Facing death: what does it mean? You’re probably thinking a lot of tears and hugging, and you’re right. It is a very emotional dilemma. However, coming to terms with leaving this world is a complicated process – a roller coaster ride that includes no mercy.
Dad likes to compare me to dying old people as a way of comfort, but I’m only thirty-three… much too young to die. There are so many things that remain unfinished, incomplete. I used to want to let go of everything because the days were unbearable. They still are, but I’ve been so accustomed to fighting that survival is second nature, regardless of how high the stakes are.
Control isn’t mine anymore though. It seems my body has developed a mind of its own. I’ve no say and I must relearn to care for myself. I try making sacrifices for my family, but always end up hurting the ones I love with decisions that worked before. You know what rewards have become? Lesser evils. How do I rise from all the darkness when there is no light at the end of the tunnel?
When it comes to making a difference, there includes three fundamental factors: intent, choice, and action. I lack the latter two, so intentions are all that I own. Sometimes, to be selfless, you have to be selfish just the same. You might not get the anticipated results, but taking care of yourself is, in fact, taking care of others. Your family knows you’re doing your best.
Truth be told, while I acknowledge the aforementioned, I’m having an impossible time coming to terms with dying. Yet these tears have nothing to do with weakness. I cry because I’m human.
I often spend the majority of my day doing the bathroom routine. It can take excruciatingly long, while on occasion, I’m not up and about in my wheelchair until four o’clock in the afternoon. I started on some new painkillers that were supposed to be free of constipation, but it resulted in going more than half a dozen times because of pushing difficulties.
They worked, and I finally had some sleep after nearly a year because I could breathe through the full-body numbness, but what do I chose? Air, or having my entire day and night ruined, and for everyone else? Do I hang in the ceiling lift to take a dump while my rib cage is being crushed, legs lose feeling, and knees become sore, or spend those two damn hours on the commode chair risking severely low blood pressure and the agony of sitting directly onto my pressure sores? When the numbness comes, do I be selfish and call my parents at three o’clock in the morning, or spend until sunrise, gasping to catch my breath?
It scares me that I’m forced to be grateful for oxygen, when I have to turn up the ventilator volume so high that it maxes out, because then, I wouldn’t have another setting. I choose the better torture, whatever the hell that even means. I don’t want to deal with this anymore, but it worries me when Dad says not to give up. I’m afraid he’ll tell that to the funeral audience and everybody will look down on my tenacity. Did I not fight hard enough?
As my temperature fluctuates from extreme highs to dangerous lows, and my heart stabs like a knife, twisting, this existence of mine continues being up in the air. I look healthy on the outside while the rest of me is on a rapid decline. Good days are tough to come by, but they happen. I don’t know when I’ll be chasing angels in heaven.
In the meanwhile, I’m grateful that I have a mother and father who love me unconditionally, whether I believe myself to be a burden or not. Life is getting to be an enormous struggle, but creating light for myself is possible. I’m here to declare that I am strong enough, no matter where Duchenne muscular dystrophy might take me.