MS stinks. It frightens people away, it has caused the loss of my job, it has lost me friends and more because of my unfortunate “brain spasms” and depression. It is no sunshine valley, but for some reason, like most of the people I know with MS, I am determined to be cheerful – something that I find most annoying in others! Maybe it’s the brain lesions…;-) I have probably evolved into the most annoying morning person I know, as I wake to find I can still walk, and by Jove, nothing else seems so bad!
But the future of increasing disability is pretty chilling. I’ve been for help but most people look at my exterior and think I am coping wonderfully or offer ersatz help, like “are you taking supplements?” or “play the recorder – it will make you feel better…” Well, I learned to play the Recorder at age 12. I’d like to think I could do something more significant with the rest of my life than blow on a wooden tube, no matter how pretty it sounds.
But the future of increasing disability is pretty chilling. I’ve been for help but most people look at my exterior and think I am coping wonderfully or offer ersatz help, like “are you taking supplements?” or “play the recorder – it will make you feel better…” Well, I learned to play the Recorder at age 12. I’d like to think I could do something more significant with the rest of my life than blow on a wooden tube, no matter how pretty it sounds.
I need MORE.
And I think that’s the general claim of my MS – no, wait, I need MORE! More life, more chance to give back in gratitude, more learning, more time to love and be loved, more walks in the woods, more skating on the canal, more exercise, more touch, more air, more rain, more sun, more….
Every day becomes a greedy grab for anything I can get, even if it’s a smile from a small child in a restaurant, , a breath of fall-freshened air, a cheerful “have a great day” from a cashier, a kiss, a taste of a perfect raspberry, or a slurp of a slighty melty chocolate bar. Like my two year old self, I think “I wantit!”
Sometimes it leads me astray; too much chocolate leading to that unsightly swelling about the tum, or relationships with unsavoury individuals who have won me through that kiss.
Sometimes it makes me decide too quickly, and pay for my errors later. I apologize more than ever before, unsure of whether I have offended through some unwary utterance.
Sometimes it leads me to bliss, like my glass blowing class that taught me the joy of creating from molten hot semisolids, or the meeting of someone wonderful through sheer luck and happenstance.
And I think that’s the general claim of my MS – no, wait, I need MORE! More life, more chance to give back in gratitude, more learning, more time to love and be loved, more walks in the woods, more skating on the canal, more exercise, more touch, more air, more rain, more sun, more….
Every day becomes a greedy grab for anything I can get, even if it’s a smile from a small child in a restaurant, , a breath of fall-freshened air, a cheerful “have a great day” from a cashier, a kiss, a taste of a perfect raspberry, or a slurp of a slighty melty chocolate bar. Like my two year old self, I think “I wantit!”
Sometimes it leads me astray; too much chocolate leading to that unsightly swelling about the tum, or relationships with unsavoury individuals who have won me through that kiss.
Sometimes it makes me decide too quickly, and pay for my errors later. I apologize more than ever before, unsure of whether I have offended through some unwary utterance.
Sometimes it leads me to bliss, like my glass blowing class that taught me the joy of creating from molten hot semisolids, or the meeting of someone wonderful through sheer luck and happenstance.
Overall, the balance seems adequate, but I *am* a bit glowy from a wonderful weekend. And what is my reaction to that weekend?
Like my two year-old self - I shout "Again! I want to do it again!"
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