I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, nice to his family, hard-working, and my best friend.
I met my dream guy in high school, and Kyle and I have been together ever since. He checked every box on my list.
There is no way to know what life will throw your way tomorrow, next month, or years from now. When I was diagnosed with Friedreich’s ataxia (FA) at 23, I was grateful that Kyle became so much more than I could have wished for.
Sharing a life-altering diagnosis like FA with your spouse is not ideal, but some traits can help that person handle the new journey. When making my teenage list, I didn’t think about prioritizing things like being optimistic, patient, sympathetic, and physically capable. Yet these are the things I have grown to appreciate the most about my husband.
Kyle’s endless optimism is key to overcoming the doom and gloom that relentless FA symptom progression brings to my life. He is with me every day, so he has a front-row seat to what FA does to my body, mind, and soul. He helps me overcome my pessimistic ways by bringing me into the light of his optimism. He pulls me out of pity parties — after an appropriate amount of time to grieve in a healthy way — by not only reminding me what is good in my life, but also figuring out ways for me to actively participate in the good.
He is exceedingly patient with me and my disease. He handles my moods with grace and understanding. He is fine going at a slower pace to accommodate my physical abilities (or lack thereof). He understands that being an FA patient means so much more than just “losing my balance.” In fact, he is often more patient with me than I am!
True empathy is rare, yet so important to someone walking this journey. When others try to be sympathetic, it often comes across as pity. But pity is the last thing I need. I need understanding and support.
Yes, Kyle occasionally joins me in my rants about how “FA ruins everything,” but most of the time he just listens, offers advice, and reminds me that he loves me despite it all. That is so much more valuable than a “poor you” attitude.
I knew Kyle was physically strong because he was the captain of the football and baseball teams in high school, he played baseball in college, and he got a job as a personal trainer after college. I appreciated this, but I never expected to be so dependent on his muscles. He helps me walk when I don’t have my walker. He has carried me when I’m too injured or exhausted to function. He is dexterous enough to help me with tasks I can no longer do. He has the energy to pop out of bed and be a playmate for my kids when I can’t summon enough to start my day.
I could write a book about what Kyle means to me. But I also have some advice. If you are an FA patient looking for a significant other, I advise you to find someone optimistic, patient, and sympathetic. I urge you to pick someone that you can be honest and true with, that knows and loves all sides of you — even the grumpy FA patient side.
Find someone who makes you a happier person. And find someone that becomes their best self because of your gifts and personality traits.
Kendall and her husband, Kyle. (Courtesy of Kendall Harvey)
If you find yourself in the position of loving someone with FA, I urge you to ask them what they need from you. FA is a heavy, ever-changing disease. As patients, our needs and wants progress and change with our symptoms. Do regular “heart checks” and have honest conversations to make sure that both of your emotional needs are being met. When in doubt, try to be a little more optimistic, patient, and sympathetic.
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