Ron's POZ Blog

Is it worth it?

I read Jonathan’s latest BLOG and skimmed through the others and the Forums, but Jonathan’s “Going through the motions,” was like as if I was slapped in the face and told to wake up already like in Moonstruck when Cher slapped Nicholas Cage and said, “Snap out of it!”

Honestly, for whatever reason that crossed my addled brain the past week or so, I had been seriously questioning why I fight so hard and it came down to this today – I don’t want to go back and if my future should end, then it’ll be with me fighting every step of the way. Hard to fight every step of the way from a damned wheelchair, but I will not give up my dream of walking again, even with the looming notion of a wheelchair-accessible mini-van to go hand in hand with my new driver’s license!

Oh, I have to admit, there are the days that I feel frustrated, angry, melancholy and shake my head and say, “why do I deserve this?” or “I did this to myself.” After my brief self-pity tirade, I usually dust myself off (metaphorically), turn my head to the sky (sometimes tear-stained), take a deep, long breath and know that even with all the crap in my life – I have to, NEED TO, go on. Is it just me being naïve and wishful? I would hope not.

I continue my therapies and exercises everyday, most of which I came up with myself (the so-called experts have never had a clue about my PML) because I need to believe I’ll improve each day and someday be “normal.” What is “normal” now? I haven’t a clue.

I manage to do my stationary bike for 4 to 5 miles every day (unless sidelined by a migraine every 30 days or so) to keep the muscle and tone in my legs. Then, later, I spend 30 minutes on the parallel bars for balancing therapies – from free-standing balancing to even hands-free walking a few lengths of the bars, making sure I walk heel to toe – smoothly so as to avoid walking like Frankenstein! And, finally, for the walking part of my therapies, I use my 4-wheeled walker to walk 100 to 200 feet a day – making sure I keep my weight on my hips and not my arms AND roll my feet, heel to toe, in continuous movement to walk smoothly. I have other exercises I do for my arms and trunk (aka – abs – still conceited) everyday too.

Over the past 7 years, I have had to re-learn so much on my daily life which most do without thinking or a worry. So, when I am able to drink a glass of water sans straw and without my hand trembling as I navigate it to my mouth – yes, all the therapies and exercises over the past years DO mean something. When I can throw the Frisbee smoothly and a noteworthy distance for the dog – yep, it mattered to me. Or, how about the idea that I can cook and bake from scratch with rarely a mishap now? Simple spills, not burns or cuts!

As I have always said, every individual’s battles are theirs alone and I would not even dare to minimize their obstacles. I get angry when I hear or read of someone’s resignation and giving up to fate. Fate can be a very funny thing if you think about it – if I had given up in the beginning, my fate would be to die. But, my fate, the fate I, in some sense, can control the outcome of, has allowed me numerous small victories which have added to my life as it is now. It is not the life I ever imagined, but I have decided to make the best of it and do what I can to make it mean something – if only to me.

I cannot even fathom the thought of stopping meds and letting the HIV run its terrible course to hasten my end. The thought of going back through the ill effects of the PML again scares the shit out of me!

I have been extremely lucky by not having terrible side-effects from my meds or OIs and medical issues from the HIV. I only hope that when the time comes when the meds make me ill or I suffer other complications, I can say that I fought and I mattered. I truly enjoy the BLOGs and Forums on AIDSMeds.com because I get so much information through an individual’s own personal battles and inner thoughts. It’s as if a light bulb comes on over me like in the old cartoons – I should try that! Or, I know how that feels. I can relate being HIV positive to many different comments, but only those who have survived PML can truly understand what I have to deal with ON TOP of the HIV.

My life – I think I’ll keep going and see what fate has in store for me, but right now, tears for Jonathan, because I DO understand.