So here I sits, like the cat videos, me in a box. A box made of certain limitations, certain walls, some openings, some slides and ladders.
I'm not limited enough that most of my day is spent dealing with my MS, and for that I am absurdly grateful.
I AM limited enough that a large proportion of my day is affected by my MS, and for that, well, I am grumpy.
I have had to retire, from an interesting and challenging career. I left work at 50, after staying home with my kids while we moved around for years for my husband's career. I don't begrudge staying home with the kids. I don't even begrudge moving around. But I feel as if I haven't had a chance to show my abilities yet. It's frustrating to get to a place where things were interesting and then find myself unable to do them anymore. And five years in, I'm starting to wonder what lies ahead.
I had a lot of fun working, using my creative mind on problems. I made a lot of mistakes, I had a few successes, I LIKED it. And then I couldn't do it, I couldn't remember what I was doing, I was so tired I could barely walk, I became hyperemotional and had a breakdown from the disease.
It's more common than you at first hear. I should have known, when I was diagnosed with depression, that my brain was wearing out. I've never been depressed in my life. Until MS came along. Now it's something I battle daily, along with fatigue and pain and decreased mobility.
But I'm young yet. I'm just 55. With luck I have another 25-30 years ahead of me - to do WHAT? There are only so many crafts. I've tried writing, I don't have the mental stamina for it. I volunteer, and I can continue to do that, provided I can have a nap regularly. But is it enough?
I don't know. I search on, looking for some way to make some sort of contribution.
3 comments:
I had to reinvent myself too when MS forced me to retire from a thriving business career at 37. I spent the early days asking exactly the same questions you ask here. Eventually, I started shedding the mantle of the persona I used to be. That was as much a physical endeavor as it was an emotional and spiritual one. Then, bit by bit, other aspects of myself which had lain dormant or undiscovered started emerging. To my utter surprise, I found myself writing fiction. I got a few short stories published but not my novels. As my physical decline progressed, I found myself writing poetry. And, lo, I have just published a book of poetry, which folks worldwide have purchased. And, I look at my book sometimes and shake my head slowly in wonder. I created that! Something as far away from my business executive persona as one can get. Now, I can’t even imagine being who I was, but not in a mournful way. I am happy to have discovered this new me. All of this is a long way of saying, give yourself time to discover the inner talents that may have lain dormant for so long. Something may emerge that accommodates your new capacities. Indeed, allowing that to flourish may be healing.
Your post hit home. Our lives have lots of similarities...moved often with husband's career, stayed home with kids, have MS. Life is out there and I'm not. I've scanned hoards of photos, transferred home movies to today's technology, recorded a ton of family history and write about my earlier years and other people. Where do you volunteer?
Thanks both of you for your comments - I know about the reinvention thing - I've shifted to being more of a writer and less of an active soul, and I'm exploring my creative side as the words slip away sometimes and I need to do something less academic. I volunteer with the MS Society, and also as a teacher of a living well with chronic disease course, which keeps me thinking positive...
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