Somebody recently asked me "what it's like to live with FSHD?". I gave them the best answer I could: "Physically, it's like gravity is being turned up on you. Everything you do from year to year is more difficult – walking, stairs, reaching above you, getting out of a pool...it feels like you're being pinned to the earth".
That is just the physical component. I went on to describe that, psychologically, I feel like I'm living ‘relatively normally’ at this stage - under somewhat sunny skies - but off in the horizon there's a huge storm cloud that keeps coming closer and closer, and some day living with my disabilities will likely feel like trying to live through a storm...no day to day act could be taken for granted.
My dad has FSHD as well, and is 25 years older than me. I watch him struggle through the day in a wheelchair, using up so much energy on items everybody else would take for granted – getting dressed, eating, getting around...I'm proud of him for constant battling and never complaining, but at the same time I don’t know if I have that kind of strength....it seems so daunting to even consider. People with FSHD are brave souls, that much I can assure anybody.
For now though, I just try to do as much every single day as I can. I've already packed a lifetime in my 4 decades, so I figure the rest is a bonus! And as much as we all try to stay positive, and as much as I don't have to look far around me to see the other blessings in my life, it's hard not to always wonder "IF" — IF I'll be able to play catch with my son in 5 years, IF I'll be able to pull myself onto a boat next summer, IF I'll have a hard time driving when I'm older, IF I can ski this winter...it's a slowly progressing disease, but it's a very traumatizing, suffocating disease at the same time. And a day doesn't go by where I don't pray for a cure...