Merry Christmas Jonas — And Me Too!
My contact information is posted on the FSHD Canada Foundation website — so I get a lot of emails. Most are from Canadians — but not all. Just before Christmas I got an email from Jonas in the Philippines.
Jonas has FSHD. He’s about my age — but in much worse shape. He can’t walk and relies on his scooter to get around. Two years ago a typhoon hit Jonas’ island. Jonas and his family survived but the scooter was badly damaged.
Fixing the scooter costs around $230. He can’t afford it. He doesn’t have any income. So, he’s been stuck at home with a broken scooter the past couple of years.
Jonas asked if the Foundation could help him out. I had to say no. The Foundation is only set up to help Canadians.
But, I really felt sorry for the guy. I have FSHD too — but I consider myself to be much more fortunate than Jonas. So, I decided to help him out myself. Besides, it was Christmas!
I transferred the money to Jonas and he got his scooter fixed. He then sent me the following video. I have to say — it is one of the nicest Christmas presents I’ve ever received!
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…