Like Father, Like Daughter
As a child, I can remember a few distinguishing things about my dad. He always had a mustache, he always wore a gold chain necklace, and he watched my favorite childhood movie with me a million times from his brown corduroy lounge chair. My dad worked hard for our family and showed his love for us every day. I always tell people I have never gone a single day in my life without knowing how much my dad loves me, even on the days I know he struggled.
My first memory of my dad’s illness was during our yearly apple picking trip. I remember him falling in the orchard several times and struggling to keep up with us on the unseasonably warm fall day. I didn’t think much of it at the time; however, looking back, I understand how significant that day must have been for him. It was the first time his children saw him struggle physically.
My dad always portrayed himself as a strong and confident guy, but this day stands out as one that began to take that confidence from him. My dad’s condition worsened until he finally received an MS diagnosis in his mid-40s. The diagnosis was devastating, but there were also so many unknowns regarding MS at the time that we didn’t know how scared to be or what his future looked like.
After my parents’ divorce, my father moved back into his parents’ home out of necessity due to his worsening condition. Because I saw him less than when we lived in one home, I didn’t see his daily struggles, and he tried to keep it that way until the falls became a recurring thing and he eventually started using a cane. When we would see people he knew in public, he would quickly explain away his use of the cane by saying “I have a bad back.” We both knew it wasn’t true, but I think it somehow made him feel better to keep his illness a secret from the world.
He soon moved from using a cane to a walker, which became harder to deny. He tried every treatment possible that made any promise of functional improvement. Injections for spasticity, supplements he purchased from late night television, acupuncture and traditional medicine. As I got older, I became increasingly aware of his depression. He would often say “I feel like half of a man” and seemed that the only hope he held on to was the hope that he could not pass MS to me and my sister. At the time, our whole family clung to that belief – until I turned 20 and my vision became blurry.
I didn’t have the same symptoms as my dad, so in my mind, MS was not the cause of my vision change. But after laboring through medical appointments and tests and discussions about my father’s MS diagnosis, I received the diagnosis. At 20 years old, I was told I have multiple sclerosis.
When I told my father the news, I saw his sadness. His guilt. His pain. He was devasted at the thought of his youngest child losing cognitive or physical function as he had. The diagnosis changed me, too. I always looked at my father’s diagnosis as inconsequential. I saw his ailments as part of who he was and nothing more. But now, the memories I had of his disease progression became my fears for my own future. It became harder to look at him without comparing his life to my own.
Me and my dad.
I have made sure to learn from him and create my own peace with my diagnosis. Rather than live in denial of my illness, I chose to seek the best physicians I could find, learn as much as possible about MS, become an advocate for myself and others living with MS, to be open about my diagnosis to bring awareness to others, and to create a culture of understanding around chronic illness.
When people see me and my father, it paints an opposing picture of MS. My father is unable to get out of bed and has physical limitations and struggles mentally after years of MS progression, whereas I embody a more misunderstood tenant of “invisible illness.” I have days when I feel crippled by fatigue or feel like I have lost sensation, but those are symptoms that others can’t see. Sometimes when I struggle to keep up with the energy of my three small children, I think about how my best memories as a child include always knowing how fiercely my father loves me. It reminds me that I am the perfect parent for my children despite any limitations, just as my father has always been for me. I am strong because this is the person he has inspired me to be. Despite all that he has lost, he will be the first to list all the things he is grateful to have in his life.
He worked until the very last day his body and mind would allow, he brings joy and laughter to every person he meets, and most importantly, he has never lived a day without making sure the people he loves know how important they are to him. I am grateful for him. Grateful for his tenacity, his strength, and his unwavering love.