When I was 21, four years after my diagnosis, I worried FA had been a major reason I was perpetually single. Who would want to be with someone who would eventually use a wheelchair and/or die by their mid-20s? I didn’t randomly tell people, “I have a disease that will make walking tough and might kill me at 25.” But it would eventually come out. (By the way, I’m 48 now—that prediction obviously didn’t happen.)
I had crushes galore, but few came to fruition. The less than a handful that did, didn’t last more than two months. I think I wanted the fairytale romance too much and let my insecurities control me. Maybe I feared the guys would leave and I subconsciously self-sabotaged the relationship. Or maybe I was just a bitch.
It didn’t help that the majority of my friends were male. In addition, as FA progressed, those friends often became my crutch. When I didn’t use my rolling walker, I’d latch on to them as if we were going down the aisle. They “cramped my style.”
I graduated from college, still single, still questioning my attractiveness.
Four years after graduating, I ran into a blond I had a serious crush on in college—but we had never spoken—not once. I didn’t even think he knew I was alive. We were at a crowded bar. He came up to me and put his hands on my shoulders. My body shuddered as he looked me in the eye. “I have always thought you were beautiful,” he said and walked away.
Adrenaline rushed in me for a second. I couldn’t believe it. He saw me using a walker and still thought I was pretty? Ok, but if he found out about the death stuff, no way would he be interested. Right?
His admission may not have answered all my questions, but it definitely boosted my confidence. I started to believe it was possible for me to let go of some insecurities. A year later, I started to use a wheelchair, and friendships with other wheelchair users followed. I saw the confidence with which they navigated their relationships without limits. Could I do the same?
Flash forward, twenty-one years…I haven’t been single for 11 years. My early death is no longer on my mind. I’ve used a wheelchair for twenty-two years. I know I am worthy and loveable. My boyfriend knows all about my FA and my MS diagnosis several years ago. He’s not afraid to love me and I’m not afraid to let him.
Until the next…
Your article is great! Your story is eerily similar to mine! I love reading your stories!
Thank you!
Jen, beautifully stated! ❤
I relate to so much of this. I remember when I told Max about my FSH. He picked me up in his dad’s truck and it was too high for me to get in without help, so I asked for help and told him I’d explain on the way. I also remember when that awesome bf of yours first asked you out 🙂
Meeting you at UCSD helped with my transition to using a powerchair <3 I was terrified but finally realized how much it would improve my mobility and saw it as a tool rather than a limitation.