The computer “brain box” of my motorized chair had been failing for some time, I just hadn’t realized it. As one part or another began to have problems in succession, I would just fix it or replace it, hoping that would be the cure. Even though the fix would help remedy a portion of my locomotion woes, deep down I knew it didn’t solve all of my issues. So I pretended it would fix itself or that I was over exaggerating. I didn’t look further than what was in front of me, because I was tired of finding problems in my life that needed to be fixed.
It had begun it’s descent about a year or so ago. My chair would lose speed at random moments; moving along fine only to inch by in a crawl a few seconds later. Most times it was okay though, for getting around the house or going to my usual places to shop. I convinced myself that this new slower speed of moving was ok. The chair worked, it got me where I was going. What else was there to worry about?
Then one fateful afternoon, a careless bus driver incorrectly fastened a tie-down to my motor and wrecked it. My chair limped enough to get me home, only to give up on life once I got through the door. I thanked G-d and all the saints watching over me and began my never seeming to end year of slowly replacing the power-train portions of my chair: both motors, the control joystick and lastly, the main “brain box”.
Like every other semi-broken thing in my life, I got used to it kinda working, until I couldn’t anymore. The brain box couldn’t anymore one afternoon (I really should stop leaving my house so late in the afternoons, they seem to be fraught with peril when I do). I found myself, once again on a bus, this time heading to Whole Foods. Once I arrived at my transfer point, I turned my shiny new wheelchair controller on and an big ugly yellow stripe flashed across it, advising me of a fatal error.
After some clamoring by the none-too-helpful bus driver and his two really helpful supervisors, we were able to assess that the motors on the chair could be disengaged and that I would remain on the bus till my neighborhood stop, I would then have my teen-aged nephew meet me there to push me off the bus, then back home.
So yet again, my chair was at least able to let me get home… but I was not looking forward to what the issues were this time, nor how much it would cost to fix them. Looking at all of this now, it seemed like this is the story of my life: I’m going along, fixing and patching as I go through, only for something I could have never expected to happen to make me come to a full stop.
But why does my life have to follow this pattern? Why can’t I just parlay into a great situation once I come out of a bad one? It feels like I spend so much time with my nose to the grind stone, that I never take time to poke my head up to re-assess, to take stock and course correct. I have one course (to make it through alive as long as possible) and I never deviate. Like ever. Not to have fun. Not to find love. Not to live.
Look, I’m not looking to kill myself off or anything, It’s just that I don’t have any in-betweens. I either know how to work or how not to do anything at all. Live full on or to barely exist. I’ve been in one of those extreme states at one time or another. I could blame this on a number of things: the death of my Mom in my early twenties (and how I never really recovered from that), it could be from my lack of confidence, my not so awesome social skills. But however you slice it, I’m failing.
I’m failing at living the life I want, at finding the love I need, I’m failing myself and I do it in such slow moving ways that it doesn’t even seem like failing… until I left my head up and wonder where I am and how the hell did I get there. Or better yet – how the hell do I make it out of this crazy space? I hobbled together the repairs of my chair because that’s what my life experience has taught me – take care of what you have because you never know when you’ll get a new one.
That can sometimes be fine for a wheelchair (considering how funding for a new electric wheelchair is ridiculously hard to come by) but when you do that with a life? The results are not good. The results are never good.
And so, at 41, the truth is, I’m failing. For all my successes (for there have been many), for all I’ve overcome (there has been much), for all that I managed to accomplish, the most important thing – making sure I am taking care of my needs, wants and desire? I’ve failed myself. Miserably…
And I don’t know at this point how to make Me better. How to nurture my heart, how to see myself in a better light, how to believe in Me again. How to step out of my own shadows and be free. I think about it often, I make plans and try to execute them. But the main project of Me, seems just outside of my grasp.
And this makes me really, really, really sad. Because how can I be there for so many other people and fail at being there for Me? How do I lift me up and put myself in the right direction?
How do you move forward, when you’re the only one left behind?
-S
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