Sometimes when I am feeling down I try and imagine how my life would be without FSH. Honestly I never get very far, because I can't. Having FSH has shaped my experiences and ultimately made me who I am today. Given the chance to go back in time I truly would not change a single thing. The path I have set out on has allowed me to come across the most incredible people and experiences. I have grown more than I ever thought possible and am always eager for an opportunity to grow and learn even more. The down and out feeling never lasts long.
Not only does this realization turn an inkling of a negative feeling around, it also serves as a reminder to live each day to it's fullest. A flashing green light with bells and sirens screaming at you to grasp every opportunity that comes your way. To challenge yourself physically, mentally, and emotionally and to "live" YOUR life. Having FSH has given me much more than it has taken away. It's a bold statement, I know. I didn't come to this belief easily either. Sure it has robbed me of valuable muscle mass that aids me in having an active lifestyle. But it doesn't rob me of any cognitive functioning, and instead has given me a huge gift in return. A unique insight on living. Life it to short to waste my muscle slaving away at a nine to five. I would much rather be wasting my muscle doing things that I want to do and experience life. No regrets.
A few months ago I was lucky to meet someone who shares the same views, and was again reminded of the wonderful path FSH has set me on. Not saying that I am still not hoping for a cure yesterday, but at the same time thankful that I am living and not just going through the motions.
With that being said I couldn't be more ecstatic about the $6.3 million dollar grant just awarded for FSH research. http://blog.fshfriends.org/
On a day to day basis I am always working to bring awareness to our form of muscular dystrophy. It is something that is very important to me and something that I hope to do more of in the future. Next week I am hoping to get the opportunity to do so and to give a larger voice to this "invisible" disease.
And on a final note, I was having breakfast yesterday morning with that wonderfully amazing person that came into my life a few months ago and realized that it was time to break new ground in a totally different area. I love my bicycle and will always be obsessed with it, but maybe adventure racing......? We will see what the future holds, but I'll only get there by living up today.
1 comment:
So glad to see you have a great attitude. I also have FSHD. I am 57. And I have always been very active. I lift weights do yoga and stretching. You remind me of myself at your age. I was not diagnosed until 10 years ago. Even though is showed at age 17. I am doing great most people can't tell I have a problem. I think it is because of the excerise I do. The way I eat. Just don't over do it.
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