Last Wednesday, this amazing thing happened.
I like that. It's a good start.
It comes courtesy of our friends Ros and Dave. Dave has MS, and if you don't know what that is, then you should find out. I reluctantly admit that I had very little knowledge of just how it worked its nastiness till after everything changed for me. Until then, illnesses such as multiple sclerosis and cancer were what other people got.
Ros sent me this link to a story on an excellent blog. I admit that I don't know just who Wheelchair Kamakaze is, but gee, I like his style.
I was totally blown away by this paragraph. The reason is that it could be describing, with clinical accuracy, just what the tumour in the left side motor centre of my brain is wreaking on my body, and the frustrations that come with it.
Not only am I sick, but I’m sick of being sick. I’m sick of dragging around a useless right side as if it were a carcass, even while my left side continues to weaken. I’m sick of relying on the kindness of others to cut my food, zipper my jacket, and button my pants. I’m sick of the prospect of taking a shower being as ominous as the prospect of taking a trip to the gallows. I'm sick of the fucking wheelchair. I’m sick of only being able to sleep in two-hour spurts because whatever position I’m finally able to fall asleep in invariably becomes so uncomfortable that it interrupts my dreams. I’m sick of muscle spasms that make my limbs shudder and shake as if possessed by demons. I’m sick of always being so goddamned fatigued that calling what I feel “fatigue” is like calling the Queen Mary a dinghy. I’m sick of the meds and I’m sick of the lack of meds. I’m sick of having to be brave, I’m sick of always seeking the peace within, and I’m sick of not having the freedom to let my mind wander, because it could very well wander into a real-life horror story too demented to be conjured up even by Edgar Allen Poe. I’m sick of watching my dwindling abilities turn into disabilities, of looking on helplessly as my world gets smaller, of watching the walls creep in. So much for my being an inspiration, I guess.I haven't been subjected enough to the wheelchair to to summon up the adjectival expletive above, but even ours, smallest and lightest possible, is still an awkward creature to carry and use. Nearly everything else is right on the money.
But the question raised in the article was an interesting one. It made me wonder how much the cool, calm appearance I project most of the time [not all; ask Tracey] hides much more repressed anger as well; anger that the blogger was releasing so eloquently in his entire posting. Please read it!
Most of the time I just don't feel that angry. What is it that makes me angry? I guess the myriad of small things, and some big ones, that make me lash out at times. A lot of them are merely frustrations, but some are serious because, purely selfishly, they can lead to rash decisions on my part that could be fatal for me.
I've said many times that I don't feel the 'injustice' of having this brain tumour when I consider the genuine injustice that plagues the globe. By any world comparison, I've had a dream run, so let me not go back down that well-worn track. I do get angry about the injustice, the cruelty, the selfishness and irrationality we see all around us, but as I said in my previous posting, there's usually precious little we can do about most of that.
What makes me angry on the personal level is being disappointed in myself for some reason, and much more so if that comes out in an unjust criticism of anyone else - as it often does. This is especially true of anger seemingly directed at those on the spot, Tracey and Christian, who have shown nothing but continuous care and concern for me. That sort of ingratitude causes stress that rebounds on us all and keeps me awake at night when it happens.
I see that I've managed to turn a vice into a near-virtue somehow. It's not. As my friend Joan says of me, taking her cue from The Life of Brian:
He's not the Messiah. He's just a very naughty boy.And I have no idea why Tracey should have thought the opening words of Mr Kamakaze's piece were so funny that she nearly choked. I ask you, what's so hysterical about this?
My wife attends a monthly caregiver support group, though I can’t imagine why, since I’m such a prince and always a tremendous pleasure to be around.*
*Wheelchair Kamikaze, "The Rants, Ruminations, and Reflections of a Mad MStery Patient" http://www.wheelchairkamikaze.com/2013/04/anger-mismanagement.html