Not Letting My Hidden Disabilities Break Me

Group with Sam posing for a Photo with the No Barriers FlagI saw it as a death sentence.

The diagnosis was dermatomyositis — an autoimmune disease. I was 23 years old and losing my upper body strength and the ability to swallow solid food. It was a pretty scary time for me as I thought I might not live a full life and that I would have long-term complications.

When I was being diagnosed, I spent a week in ambulatory care at a local hospital. I was run through a barrage of tests, which also included a muscle biopsy, and then started a treatment plan. I was put on a course of corti-steroid drugs (prednisone): I started on 60mg and now I am on a maintenance dose of 5mg. I am also on a host of other drugs for normal age-related diseases.

When I tell people about my life I don’t always bring up my disorder, because it is not readily apparent that I have anything wrong with me. I move around like most “normal” people, not one who has a “hidden disability.” I have had an amazing life. I’ve been married twice, I’ve owned and maintained income property by myself, and I’ve traveled extensively domestically and abroad. I’ve been a skier, an avid bicyclist, a hiker, and do-it-yourselfer.

In spite of my muscle disorder, I became a very positive thinker. I’ve never let things slow me down. I did a stint on a local Planning Board and as a Town Councilman. I was divorced from my first wife 16 years ago, and after that I made up my mind to go to a three-day seminar in Virginia to meet people who had the same disorder I did. I met some people who were in worse shape than me and some who weren’t as bad. When I left there, I was getting emails from people that I had met telling me I was such an inspiration to them.  When I asked them why, they responded that I had this affliction longer than they did and I had the most positive attitude about it. Me, a role model? And an inspiration? Go figure.

What made me go to What’s Your Everest these past two years is my wife, Trish, who is visually impaired. She worked on this fundraising event for No Barriers as a volunteer, and this past year I challenged myself and hiked Lake Emma. I wasn’t ready to do a 14er and instead I hiked with an amazing group including Cara Elizabeth Yar Khan, who has a rare form of MD, and Chad Jukes, who lost a leg in Iraq.

This year I hope to do a 14er for sure. I still need to challenge myself and eliminate the barriers in my life. The human spirit can only be broken if you allow it. When people look at me they don’t see someone with a disability, they see someone like themselves. When I choose to tell them more about myself, they are blown away. I find the biggest challenge was accepting my disorder and moving on; I never let it defeat me.

The only place I can go from here is up. I will continue to tell people my story and continue to be inspired by others.

Learn more about No Barriers events today!