Have
you seen me?
There are people in our community who stand out because of something obvious in there appearance, be it physical or style of attire. We might not have met these people, but if they are mentioned, most people know who you are talking about.
My friend Purple Mark comes to mind. He is someone I saw out and about for several years before actually meeting him. He dyes his hair to match his wonderfully outlandish clothes. Almost everyone on Capitol Hill has seen him at one time or another. There is also the Rainbow Lady and any other person with an obvious physical challenge whether they are blind, deaf or have Cerebral Palsy. These people are in our consciousness because there is something about them that makes them more noticeable. I am one of these people. I do not stand out because of a naturally occurring physical challenge, or because I have an outstanding sense of color. No, I have HIV and for reasons I will explain, it has affected my mobility.
In the HIV community I am referred to as an LTS or, Long Term Survivor. I was first given this distinction in 1990 when I attained the ten year mark living with HIV. Since 1988 I have had HIV related neurological issues. First off, I was diagnosed with Chronic Inflammatory Demyleanating Polyneuropathy (CIDP), try saying that five times fast! It is an auto-immune disease which, in simplest terms, the body attacks itself. In this case it was my nervous system. CIDP progresses slowly and over time I lost the ability to do basic daily activities. At first I was able to hide the symptoms. I think I was hoping that whatever the problem was, it would clear up. Eventually I became to weak to work and had to live with my family for a while. When I progressed even further and needed more help, I ended up in an assisted living home for people with HIV. It was a very stressful environment. In the year and nine months I lived there 15 people died, some of the house members had dementia, and I had to deal with sub-standard care.
My body became so weak that I could not do many basic tasks for myself because my fingers and wrists no longer moved and I could barely raise my arm more than a few inches. Walking had become almost impossible and I had so little control of my body my friends "affectionately" called me Flipper! It was a pretty accurate moniker since most of my body parts at that point just kind of flopped around.
Eventually, I found a doctor who knew how to treat the problem. When he said to me "I know what is wrong with you and we can fix it," I broke down in sobbing tears. It had been over three years since the first symptoms had appeared. I had seen countless doctors for the problem, all of them saying there was nothing to be done. One neurologist, in January of 1990, even went as far to tell me that in a year I would be dead or on a respirator. I am thankful I did not buy into his scenario! Over the next three years, after treatment, my strength slowly returned. When I became strong enough to be on my own again, I moved back to Seattle.
At the tail end of recovering from CIDP, I developed inflammation in the base of my spine. Apparently this is a very common problem in LTS. Rather quickly, problems developed with all of my functions from the waist down. My bladder, sexual function (praise to Allah for Viagra!), and the ability to walk. Next thing I knew, I was in a wheel chair and told that I would never walk again! To say I fell into a depression would be an understatement. Frankly, I was suicidal. Mind you, I had always been seen as the upbeat, deal with anything kind of guy. Roger Rabbit is my hero because even when the chips where down, he could still laugh and most of the time, so could I . I was even introduced once at a speaking engagement as "The guy with the positive attitude from hell!" This however, was just too much. After six years living with CIDP, struggling to stay positive, and now this? I thought "What kind of sick cosmic humor is going on here? Two neurological problems in one lifetime that cause paralysis, give me a break!"
After a couple of months of allowing myself to wallow in depression, I literally willed myself out of the wheel chair. I walk fairly slow and cannot do a lot of things I did before but, I am upright and bipedal again. Sometimes people stare and the less timid will inquire as to what is "wrong" with me. I am much less self conscious than I was a few years ago. Sometimes I allow myself to have an emotional "meltdown" and let off some steam to stay sane.
So why am I bothering to share all of this? Because HIV robs a person of so much in life such as career, health, friends, home and not to mention life itself. I am angry, frustrated, and sad. People in our community dying in larger numbers again and it makes me nuts to hear of yet another person being diagnosed with HIV. It also makes me crazy in the head that guys, especially young ones, do not get it. When your body contracts HIV, you HAVE A DISEASE! Whether it is visible or not, the body is immediately compromised. I have the idea that we should do away with the terms HIV+ and AIDS. How about just saying HIV disease? After all, we do not say some one is cancer + and then they have cancer later. Having HIV is a disease, and it SUCKS! I am well aware that there are many in the community that are burned out on this subject, I am one of them. If we keep turning a blind eye though, more people will get continue to get sick and die. We need to find the strength in ourselves to once more come out into the community and get involved.
I also have the experience of feeling like a living ghost. All of my contemporaries are dead. Having worked in the HIV community since 1987, I have gotten to know many people who have since died. It’s an odd feeling to have survived so much and have the memory of all those people who have gone. I really do not want to experience another wave of people getting sick and dying, but I cannot help but feel it is coming. Just this week, as I am writing this article, another friend showed up in the obituaries in the paper. He was a young, vibrant, and talented young man. I am tired of continually having this heavy pain in my heart.
There is one group in this country that I have been very impressed with their prevention work. They are in San Francisco and are doing what I refer to as "guerilla" prevention ads. They are actually putting up photos and stories of men with HIV on billboards and buses. Some people are appalled by this, but I think it is very brave and I would like to see more of this.
I think it is time for Seattle to start some real dialog about what to do in our community. We need some fresh ideas, reinvent the wheel, and get more reality based discussion about how to curb the infection rate. With the current administration not increasing funding for HIV prevention and treatment, it is time to get back to "the good old days" of grass roots prevention and support for people with HIV.
So, I stand out in the community. This is not by choice, but a matter of circumstances. Every day is a challenge to keep my head up. I am also well aware the in my life there is a bit of an "undertow" of depression tainting my daily experience. Using the 12 step motto, I just take life one day at a time. Sometimes it is just one hour or minute at a time. I am incredibly lucky to be blessed with a loving partner, good friends, and an amazingly intuitive friend, Miss Jessie (my cat).
About
the Author
Mark Allen is the founder
of Thought Recipes -- coming
soon to an online site near
you!
