Ron's POZ Blog

I was very forcefully reminded by one of my sisters, the one I live with; the one I’m closest too, when at the end of a phone conversation, she remarked, “I don’t think people really understand what you went through and what you do now.” I wonder if “forcefully” is the right word to use, but it was like being snapped back to reality; the reality of how people, even friends, view me.

She ended our phone call with it because we were catching up on our week. She and her husband travel a lot for work and have been on the road since January 7. We go through our checklists: bills, parents, siblings, the dogs, the weather, my most recent projects or phone calls and just plain old gossip!

Her comment was in response to a conversation I had with friend of mine – HIV negative, living in Philadelphia – with whom I just reconnected. His first lover had passed from AIDS 12 years ago and he was seeking information on my PML, what it did to me and how am I managing now. He was curious as to why I wasn’t walking – if the muscles in my legs had wasted away to the point that I can’t walk. I chuckled at his question and laughingly told him, no, that I could probably break a horse’s leg if I kicked it. (Jeesh, I wonder – how much can I press with my legs now?) I explained my bout of the PML and how it wrecked my balance and coordination back in its fury.

I told him since early 2001, I have been religiously doing my stationary bike almost daily and that added with parallel bars, calisthenics, Pilates and my walker; leg muscles are not my problem for walking. In fact, I am more fit with more muscle than when I was 25. My balance and coordination were and remain the problems. In the beginning of 2000, I couldn’t even sit up and when I did lie down, sometimes I felt as if I was falling and, my coordination – gone from my legs, first; then my arms and hands. But, then over time and constant therapy and exercise, bit by bit, I was able to regain parts back and thus, that part of my life.

So, my victories from late 2000 to now are endless to me. First, I learned to sit up again, then onto feeding myself as my balance and some coordination began improving. My mind began to wrap around the idea that I just may be around for awhile as my T-cells climbed and viral load kept dropping (I’ve been undetectable since July 2001).

I really didn’t push myself or have any ambition until that same sister had me go to an intensive in-patient rehabilitation center for 2 weeks: physical, occupational and speech therapies. I don’t know why that place motivated me so – maybe seeing all those other people with disabilities, especially the more youthful ones - children fighting something they had no control over; accident victims and even addicts who fried their brain. But, I always say thanks to her.

I began wanting my independence back when I returned home, so I began working on things myself and through some energetic home therapists. I began practicing my handwriting for that and my fingers’ dexterity; I began reading aloud to clear up my voice; little things to make me feel normal again. I began an honest attempt at a parallel bars and calisthenics routines too.

Personally, I felt like the world was paradise when I finally was able to go to the bathroom unattended! (Like a toddler all over again HA HA). Little by little, I re-taught myself to shower, shave and brush my teeth using determination, some ingenuity and handicap accessories suggested by helpful therapists.

As my strength returned, so did some of my balance and coordination. It was a little bit of a surprise to me, to begin re-gaining coordination in my hands and arms and my sitting balance first, since they were the last affected. I eased my mind by telling myself that they also had the least amount of damage done. Good opinion, I think!

I got to the point that I didn’t need a companion to do the cooking or help me with my daily regimen – I felt great! Now, I could be ALONE! Ahh, blessed quiet to reflect or imagine – to be lost in my own mind in peace.

I continued to improve and further pushed myself by added therapies and my own gumption to try things, anything, that might help me get better faster. I kept increasing my time on the bike and with the help of friends, added to my calisthenics. To keep me from boredom, I began getting all kinds of books to read aloud and got a Spanish Level 1 book for my handwriting practice.

My sister got me into using her computer, so I began contacting old friends and co-workers through e-mails – lots of e-mails!! Typing was a tremendous therapy for my fingers and I then began writing a book because it is something I always wanted to do and now I had the time. (After 3 re-writes, hopefully it will be published soon.) I enjoy writing which can use my imagination or memories to create such a work. In a very odd way, if I had never gotten the PML which sidelined my old life, I wouldn’t have had the time to write. I have even begun a second book.

I was always trying things to help my standing balance and my core, so I tried an exercise ball, Tai Chi and Pilates. I would add exercises to the parallel bars and spent more time on my walker. I am adamant about therapy as an out-patient at a nearby rehabilitation center. I make sure to do whatever time my insurance allows every year, hoping I improve more or learn something new each time. I enjoy water therapy now the most and feel it accomplishes much more.

Well, now I focus on my standing balance and the coordination in my legs in 2008 – trying to build up my stamina for walking. I have incorporated some things I learned in Pilates and Tai Chi into my calisthenics routine. I try to do as much as I can each day, very mindful of the strain on my back. Over the past 2 years, I have suffered backaches every so often because I get over-zealous in my quest to walk.

My Philadelphia friend was amazed that I did all the Christmas decorating myself, can clean, can cook, etc. and asked me how I managed all this from a chair. When I told him that I can stand, he asked incredulously, “How?” Since my power chair weighs a lot, it makes a very useful brace. I just use it to place the backs of my calves against it for added support, and voilá, I can stand! So, I can do things within arm’s reach when standing: decorating, dusting, putting dishes away or getting them, etc. I rarely think of what I cannot do, but rather, how can I do this? My improving standing balance allows this feat and even short periods of total free standing!

We chatted about how I re-write all my lessons in Spanish or French now to keep my handwriting legible and alleviate my boredom of such a trivial yet important therapy. I regaled him on my getting a paint-by-number painting with very small and varied spaces to fill in – this would help me even further in my control of a paint brush, and my patience, because I hope to attempt a new painting soon.

He couldn’t believe that I was driving again. I told him that it was a goal. I also really wanted to have some of my freedom back – meaning not having to beg or hope somebody’s schedule allowed them for a ride or to do something. Now, my only worry is the weather.

So, I guess I am a determined individual with a very pro-active view of life constantly challenging myself mentally and physically.

But 8 years later, I am still in a wheelchair and doing everything possible in my life: showering, personal hygiene, cooking, cleaning, playing ball with the dogs, shopping, shoveling snow, raking leaves, sunbathing, road trips, art projects and small home projects!

Most people only see the wheelchair and balk, and those that can handle the wheelchair usually scamper away knocking down small children and pets when I tell them about the HIV. Some people show compassion and talk to understand further. The most inquisitive – children, teenagers (surprised me too!) and the elderly.

HIV – (sigh)

Gay men smile, but the sight of a wheelchair weeds some out immediately and if we manage to talk, the HIV tends to finish the weeding process. In keeping with the gardening analogy, what are left are those precious few beautiful human beings with fantastic souls and warm hearts.

The only thing worse than meeting a guy in person, is the Internet – oh, yes, those wonderful gay or POZ sites where you might connect. I won’t even have to name them – I’m sure they are well-known. I really would like to connect with someone and I really plan on trying even still but I have to say one thing – hypocrites. Such hypocrites, and some of the worst are the HIV positive men who really should know better, but hang onto their outdated self-important views and I will elaborate before I get blasted for being overly sensitive and lashing out. I really just want gay men to be truly honest with themselves – look inside and if they are not what they say – don’t write or say it. If all you want is superficial gift wrapping with no real substance, put it out there!

The men all say how friendly, intelligent, romantic, affectionate, outgoing, honest, caring, empathetic, spiritual, loving, passionate and so on that like cooking, art, books, music, animals, children, laughing, having a good time, etc. etc.

Oooo, and their best features: eyes, smile, heart or personality!!!

And, ooo, ooo, they value friendships, love and laughter too!

BUT, I absolutely love the guys (POZ too!) that claim they treat all people they way the wish to be treated, try to do something nice everyday and believe that life is
a never ending challenge to try and improve oneself, to self-educate, to learn more, experience new things, and broaden the mind.

We all can roll our eyes here. I can gag from reading and hearing this nonsense over a hundred times and I am sure I will continue to hear or read it because I will continue to believe that there are good people. Just, believe.

I do know there are men out in this world who are truly what they say and I found a few, both negative and positive, handsome or not so handsome, athletic or average or chubby – but they have something so special – beautiful souls and hearts.

We write and/ or call each other to vent, laugh and learn. Those that are close enough, we go shopping, have lunch or dinner and just have a great time. We chat about everything, never mind that I am not their idea of a perfect match nor they mine, but discuss life. We learn a lot from each other and I am glad that there are those who challenge their mind and heart to appreciate life. They truly understand how I view life from a wheelchair and my HIV/ PML, so I feel that not all is wasted in my quest for honest behavior.

I have learned from these men that I am more than just a wheelchair, more than just HIV. So, when un-intelligent, thoughtless, nasty remarks do come my way, or that awful silence, or that look as if they just had seen something hideous – I remember that not all people, gay or straight, are made the same inside.

I still believe.

Sappy, huh?