Survival is a Wish Not Granted
by C.W. Bigelow
Solitary confinement within this insensible body. I’ve become a member of a rare community, fewer of 20,000 of us, or so they say – each of us defined by this disease that will take us down, rather than the personalities that preceded contracting it. We are a blend of divergent shapes and colors, all approaching death at a pace dictated by the disease’s unique relationship with our bodies. Survival is a wish not granted. It is another commonality amongst us. It’s been three years of creeping paralysis, creeping up the length of my body from the sole of my right foot like a spider spewing Novocain. The experts know the probable progression of this insidious disease and tell us carefully in low sympathetic tones, while making sure to also explain that each step is uniquely ours because it marches at its own pace toward a common end – death.
What makes this monster even more frustrating is it likes to hide in many different disguises, and the experts at times are not all that expert as they try to rule out one disease after another until they are left with ALS, or amyotrophic lateral sclerosis, or once commonly known as Lou Gehrig’s Disease, which I always found ironic, since the Iron Man of baseball was taken down by it. That’s how powerfully sinister it is.
My specialist gave me a life expectation of 0 to 3 years once I was finally diagnosed, which took a full year of tests. So, for the first section of this life sentence, my family and I studied and searched for any possible cure – which there isn’t – at least not yet. My eyes can see. My brain can still think. My ears can hear. They are now the only things that work.
The irritating sucking of this breathing machine inserted into my nostrils and wrapped above my ears fools my lungs into thinking they are still holding up their end of the bargain, but I know better and will know better until the end because it doesn’t shut down my mind like it has every other muscle of my body. Sentenced to death for no crime. The experts don’t think it is heredity; they aren’t sure if it is environmental, or if it is caused by some trauma. As you can see, I am being kind when I call them experts, but they do try, which is like me trying to become a professional athlete. Effort can only accomplish so much. They say they are making progress in discovering a cure, which will be too late for me, but hell, it is exciting for those still struggling and may end up surviving.
My vulnerability has come full circle – crib to coffin. Diapers to diapers. Fed by others to be fed by others. Stroller to stroller, so to speak.
My friends have come to say their farewells. One by one in varying costumes of good health and on the surface I smile, which is all I am capable of anymore, but underneath, dwelling in this paralyzed, useless body is the urge to slap each of them silly for unconsciously flaunting their vigor. It would be unfathomable for me to react negatively because each one of them thinks I am a heroine for facing my demise so courageously. I guess they might be correct, but they really can’t relate to knowing the future holds a specific demise. Tragedy is difficult to understand when one has not experienced it and I understand these friends are just trying to be supportive, trying to be nice – certainly not trying to be irritating, but spoiler alert, they are. Please forgive me my frustration.
My husband has been dear in his attempts to be a capable caregiver. When I still could speak, I had to bite my tongue over how he cooked and cleaned because he couldn’t meet my standards. This was my fault, because I never trained him because I had my certain ways of doing things and never in a lifetime expected he would have to do such chores. Besides, he was supposed to die before me with his family’s history of high cholesterol and early demise. Of course, when I became impatient and criticized, he sulked because I had hurt his feelings, which again is my fault because I suppose I babied him because of his own physical situation. I have a hard time recalling worrying so much about his health. In fact, I can’t. Empathy is an emotion that disappears quickly. Maybe they should add that to the list of symptoms.
When I wake to a bright sunrise, serenaded by birds, I forget, though for no more than a paralyzed microsecond, before remembering my truth.
Because of the stress of my disease, hubby is struggling with his own issues – no diagnosis as yet, but an overwhelming fatigue, low red blood count, loss of weight – yet he waits on me like a servant, not always the best, as I mentioned before, but the best he can do, as we act out our wedding vows’ “or worse.” The “better” slipped out the back door when the disease took over like an evil dictator.
He feeds me through the PEG tube inserted in the left side of my abdomen because I can’t swallow anymore. Swallowing is like breathing and I’m mechanically bypassing both. He changes my diaper, which he didn’t even do for our kids, and decides whether to leave me in bed or struggle to lift my dead weight into my outrageously expensive wheelchair (my adult stroller) equipped with all the bells and whistles so he can maneuver me out to the living room and we can watch my favorite shows on television. My chariot must be plugged in to be able to run efficiently and can be controlled by his light touch because my fingers, like the rest of my body, have turned to stone. One of my greatest fears is a loss of power in the house which will steal my breath away.
And this morning I had an epiphany as I laid in bed listening to birds outside my window. For weeks, I have been arguing with a constant whisper from my brain, lifting and dropping on a teeter totter. I’m in an internal argument of whether I should let the ALS kill me over time, because outside of this illness I’m healthy as a horse and could last for years, or let the angels of hospice reduce the pump’s squeeze that powers the flow of oxygen through my lungs into my veins while they increase a morphine drip and let me slip away – no longer a burden. Maybe after some time I will be remembered as the pistol I was in health instead of the long list of to-dos I’ve become for my loving family and loyal caregivers.
I have become the disease and therefore turned ugly. My thoughts are dark and hateful. My existence is good for no one, not me, not my family or friends.
When I want to spell something out on the frustrating storyboard, I am to blink three times. As he enters my room with a forced smile and melodic “Good Morning” I catch his attention and blink three times. An expression of curiosity crawls over his face as he grabs the board and holds it close to my face. I aim my gaze and blink as he stumbles over a few wrong letters until he says “Let” and I blink twice for yes which causes raised eyebrows and I continue to build the final message, “… me go, my love.” When the request is finally spelled out, his face crumples and tears flow from his wrinkled eyes. He becomes the man I so loved when we were young. It is almost as if his wrinkles disappear and I once again am in awe of the man. It’s as if my decision has broken the chains of the disease.
While watching him go through his routine of preparing the chariot I am struck by the inanity of life, all the emotions that lead up to what we all must face in one form or another. Where do they all end up? Who will remember me in a year? Does it even matter?
The reactions from family and friends are a mixture of shock and sadness. Certainly, I hear – “what a ballsy decision” or “I don’t think I could pick a specific day to die.” Of course not, because your death won’t help so many others. But that’s where I am.
And on my final day, my immediate family gathers around my bed, each one trying to be brave for me just as they have throughout this whole trip through hell. I memorize each of their faces, for what I’m not sure, and suddenly wish I had the grandchildren there, but what kind of last memory would that be for them?
Dressed in my favorite pajamas I have my husband take my picture. Is that maudlin? How many times in my life has my picture been taken? I can no longer smile but I find myself trying to twinkle at the lens.
My anxiety climbs the ladder as I hope I am doing the right thing. Certainly, I am releasing them from the cage so they can continue with their lives. “It is what it is.” It’s a good last thought.
The morphine drip has increased, and the sucking sound is finally gone. Tranquility engulfs me as my husband, father of our children, friend, caretaker, and lover of long ago, climbs into my bed and wraps his arms around me for the last time. “I love you,” he says. I hear his last kiss on my cheek and imagine the press of his body as a lone tear escapes my eye and rolls onto his lips.
C.W. Bigelow lives in the Charlotte, NC area. His short stories and poems have appeared in Crack the Spine, Sick Lit Magazine, Midway Journal, Poydras Review, The Blue Mountain Review, Glassworks, Blood & Bourbon, The Courtship of Winds, Backchannels, Poetry Super Highway, Drunk Monkeys and forthcoming in Good Works Review.