Valley Life for All column: Gaining an understanding of what it means to be disabled
Special to The Aspen Times
Editor’s note: The Aspen Times, in conjunction with Valley Life for All, continues a monthly series of profiles about people in our community who have different abilities. Twenty-seven percent of Americans experience some disability. One hundred percent are a part of our community. Each has a story.
Meet Josh: He loves to ski. He is a mountain boy at heart. He lived with the effects of type 1 diabetes that led to severe physical complications and isolation until a double-organ transplant. His journey has been insightful and powerful. He helps others with the hurdles and challenges of life.
Read Josh’s story. His voice will change you:
When I was 3 years old, I was diagnosed with type 1 diabetes, hereditary. But that didn’t prevent me from living a normal childhood, growing up and being active. So, over the course of my life, I dealt with diabetes pretty normally: took shots, I watched what I ate, so on and so forth. But it did catch up to me in that it affected other parts of my body: my vision and also my internal organs.
I started noticing differences in my body. I wasn’t taking off the fluids properly. My kidneys were not working, they were actually failing. I checked myself into the hospital, and the doctor immediately sent me to Denver. From there on, my life changed forever. The doctor said I had to go on dialysis. I wasn’t really prepared for that. I don’t think you really can be. So I was put on peritoneal dialysis, which is dialysis at least 12 hours a day every day until the doctor said I had to get a transplant.
I had a machine by my bed that pumped dextrose into my body, and the dextrose would sit for a while and then I would empty out the dextrose and it would take off all the extra stuff my kidneys normally would. I did that for almost three years. I couldn’t work. I wasn’t very active. I guess I was technically “disabled.” So, with that, it really opened my eyes to a lot of things. My doctor suggested a double organ transplant — a kidney and a pancreas. I was on the transplant waiting list for almost three years, all the while doing dialysis at home.
Finally, on Dec. 25, 2015, I was called into the hospital down in Denver and the nurse said, “Are you ready?” The surgery itself took about six hours. I began my new life afterwards.
But all the while, you know, people would tell you what to mark on sheets because you were not living physically normal. I would mark the sheets disabled, which was foreign to me. I didn’t really know how to respond to that.
Being disabled didn’t really click in my mind until recently when I gained a bigger appreciation of what it meant to be disabled but also be able to do certain things. So that is kind of my story. It has been a long journey, it has been very insightful, very powerful. Here I am today. I’m no longer on dialysis.
I am no longer a type 1 diabetic. And today I do what I can to help others who are disabled get through life and all its hurdles and challenges.
Local nonprofit Valley Life for All is working to build inclusive communities where people of all abilities belong and contribute. We want to hear your voice. Request a training or join the conversation at http://www.valleylifeforall.org or #voicability4all. Help us redefine the perception of challenge.
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