How My Dad’s Disease Changed Me

Lately I’ve had the urge to open up about something I’ve never explored fully in writing before. My dad has Primary Progressive Multiple Sclerosis. For those of you who didn’t watch the TV show House, MS is “a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue.” I’m much too lazy to write up my own definition, and to be honest I don’t enjoy reading up on MS. There’s a lot of scary shit out out there on the Internet and I simply don’t have the emotional capacity to read it all. Unsurprisingly, I’ve found that there isn’t any definition of MS (or any disease, I’d wager) that can properly express what it is. Chronic illness is so complex and powerful. It will inevitably shape you, make you suffer, and enlighten you in ways that you may have never thought possible.

My very first memory sheds some light on this. I was around four or five years old, and my parents had just picked me up from Sunday School. I can recall walking out of the building vividly. I was on the right, a small figure next to my mom and dad. Someone held my hand. Maybe both of them did, but I can’t exactly remember. My mom spoke with intention, and I somehow knew that what she was telling me was important, even critical, to my life. “Your dad has MS,” she explained. She tried to relay to me what it all meant, what I could expect. How she did this for a five-year-old, I don’t know. That moment has left an imprint upon me for my entire life. In my mind, there is no memory before it. Only after.

I can barely remember my dad ever walking.

That’s a fact, but it doesn’t make the sentence any less scary. I remember one particular experience with my dad and sister when I was around seven. We were at the beach, and decided to explore an overgrown path full of ripe blackberries that wound down to a nearby river. I remember the blue jeans he wore, undeniably Levi’s, and the way the denim moved across his legs as he placed one foot in front of the other. Even as a little girl, I possessed the quiet knowledge that these moments were important. My dad wanted us to see him walk while he could.

As I grew up, I witnessed my dad’s health deteriorate. It happened at once slowly and suddenly. In the early days, he began using a cane to help support himself. A cane was no big deal to us kids. He had quite a few, though I don’t believe he liked using any of them. His disease was just beginning to snake its way into the rest of his life; taking up space that he hadn’t accounted for. Then one day, after participating in a medical study for a new MS drug, he stepped out of the car and crashed down on the concrete floor of our garage. I must have been up in my room doing homework, because I didn’t hear a thing. It wasn’t until later on that I began to absorb the gravity of what had happened. He had shattered his hip. When the ambulance came, the paramedics loaded him onto a stretcher—my dad—on a stretcher—and sped away into the dusk. As the saying goes, things get worse before they get better.

I spent much of my adolescence brooding about my dad’s disease. I had no idea how to manage his ailing health while maintaining a normal teenage life. In addition to the tumult and angst that defines high school, my dad was struggling to make it across the living room using a walker. We butted heads about everything from politics to my poor manners. I was outspoken and unrelenting in my viewpoints. Defiance is part of my nature, and I wasn’t afraid to let him know it. More than that, I experienced an immense amount of pressure during this time. I fought what felt like day and night to make my parents proud, yet constantly felt as though I was failing to measure up. My dad and I would engage in our habitual arguments, and afterwards I would head up to my room and weep into a pillow until finally, I stopped. I confessed these moments to no one, and quietly, as if a whisper in our house, I suffered.

By college my dad was using a motorized wheelchair. In my eyes, this was a great improvement as he could easily and effortlessly get around. In comparison to the difficult years prior, it seemed that he had grown more tolerant of his MS. By some kind of miracle, he was learning how to thrive because of his disease, and not in spite of it. All my life, people have been deeply inspired by my dad. That includes me. In the darkest moments of our relationship, which was often overshadowed by his disease, I was always struck by his optimism and faith. He was born to overcome this obstacle, and it’s because of his unmistakable grace and resilience that I am able to endure it myself. In the past two years, my dad and I have completely transformed our relationship. In turn, my relationship to his disease has changed as well.

I’m just now beginning to take ownership of the pain his MS caused me and its unavoidable place in my life. I can’t hide from it, so I have to face it head on, with all of my courage and love. Today, I’m beyond thankful for my dad, who has become a close confidante for me. I often call him on a whim to solicit some advice or update him on my career. There is an unspoken depth to the bond between us that makes it very special. He’s currently writing a memoir about his life, which includes a touching chapter about daughters. He recently rewrote his entire piece about our own relationship and sent it to me for feedback. ‘Is this honest?’ he was trying to ask. It was so humanizing and vulnerable. Much of what he wrote neither of us have said out loud to each other—yet. It was through writing that my dad began to reclaim himself amid his hardships. Our once empty and harrowing house became his haven for writing; an undertaking that requires only the most beautiful part of him: his mind. Interestingly, both of us find solace in writing. It’s essential to who we are, and I doubt either of us could survive without doing it. Perhaps it’s through writing that we can build something better of ourselves, come to terms with who we are, and examine how we’ve been broken. It’s not an easy task…but I’m my father’s daughter: I never shy away from a challenge.

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2 thoughts on “How My Dad’s Disease Changed Me

  1. Bre,

    This article, to put it simply, is extremely profound and utterly amazing. How you craft your deeply personal story into a way that any reader can begin to fathom what you experience reinforces my belief that you are a gifted author and were born to have a pen in your hand. It takes an insane amount of courage to write and publish a moving piece like this and its one of the (many) reasons why I have so much admiration for you. I hope people who read this understand the full gravity the situation, but by the way you have so artfully crafted it I highly doubt they will have issues with that. Once again, your illustrative writing (just like your sharp wit, stunning looks and creative mind) have left me awestruck. I love you.

    Chet

    Like

  2. Bre,
    It is very hard for me to put my feelings into words. I will try. What you wrote is so beautiful, so real, so heartfelt. We as a family have walked this path of progressive disease together. We have all persevered and come out stronger. Dad and I know this has been difficult for you kids. But I believe it has molded you into a more compassionate, strong and driven individual. I love you more than I can express, more than I can put into words.
    X, Mom

    Like

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