I Might Be Rare, but I Am Not Alone

My teacher and my best friend’s mom talked amid the gaggle of parents picking up their kids from middle school. I was within hearing distance as they spoke, but neither one noticed.

I remember my teacher remarking that the woman’s son and I used to do everything together. We would work together on group projects, talk about our weekend adventures, and sit next to each other at lunch. But now, she said, it seemed that we were drifting apart.

I held my breath, embarrassed. It wasn’t news to me. I was aware, and saddened, that my best friend and I seemed not to be as close. Even then, I knew that adolescent friendships tend to fade away with time. But this friendship didn’t feel like it was drifting away naturally. It felt like it was my fault.

Remembering it now, I’m impressed by how my teacher handled that hard conversation. She didn’t blame anyone, just sadly noted it.

My friend’s mom said to my teacher, “It’s like Matt hasn’t kept up with the rest of his class. It’s like they are leaving him behind.”

Those words stung, probably because they were true. It wasn’t a lack of maturity on my part — I didn’t do as much socializing as most kids because I couldn’t keep up with them. I preferred being alone to socializing with a large number of friends my age, and that didn’t seem right.

I was 13. Two years earlier, I’d received my diagnosis of the rare disease Friedreich’s ataxia (FA). Its symptoms were slowly becoming stronger. My friends were becoming more confident and my abilities were declining. That terrified me.

While my friends naively took risks and discovered who they would like to be, I was questioning my capabilities and distrusting my body.

After the teacher and my friend’s mom walked away, I felt more alone than ever. I wanted nothing more than to go home, shut the door to my room, and play my Sega Genesis. It was my form of escapism. And that’s what I did.

***

Rare Disease Day is quickly approaching. There’s something poetic about it being on Feb. 29, the rarest date of the year. It’s not a day to celebrate rare diseases but to raise awareness about them. The National Institutes of Health says there are 25 to 30 million people in the U.S. living with one of the estimated 7,000 rare diseases.

Maybe that little boy who played Sega in his room wasn’t as alone as he thought.

Because FA is rare, it can feel isolating. We may use mobility aids, require breaks multiple times a day, have hearing or vision issues, require frequent hospitalizations, or suffer from weakened immune systems. Surrounded by people who don’t face those limitations, we tend to blame ourselves.

But we shouldn’t.

If I could send a message to that lonely boy playing video games in his bedroom, it would be this:

It’s not your fault.

When battling a rare disease, sometimes we need to travel at our own pace.

That doesn’t mean we are left behind.

***

Memories are funny. My memory isn’t especially good. My friends will tell you that I sometimes ask them if they’ve seen a movie that we have watched together. But some memories stick out. They seem to be essential parts of our story.

Do me a favor, reader. On Rare Disease Day — or any day — send a message to someone in your life who is battling a rare disease. Let them know that you see them. That you have their back.

That rare doesn’t mean alone.

I wish I could send a message to that kid battling FA and feeling like his friends are moving past him.

Maybe I just did.

***

Friedreich’s Ataxia News 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.