Writing about being written about

I was quick to post this link to Facebook yesterday from a website in Princeton which featured an interview-by-email with me on the subject of blogging about HIV/AIDS.

Shruti Kalra, the writer of the piece, first contacted me early in the year, wondering a few things about me and this blog, and I wasn’t long agreeing to an interview which, with my limited web technology, meant answering a list of questions and emailing them back.

Surprise, surprise – I wrote more than Shruti needed but, and I hope she doesn’t mind me doing this, here are the questions and the entire answers. You might even recognize yourselves in places. (Isn’t this just like the bonus material on a DVD? – again the technologically-challenged version):

1. What is your age, occupation, hometown or current residence?

I just turned 50 last October (a milestone for anyone, let alone me). I have been on long-term disability since 1990 when I found that I could not work with the stress of HIV. I left what was my job in an international reservations centre for a Canadian hotel chain. Prior to that I worked for eight years as a radio news reporter in St. Catharines, Ontario, having completed an applied arts college program in 1980 in journalism for radio, television and film.

I grew up in Salaberry-de-Valleyfield, Québec, a suburb of Montréal and, after working in St. Catharines, I relocated to Toronto which has been home now for 22 years.

2. When were you diagnosed as HIV-positive?

The official diagnosis was in March of 1990 but when blood tests from the previous May were checked specifically for HIV antibodies they, too, were positive so I use May, 1989 as the date.

3. How did you react to the diagnosis? How did your family members and friends react to the diagnosis?

I think I was kind of numb at first – suspicious that I might be positive but hardly prepared to be given the news. I was, and still am, part of some large support groups so the night I got the news I went to a meeting, told them about my day, cried as I did so, and was warmly hugged and supported by a room with many other HIV-positive people in it – so many of whom I went on to witness in their deaths. So, while I had an immediate nucleus of support, it was very much among the walking wounded – either fellow HIV travelers or friends who were watching a generation within the gay community seemingly be decimated.

Members of my family were, and remain, very supportive. As one of my blog pages notes I had a gay brother who also had HIV. The fall which led to his death in 2007 was indirectly related to HIV inasmuch as he had polymyositis that was severely affecting his mobility – the disease thought to have been brought on, in part, due to steroid use to stave off loss of body mass caused by long-term use of HIV medications.

The year I was diagnosed, when Craig and I were still pretty healthy, my parents and I went on a picnic and I opened the conversation with, “When Craig told you he was HIV-positive to the best of our knowledge I was not.”

Mom knew where this was going and groaned, “Oh don’t tell me…”

But supportive they were.

4. How familiar were you and your family members with HIV/AIDS before your diagnosis?

Well, thanks to our experience with Craig, our familiarity was probably greater than the average family. One of the motivating factors in my being tested was news at the time showing that AZT was showing great promise as an early treatment. I thought I’d better be on it as soon as possible should I turn out to be positive. Fortunately/unfortunately my very first CD-4 count was just under 400 which, at the time, was the threshold to begin treatment.

5. A lot of patients feel overwhelmed by the frequent doctor visits and some feel overwhelmed by all the information they have to get familiar with. What was the most disorienting thing for you?

I feel as if I have almost had to become a student of medicine although over the years I have found it less necessary to understand everything, particularly the inner workings of the virus, and acquire information on a need-to-know basis. So far, I have always managed to stay at least one treatment option ahead of the game. In other words, should my current meds cease to work, I have another major “cocktail” combination as a treatment option.

6. How do you keep up with all the new information on HIV treatment?

I don’t lap it all up as voraciously as I did when I was first living with the inevitable shock of diagnosis but there have been times, such as when the so-called “cocktail” approach to treatment became known, that I read a lot. I was fortunate to be on one of the first such cocktails when its great promise was touted at the International AIDS Conference in Vancouver in 1996, which I attended. I am also under the care of one of Canada’s leading AIDS practitioners so I have access to reliable information from him.

There are a few web-sites, in addition to AIDS Beacon of course, which I follow on occasion. Not all are specifically research-oriented:

Canadian AIDS Treatment Information Exchange (CATIE)
Global Fund to Fight AIDS, TB and Malaria
Global Network of People Living With HIV/AIDS
GNP+ North America
Living Mindfully with HIV
Positive Side magazine
POZ.com blogs
Stephen Lewis Foundation

7. Describe how your life has changed or how you have changed after the diagnosis.

Well, of course, one of the first dramatic changes was leaving work but, in those early years especially, I was able to offer myself as a volunteer in a couple of AIDS organizations.

My decision to leave work was vindicated in 1993-94 when, as my doctor still discusses with people on rounds, I “nearly died” as the result of a long-term struggle with cryptosporidiosis during which I felt like I was literally shitting myself to death.

Almost immediately after my diagnosis I began treatment for major depression with a combination of medication and ‘talk therapy’.

Remember, too, that in those early years my circles of friends were involved with people dying. There were waves of deaths among my peers so I was involved with home-care teams and other community efforts to cope with what was unfolding, all the while believing I could be dead at any time.

As medications clearly started to work in extending people’s lives many of us who thought we would be dead dealt with – and I’m not the first to call it such – the “mind-fuck” of beginning to see that we would survive. It is also fittingly called “survivor guilt” but I maintain that this is preceded by, and often works concurrently with, the m/f.

8. What are some of the complications you have faced after being diagnosed with HIV/AIDS? In your previous email, you mentioned being diagnosed with a mental illness and facing physical limitations due to an accident, can you go into more detail about that?

The major depression was treated for several years with low-dose Prozac and therapy – mostly Gestalt. However, in 2003 I was struck by a car and suffered a broken femur and wrist and was hospitalized for five weeks at the height of Toronto’s SARS crisis which meant a great deal of social isolation.

I soon began to show signs of post-traumatic stress and began treatment and psychiatric care for that. It was particularly crucial that any drug therapy help me sleep which the PTSD had made impossible.

Within a couple of years what I was noticing as an absence of depression had actually become hypomanic behaviour and a diagnosis of bipolar II seemed like a welcome relief. To me, it explained a lot of my behaviour from many years back.

I should also insert the fact that in about 2004 I was diagnosed with type-2 diabetes, the gravity of which I failed to appreciate. (At 6’2” tall and 145 lbs. I could not conceive of the notion that I had what I considered to be a disease caused by over-eating, even though there was evidence that it could also be the result of long-term use of anti-retrovirals, particularly protease inhibitors.)

The bipolar II has been under control now for the better part of a year but it requires the discipline of taking night-time medications which I sometimes prolong if I’m feeling “up”.

9. Has this blog help you meet or make any connection with other individuals?

Reader/commenters aside I can’t say that it has facilitated any important meetings with new people, that I can think of, but the variety of topics I blog about, other than HIV/AIDS, has probably generated more activity. Some of my political blogging, for example, has led me to meeting with blogging political candidates. When I considered running for political office myself (one of the symptoms that led to my bipolar II diagnosis, by the way) my musings brought me some of the greatest traffic my blog had ever received. That’s understandable, given the near-manic pace with which political operatives scour the internet for news of interest to them.

Sometimes I feel defensive that I blog about so much more than HIV/AIDS but, as I said, the traffic bears out interest in other things and my life is about more than AIDS. Besides everything else I blog about is part of the passion I bring to life. When I blog about a news item which has caught my attention that’s the journalism background speaking.

10. Would you recommend blogging to other patients?

Absolutely! As someone who never kept a daily written journal blogging has helped me do that – even if not daily. I have a written record of many parts of my journey.

11. Since your diagnosis, what has been your inspiration?

I’m not sure I know how to answer that, other than to say that I believe that I am no more entitled to the best possible medical care and access to medicines than anyone else in the world. Treatment clearly is working better now in some very poor countries but more must be done to give access to all. I have been inspired by the courage of those friends who were sick and died before better treatments came along and I remain inspired by long-term survivors who continue to live into uncharted waters.

12. Do you have any advice for patients newly diagnosed as HIV-positive?

I would say surround yourself with people you love whom you can trust to share the news of your HIV status. When times are difficult they will offer you support that you would not necessarily seek from a professional. On the other hand, take advantage of any professional help you can. Many great people are trained to walk us through the early days of HIV diagnosis. Because the survivability of HIV/AIDS has improved so much over the years remember to take your meds faithfully and to live each day to the fullest extent possible. Living with this disease can feel lonely sometimes but remember there is not a large + sign on our foreheads. We can participate in life as fully as we wish and are able.


2 thoughts on “Writing about being written about

  1. This is so cool to have met you or at least heard about you from the very same place that is about to feature me as a blogger. I cant wait to see how the article comes out. Yours was awesome. I actually had the chance to speak with the person who id doing the article on me. I am really enjoying your blog

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