I don’t know if anyone reads this blog you know. I make such a halfhearted effort to post – yet I am prolific on Google Plus, which becomes prolific on Tumblr and Twitter by default, as one feed morphs into many. If Google releases an API that allowed me, as once I was able to do, to post directly here and thence outwardly I would be so much happier. But here it is.
And perhaps I do so much writing at work, that at the end of any day I may have posted some comments on links found on G+, written in my Journal (DayOne has proven to be a godsend cross platform app), and spoken to so many people that my meandering has no need for a further outlet – indeed, I am unable to consider it. And yet I have many thoughts and ideas that are deeper than the brief comment, the 144 character remark, the noting briefly of the day’s events. This is what the blog exists for.
I guess I am always tired, too – the spirit is willing but the flesh is struggling day to day. And there has been much to process emotionally lately. So I have decided that it may be about time, (yes, the title of the blog is actually a pun that is also deliberately targeting these things), time to address such big things.
Where to start? Perhaps the King of Hearts has a point about starting at the beginning, and going on until you mean to stop, and then stopping. But beginnings are not always clear cut. For this concerns my disability, and happy anniversary indeed to you, car accident, 8 years ago. 8 years ago March 11 my spine started to morph into Evil Back, my bitterest of enemies and strongest of teachers. But I do not need to start quite that far back.
So, my birthday. 46 and aging rapidly – for being female and wishing to still feel young in body as in mind, 46 is an odd transition. I have these beautiful young women, my daughters, to reflect how hopeless that aspiration is. And I resent that not. I do resent the mirror, however. And the weight that wants to lurk in formerly untroubled places – oh belly! Oh hips! How ample thou art! And exercise, of course, basically impossible, beyond merely keeping what works working. So diet it is, but diets for someone who has struggled with eating disorders in the past is a bit fraught. And medication plays a trump wildcard on there. Oh blast and bother, can the scales not sympathetically just LIE occasionally? No??
That’s two pieces. Disability behind both of them to more or lesser extents, merely being flavoring in the background, or adding a more solid foundation for the feelings of sadness and inadequacy. Though I think those labels are a tad simplistic, and it is more complex than that. I like being more mature as a person, and love where my life is at creatively and professionally, as a mother and as a friend and partner. Disability is so intrinsic to who I am now that is it is there in everything, no matter how hard one tries to avoid it. Yes, I am more than my disability, yet I am unmistakably disabled, shaped and strengthened and limited by it. Sometimes I find myself dreaming of past events, or even remembering the past – and in my dreams I am still disabled, in my memories I find myself slightly shocked that once I walked and ran and rode and was without this pain, this constant insistent companion.
So other things, other things I have inferred. Well, meet my new companion, the as yet unnamed vehicle: – an electric wheelchair. It tilts, allowing me to adjust my position during the day to an almost full recline, so I can hopefully do more. I can catch buses again, and hurtle round, and generally do things more independently than even the scooter allowed for. All with less of an impact or issue, as it fits in more places, and has a tighter turning circle. It has memory foam cushioning, which is incredibly useful when one sits so much. It has changed and liberated my life.
So why do I feel so oddly guilty for using it? Like I am not quite disabled enough? A normal wheelchair is damned hard work, and I work on the side of a hill, and pushing it aggravates Evil Back something fierce, as he is a spiteful sod. Sure, I am sitting in bed for the second day after pushing myself too hard, now even getting to the toilet is a long and painful process while Evil Back decides to be ascendant until rested into a more placated mood. But I CAN walk after all.
Ok, it’s jolly painful on even a good day, and as the day wears on, the letterbox is a world away and too far to manage even with the walking stick and all the time in that unlikely world. I mean, in that world I can lie down for a day after even the mildest walk to this letterbox – or on the very very best times, to the corner and back, but always with the stick, and a long long time to slowly accomplish it. But that’s not much to live a life with, a small world boundary, you see, and the chair is designed to prevent Evil Back from getting so cranky, malign, and vengeful. It’s allowing me to do so much with fewer consequences.
And yet I have had odd looks and snarky comments from people about it, I find myself having to defend this liberation machine, as if one must pass some sort of strict approval process to be worthy of being deemed disabled enough. Oh well. I must learn to move on from that.
And there’s the last bit to process. It’s MRI time again. Claustrophobics like me will all be shuddering at the idea. And why is it time, well, evaluation and keeping an eye on what the cranky old EB is up to is useful obviously. But also because there is fear my spine is collapsing more on its damaged side. That one day I will move and then not be able to move again, that what mobility I have will be gone. Sometimes I think that is a consummation greatly to be desired, as that could mean no pain. And yet even more issues arise with paraplegia. The body, as I have found, dislikes inactivity, and is designed to move by evolution, and sitting constantly has some very nasty issues that I do faithful physio exercises to try and relieve.
But no pain. Is that a price I am willing to pay? My family would be overjoyed to see me out of pain, and losing the medications would be an additional celebration here. But then, how badly damaged would I be, how much care needed, how restricted would I be, how much more of my precious hard fought for independence would i lose?
So life gets big. I guess it always does. But to lose more of myself, to diminish further would be to lose independence, I have realised, not movement. It is th e unknown that weighs on me, the fear of becoming a burden to those I love, of being even less than I am now. That becalmed increasingly intolerable as a thought, so I try to just revel on what freedoms, what movement, what mobility I have, with or without devices. Of course, I must find a suitable name for my chariot of freedom, to truly celebrate what it gives me first.