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.

My fear of all things anal began when I was an early teen. My older brother David took great delight in bursting into our bathroom to startle me, especially if I was on the john. And, since I was a pubescent redhead, his sudden visits included a lot of laughing and pointing. 

I was mortified beyond belief. To this day, I must be sure no one is in the house, and then close and lock the bedroom and bathroom doors before I can properly relax. And I live alone.

But you can’t avoid everything anal if you’re growing up gay. Not if you want to do the really fun stuff.

Thus my conundrum as a youth: exploring the pleasures of my tush while fighting the terror that something stinky might be going on down there. And I suspect I am not alone in this particular anxiety.

I discovered soon enough that if someone had serious intentions in regard to my backside, I couldn’t simply rely upon a bran muffin and a Hail Mary to be properly prepared. God forbid I would, you know, not be… well, you know. This ongoing fear had a habit of wrecking the mood and the evening.

My exclamations during sex were usually panicked calls to turn the lights up, so I could carefully inspect the situation. Or a plea to stop altogether. “Okay, that’s fine, no wait!” I would cry out. “Am I okay down there? I mean, is it… okay go ahead… no hold on! Are you sure I’m…?” I was usually so involved with my protestations that I would hardly notice my date gathering his things to leave.

There are cleansing products meant to address this situation, but they require a certain comfort level with your own body and a little patience, meaning, they were incomprehensible to me. But I tried my best.

Drugstore enemas always felt too clinical, like something a nurse should be administering so you could “move your bowels,” a phrase I hope I never have to hear again, much less type.

But never fear. Leave it to gay men to popularize the “shower shot,” a long hose which screws into your shower head and ends in a narrow nozzle, just right for sliding up your bum for a thorough internal rinse.

The modulation of this instrument, however — and I cannot stress this enough — is of utmost importance. Too little water pressure and you’ve got a dribble with little cleansing effect. Too much, and you’ve just inserted a pressure washer into your ass that could peel the paint off a building.

I was first introduced to this contraption in my early twenties, when my first-time date invited me to visit the bathroom to “rinse out” while he relaxed in bed and waited. I stepped in the shower and surveyed the dangling metal hose. I turned on the water. I considered how it all might operate, and I made my best guess, standing there for God knows how long, hose inserted and whistling a happy tune.

I must say in my defense that no one had ever explained the device to me, much less how to gauge the input versus the output.

That poor, unfortunate man. He had really pretty designer sheets, covered with a gorgeous blue and white pinstripe blanket that I can still see clear as day. Such a lovely bedroom. That is, until a few passionate moments later, when all of it was soaked with a solid gallon of spoiled water that had been percolating in my poopchute, exploding from me in a streaming rush that looked like the wake of an outboard motor hurtling across Lake Erie. The word “apocalyptic” comes to mind.

Only as I matured did I realize I had options (and I will now introduce cute baseball analogies to illustrate my point). I discovered I did not, in fact, always have to play catcher, and I stepped onto the pitcher’s mound with great enthusiasm. But as much as I enjoyed the view from above, I worried still, that maybe I wasn’t holding up my end of the bargain. It was only after pitching a near-perfect game one day that my partner in the dugout helped me make a simple decision.

“Mark,” he said. “Why don’t you just stick to what you do well?” And it was this generous assessment that gave me the confidence to hang up the hiney hose forever.

Yes, that’s right. I’m now a dedicated top. I’ll allow you a few moments of incredulous wonderment.

What’s even more amazing is my having a boyfriend who is not only loving and adorable, but absolutely expert at the exotic mysteries of booty sex preparation. It really is an impressive talent, if you ask me. Like walking on your hands, or spinning plates on sticks.

This is all to tell you, dear reader, that sometimes you must find solutions to your fears in order to take care of yourself. And sometimes you have to face your damn fears head-on. I was reminded of this recently when, at fifty-two years old, I had my first colonoscopy. I don’t think I have to explain my anxiety level going in to this procedure.

Everything checked out fine, thanks. I had heard the anesthesia they give you can produce some odd behavior, but other than proposing to the physician and asking the recovery nurse if they located my pet hamster, I behaved myself quite admirably.

The only side effect of my colonoscopy was a bloated feeling and a case of the gurgles. Well, and a few hours later I had the longest, most continuous release of gas I have ever experienced in all my days. I’m talking a minute plus, people.

I really wish my older brother David had been here. He loves that kind of thing.

Mark

(Artwork courtesy of Andrews’s Anus, via LifeLube.)

****

My Friends, 

If I can face my deepest fears, so can you. Did you know that studies show people living with HIV have a higher incidence of “colonic neoplasms” (the polyps they are looking for during a colonoscopy), which should be checked out for cancerous cell growth? Anyone aged 50 should get a colonoscopy, and some protocols suggest that people with HIV start this screening at age 45. Please don’t delay. Call your doctor! (At left, a picture of my happy procedure team just prior to my colonoscopy.)

And speaking of rectal douching (and why not? We really should discuss this topic more, considering it is such a common practice among gay men), I cannot say enough about LifeLube, the blog created by the AIDS Foundation of Chicago to help gay men address sexuality and their bodies. They have an entire section devoted to rectal douching (did you know there are new douches that limit the amount of healthy bacteria removed?) and another feature, Andrew’s Anus, that provides engaging answers to the questions you’re afraid to ask. The blog is no longer active – meaning, no new postings – but there is a wealth of information here and you should definitely check it out.

This article first appeared in Mark’s own blog My Fabulous Disease here.

"Don't grow up, its a trap!" As an avid Facebook-er I go online each day and my "newsfeed" page has been swarmed by memes, small postcard entries with good messages, thoughtful messages or ones from the "grumpy cat". Grumpy cat (below, right) is hilarious. I have confessed to not being a big fan of cats but this one I can live with.....and laugh with. 

Some time ago I came across the meme that spawned the title of this post. Its wording really took me back.

One of the drawbacks of getting older is you have many more things too look back on. It’s the reason grandads have so many stories to tell their grandkids. 

This meme made me think back to grade 8, to high school and beyond. Bear in mind, I quit school midway through grade 10. During this time I swear, I looked like I was 12 years old for five years. I was one of the smallest kids in my grade, I was skinny, I weighed about 110 pounds soaking wet.

I hated gym class. (Well, not entirely, I knew I was gay so I got to see things,) I just regretted having to change into gym clothes for that class. I got teased a lot, so often I would turn away from everyone else or be back in a corner. 

In high school it got worse. Most of my classmates were shaving, they had hair on their legs as well as other places on their bodies. I didn't. There was this one guy who used to taunt me there. His name was Edmund and he wanted to be called Edmund, I thought, what teenager wants to be called Edmund? Walking naked in front of me, he would say that I had to be wishing I looked like him. Comparing him to others in my class, he wasn't all that. If I was able to compare myself to him now, I'm sure he wouldn't have much to say and I'll leave it at that. 

I made one good friend in high school. He had moved to Canada from Hong Kong and seemed to be the coolest person in the whole school. He was old enough to be finished, but on coming to Canada he went to high school for that one year to learn English. I think he was four years older than me and we are still friends today - not as close but we do see each other from time to time. 

After school, we worked for his brother and we had other friends but I was still the youngest. When I was 16 we would all go over to Buffalo N.Y. for shopping, and sometimes drinking. The legal age limit in Buffalo at the time was 18 and I can't believe I was able to lie and get away with it. They never asked for I.D. back then. If you had money to spend they sold you alcohol. Mind you, the drinks were so watered down, draft beer at five cents a glass was like water. 

So by hanging out with older people I think I grew up fast. 

Dating was awkward. I was in the closet. Most girls looked older than me too. I was afraid of anything that might progress into having sex, or that I would I get laughed at because other people my age were developed a lot more than I was. Would the girl know the difference? Someone told me that if it was the first time for the girl, she wouldn't. 

Then everyone began to settle down, getting married and having kids. I was under pressure to do the same, mostly from myself. I couldn't come out. I was introduced to a girl on my 18th birthday and we dated a while, then ran off and started living together. By the time I was 23, I was the father to three kids. It wasn't a good relationship, I loved being a father but not a husband. At 25 it was all over, I felt like I had been raising four kids, not three. I felt trapped. What had I done? I didn't have a father around, I didn't know what I should be doing. The only thing that helped me was telling myself to be the father I didn't have. 

When I left the marriage, I thought I was free, but I wasn't. As it turned out, there were so many new things to take care of and more learning experiences. There were times I wished I had done things differently, by staying in school. But the present was real, it needed to be taken care of NOW! My friends and family were there for me but I was responsible for what I had to do, no one could do it for me. I asked, believe me, I did ask and am thankful now for the ones who would say, no. 

Now I often find myself sitting back and thinking, what parts of my life would be different if I had made different choices. The same answer keeps coming up - probably most of it. 

Like I said, the older you get the more things you have to remember. Everything I've done hasn’t been without some thought. I think I just created different options, and in some cases I was under the influence of other people  - or mind altering beverages. 

Now that I'm older, decisions in life are much more limited. It’s a good thing because I have plenty of time to remind myself of what I can do and what won't work. I use to say, "my body doesn't realize how young I feel", but I think my mind and body are closer in sync now. I'm alive, I am still useful for many things and I know I will be able to enjoy life more. I'm not always as good as I once was but the things I can do, I do better. 

I've often been called a smartass for some of the sarcasm I come up with at times, something I inherited from my mom. This behaviour comes in handy now, at this age. For instance, I was trying to hurry transferring to another transit bus one day. The driver had already closed the doors and wanted to get going but could see me coming waving my bus pass. I got on and thanked her for waiting for me and said, "thanks, my hurry up has slowed way down". 

Growing older has its bad parts, but a lot of good parts too. No more lessons to learn, opinions and advice and wisdom to share. I've learned not to be too opinionated or give advice without suggesting a solution. Make the other person help themselves, like you had to. 

I'd like to change that postcard now to say "If you grow up too fast, it can be a trap". Make your life fun so you can tell it while laughing your head off when you're older. 

You can follow The Grumpy Cat on Twitter: @TheGrumpyyCat 

This article by Myles Helfand first appeared in TheBody.com here.  

Plenty of scary headlines have made their way across the Internet in recent years, decrying the body-decaying effects of getting older and portraying the sense that HIV (or HIV meds) causes people to suffer these problems at far higher rates far earlier in their lives. And by "far earlier," some experts felt we were talking as many as 20 years earlier, according to some of the first research that explored the issue.

But the problem that often occurs with early research is that it's ... well, a bit premature in its findings. "There certainly is more of a trend for HIV-positive people to be a bit younger" when they develop certain health problems, says Amy Justice, M.D., Ph.D., a professor of medicine and public health at the Yale School of Medicine. "But when I say a bit younger, we're talking about somewhere between one and six years -- we're not talking about 20 or 30 years."

Justice should know: She is one of the world's leading researchers on aging and HIV. As the lead investigator of the massive Veterans Aging Cohort Study (VACS), it's her job to delve into one of the largest troves of information in existence and help us all better understand the ways in which HIV intersects with other health problems that emerge as we get older.

What she and her team have found is rewriting much of we thought we knew about aging and HIV. It's also helping us figure out some concrete steps we can take to prevent or treat health problems we associate with "premature aging."

A Rose by Any Other Name

To begin with, our whole approach to the idea of "early aging" misses the mark, Justice says. "If you talk to anyone who is a geriatrician -- who studies aging -- they will say this concept of 'premature aging' is a misnomer," she explains. "If you look at anyone with chronic disease, they look older than someone without chronic disease."

The problem, Justice says, is not that people with HIV are "getting older" more quickly. Instead, what happens is that HIV, like many other chronic illnesses (such as diabetes), sometimes triggers or worsens other health issues -- many of which we're naturally at greater risk for as we get older. "Are people who are sick and have HIV more frail, more likely to have problems with their health, than someone who's not? Of course they are," Justice says. "Why do we have to invoke 'premature aging' when we talk about that?"

Defining the Risk

Through her work with VACS, Justice and her colleagues have uncovered some of the most reliable information we've learned to date about the timing of various health problems in people with HIV.

Here's how the study works: More than 7,400 people living in or near eight U.S. cities are enrolled in VACS. The HIV-positive people are "matched" against HIV-negative people who otherwise have extremely similar characteristics (such as age, location and race). The study then follows these people over time and records when they develop various health complications.

A slide from a presentation given by Amy Justice at an HIV/AIDS conference in 2012. (Click the image to enlarge it.) It compares the average age at which HIV-positive people and HIV-negative people enrolled in VACS were first diagnosed with certain key health problems. ("MI" is short for "myocardial infarction" -- i.e., a heart attack.)

When comparing the HIV-positive people to the HIV-negative people, VACS has found that HIV-positive people:

• Develop kidney failure about four years earlier.
• Develop lung cancer about two years earlier.
• Develop cardiovascular disease as much as six years earlier -- but do not begin to experience heart attacks earlier at all.
• Develop liver cirrhosis about one year earlier.
• Fracture a bone due to bone weakness one year later.

This isn't the only research being done to make more accurate estimates of how much "earlier" people with HIV develop health problems. Less than two years ago, a major study funded by the National Cancer Institute found that previous estimates drastically overestimated how much earlier people with HIV develop certain cancers, because it didn't properly take people's ages into account.

But why is it that studies such as VACS manage to find such a smaller age difference than earlier studies had found? Which findings should you believe more?

Making Sense of the Research

To determine whether HIV-positive people have a "greater" risk of developing certain health problems as they get older, researchers have to compare those HIV-positive people to a group of HIV-negative people. Who those HIV-negative people are, and what measurements researchers use to examine them, makes all the difference. 

People with HIV who are visiting a Veterans Affairs hospital in Los Angeles are likely to be very different from your average HIV-negative people living in a Massachusetts suburb. For instance, they're more likely to be people of color; they're more likely to be from an inner city; and they're also just more likely to be sick in the first place, since they're the ones visiting a hospital.

Another slide from a presentation given by Amy Justice at an HIV/AIDS conference in 2012. (Click the image to enlarge it.) It shows some of the key results from a study published in the Annals of Internal Medicine that corrected earlier research which drastically overestimated how much earlier people with HIV develop certain cancers, because it didn't properly take people's ages into account.

All of these kinds of factors -- race, location, gender, income, access to health care, average age, you name it -- can impact the risk a person has of developing a health problem. Sure, an HIV-positive black man working a low-wage job and living in an unsafe neighborhood in Los Angeles may develop heart disease many, many years earlier than an HIV-negative white man living in a million-dollar home in Weston, Mass. But is it the HIV that's to blame?

Studies like VACS try to level the playing field by comparing groups of people who are as similar as possible in every measurable way -- except that one group has HIV and the other does not. Very few studies like this exist, because finding enough HIV-positive and HIV-negative people to match in this way is extremely difficult (not to mention extremely expensive).

VACS is not the be-all, end-all of studies on aging and HIV. Researchers are constantly looking for ways to refine their studies, enroll more volunteers and make their results more reliable. But as you saw in the list above, what we've learned so far is enough to dispel some widely held myths about HIV and aging. It's also enough to give researchers some insight into how people with HIV can reduce the risk that they'll develop various health problems as they get older.

The Power to Change

"'Premature aging' -- I think it frightens the living daylights out of people," Justice says. "It suggests there's nothing you can do: You'll be 70 when you're 50, and when you're 70, you'll be 90. I don't think that's useful in clinical care."

In hopes of helping HIV-positive people and their health care providers combat this feeling of helplessness in the face of the relentless passage of time, Justice and her colleagues have developed a tool called the VACS Index Calculator. The tool, which is available online -- and even has a mobile-friendly version -- pulls together all of the research VACS has done to date and attempts to answer the question: "What are my odds of dying?"  

OK, yes, it's a terrifying concept: You check off a bunch of boxes -- age, sex, race, CD4 count, HIV viral load, liver enzymes and so forth -- and the calculator spits out a single number called your "five-year mortality risk." In other words, your risk of dying within the next five years.

But here's why the tool isn't remotely as terrifying as it seems: It's not a prediction. It's just VACS telling you, "Among the people in our study who are similar to you, this many passed away within five years." Which means you and your health care provider have the power to change those odds.

"It's a way of gauging your overall burden of disease, your overall susceptibility to further injury," Justice explains. "Whether the [cause] is treatment toxicity, HIV disease progression, diabetes, smoking, alcohol -- it reflects all of those things, in terms of looking at their injury on your major organ systems. And, by determining what else is going on in your situation, helping you pinpoint what things you might be able to do to improve it."

The VACS Index Calculator is still in development; Justice hopes over time to add features that may delve more deeply into people's behaviors and life habits, and offer some suggestions about changes they can make to reduce their mortality risk and stay as healthy as possible. She encourages people to use the tool, offer comments on how it can be made even more useful for them (there's a survey link within the tool), and discuss the calculator's results with their health care provider.

"I think the more information you can give patients directly and the more time they have to think about what questions they may have for their providers when they go to see them, the better, the higher quality, the more meaningful the interaction is, and the more likely the behaviors [that increase their health risks] will really change," Justice says.

In the meantime, Justice and her VACS colleagues -- as well as a number of other research teams around the country -- will continue their efforts to more reliably explore the real risks of HIV-positive people developing various health problems as they age.