Ironic, isn’t it, how things work out sometimes? You spend the entire day readjusting your cushion because of excruciating numbness and pain and right before going to bed, the last try makes everything comfortable. I wonder if dignity exists in this death I call my world.
A little over a week ago, my blood pressure dropped to the lowest it had ever been; 54/35… I shouldn’t be alive, to be honest! I find it amusing how every time I think my life is through, I end up opening my eyes the next morning to face another day. You think you have things tough, but then it sinks in, that reality is much harder than originally thought.
I got to sleep at five o’clock during the start of the weekend, all because of the dinner still stuck inside my throat. Some say I should get a feeding tube, but I eat because I love my food. I refuse to let Duchenne muscular dystrophy take away any more of my choices.
Following much water and Jell-O, the piece of meat came up right in between and I was in a dangerous situation. If I choked, it would have been the final nail in my coffin. I swallowed some more and it got stuck again, but persistence saved me, eventually. The harder realization came crashing through the door when I awoke an hour and a half later, desperately needing to pee with all the liquid I ingested. For some reason, I couldn’t call upstairs, despite triggering my sip/puff call bell several times over.
Because of my trach tube configurations, I’m unable to make a sound in bed, at least vocally, so I used my tongue. I conjured the energy and started clicking, oh, maybe a hundred or more times? Did I hear footsteps? Relief, at last! Minutes pass… click, click… footsteps? No, probably just the creaks and cracks of the house. It was hopeless, and sooner than later, after having to moisten my mouth, I salivated too much and couldn’t continue.
“Father,” I begged, “please don’t make me spit on the pillow!”
But I had no choice. I surrendered to a face half covered in saliva with bubbles everywhere. It was agonizing, being in a heap of sweat while holding in my bladder. I screamed at the top of my lungs in sheer frustration, without a voice to be heard. I was alone, trapped within my own decrepit body, a prison, invisible to the rest.
Then I noticed something. Each time I triggered, I saw the reflection of a red light blink on the railing. The receiver upstairs ran out of battery!
“Please God, don’t let me soil the bed with urine so that my parents won’t have to clean the giant mess!”
Okay. One more time. A hundred clicks. Go. No? Try again. Another hundred. Go. Screw it. Go! Yet another hundred…
07:20:02: I finally heard Dad’s footsteps, but didn’t care and kept clicking. They were my victory.
And so my palliative doctor came for a visit this afternoon. I can’t seem to decide whether the procedures for going off life support are worth the trouble or not, considering my recent heart condition. Square one… again? I know now, however, that I’d rather die naturally, if at all possible, which would also give me an advantage. I tire of worrying that the ones at my funeral will be too damned naive to understand the difference between giving up and letting go. If I died of natural causes, it wouldn’t matter.
There really is no dignity. When you start asking yourself if cancer would have been better because it has a time frame, and finding gratitude in the anticipation of your last breath, it makes you realize that you’re too young to be old. With this disease, you inevitably learn to be afraid of nothing because there is always something. I became a god in my own mind and must unlearn all of such fantasies that have kept my sanity intact. I need to harness my fears and divert them back to being afraid of death when so many things remain unfinished.
What goes through my mind when I think of Duchenne muscular dystrophy? I, of course, frequently dream of the moment of taking my first step again. I love the imaginary sensation of having full control of my body, free of tubing and metal. I love being able to run, stopping at will because I choose to.
This is how it goes in my brain: I started running when I was born. I stopped for over thirty years and am waiting to continue my obstacle course. However, this journey of mine lies elsewhere. I missed my Sixpence None the Richer/Kiss Me moment and in a way, I’m still looking for it.
Truth be told, my loneliness does affect me. I get misty-eyed as the lighting above becomes displaced all so suddenly. I close my eyes and surrender to the popcorn ceiling skies, hoping for her lips to softly plunge into our kiss. I’m only able to keep myself relatively sane because I’m still under the moon deep down inside. It’s simply my heart and I need my great romance.
You see I’m no hero. I wish I could be one, for once, for real, in someone’s eyes. I dream of the day when a girl sees me suffer, so that she might admire and fall for me, but who wants a prince that drools? Admittedly, I adore the part when her beautiful heart cries reconstruct into drops of liquid diamond, as your fingertips make love with her face, softly dabbing away the makeup that kissed the silk of her skin. I love when she finally sees you as you reveal the perfection of who she is. I hope
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