From our special correspondent....
I am sitting next to him whist he writhes unwillingly from the effects of his most recent dose of medication. To be honest at any time of day he struggles to control the extra movement given by the very drug that is prescribed to help him. I liken his movement to him being in his own earthquake and let me tell you that it takes some balancing tricks for him to stay upright. You’ll often see our dog running for cover and I constantly fear for his safety and the safety of the things around him. If he falls lives could be lost!
He was 6ft 5ins and so proud to stand out above the crowd. Now barely ever upright I forget that he is so tall. The disease has contorted his body and he struggles badly with his posture. I get frustrated with the reported textbook symptoms of the disease and tired of the endless changes that he, and we, have had to become used too. Thankfully I’m pretty sure that he is totally unaware of the sadness I feel seeing the devastating changes this disease has made to the man.
Once upon a time we would argue over the amount of money he spent on designer clothes and all of the things he felt he needed to create his image. He was rather proud of his appearance and more than once attracted way too much attention from the ladies! His career choice put him in the limelight of many social and corporate events and he knew exactly how to entertain and charm both sexes. These days he has very little interest in how he looks and seems not to care at all about how the world sees him. Clothes are just a necessity, and on many occasions more of a hindrance.
Back to the present and finally he gets comfortable after the meds have worn off a little. Taking advantage of the calm he sits and becomes absorbed in the daily offering of sport, one of the few pleasurable activities that hasn’t been taken away from him. My life now has a soundtrack of race cars, football fans and the impressive selection of podcasts you can get on an iPad. I miss the quiet.
I’m wondering how he manages the frustration, or is that frustration just mine? I think I project my feelings onto the situation and maybe he is genuinely happy in this new role, or just resigned to the changes. Trouble is, I haven’t changed, I’m still the same. I measure this new person to the one I knew before and I hardly recognise him these days. I am almost brought to tears at times when I see his hostile expression and his disinterested glare. Although I know they aren’t a reflection of his mood or his opinion it still disturbs me. We all take for granted the ease of communication, the look you can pass to someone who knows you well that gives away exactly what you are thinking. Our communication is now more purposeful and often I feel like I’m talking to him as if he were a child, repeating myself and constantly getting him to repeat himself. I know that there are times when neither of us bother as it’s too much trouble. However, I often chat away in the hope that I’m filling him up with the information of the day.
It sounds selfish letting my thoughts dare turn to complain but I can’t help allowing the bitterness to creep in, a bitterness that should sit firmly on the shoulders of the disease and certainly not the man who has it.