our throats in daily rituals because they sound good and should do us good but do we really know if that’s true?

On top of all that, we take recreational things like cigarettes, alcohol, sexual performance enhancers and anything else that will keep us up all night with the in-crowd. A hundred years ago the human body had never been exposed to such a cocktail of chemicals but of course more people died from disease and arguably had far less fun.

Speaking from personal experience; when I moved from one city to the other my HIV details somehow got lost along the way. I didn’t find this out until later, when I started wondering why certain combinations of drugs weren’t working for long and why my HIV-specialist was experimenting his little heart out. I casually mentioned that I shouldn’t be on one particular drug because I had been found to be resistant to it in my last town. He knew nothing about my resistance history but because the viral load wasn’t anywhere near high enough to measure it again, we had to go on until the right combo was found. Needless to say I was more than a little pissed that important details could be lost but had no option but to work with him. That’s the reason why I’ve had six antiretroviral combinations over the years but it did persuade me that from that point on, I was going to leave nothing to chance and keep a careful eye on what was prescribed for me.

I was still given things that did me harm (Videx and Kivexa for instance that brought rampant neuropathy with them as a freebie) but at least I quickly found out why. When the specialist put me on Truvada as part of a combination for the third time, after my kidneys had started showing alarming figures the second time; I was able to stamp my foot and ask him politely if this was wise. I’ve successfully been on a double-boosted regime for some time now (instead of the normal triple therapy) but when my blood pressure started soaring through the roof and my cholesterol figures were way too high, I was able to produce details of the right studies that showed that this was a result of the drugs and not a louche lifestyle (honest to god) and from that point on, the specialist knew that I wasn’t going to let anything more slip by without me knowing the risks.

The neuropathy was largely dealt with by neurologists and the circus started all over again. I was put on drugs with nasty side effects but again, because I’d done my research, I was able to recognize the problem, change the drugs and get the best possible pain relief for me. Much to his visible irritation, I’ve unfortunately had to prove the neurologist wrong on several occasions since by producing up to date evidence as to why this that or the other just didn’t work. It sounds as though I was deliberately aiming to trip the doctors up but that absolutely wasn’t the case. I realized early on that they’re just human; they have hundreds, if not thousands of patients to deal with; they’re under immense pressure from time constraints, patient numbers and their hospital administrators and mistakes can be made.

The point is that most people don’t question their doctors; it’s just not done. They were brought up to respect the medical profession as some sort of untouchable divine force. That has changed and has to change. It’s the age of the internet network interaction and patients have access to possibly more information than the doctors themselves have time to read. The old adage that you should never believe what you read on the Net and other doctors’ standbys such as ‘a little knowledge is a dangerous thing’, just aren’t pertinent anymore.

To their credit, doctors are beginning to realize this and medical training schools lay much more emphasis on the concept of a patient/doctor partnership where knowledge can come from a variety of sources. It’s logical really; if you only have ten minutes for your doctor’s appointment, you won’t achieve much if the doctor has to explain your disease and the drugs he or she prescribe to you in detail in that time. That’s why, you walk away with a prescription but with little idea of what it’s going to do for you.

Medicine packaging includes lengthy pamphlets issued by the drug companies but they are designed to cover every option and their asses in case of law suits, so you will be faced by an encyclopedia of possible side effects which may worry you unduly and are too confusing to take in. Little wonder that most people do as they’re told and take the drugs according to doctor’s orders. If it goes wrong later, then that’s a problem for another day.

There are real benefits to doing your own research before the doctor’s appointment:

You can find out why you have a problem, what the usual or possible cause is and what’s usually done to fix it.
You can then approach the doctor with a certain amount of background knowledge and providing you don’t stuff it down their throats, or come across as arrogant, that will be appreciated because it saves so much time.
Most of the time, if you’ve established a personal rapport with your doctor, he or she will appreciate that actually, you’re taking a load off their shoulders. They can correct inaccurate assumptions but they won’t have to start from square one and the treatment will go ahead much quicker.
You’ll be surprised how much the doctor then begins to respect you and your limited knowledge and the more research you do beforehand, the more it becomes a real partnership which makes the most of appointment times.

If you also bear in mind that mistakes can be made and resign yourself to the fact that shit happens and it’s no use flying into a hissy-fit about it, you’ll achieve health improvement much more quickly and what’s more be psychologically much more at ease with the process.

The same applies to the things we take which are largely outside the doctor’s control and that means, vitamins, supplements and many alternative therapies. Because we generally have to pay for these ourselves, you would think that we would be much more discerning about what we actually take and whether we’re actually just pissing our money away because things aren’t being absorbed properly. Of all the treatments meant to improve our health, vitamins and supplements are the most prone to advertising chicanery and the hard sell.

It started in the first decade of HIV/AIDS, when people were dying because the official treatments couldn’t save their lives. People grasped at any straws that were flying about in the wind and bought vitamins, herbal concoctions and supplements out of desperation. Rumors that this, that or the other, was a wonder supplement spread like wild fire and many people were taking 20 or 30 extra pills a day on top of whatever their doctors had prescribed. Some may have helped, others not but the point is that for us, the supplement industry boomed and continues to this day. It’s happened throughout history; the biggest money makers in the middle ages were the quacks who roamed around selling ‘cures’ for the plague to the desperate.

Now many supplements and vitamins can help you enormously if taken the right way but it’s possible that we are taking far too many things which aren’t doing us any good because we feel we should, or we’ve read the latest article about them, or because we daren’t stop in case the unquantifiable benefits disappear. In this way, many people still take masses of vitamins and supplements which build up and are rarely reduced.

We need to take responsibility for our own actions and again, the internet is an invaluable source of information. Try to steer away from commercial sites promoting their own products – they just want your cash - and read trusted sites which will tell you how to make the best of vitamins and supplements without wasting your money. You can also ask your HIV specialist or home doctor to test you for vitamin deficiencies but also other things like testosterone and cholesterol. In this way, if you’re results show that you’re already self-sufficient in those things, you don’t need to supplement. Many people living with HIV are deficient in certain vitamins but it’s always worth confirming that by a simple test. After that, do your research and base your purchasing decisions on the information you’ve found. It’s also advisable never to rely on one source for information; always get it corroborated by one or two other reliable sources.

Exactly the same applies to alternative therapies. Many people living with the complications of HIV, plus other conditions, try one or more alternative therapies to see if they help. There’s a feeling that if you’re avoiding chemicals in some way that alternative treatments are somehow better for you. If there’s a therapy (for instance, massage, acupuncture, aromatherapy, yoga and countless others) that fits your bill and genuinely helps then of course that is probably better than ingesting pills. However, although you may feel that you know what you’re doing, checking it out with your doctor first may not be such a bad idea. There are pitfalls and traps on the alternative therapy circuit too. Countless clinics will make exaggerated claims to be able to help, or even ‘cure’ your condition but it’s worth remembering that these are private businesses that are out to make money and your interests may not come first.

It’s always wise to check out therapists to see if a) they’re qualified in the field (and not just a vague, printed qualification from an unknown university, in a frame on the wall) and b) what their track record is like. Again, the internet and social media are excellent sources of information but even there, unscrupulous operators can log in on forums under a pseudonym and make wild claims of how brilliant their product is. If you’re going to give out your hard earned money, it must be worthwhile doing your homework first – there are so many shysters out there who are only interested in your bank balance and not your health.

So the point of this article is not to lecture people about the decisions they make but to encourage people living with HIV to be a little more responsible for their own treatment, whatever form that may take. It’s the age of rapid information exchange and although not all information is trustworthy, there are enough serious HIV sites to provide you with all you need to know about living with the virus and its complications. The medical profession has never been under such pressure from all sides and the rise of aggression in the waiting rooms and hospital departments show that patients are becoming frustrated too.

However diligent a health professional may be, he or she doesn’t really know you and how your body is reacting to medication or treatment. Mistakes can be made and if we want the best possible help for our conditions we should really be prepared to take some of the responsibility and acquaint ourselves at least with the basic background information. In that way, we’re helping our doctors make better decisions because we can fill in the gaps that a ten minute consultation won’t allow. If you’re concerned that you have an unexpected problem and know that others have experienced the same things, you can take your evidence and point this out to your doctor, or be reassured that you’re not alone. You’ll be amazed at how much more seriously they will take you and how much more directed your treatment will become. Doctors rely on a lot of guesswork based on their own knowledge and experience but you can make their task so much easier in your own case by learning what’s normal and what’s abnormal for your body. This is how partnerships are made and how you can actually make your doctor your friend, if you approach it in the right way.

The medical profession is learning that the internet can be an ally and a useful tool; surely we can do the same; it’s in our own best interests.

HIV medications, doctor patient relationship, HIV knowledge, vitamins and supplements, alternative therapies

Author

Dave R