Ron's POZ Blog

I called one of my sisters the other day with a sprightly, “How are you feeling?” I asked this because I knew she was under the weather with a head cold and cough and tried to make it a point to sound upbeat. She nastily replied that she still had a head cold and a cough, she hasn’t been sleeping the past couple of nights, AND her back was sore again, AND she had SO many things to do. (She has chronic back pain from deteriorated disks and has to have injections every 6 weeks to help deaden the pain. I am always very empathetic and sympathetic, because it has to be terrible. I just have an every now and then bout with sciatica, so I have a “teeny” idea.)

I was taken aback by her brash commentary and could feel the hair on the back of my neck stand up as the blood rushed to my face and quickly and very snippily said, “You know what? Call me back when you feel better!” She changed her tone immediately and tried to apologize for being so “crabby,” again reminding me of her back problems which where compounded by the cold and lack of sleep and that she had many things to do.

I quipped, “I think I can understand, but look at me! I can piss and moan all day, but who is it going to help or give a damn?” It got quiet on her end of the phone. I rarely play the “HIV/ AIDS/ PML” card, but she hit a nerve with me. She just apologized again and agreed that she knows my plight is very difficult, cannot compare my issues with hers and she concedes that I have rarely complained and continue to try and strive for normalcy from a wheelchair.

I think because my T-cells hit 789 and seem robust (other than the wheelchair!!); sometimes people forget my limitations. I get upset too though if people treat me “handicapped” like whispering if you need something or asking loudly if you need something else. So, I guess either I am ashamed or deaf!

I detest being treated so differently like I was helpless and will constantly leap at the chance to prove that I can do many things to many people – family, friends and strangers. I do constantly try to push my therapies and exercises because, honestly, no one knows PML and what it can do to a person and every case is unique. I do not idly sit and wait for a miracle while blaming everyone else for, basically, my own poor judgment.

My pain and aches are mine alone and yours is yours alone and I cannot realistically relate - that's very presumptuous to believe otherwise! I can be soooo sympathetic, but that's my true limitation and I am fine with that.

Yes, I miss my life and am constantly pushing my limits with a sincere hope to get all the good things back. I do not want my total pre-PML life back – that is not very realistic, but it sure would be damned nice to have most of it!