All my life I knew I was different than all the other kids.  I was always clumsy while they were graceful, they could dance I would fall.  At age 3, I started sleeping with my eyes open, and I have never been able to pucker or whistle.  At age 9, my scapulas started winging, making me look like a bird.  People who didn’t know me questioned it.  At times it made me look sickly because I was so thin as well. 

My story might be different because FSHD was something I always knew I would have and had accepted it at a young age. My father now 62 has FSHD; I’ve seen what this disease has done to his body but not his spirit. He is currently living with only using a cane, even though he falls on a daily basis, his knees no longer lock together and his leg muscles won’t hold his weight. He started SCUBA diving at age 20 to develop his lungs. It works. He rarely gets a cold and is like a fish in water without the disease. My grandfather also had FSHD and was diagnosis at age 16 when he had significant weight loss and muscle wasting. At age 20, he was in a wheel chair. He died at 59 of a heart attack, secondary to pneumonia. Winters are definitely hard on us, we are always cold and stiff and our muscles work slower and stiffer. But the great Northwest is where we want to be and we adapt.

My parents always raised me to do what ever I wanted, not hold back, and follow my dreams. At age 30 I played on a Co Ed baseball team, I was only able to pitch soft pitch and bat. I had a runner. I managed one season. It was a blast. I decided at age 28 to become an Emergency Medical Technician. I figured there was something I could offer even if I couldn't lift a patient. I am still currently an EMT but now my focus is on patient care, teaching, training and record review.

I recently went to Whistler and I really wanted to rappel between Blackcomb and Whistler but I was concerned about the terrain and steps, they told me there were 60 steps, I figured hey I can do that, slow but I could. It turned out to be 460 steps and my friend was awesome knowing how badly I wanted this they helped me the whole way and what a blast we had. Don’t hold back follow your dreams!! Do what you can while you can, life is too short!

I’m now 40 and over the years I can say that this disease doesn’t take things gradually, you just wake up one day to find out you no longer can climb stairs even with a cane, that it’s difficult to even get off the toilet. In 1992 I woke up unable to raise my arms, no washing my hair, shaving my arms etc. I decided to have my scapula’s fussed together by the late Dr. Doug Harryman at University of Washington. He was able to give me a new life, my son was 5 at the time and the thought of not hugging or holding him broke my heart. I have been hospitalized 4 times for pneumonia due to not being able to cough. I realize that it is a matter of time before I’m in a wheel chair but I have accepted it and I’m having fun living and doing what I want.

I see the years and how much I have lost and yet how much I’ve gained, how much stronger I believe this disease has made me. I am a very hard working, determined person. That’s the one perk I got from the disease. Ask me if I get scared or feel sorry for my self, you bet but I’ve decided that my life is mine and I will make it what I want. The one thing I’m afraid I will miss would be grand kids.

— Colleen Rodrigues, Port Townsend, Washington