An essay on choosing hope in life with a progressive, degenerative disease
I focus on the miracle of being alive
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I hate muscular dystrophy. In my darker moments, I want to scream into the void of the universe — until I remember that I can’t scream anymore.
In crowded spaces, others often can’t hear me, so I remain quiet. This goes against every fiber of my being; everyone who knows me knows how much I love to converse.
Besides limb-girdle muscular dystrophy slowly stealing my voice, it is also taking my ability to move freely. It has already taken the use of my legs, my torso strength, and my ability to grip anything larger or heavier than a pen or a fork. Those skills are eroding as well.
As the hours and cells tick away, my mind and intelligence remain intact, allowing me to reflect on what is happening to me — and to wonder why. I have long since conditioned myself to ignore the simple fact that I will die with muscular dystrophy, from muscular dystrophy, or both. On some level, my mind refuses to acknowledge these truths, but my heart knows they are likely as the disease progresses.
A challenge to change ourselves
Speaking of my heart, muscular dystrophy, the gift that keeps on taking, is attacking that vital organ as well. For more than 20 years, it has been slowly working against my heart. Cardiologists carefully monitor it several times a year, treating it with medicines and a pacemaker/defibrillator implanted in my chest, ready to send a powerful electrical signal in the event of a sudden, serious cardiac event. I love medical jargon — what kind of sudden cardiac event isn’t serious?
As I sit here typing these words, I realize that someday I won’t be able to type at all. Yet, technology exists that will allow me to write using only my eyes. This is amazing and, on one level, makes me happy. On the other hand, it frightens me to consider how much more my body will be ravaged by the genetic defect inside my muscle cells that is slowly killing them.
I have chosen to share my thoughts, feelings, and stories with you. I’m reminded of Walt Whitman’s line about life: “That the powerful play goes on, and you may contribute a verse.”
So here, I contribute my verse through these columns, along with my other writing, podcasts, lectures to medical students, and anyone who will have me speak. I do this because, even in my darkest thoughts, I know that though I am unique, I am not alone. All of us suffer with, or from, something. The miracle within all of that is called life.
The miracle of being alive runs through Whitman’s poetry and the poems of Robert Frost. It appears throughout literature and becomes timeless in works like Viktor Frankl’s “Man’s Search for Meaning.” This powerful autobiography offers a universal lesson: As long as there is a “why” to live, humans will find a “how.”
The miracle of being alive also shows up in the film “The Shawshank Redemption.” A favorite film of mine, it follows a fictional character imprisoned for a double murder he did not commit. Unable to change his surroundings, he relies on hope to keep the flame of his life alive. At one point, the main character shares a line of thinking that has always resonated with me: “Remember … hope is a good thing, maybe the best of things, and no good thing ever dies.”
I’ll close with my own message of hope, one that will live on in these typed words long after I’m gone. Fictional stories like “Shawshank” are moving, but a deeper impact on my outlook comes from Frankl’s powerful words, written as he survived concentration camps during the Holocaust: “When we are no longer able to change a situation, we are challenged to change ourselves.”
I can’t change my situation of living with muscular dystrophy. So I continue to change and challenge myself.
Hope is a good thing. I will always choose hope.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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