We all have our fears.

We all have our fears in life; whether it’s a fear of sharks, a fear we’ll never find love or even a fear of the future. I’ve had all those fears and two of them I still fear. I’m still afraid of sharks (I mean they’re scary, am I right?) and I’m scared of the future. With a disability like FSHD, my future all depends on my muscles, my workouts and science. It’s hard not to be scared when I’m told that as I age, my muscles are only going to get weaker. Now you may be thinking, “well everyone’s muscles get weaker as they get older,” but it’s different for people with FSHD. Some of our muscles almost, if not completely disappear.

As of right now, my grandpa is 85 and he is using a walker, but he’s still on his feet. My mother can walk but the stairs are very hard for her and I can tell that over the past few years it’s gotten much worse. I feel as though as these few generations grow on, the disability is getting worse. My grandpa didn’t realize he had the disability until he was older than I am now and my mom didn’t realize until high school. My symptoms were noticeable in 6th grade.

I guess I’m just scared that my life is going to be different than both of theirs. Many nights, I lay in bed just thinking about what my future is going to be like, and tears start rolling down my cheek. I’m scared that I’m going to be in a wheelchair by the time I’m 40. I’m scared that I won’t even be able to hold my own child. I’m scared that my children will love their father more because I won’t be able to do as much with them. I’m scared I’m going to hold my future husband back from doing things he’s always wanted to do, like travel the world. I don’t want to be scared of these things, but it’s hard not to think about. We all have fears and I know I have to face them someday, but I’m not sure if I’m ready for that yet.

I just wish that there was someone in the same position as me that I could talk to. I know there is someone, but I have yet to meet them. I hope that we can someday find a better treatment or cure to FSHD. I try to be hopeful, but it’s hard when I’m scared to death of the future.

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5 thoughts on “We all have our fears.

  1. Lexie, Hang in there in time I think you will find that support your looking for. In the mean time I’m here for you anytime you might need to talk.
    xoxo robo

  2. Hi Lexi, I’m 22, from New Zealand and in the US on an internship. Right before I left NZ I found out I had FSHD – 2 days before I got on the plane. It’s not bad, yet – my right arm is a little difficult to use and my hamstring hurts ominously. I would really like someone to talk to about it – let me know if you want to talk.

  3. Hi Lexi, I’m 22 and just found out I have FSHD. I’m from New Zealand, but interning in Washington DC at the moment. I’d really like someone to talk to about it – my mum is the only other person I know who has it. Let me know if you’d like to talk – Erika

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