Under the Shoe
But I don't, as sitting around being disabled all day would bore me senseless and result in severe depression very quickly. So you make a life. A life that may not be as busy as other people’s (although it certainly feels like it), a life that may at times not look like much of a life, but you squeeze whatever meaning you can out of the day, in between the Mandatory Rest Periods, the medical appointments and tests, the hours spent on the phone persuading various bureaucracies to give you the help that they are mandated to give. Having a chronic illness or disability is in itself a full-time job. And after that, there are friends and family, work, even if it's volunteer or part time, taking care of your household and the cat and all of a sudden, I realize why I'm so tired all the time.
It's hard to remember to pace yourself when you live with a shoe above your head and so, you try to pack as much into every day, every week as you can, because who knows when you're going to lose two years to sitting still. Unfortunately, doing this virtually guarantees you a ticket on the injury train, but it's hard to remember when you have a list and a life, obligations and responsibilities and the desire to live the part of your life that isn't sucked into the medical field.
There are no guarantees for anyone anywhere - all it takes is a slip off a step, a car accident or the detonation of a timebomb in your heart, but most people don't think of that. Most people pretend that nothing will ever change, because you have to live like that or go mad.
But when you have lived with the certain knowledge most of your life, it's almost impossible to pretend that everything will be fine, that your level of health and ability will remain stable, because you have proof over and over again that this is not the case. And sure, you plan as if everything will remain stable, because if you don't, you end up gibbering in a corner, but still, the activity is fueled by the knowledge deep inside that it could all change tomorrow.
So you push yourself to your limits every day to take advantage of the good spell while it's here, rush through it all, forever fighting the awareness of the shoe dangling above.
Somewhere in your head, you worry that you won't have enough time, engage in a never-ending negotiation with the universe to hold off on dropping that shoe until you've done this, finished that, seen the other thing. And every time your ability drops another level, you rearrange the mental list of what you feel is essential to have accomplished in your life, on some level planning for the time when you can't, so you can look back and be satisfied.
And in writing this, in unearthing the truth that I prefer to be buried, I realized how much time I need to do what I need to do. And I fear that at the current pace of degeneration, there is probably much less time than that before the shoe drops.
But still. You have to live in hope, in applied denial. You have to believe in miracles and I am lucky there, because I've already had one called Enbrel and then I had another named Humira. Amid the fear, there’s a flame of hope and I try my best to look at that light instead of the shoe-shaped shadow on the wall.
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