I do not wish to offend, but there are days, trapped in my cell, when it is sanctuary and prison alike, when I wonder if it would have been better to have been made paraplegic by this accident, or even gradually become that way, to have by now lost the use of my lower body.
Oh, how perverse. To want to be disabled!!
Well, have I got news for you. I am disabled.
I am disabled and crippled alike. Severe pain restricts me about a third of the time, and increasing. More and more time is spent keeping the pain at a lower level with morphine, with other drugs, with being a wheelchair, with being on my so comfortable setup for long term stay but trapped nonetheless bed.
When I am in a good way, with my wheelchair, I can do so much more with the kids, with my life. Hell, who knows, I amy even sleep. Friends may stop wincing with me as I move, my younger ones may stop fretting about every movement I make, my older ones have less to do caring for me. Life is a constant management, if I do this today, will I be able to do y in two days, or should I do z instead, then a and b tomorrow? What are the kids priorities first so I can decide for their benefit what mobility is needed? Trade, juggle, bargain.
I know, paraplegics can require care too. Yet one can be very independent with paraplegia. I live in a grey world, where no matter how hard I try, my independence is constantly under fire, and my children, my 76 year old, feisty, even more independent father with severe (but treatable!) prostate cancer must, and willingly, care for me. Where I lay on the bed, trying to hide the pain enough to spend a few hours with each of the kids as I can, just watching some videos, doing something, anything,
Being able to focus enough to code without the pain interfering. My work, so precious and necessary to me. My quilting – ahh, well, I am learning to laboriously hand sew items for bad days, and contemplating another hospital table for sewing equipment. (I have one for my monitor and laptop).
Look, my dear people, I am stuck with wheelchair, and very limited mobility at best when I can walk. I do all the right things, morning physio exercises taught to me in an all too brief burst of treatment after the accident, 4 years ago on the 6th*. Tried all the drugs, all the suggestions, poked, prodded, examined, a slab of meat, an insect looked at with less curiosity than a child examines an ants nest. Noticed the increasing quiet desperation of my doctor to find something, anything to help me – even when the pain clinic grimly acknowledged no way out but this path, and that is a limited solution that will expire over time.
I am grateful for the odd gifts this accident has given, teaching me more on living in the absolute moment, on love, on friends, on true loyalty. On laughing as often and as loudly as I can. Of truly not giving a damn about what other people think. Of singing out loud for the fun of it. Of general mayhem and sheer ratbaggery, of the exquisite pleasure of quiet moments, and the real value of joy, of peace, of contentment with what one has, not what one hasn’t.
Except the bad days, when what one has is damned pain. One is a tad over that!
I accept that in my wheelchair, I am not often seen as a woman, as attractive – though at 43, one expects that anyway;) I accept some people are so sadly unthinking or ignorant that they treat me as stupid, feeble, or even somewhat strangely, deaf!
My point, somewhat meandering wise, is this – I am there anyway, in the chair. Why not just have to be there, deal with all the complications and issues of that – at least no pain.
For those who think I am mad to contemplate such a wish – I do not wish you to understand. To truly do so, you would have to be raked, day after day, no end or real hope in sight, by agonising pain. I could wish that on noone.
*Yes, my anniversary of utter life change looms. My marriage ended, I moved house (both those things were so painful but in the end necessary), and gradually I declined, until just before Xmas, my back decided to throw the mother of all tantrums.
No turning back. Hell, no turning – it hurts!
what do you say? Who are “we” to even contemplate judging you and your “wishes”.
All I know is that the person that I worked with for two years and who I would count as a friend is hurting – deeply – and if that is what would help to improve your way of life – then again – we cannot judge.
Take care
Only true friends fail to judge – it certainly has yet to stop anyone else, I have noticed;)
And thank you!!