We talked for a bit about something which has been on my mind of late, something that has troubled me since my symptoms started to become more invisible, hidden by my wheelchair and my life alone. These changes in my body are largely unseen, failed leg muscles hidden by clothing, exhaustion masked by late mornings and early evenings, failing fingers excused away as simple clumsiness. The struggle of getting in and out of bed goes unseen, as this intimate part of my life is mostly lived alone.
When I need to go pee in a jug, I hide away in my room; nobody really knows for real what this is like. They say, "Why not just use the toilet?" What they don't see is the struggle and work needed to transfer out of my wheelchair, the precious time and energy consumed in this process. When I go out, I use my energy to appear vibrant, full of life. When I am in social settings, mostly I just look like a regular guy, only in a wheelchair. If you didn't know better, you would wonder why I am in the chair at all.
It's like the old philosophical saying "If a tree falls in the forest and nobody is there to hear, does it make a sound?" Katie's version is funnier; "If a man makes a mistake in the forest and his wife is not there to tell him, is he still wrong?" The truth is that I am, in most cases, the only one to truly witness this process, the only one in the real firing line. It must be very difficult for those around me to understand some of this, especially when so much of it is like the man behind the curtain, with me, through action, mood and behaviour, telling them to ignore it.
I try very hard to tell it like it is, to be open about what ALS is doing to my body and my life. Even with that, with my frank expressions of what is happening, I often feel alone in this process, in the forest with nobody to hear the sound, or perhaps with nobody to tell me I am wrong.
Your feelings are never wrong, they are YOUR feelings. Your family and friends appreciate your honesty and openness in your blog. Not to just be voyeurs into your private life, but also to see and feel ALS through your eyes. Sometimes it might seem we ask stupid questions,but we really want to know and understand this fn disease that is ravaging your body. If we were truly ignorant people, we would not want to know,and wish it away because it is not us. But I know, because of what I have just been through, that I would rather someone say something, anything, then to have them in your case look over your head, not meet your eyes and pretend the wheelchair was not in the room. You are not just the man in the wheelchair. You are Richard McBride, with all his hopes dreams, and yes, his disappoints and pain at times. You are much more than than just a victim of ALS . You are going to live the life that you have left with as much joy and hope as you can, and on the days that it doesnt seem that you can hold your head up for one more minute, your faithful family and friends will hold you up.
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