I decided yet again, it was about time I ‘looked at life from both sides now’ and stopped moaning and bitching about my lost youth. That feeling lasted for the two hours between waking up with the nerve pain, to taking the tablets to dampen it down. In between, I had to take my HIV pills, eat something to cushion the chemical blow and take my daily vitamins. I rattle like a tin of dried peas before lunchtime but it’s preferable to staggering everything over the whole day when I have to set the alarm to remember when I need to take what. Besides, I have to repeat the HIV meds and the pain killers in the evening anyway. How my kidneys have survived all these years...

Anyway, I digress...I get these rushes of optimism and yearnings to look for the bright side of life every now and then. It’s nagging guilt at wallowing in self-pity that causes it but generally those moments of gung ho, up ‘n at ‘em enthusiasm don’t last long and the daily grind kicks in again. However yesterday, I got as far as jotting down things that make life not so bad after all and today when I looked at the list again, I thought there might just be an article in there. Apart from that, I often find that the therapeutic elements of writing mean that you start off with a dilemma to muse over and at the end you convince yourself; so, working on the premise that I could maybe convince myself to see life in a brighter light, I started typing. I’m sure some people will be saying that that’s pure self-indulgence and no reason to impose my scribblings on others but I know I’m not the only one living my life and there’ll be others who will know exactly what I mean (I’m ducking here!)

I just felt that getting older and well-worn must have some benefits or Mother Nature would have built in legalised euthanasia from the beginning. Isn’t it funny, when you’re 7, you long to be 12; when you’re 12, you long to be 22 but then it goes into reverse and when you’re 62, you’re trying to drop decades! So kids, don’t rush to grow up too soon; the benefits I’m about to describe are only crumbs from the cookie really but hey, they’re better than nothing.

So, let’s see. I’m going to shrink the demographic even further here and just talk about those who’ve worked all their lives and are retired; or those who have been forced into early retirement due to poor health. If you’re still working: a) kudos to have physically survived so long in the workplace and b) try to cherish it; it’s social contact, it’s keeping your brain and body going, it’s bringing in much needed cash and it’s a thousand times more rewarding than sitting at home. Convinced? Probably not. But if you are sitting at home, whether voluntarily or not, there are plusses!

For instance, you wake up and you can do what the hell you want: within reason of course and depending on financial and health restrictions but you’ve finally got out of the clutches of the Man and his roller-coaster, work-till-you-drop ride and your life’s your own.

You can get up when you want: though it takes years to get rid of the guilt that you’re lying in bed much longer than the working world!

You can decide whether to shave or not that day (ladies too!) or grow a ‘tache, or beard, or goatee. Nobody’s going to see the scraggy first two weeks, so go for your inner woodsman but take it easy on the hair dye! There’s a lot to be said for the rugged Grizzly Adams look.

You can sit on the toilet for as long as you want; though you may be back more frequently than you might wish later in the day and probably at night too. You can even fart yourself a symphony if you’re so inclined (though any live-in partners may have something to say on the matter).

Your home can become your own little Neanderthal, man-cave and the socially required suits, ties, combed hair, male grooming and gleaming teeth, can be binned until you need to make an impression again. That said, the first time your conscience and the mirror ask you where your self-esteem has gone, may prick your conscience. After all, didn’t your mum teach you that cleanliness was next to godliness? It’s fun to be a hobo for a few days but hey, we’re gay, we’ve can’t let the image go completely! To the grave in Armani...I wish!

When you do finally stagger out of the house; the world need not be such a bad place after all because there are certain perks to be found, you just have to acknowledge them. You don’t have to rush anywhere for instance, or do something at any given time. If you do happen to mosey into the supermarket, a certain visible decrepitude will cause most (not all alas) staff members to address you politely and offer you senior discounts (“How very dare you! Do I look that old!”) You’ll grab any offers out of their hands of course. Cashiers will be more patient as you grub around for your reading specs and the necessary correct change and even force a smile when you thank them and a glare over your specs at the ‘tutters’ further back in the queue should teach them to mind their manners. If the shelf-fillers, or produce packers don’t give you the respect you deserve, then never forget the: - “I remember when I was your age...” or the, “things were so much better when I was young...” bombs in your armoury. Smart arses hate those! Failing that, throw a good old tantrum. Everybody wants to steer clear of senior citizen, shopping aisle rage. It feels so good to play the age card and let rip every now and then...blows the cobwebs away! You don’t need to buy as much ‘stuff’ while you’re there either. A few rolls of toilet paper are probably enough and single food portions and airport security sized deodorants are the new marketing rage; win, win for us.

Having survived the shopping trip and reached the safety of the cave again; you can take a well-deserved nap in the afternoon, or if you’ve got the energy, go to an afternoon showing at the cinema in the safe knowledge that it will be less busy and not full of screaming kids. If you turn on the box; who’s going to care if you doze off in the middle of a show; or if your book falls off your lap; you know the endings anyway! That’s perhaps the greatest benefit of having lived a bit; there aren’t many story lines you haven’t already seen or read and you can revel in your own smirking cynicism when you predict what’s going to happen!

Having been thrifty at the shops, you can even turn your attention to changing from being a candidate for ‘Super Insane Hoarders’ on Bravo, to getting rid of three quarters of your shit at home. Seriously, I never realised how many things I hadn’t looked at for at least five years; how many clothes were last worn when watching Wham! videos and how many boxes of trivia were cluttering up my spare room! It hurts like hell but once you’re over the, ‘that brings back such memories’ sentimentality, getting rid of your life’s worth of clutter is detox for the soul! You can do it slowly (you need the time to sort through mountains of junk) so the extra time you have can be well-spent.

Then there’s the internet; which on a serious note, since its invention, must have saved thousands of older souls from dying of sheer boredom. What did people do before the Net for God’s sake? I can’t remember; did we take long walks! Now in our dotage, we can blog or social network to our hearts content. Senior blogs and social websites for senior entertainment are the fastest growing segment in cyberspace at the moment and I don’t just mean DaddyDater, or Granddads R US. Seriously there are more cool free games on the oldie sites than anywhere else!

That said, an HIV-positive, mature person, with other side issues is not the most desirable catch in the Koi Carp dating pond but the internet does give us the chance to window shop and sample from the comfort of our own rockers in a way that we never could 30 years ago. If you do happen to get lucky and score a physical contact in the real world, look what those clever science boffins have done to prolong our sex lives – now that’s Nobel Prize-worthy!

Family and friends, while absolutely essential for many things, can also be a tad intrusive on your new-found personal freedom at times can’t they? Strategies need to be fine-tuned. Even though your faculties are as sharp as they were when you were 21 (possibly sharper depending on your history of youthful drug abuse), they don’t need to know that!

“I forgot,” or “You didn’t remind me,” or, “I didn’t hear you properly,” or “Oh was that today?” or, “I could have sworn that you said...” and “I was just thinking of doing that when you rang,” and the ever-useful, “I didn’t hear the phone,” or “I haven’t checked my mail today” are all ploys to confirm their worst fears of oncoming Alzheimer Light but keep you in control of what you want to do and what not. The day that all of the above happen to be true however...might be the time to have a chat with the doc.

Kids can be both a delight and a pain; in very small doses. Remember, they’re a constant reminder of your mortality when they visit. Their boundless energy is enough to have you reaching for the valium before they start and their constant wondering that you’re so old and yet have survived a childhood with so little, just hammers home the message. It’s a sort of compliment that you’re assumed to be wise and experienced on the level of Gandalf the Grey, just because you’re old but their disappointment is palpable when you betray your lack of technical texting skills. I’m not begrudging kids their youth and no I wouldn’t invent a machine to suck it out of them but I’m so glad I’m not that age any more but that of course, is knowing what I know now!

Finally, in the day’s quiet moments, when your eyes are hurting from the computer screen, or TV glare and you’re beginning to suspect rampant tinnitus because your ears have been bombarded for hours by TV audiences who insist on screaming hysterically for no apparent reason; certain other, more abstract benefits of your situation become apparent.

Why should we worry ourselves stupid about the same little things we worried about years ago? We ain’t got that long to go...let it go already! Forget about all the bad relationships and the traumatic mistakes; what’s the point of going over those again and again? You fucked up now and then, get over it! Concentrate on the good bits and the successes and the happy moments. You’re outliving your enemies and frenemies by now too...how good is that! You also begin to realise that all those so-called experts in psychotherapy and social science, don’t know as much as they think they know, or that you thought they knew and that can be an epiphany! It’s wonderful when you realise that the emperors have no clothes. Okay, walking around constantly with a smile on your face may make people suspect that you’re forgetting your medication but fuck ‘em if they can’t take the jokes you’re laughing at in your head.

I’m not saying that the bowl of life-experience cherries hasn’t got quite a few sour ones mixed in and sometimes life really is a bitch and does your head in big time. Good grief, if old age was so much fun, cryogenics would be the world’s top industry. You sometimes just have to accept that you’re more often tired than you want to be and some days are just downright miserable when you’re hurting but realising that there are also still funny moments and moments when you can still pull a fast one over society, can raise the quality threshold and that’s surely what it’s all about. If you can’t raise a smile at Monty Python’s ‘Always look on the bright side of life’ and a finger to the dominance of youth culture, I give up; I think you passed away a while ago!

The title of this article is a gentle reference to the late, great Ian Dury and the Blockheads and their hit, ‘Reasons to be Cheerful, Part 3'.

Image courtesy of Canadian AIDS Society's 2012 World AIDS Day campaign.

Give or take a year or two and depending on your personal history, we’ve been living and dying with HIV and AIDS for thirty years and every year on World AIDS Day, we remember those who fell.  However, in this morally topsy-turvy world, we don’t always remember those who picked up our men, wiped their arses and their tears and unselfishly gave help, humanity and dignity during what for many were last weeks and months. We damn well should, because without the thousands across the world who gave their time when nobody else would, a lot fewer of us would be around to talk about it today.

I’m talking about people who saw a need, rolled up their sleeves, swallowed their fears, ignored the stigmas and opposition, even from some of those they were nursing and just gave.

They were women; some lesbian, some straight but all committed to making life easier for those in their care. For gay men it came as a total surprise; we didn’t expect it of them and hadn’t exactly seen them as comrades in sexual equality during the years when hedonism ruled and seemed never-ending. Yet when hospitals were isolating people and leaving them alone to die; when families had abandoned their sons and when nursing staff refused to treat AIDS patients, or gingerly entered the room in clothing and masks more suited to nuclear fall-out, many women decided that this was too big to ignore. They ignored the hysteria and paranoia and recognised the tragedy of what was happening. Thank God they did!

Many regular nurses refused to treat AIDS patients out of fear, or because their families and friends pressured them out of it. Fear played a huge role, especially amongst those who had never known a gay man and knew nobody who was sick with AIDS. However, as soon as the devastation within the gay male community became apparent, many nurses formed groups to fight discrimination of people with AIDS and groups to support the victims and their families. It was at that point that thousands of lesbians decided to volunteer, or join nursing as a profession. This wasn’t just in North America; it was in Europe, Australia and many other areas too. Without necessarily realising it, certain groups of women responded to a universal need; which was quite remarkable if you think about it.

More information is here.

It was female nursing leaders who vehemently opposed mandatory HIV testing; a political move aimed specifically at gay men. They also encouraged the setting up of support systems, home help and hospice facilities for the dying and generally underpinned the social safety net when most health authorities just didn’t want to know and were refusing funding. Perhaps not surprisingly, many lesbian organisations were not sure about all this. They argued that gay men had offered little support to lesbians over the years and were often little more than contemptuous in social situations. ‘Would gay men have done the same if AIDS had affected women the same way’, they argued? It’s a moot point; we’d like to think we would have but we’ll never know because it turned out so differently.

At that moment, many gay men were traumatised. They were seeing their friends dying at astonishing rates; they were shocked and fearful; angry and frustrated and stunned into inactivity as people often are in war situations. Fortunately men like Larry Kramer had the presence of mind to organise opposition to Reagan-esque indifference and many men took to the streets to demand action for their dying friends but it was women who took the leading role where it counted; on the wards and at the bedsides of men with horrible afflictions and little future.

Perhaps even more surprising were the different ‘sorts’ of women who made such an effort. There are too many genuine heroines to mention here but the following at least represent the movement as a whole. My apologies for leaving out so many but that doesn’t diminish my awe and respect for people who did so much more than I would ever have dared.

Take for instance Mrs. Judith Peabody, a wealthy socialite and philanthropist, who ‘volunteered’ for good causes much as her fellow ladies-who-lunch did and still do. However this was a lady who took her ‘duties’ seriously and turned up one day at the office of the Gay Men’s Health Crisis and volunteered her services in support of AIDS patients. Many patients and their families may remember Mrs. Peabody, clad in Yves St Laurent, bringing meal trays into the rooms when the general nursing staff left them outside. This was a lady who walked the walk. She was criticised of course and many in her socialite circles took the ‘How could you!’ attitude rather than joining in. Nevertheless, she raised a lot of society money and influenced a segment of society that had the resources to make a difference. That made her special.

Then there was Maureen Cassidy, of Fairfield, who started a Buddy Program, matching around a hundred volunteers with AIDS patients in her area. She was a successful cosmetics executive who gave up her job and salary, to help others in need. It stemmed from losing friends and even her brother to the condition but her driving motive was something that we need so much more of today.

''I walked into a clothing store recently and a woman inside said she couldn't believe I worked with people with AIDS,'' Ms. Cassidy said. ''She said, 'Aren't you scared of getting AIDS?' '' Ms. Cassidy said she used each confrontation as an opportunity to educate people about AIDS.

Such was her influence that doctors, business professionals, elderly people and housewives saw the bigger picture and willingly volunteered when others buried their heads in the sand.

''What bothers me most is how AIDS is still such a stigma - to see somebody who is a kind, warm person, be treated badly by their families,'' Ms. Cassidy said. ''All of a sudden they get this disease and they're treated like lepers and it's very difficult to watch that.'' She spoke of a young woman with AIDS whose parents moved her to a back bedroom in their home and served her with paper plates and plastic spoons and forks. ''I'm always amazed at how many people are still terrified.''

Now that is something that has barely changed in many places in the years since she said that in 1989.

Another special person of the times was Margaret Bausch, a nursing student who decided she wanted to work on an AIDS ward in 1990.

“I'm gay and I wanted to put back into the community, you know?" she said.

After she’d graduated in 1991, she asked to be transferred to the HIV-AIDS unit at the nearby St. Joseph’s hospital. Now this was a special organisation in itself in that it was founded and run by the Daughters of Charity of St. Vincent de Paul. Bear in mind that this was a traditional Catholic organisation and charity. This was still a big deal in those days and the fact that a Catholic institution would go out of its way to be supportive of Aids patients helped others to overcome prejudice.

"The Daughters of Charity were actually very, very supportive of our mission there," Bausch said. "In fact, they sponsored us in the Gay Pride Parade twice. Once, we had T-shirts made up that had the big AIDS ribbon on the front and it said, 'St. Joseph Hospital—Caring for Our Community' on the back."

Margaret worked amongst many other lesbian colleagues whose names may be forgotten, so symbolises a significant number of selfless and generous people. However, in 2001, she was diagnosed with Multiple Sclerosis and had to stop working at St. Joseph’s, just as the newer drug regimes were emerging. The irony of her illness was not lost on her because it was her own T-cells that were attacking her nervous system to produce MS. Her story is fascinating and I can’t improve on her own words but it’s definitely worth following the link to read more about her life.

So how did she cope? "I ate and drank a lot," she said, laughing, but then grew quiet. "It was hard. I mean, we used to have a calendar and we'd write the names down of people when they passed away, you know? Sometimes, there were some months where we'd know, like, 50 or 100 people that died. It gives you kind of a perspective about quality versus quantity of life. And I wouldn't say you ever get blasé about death, but you really do come to understand that being dead isn't the worse thing—that there are worse things than being dead. It was hard."

Then there was Joanne James, who was the head nurse of one of the first AIDS wards at the Harper Hospital in Detroit. She along with other nameless colleagues worked long and hard to create a support network for the nurses themselves. Hospital administrators and the public at large often underestimated the effects on the nursing staff, who were caring for patients who were more often than not going to suffer terribly and then eventually die. Joanne James recognised that in order to provide better care on the wards, the nurses needed to be supported and cared for themselves. The psychological effects of so much suffering must have been devastating at times. Her groups became part of the Association of Nurses in AIDS Care organisation and since her death; a ‘Joanne James Award’ is presented annually to someone who has made a significant contribution to the HIV community.

We shouldn’t forget the media women who brought the story to the public in an honest and hard-hitting way. The newspapers and television in those days generally reflected the political distaste for anything HIV-related and writing a story about AIDS wasn’t always a good career move. In 1983, in the early days of the epidemic, Maureen Dowd wrote ‘FOR VICTIMS OF AIDS, SUPPORT IN A LONELY SIEGE’ for the New York Times that was brutally confrontational for most of its readers and for that reason, won no awards and almost lost Maureen Dowd her job. It was eventually published a few weeks before Christmas, at the front of the Metro section but it was touch and go. The full article can be seen via the link below and will show how brave Ms Dowd actually was writing such a truth at such a newspaper.

In Australia, the story was much the same and many lesbian nurses worked at St. Vincent’s hospital in New South Wales and once again, when the general nursing staff refused, or was reluctant to care for Aids patients, lesbian nurses stepped in and volunteered in significant numbers. One of those was Ann Maree Sweeney:

“I started working with AIDS patients in 1989. I was 21 years old, Catholic, just out of university and just coming to grips with my sexuality. I had NO idea what I was in for. I experienced the depths of despair, but also the essence of love – true love. I wasn’t ready for the roller coaster, but who was?”

That must have been the case for almost all the nurses caring for the sick and dying. How could they be aware? Men were losing all vestiges of dignity to the virus and being reduced to skeletal shadows of their former selves. These women had to care for people with a sickness that was entirely new and had physically very challenging symptoms and that must have been incredibly hard. The facts that they did it anyway ...sometimes words aren’t enough!

“Sometimes five men were dying in a week at St Vincent’s. 18 year olds. 22 year olds. It was awful. People were literally shitting and bleeding to death. Nothing we could do would stop it. Not to mention pneumonia, the blindness or the AIDS dementia process. But at the same time as the horrid virus was tearing our hearts out, dykes and poofs were rocking together – partying, loving, caring and consoling. Our mates were dying, we were united. The poofs needed us strong women to do the dirty work… and we were willing.”

One of the nurses who worked during the worst years and is still working at the famous Ward 86, at San Francisco General Hospital, is Diane Jones. She has something interesting to say about how little attitudes have changed. On hearing that they are HIV-positive:-

“People still have the same reaction now that they did 30 years ago – it’s a universal reaction,” she said. “The first thought is that they’re going to die, the second is that they can’t tell anyone and the third, if they’re a woman, is that they can’t have children. And none of those is true.”

And she should know. How sad that all that incredible work to educate people about HIV and how it can be treated in 2012, has still not permeated society so that stereotypes and stigmas are eliminated.

Another direct reference to the work of Diane Jones can be found in an interview with Clifford L. Morrison for a University of California account of the AIDS epidemic and the response of the nursing profession:

“Lesbian nurses had a totally different approach to it. Diane Jones was certainly one of the first ones, and one of those people that I will always hold in high esteem and will love forever. She can do no wrong in my eyes. They knew that they weren't at risk, even at that point, but they saw it as a bigger issue. One of the things that I think the public really wasn't aware of is that there was, particularly in this community, not a lot of cooperation, not a lot of good feeling between lesbians and gay men, because we were all competing for the same little piece of pie”.

It could be said that we haven’t been grateful enough since either. Not many gay men march for breast or ovarian cancer research; or fight for more recognition of the passive sexual infection of women, leading to disease and even infertility. Gay men aren’t leading the fight against rape and exploitation either but we should because these are the issues that the other sexes are facing in 2012 and it should be pay-back time. Let’s just remember once again, that so many women swallowed their squeamishness and fed, clothed, bathed and comforted AIDS patients during their worst days. They talked them through their traumas, did their laundry, cleaned up vomit, urine, faeces and blood-soaked clothes and sheets. We should be eternally grateful and these women should be lauded at every World AiIDS Day gathering and given the due recognition they deserve.

**********

This article is about the women at the time: this is not to demean the equal contributions of many men.

More information can be found here:

http://feministpigs.blogspot.nl/2012/03/why-gay-men-should-step-up-for-womens.html (An alternative feminist view)

http://www.thebody.com/content/art30924.html  book ‘Women, Families and HIV/AIDS by Carole A Campbell

Couple the conditions neuropathy and HIV-infection together and in 2012, you have more people than ever who understand what you’re talking about. Growing older and surviving with HIV seems to mean the increase of long-term, age or HIV-related, side-effect conditions like neuropathy. To save time in relation to this article; much more information about the disease and its links to HIV can be found in other articles here, here and here.

It’s an infuriating and frustrating problem for both patients and doctors. Neuropathy is one of those diseases where the mainline, standard treatments seem to have remained static for the last thirty years or more. Occasionally, a different anticonvulsant is tried out, or a combination of antidepressant and anticonvulsant, analgesic, or opiate but this comes more from a feeling of hopefulness than conviction and good science on the part of doctors. In general, people who unfortunately end up with neuropathy from whatever cause (and there are over a hundred!) follow the same medication routes that have been used since the 60’s, until hopefully something works. It really is a sticking a wet finger in the wind sort of medical approach. The downside is that many people are never prescribed anything that really works for them and the symptoms can gradually worsen. In the end, the only pain-killing options are opioids, with all their attendant side effects and addiction potential. Little wonder that all involved tear their hair out with frustration. Medicine isn’t meant to be this way in the 21th Century; even HIV sees progression with its medications!

That’s probably why so many people turn to alternative therapies and supplements to try anything that might relieve the problems. In that sense, different supplements and therapies spring up every year like mushrooms in a field. Some end up being tested and approved and genuinely help people but many are pretty much worthless and a waste of money. That’s the biggest problem with neuropathy; it creates desperation and the need to clutch at straws. Yet the problem is largely unrecognised by the population at large, despite there being 20 million Americans alone who suffer from various forms of nerve damage. To be clear, only certain types of neuropathy can be reversed and even then, only when they are discovered very early in the disease – generally it’s something with you for the long haul.

Over the last decades, it has been a doom and gloom scenario for many people, as they work their way through drugs meant for other diseases in the hope that they will eventually get some relief from their neuropathic symptoms.

However, that very increase in numbers of people suffering serious nerve damage has sparked a wave of studies in the research world and glimmers of hope for sufferers. Unfortunately people living with HIV can’t take any of the credit; if it were just our little demographic, a cynic might suggest that new research wouldn’t be so forthcoming. Luckily for us (but not if you also have diabetes), it is the explosion in diabetes cases that is driving the need for effective treatments for neuropathy. The burgeoning disease of diabetes is the single largest cause of nerve damage, especially in the burger and sugar-guzzling West. That becomes a drain on health budgets and services; ergo a new enthusiasm in the research labs.

The outlook for neuropathy patients may not be quite as gloomy as it once was then and this article will bring you up to date with some of the more recent developments within the scientific and medical world. Be warned though, these will probably not result in ‘cures’ or even off-the-shelf medications in the very near future but do show that the pharmaceutical industry seems to be finally waking up to the fact that this is a huge problem across the entire spectrum of society. Significant progress seems to have been made even during the last year. As you know, drug companies are not known for their philanthropic motives but there’s a vast amount of money to be made as soon as effective treatments can be developed and that, plus pressure from health regulators to deal with diabetes, will unfortunately, probably be the driving force behind finding new treatments. That said; do we care how they get there? Not if we have neuropathy we don’t! Whatever the motives, we’re going to love the pharmaceutical company that brings us genuine relief from nerve damage.

Recent Developments in Research

The following are some of the many recent developments in understanding of how, what and why nerves are damaged and what can be done to alleviate the results.

First, a step backwards but an important one for many people currently being prescribed the anticonvulsant Lyrica (pregabalin) for neuropathy. For those who haven’t already heard, in May 2012 Lyrica (Pregabalin) was dropped as a treatment for diabetic and HIV-related neuropathy by none other than its makers, Pfizer. It proved to be ineffectual in treating neuropathy from those causes. Despite this, doctors all over the world are still prescribing it because they either haven’t heard, or because it’s on the standard list, or they have always prescribed it and have a number of patients for whom it seems to have worked. The fact is that the majority of people have found no improvement from taking Lyrica (pregabalin) and what’s more have suffered more from the side effects than from the neuropathy itself. It may be worth discussing this with your specialist if that’s the case for you. For Pfizer to withdraw support for their own drug is hugely significant – no drug company cuts the throat of its own cash cow for no reason! 

By far the largest area of research is at molecular and cellular level which may leave most people scratching their heads and reluctant to read on. However, scientists in both universities and the pharmaceutical company research departments seem to have recently invested a great deal more time in looking at nerve cells, why they are damaged and what processes both chemical and physical cause so much pain and discomfort for neuropathy patients. Of course, this sort of research has undoubtedly been going on for years but with discouraging results, (otherwise new treatments would have been available long before now). The technology must also have improved to the point where more detailed and specific research is now possible. Published scientific findings also stimulate both new research and competition, so exciting results in one university or research lab tend to encourage others to top them with results of their own. More money for research may also be available, as political decisions outside the pharmaceutical industry influence progress. Administrations everywhere are realising the huge costs associated with ‘life-style’ illnesses like, diabetes, cancer, HIV and others. They also realise that continuing to pour money into paying for ineffective treatments with side effects just prolongs the process and increases costs exponentially. The pharmaceutical companies may finally be facing pressure from politicians but they are also beginning to realise the vast profits to be made from finding the ‘mother lode’ of nerve damage treatments. They can no longer really justify making profits from and using up reserves of drugs used for other medical conditions, when they have such a hit and miss effect on neuropathy patients. Sheer numbers and potential profits, then, are driving the search for new drug treatments. 

So is it possible to describe some of the developments in molecular and cellular research for nerve damage? I’ll give it a go and have to confess my own understanding is about as shallow as most people’s but we need to have an idea of what sort of treatments are going to affect our futures with this disease. If nothing else, it helps us to understand exactly how complex the whole problem is. 

The first is new research that has identified precisely which cells and which sub-sets of cells, are responsible for long-term nerve pain. See an explanation here. 

Then studies have identified the cells (Schwann cells) which protect the myelin sheath which is the insulation layer around nerves (to give you an idea, a myelin sheath is like the plastic around electricity wires – you get a short circuit if that is damaged too). More information about this research can be found here. 

Further research has identified the importance of something called metabolomics. This looks at why nerve pain persists for so long and why many medications have no effect. The clue lies in a by product of cellular membranes called DMS which seems to be present in large amounts in the spinal cords of lab rats and mice with neuropathy. They are working on finding ways of inhibiting this DMS and thus relieving long-term pain. More information here.

Similarly, American researchers have discovered a group of drug molecules which are found naturally in the body and stabilise other molecules, in order to block neuropathic pain. The idea is that these selective molecules inhibit a key enzyme called soluble epoxide hydrolase. Blocking this enzyme successfully blocks pain sensations. This then has implications for developing new drug treatments which will work much better on neuropathic symptoms. The problem is that the research is still in a very early stage. Read more here. 

Another research study aims to block nerve pain signals by using glycene. Glycene is an amino acid which is known as an inhibitory neurotransmitter. It works at the junction between two nerves, known as the synapse and halts the transmission of pain signals along those nerves to the brain. However, glycene quickly dissipates in these places and some have recommended taking supplements to encourage the body to create more naturally. This study questions the efficiency of that but points out that glycene is one of the very promising natural products of the body which needs and is getting much more research. More information here.

Yet another research study has discovered that a certain protein (LRP4) has to be present on the surface of both muscles and in the brain in order to regulate muscle function. If this isn’t the case, several conditions including neuropathy can occur. Many neuropathy patients discover that their muscles stop working efficiently and lose strength after time – the lack of this protein LRP4 in both muscle cells and neurons leads to communication breakdown, which as we all know leads to the numbness, tingling and pain which often appear with nerve damage. Finding a way to either maintain protein levels or introducing it externally may well help reduce the problem. More information here.

Another project has looked into how the brain stores memories of pain and why for instance, phantom limb pain occurs (when a limb is lost, people still feel the pain as if it’s still there). Again, it concerns a type of protein (PKMzeta) which builds and maintains memory by strengthening the connections between neurons. Scientists think that if they can block the activity of PKMzeta, they can reduce the hypersensitivity that causes nerve pain and they’re well on their way to finding something that will do just that. Again, a work in progress we have to say but the future looks a little more hopeful. Read more here.  

Finally in this group of studies, the possibilities of nerve transplantation are being explored, in cases where nerves are damaged. This means basically transplanting immature neurons in the hope that they will grow into full nerve cells. During the studies small fractions of the transplanted cells survived and matured into functioning neurons. The cells then integrated into the nerve circuitry of the spinal cord, forming synapses and signalling pathways with neighbouring neurons. Most importantly, as a result, pain hypersensitivity associated with nerve injury was almost completely eliminated. Whether health authorities will be able to cope with the expense of this sort of transplant treatment is the question but there’s little doubt, it sounds promising! More information here.

You can see from these few examples that many people and research labs are busy working at the most basic level of nerve behaviour to find where, why and how, molecular and cellular activity cause such unpleasant neuropathic symptoms. Genetic research is another fast-growing sector, largely due to the huge advancements in techniques in that area and eventually, altered or modified DNA may provide permanent answers. It is slow work though and we have to hope that sooner rather than later a significant breakthrough will be made. Hoping that just one of the studies above may lead to real treatment progress, gives room for optimism.

Researching Nature

Research is not only being done at microscopic levels within the body but studies are also being done in nature to see if there is anything in the animal and plant kingdoms which may help. This has produced some strange studies and conclusions.

• A certain sea-snail saliva for instance could be a replacement for morphine in the future. Read more here.
• Taiwanese scientists have discovered a compound derived from certain corals called Capnellene. This may also work on certain cells (microglia) and significantly reduce neuropathic pain. More information here.
• Scorpion, spider and snake venoms may also provide answers to controlling nerve pain. These venoms work on the sodium channels in the nervous systems of mammals, so it seems logical that controlled doses may help with neuropathic symptoms. Read more here.
• Turmeric (also known as Curcumin, Curcuma) which is used widely in cooking, is one of the new buzz words for helping with all sorts of problems including neuropathic pain. Every now and then, a natural remedy emerges that catches on in the market; sometimes with merit and sometimes not. However, one of the most promising is Turmeric or Curcumin, a root used widely in Asian cuisine, generally in powder form. It’s cheap and maybe worth a try – some people swear by it but do your own research. More information here.

Of course the best known natural remedy used to help with neuropathic problems is cannabis. The hysterical reactions to cannabis for medical purposes are much more to do with politics and ‘the war on drugs’ than the medical benefits it can undoubtedly bring for many people. It’s one of the very few recognised effective remedies for neuropathic pain but a) you have to be aware of the laws in your area, b) you have to be able to smoke it (with all its associated lung dangers) and c) you have to be able to cope with getting high (mildly or otherwise). For those reasons many people can’t take advantage of cannabinoids. However, there has been a new synthetic version of THC (the principle working element of cannabis) created by the University of Calgary and this could prove to be a godsend for many neuropathy sufferers because smoking will be removed from the equation. It is far more likely to be accepted by law agencies because it can then be issued on prescription. However, like most developments, we’re not there yet. (Read more here.

Other approaches

There are many more studies and investigations of potential natural remedies, from many different natural sources taking place. If only a handful end up being successful and effective and available to our doctors, or on the shelves of our health food shops, it could relieve suffering for millions.

It seems that no stone is being left unturned in the search for answers and that includes looking at other cultures and other medical practices. Acupuncture and acupressure have been tried by many neuropathy patients over the years, with varying levels of success. Like everything else at the moment, it works for some but not for others. However, new research has discovered that much longer-lasting effects can be achieved by so-called PAP injections (prostatic acid phosphatase) using the same pressure points used for centuries in acupuncture. This so-called PAPupuncture therapy has been proved (in the lab) to extend pain relief much further than with normal acupuncture methods and may well be a useful therapy in the future, for those who don’t wish to increase their drug consumption. Read more here.

Finally in this section, it may seem that the world is turned on its head but a modified version of the herpes virus is thought to theoretically work on peripheral nerves, so that pain can be directly reduced in those areas. A scary thought perhaps, if you’re to be injected with herpes but perhaps logical if you think that Shingles is also a form of neuropathy and is caused by a herpes virus. Anyone suffering from Shingles, knows what nerve pain can do! More information here.

Lastly, apart from the searches for new medications and treatments, which are very difficult for the layman to understand, scientists are also trying to develop better versions of current drug treatments. We know about the random success/failure rate of antidepressants and anticonvulsants and it is likely that there isn’t much progress to be made in those drug areas. We also know about the last resorts in the opioid family. Effective pain killers but often strongly addictive and loaded with side effects, they are unfortunately a question of necessity for many neuropathy patients.

Scientists are discovering that opioids are a group of drugs with more possibilities and their effectiveness is probably more easily adapted and manipulated. Consequently, new opioids and members of the opioid/morphine family are coming on to the market. Tapentadol,(Nucynta in the USA and Palexia in Europe) for instance, is newly approved in the States and can be equated to Tramadol but works slightly differently, more effectively and with less side effects. It will be a welcome alternative for many people. Read more here.

Researchers are also looking for ways to prolong the pain-killing effects of morphines and opioids, thus reducing the need for higher doses and reducing addiction dangers. They have found that Resveratrol, (naturally found in red wine) can preserve the effects of morphine in rats - most importantly, in rats that have developed morphine tolerance. In humans, morphine tolerance creates a need for higher doses to achieve the same effect so discovering something that delays tolerance, or maintains the pain killing effects, is clearly of great value. See more here. 

Conclusion

If you’ve got this far, you’re probably reeling from information-overload but the intention is to reassure you that serious efforts are being made to find solutions for both nerve damage and the uncomfortable results of that for millions of people. Eventually, a few will make it through the rigorous processes and end up as viable options for our doctors to prescribe. Unfortunately, it takes time and that’s difficult to swallow for a patient in extreme pain or discomfort. You’re already on drugs for your neuropathy; they may be working or not, or just partly. All you want is something to take the problem away and preferably a one-drug-cures-all type of treatment. The truth is that that’s not going to happen in the very near future but it will eventually happen. Finally, health authorities and pharmaceutical companies are getting their acts together and working for us instead of palming us off with dangerous drugs meant for other diseases.

Money will play a part in the speed of progress and research finance is often the first to go in times of financial crisis, along with the willingness of health authorities and insurance companies to pay for expensive new drugs but the picture is brighter than ten years ago. All concerned are realising that neuropathic pain is a far greater problem than they ever imagined and the increase of the diseases that cause it (along with people living longer) is only going to make that bigger. Something has to be done to reduce the costs of long term treatment and that means finding things that genuinely work. Lab rats and mice may view this with horror but for many people with neuropathy, it just can’t come soon enough!

Two crocodiles approached slowly, only eyes and snout above water. A farmer beat the water with a stick to distract the predators while his slave dragged the corpse onto the bank. It was a youth at the end of his teens, not long dead but clearly drowned. At first glance there was no evidence of injury or attack, therefore probably ruling out violence. However, this was no ordinary youth; clearly not Egyptian but probably Roman by the robes he was draped in. He couldn’t be a slave but possibly came from one of the Roman ships accompanying the imperial visit to Hir-Wer, near the temple of Rameses II just up the river. Even in death, his finders were struck by the fineness of his features and considering the fact that all people drowned in the Nile assumed a sort of minor divinity, they decided to take the body to the authorities – this was maybe a find that carried a reward...

He was born in 111 AD, in the north of Turkey, in a town called Bithynian. Some say he was a slave but what seems undisputed is that he was lowly born and given the normal way of things, might have grown up relatively unnoticed in an obscure corner of the Roman Empire. However, this boy was anything but ordinary and was blessed with a beauty that was to lead him to the highest levels of Roman society. Yet twenty years after his birth and meteoric rise, his body was found floating lifeless, in the sluggish waters at the edge of the Nile.

This first paragraph may have borrowed some poetic licence but the basic facts were well-documented at the time. However, the mystery of this young man’s untimely death in the Nile was to cause reverberations across the Empire and the known ancient world. The 20 year old Antinous became the partner and lover of the emperor Hadrian. This emperor ruled over the Roman world at the height of its strength and power, so it’s no exaggeration to say that the history of Antinous is the story of a local boy who astonished the world!

The emperor Hadrian is widely regarded as one of the greatest Roman emperors. He was a patron of the arts as well as being a tough and lead-by-example military man. He conquered lands and then travelled extensively to all corners of the Empire, in order to give the power of Rome a physical presence in people’s minds. Amongst other great building works, he is best known for Hadrian’s Wall, built to keep out the barbarian Picts and Scots. He was obsessed with successful administration and asserting Roman power as efficiently and justly as possible but at the same time was fascinated by architecture, design and creating elaborate gardens with spectacular water features (the villa at Tivoli for instance). He was driven by classical Greek civilisation ideas and concepts and that in itself gives him a contemporary feel in people’s eyes today.

It was in 123 AD, during one of his grand tours that he passed through Bithynian and spotted the young teenager Antinous. The details are lost in time but writers described him as being smitten at first sight by the boy. You have to consider the mores of the times. There was nothing unusual about an older man creating an attachment to a young boy and at this time, Hadrian was in his forties and married to the allegedly, extremely mean-spirited Sabina. They were childless, possibly because the marriage was one of convenience which possibly didn’t help Sabina’s mood. There were also many rumours of a previous sexual relationship between Hadrian and his mentor the emperor Trajan before him and then jealous spats as the two quarrelled over new young men at court.

Yet apart from the relative ‘normalcy’ of younger and older men having sexual relationships, there was also a culture of ‘adopting’ an heir and grooming him for future leadership. Having children as heirs wasn’t always the wisest option – Roman history is littered with siblings who killed each other, or their fathers, in order to gain power more quickly. Possibly for that reason, just as Trajan had done with him, Hadrian ensured that Antinous received the best education possible, either in Rome or by his side on his travels. Antinous was clearly a quick learner and became as knowledgeable of classical culture and languages as anyone in the court. That may have been necessary to justify his constant presence. Roman imperial courts were not known for their acceptance of rivals or favourites and many were rapidly ‘removed’ before they could climb too high.

However, Antinous and Hadrian were inseparable for almost a decade and he will have needed both intelligence and his wits about him to survive in that sort of environment, emperor’s favourite or not. Recently discovered art of the time shows both men involved in various activities, especially wrestling and hunting which they both loved. One famous story talks about a hunting trip for a man-eating lion, during which Hadrian saved Antinous’ life in the nick of time. Pancrates, a poet, wrote of how red lotus flowers sprang from the lion’s blood and that Antinous adopted them as his emblem. This was one example of how his image was romantically promoted after his death.

Antinous also took the opportunity to improve his own looks and physique; possibly realising that youth is temporary and determined to preserve his attractiveness for as long as possible. He became famous for his physical perfection and stunning looks and charisma and even before his death, was seen as a model of how the ideal man should look. Just as today, that sort of image must have attracted jealousy as well as adoration. Imagine what Antinous and Hadrian could have done with social media!

Then he died! Was he pushed? Was it suicide? Why did it happen at that moment? Nobody knows but at the height of his physical powers and attraction and at the beginning of permanently establishing his status in the Empire, he mysteriously drowned in the Nile. Isn’t that the best way though, with gay icons? James Dean for instance, is one of several twentieth century parallels. It was no different with Antinous; his death at twenty helped preserve his image and attraction for ever but there may have been much more to it than that.

The background to the Emperor’s visit may have also played a significant role. He was on one of his regular tours of the empire anyway. The Nile had failed to flood in its normal way for two years and not only Egypt’s agricultural economy was in dire straits but also that of the great Roman cities throughout the empire. Egypt was a large supplier of food and failing crops there caused ripples across the Mediterranean. If the Nile failed to flood again and nourish the land along its banks; the knock-on effects would be serious, leading to civil unrest and famine for some. Hadrian’s visit was therefore of enormous symbolic importance. Fortunately, his visit coincided with a normal Nile flood and he could benefit from the associations in people’s minds. As the flood subsided, Hadrian took to his opulent, gilded, imperial barges and made his way slowly up the river, with Antinous at his side. As a PR exercise, it couldn’t have had more value. For Antinous however, it would be his last journey and Egyptian superstitions may have played a part in his death.

For a start, the Egyptians believed that anyone drowning in the Nile assumed the status of a minor God. After all, the god Osiris was himself drowned by Seth in the river and became immortal. As they believed that Hadrian himself was a pharaoh and thus a living God, the sudden reversal of drought and return of the Nile waters also seemed to have divine inspiration attached. The high priests of Osiris and other important Egyptian dignitaries may have quickly worked out that a confirmation of divine intervention would both cement their unsteady positions at the Egyptian court and enhance Hadrian’s reputation. It’s not difficult to put two and two together and see how Antinous’ death could conveniently achieve their aims.

Some have hinted that Hadrian himself might not have been too upset by the death of his lover. During their trip, Antinous seems to have been influenced by various poets, philosophers and others and had become much more spiritual. Who knows what effect this had on their relationship? Only guesswork remains. It was also true, that both the Jews and other religious groupings in the near east, thoroughly disapproved of Hadrian’s ‘catamite’. Hadrian was also responsible for oppressing the Jews and the destruction of the temple in Jerusalem, eventually resulting in the Diaspora, the effects of which are still keenly felt today. Also in the Middle East, with Jesus only being dead for a hundred years, the Christians were an emerging but significant group and the idea of Antinous being the last pagan god was an anathema for them too. There was clearly opposition to the emperor’s private life and a great deal of political tension and Hadrian’s obsession with good order and diplomatic stability may have swayed his opinion regarding Antinous.

That said, what happened after his death suggests exactly the opposite. The Egyptian priests came to Hadrian and highlighted the symbolic importance of Antinous’ death and maybe his sacrifice to the river. Antinous was adopted as a god in the eyes of the Egyptian people and the high priests inferred that Antinous had been taken by the river god and had become the river god himself. However, the result of that was that Hadrian announced in October, AD130, that a new city would be built in honour of Antinous and set about creating Antinoopolis; one of the greatest cities Egypt had ever seen. This doesn’t seem to be the move of a man ashamed of his lover, or afraid of diplomatic disapproval.

Yet even that fades into insignificance when compared to Hadrian’s first reaction at the news of Antinous’ death. It is said that he wept uncontrollably in full view of his court and was inconsolable for days afterwards. This shameless display of emotion became somewhat of a scandal across the Roman world and his enemies took the opportunity to spread as much malice as possible. Hadrian’s reputation was in danger of being seriously damaged. One thing was clear though; these weren’t crocodile tears, they were a genuine expression of grief at the loss of the man he loved. Accusing Hadrian of being complicit in his death just doesn’t ring true.

Even more than that, Hadrian made a point of commemorating his love for Antinous by naming a star in the night sky after him, believing that the boy’s soul had risen to the heavens. He had monuments and institutions built to commemorate Antinous and commissioned nearly two thousand likenesses, statues and plaques which were created all over the empire. Schools, gymnasiums and temples dedicated to the new god were scattered throughout the Roman world and official Roman coins were struck showing his portrait.

This was promotion and image-building at the highest level but also showed the depth of Hadrian’s feelings. There was not the way of an emperor ashamed of his lover and perhaps no greater tribute could have been given. Strangely enough, ordinary people across the Roman world, both in the cities and on the land, accepted Antinous as a god and worshipped what he stood for; male beauty, strength, athleticism and perfection. A cult was born.

As further evidence of this general approval for Hadrian’s actions, his unification of the always sensitive Greek city states, established one Greek nation. The Greeks adopted Antinous as a symbol of their relationship with Rome. Such was the impact of Antinous that more statues of the boy are to be found in the world’s museums today than any other figure of the ancient world and that includes all the emperors and other world leaders. Even in the 16th century, his features were instantly recognisable; such was the admiration for his ideal as a symbol of physical perfection.

For such a romantic story, you have to wonder why the feature film hasn’t been made but Hollywood still can’t get its collective head around portraying homosexuals as being good (unless they’re dying). Hadrian is widely regarded as the best of all Roman emperors but has never been filmed in an epic. Even the ancient world’s other great gay icon, Alexander the Great, has had his homosexuality played down or obliterated in film portrayals. Yet surely in the 21th century, we should be able to witness the lives of a Roman ‘daddy’ and his ‘boy’!

For a low-born nobody from northern Turkey, the boy Antinous became the lover of an emperor; the symbol of youthful beauty across an empire and a God who was worshipped in many lands. He may have died an untimely death but you have to admit, the boy done extraordinarily good!

You know life’s full of regrets and what-ifs; we wouldn’t all be here reading articles on this site if it weren’t and no, this article is not another doom and gloom, slit your wrists type of downer. On the contrary, it’s a bit of a wake-up call, or at least it was for me.

I was slumped on the couch, looking and feeling like death warmed up, matchsticks propping open the eyes, watching the breakfast news, with a mug of ginger, lemon and jasmine tea in hand. It wasn’t the morning after the night before (I wish!); it’s my daily routine until the pills kick in and the neuropathy pain subsides. Then a cheerful woman called Bronnie Ware appeared, whose blog has gone viral and whose book, ‘Top 5 Regrets of the Dying – A life Transformed by the Dearly Departing’ has just been published. I know, the title doesn’t exactly suggest a barrel of laughs but bear with me.

Bronnie Ware is an Australian singer-songwriter and writer who worked for many years giving palliative care to terminal patients in their own homes. During that time she was witness to many people’s regrets in the last weeks of their lives and to cut a long story short, used these experiences to write a full-length book about her own story and how it was influenced by the people she cared for.

She was at people’s sides from a few weeks, to up to three months after they had gone home to die and far from finding the experience depressing, learned so much about the human spirit and ability to change, that she felt compelled to write this book. It’s a book of comfort for those who fear death and a gentle warning for those for whom that’s still a distant prospect.

“Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.”

The theme of the book is based on people’s regrets at that point and their wishes to have done things differently. I’m not going to reproduce Bronnie’s conclusions on each point; you can read the book for that but I can give my own reactions and then maybe you’ll have your own opinions too. The Top 5 in the book are as follows:

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me. 

This was apparently the most common regret Bronnie heard, something I can really understand. If I’m honest, far too many of the things I’ve done in my life have been attempts to live up to others’ expectations. It’s only recently that I’ve learned to truly think for myself and do what I want to do. I’d like to do far more but your health is often outside your own control and can judder you to an unexpected halt. Perhaps I should work on finding that less frustrating! 

It all started with my grandmother, mother (warning, gay cliché!) and my stepfather. In the early fifties, children were meant to be seen and not heard but my mother used her only son (at that time) as a listening post and bombarded me with things I should do and achieve and ways I should behave. She often used my step-father as an example of how not to live. Poor guy; it was only later that I realised that he wasn’t such a bad example after all and he had the patience of a saint. My grandmother was severely ‘old-school’ and provided me with stories of poverty and deprivation that made me the socialist-light I am today. In short, everything I did both in my formative years and later was aimed at receiving approval from the matriarchs in my family. Whenever I failed (and I frequently did), the guilt was painful and sometimes damaging and it was little wonder that I cut loose when I finally flew the nest. Getting engaged to an unsuspecting girl was a major mistake arising from the perceived need to please the family and staying in the closet as long as I did came a close second. However, that need to please others and live up to expectations, whilst often being a stimulus to do better, also became a millstone throughout my working life. In the end I had a few successes and fell short in many regards but I’m finally okay with all that. I just hope that younger people can see that living a life ‘true to themselves’ is perhaps the best evidence of reaching maturity and consequent happiness and achievement. By all means look at what others do and admire them but evaluate everything you see and only follow that path if it’s truly what you want. 

2. I wish I didn't work so hard.

Being a teacher for thirty years meant long hours, way beyond the school timetables but this is not one of my own regrets. I loved the job and although it brought me to the point of total exhaustion sometimes, I wouldn’t trade it for anything. Bronnie Ware found this to be an almost exclusively male regret (although I wonder if present generations in the uni-sex work-place will have such a gender divide). I can understand that for the heterosexual community the realization that you neglected your family due to work commitments must be quite common and maybe as the nuclear LGBT family becomes more evident, this will happen there too. It’s difficult; on the one hand, employers are demanding ever more dedication to the job and work is hard to find, so the family will inevitably come second and on the other, if both partners are working, they may lose contact with each other. This has to be a factor in the breakdown of relationships that permeates our society but we need to find a balance. The question is; do we work to live, or live to work?

3. I wish I'd had the courage to express my feelings.

I have a horrible feeling my friends would wish that I perhaps didn’t express my feelings quite so much! I’m a ‘heart-on-my-sleeve’ type of person (thanks again ma!)  though not an emotional wreck but I have learned to temper it a little and control my emotional reactions when appropriate, especially as it’s not appreciated in the Netherlands (ask my ex-partner). Ninety percent of the Dutch will probably end up with this particular regret on their deathbeds. It’s always been a Calvinist society and openly showing emotions is still something they have difficulty with but bottling frustrations up is to my mind, never healthy. I have a feeling however, that many older people all over the world, especially men, will recognize this regret because of the way they were brought up. Look at society’s reactions to men crying. Luckily, the butchest sports heroes and politicians and other pillars of society who ‘done bad’, are leading the way in weeping for our gender and even the stiffest upper lips may soon be quivering when the mood takes them.

4. I wish I had stayed in touch with my friends. 

Actually, in my case, no I don’t. If my friends aren’t still my friends today then that’s for a reason. I’ve no regrets about people lost along the way. If the regret was; ‘I wish I had made more friends’, then maybe. I’ve never been the most comfortable social animal, mainly due to chronic shyness but I do wish I’d made more effort over the years. I’m not one who believes that if you fall off, you should get back on the horse and every knock-back tends to make me even warier in the future. Definitely a character flaw and maybe a deathbed regret for the future. 

5. I wish that I had let myself be happier.

Oh definitely! If I count up all the miserable times I’ve had in my life, I’m almost certain that half the anguish could have been avoided by accepting that shit happens and that wallowing in self-pity just prolongs the problem. Be Zen about things, move on, leave things behind, don’t worry, be happy, are a set of well-worn clichés but so true. It takes a character adjustment to really live the philosophy but the earlier you do it, the happier your life will be. 

In conclusion, it’s taken me 62 years to realize a lot of things about myself and maybe that’s true of most people. Learning through your experiences can be a lifetime’s work. However, even young people can be advised that life’s full of unnecessary flotsam and jetsam, which can be tossed overboard or ignored, without it affecting your well-being. There’s just such a lot of crap to slow you down, both physically and emotionally. People these days, are subjected to more information and social pressures than ever before; it must be very confusing at times. All the more reason then, to work out what’s important in your lives and stick to things you truly believe. Being your own true self, however horribly new-age and trite that sounds, is maybe the most important lesson we can pass on to younger generations: an addition to the school curriculum maybe?

You may wonder what relevance Bronnie Ware’s sympathetic book has to people living with HIV but I believe that if we look at these regrets of people for whom it’s now too late to change, we can take them as a gentle warning for those with many years of life ahead. If you’re not dying, you can change almost anything that you’ve regretted over the years; it’s not too late. Re-evaluating the, ‘who am I and why am I here?’ question can be done in the quiet moments, away from the stresses of health, work and relationships but identifying and eliminating the regrets and ballast that hold us back may pay off big time in terms of improving our quality of life. 

The Top Five Regrets of the Dying - A Life Transformed by the Dearly Departing by Bronnie Ware. A memoir of her own life and how it was transformed through the regrets of the dying people she cared for. This book is available internationally through Hay House.

Bronnie Ware’s sites can be found here  and here.