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Why Learning to Ask For Help Has Changed My Life With Disability

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I think most people who know me would say that I am an optimist. I try to find the good in most things and most people. At an early age, my mother taught my siblings and me to give everyone the benefit of the doubt. So when I was diagnosed with Pompe disease in July 2015, I immediately began looking for the silver lining. I won’t lie, I struggled for a while with this new information, and had what seemed like a million questions. I was overwhelmed and as a result, I began to feel depressed and experience anxiety. Every day I became more aware of my own mortality, which in the two and a half years since my diagnosis, has made me appreciate this life more than I ever have. In the last year and a half, I have had some really memorable experiences that I would not have had if not for my disability.

In the last year I have been able to check a few things off my bucket list, and New Years’ Eve 2017 in Sydney, Australia was in the top three. I have been living in Australia with my family for the last year and a half, and we only have about seven months left before we move back to the U.S., so it was now or never. I began planning our trip to Sydney for New Years’ Eve in September, and at first I wasn’t sure I would be able to make it. Pompe disease has caused muscle wasting in my legs, I often have pain in my legs and back which makes walking and sitting for long periods difficult and painful. I also don’t do well in the heat and humidity. When it’s really hot and humid, I feel like I am lying on my back with a weight on my chest and I get dehydrated easily. The thought of sitting in the Sydney summer heat from 8:00 am until midnight was not appealing to me, but I was determined to make this trip happen. I began reading about the viewing areas around Sydney Harbor and trying to find the best location for us to view the fireworks. I found that many of the viewing areas around the harbor had areas designated as disability accessible with amenities for disabled persons. There was a golf cart that transported us to and from the viewing area, and best of all, it was a ticketed location so we didn’t have to sit outside for 12 plus hours.

On New Years’ Eve my family and I headed to the Cahill Expressway to watch the fireworks, where we had an amazing view of the Sydney Opera House and the Sydney Harbor Bridge.  We arrived at the expressway at 9:45 p.m. and the fireworks were at midnight. A DJ played music, and there was food and drinks, as well as activities for the kids while we waited. The weather was beautiful. We were able to bring our camp chairs, so the two hours that we waited for the fireworks to start was fun and enjoyable. Without this disability accessible viewing area, my family and I would not have been able to spend New Years’ Eve in Sydney, and without my disability, we would not have been able to get tickets for the disability viewing area.

I remember in the summer of 2016, when my best friend took me to Awesome Con in Washington, D.C. I am a huge comic book fan, I love Captain Marvel, and we both enjoy Jay and Silent Bob. It just so happened that Kevin Smith, the creator of Jay and Silent Bob was speaking at Awesome Con, and my friend bought us tickets. When we went to line up for the show, the line was extremely long and wrapped around the building. We had been walking all day and I was in a lot of pain, so while I sat to rest, she went to ask if there was a place where we could wait until people were allowed to enter the theater. We were directed to a disability accessible waiting area and were allowed to enter the theater before the rest of the crowd. As a result, we were able to get front row seats to see Kevin Smith.

Oftentimes people look at me and don’t see a person with a disability, even when I wear my leg braces. I try to remind myself every day of how fortunate I am. I cherish each of these experiences and the memories I’m making. It was extremely difficult for me when I was first diagnosed with Pompe to adjust my lifestyle to my disabilities. I found that I was planning my life around my pain and fatigue. I had to cancel plans with friends and family because I was worried about being able to keep up.

I have since learned that it never hurts to ask if there is disabled accessibility. It never hurts to admit that you may need help participating. Most people want to help when and if they can, and if you just ask, you could end up checking something off your bucket list! I like to say that this membership definitely has its privileges.

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Getty Images photo via oatawa

Originally published: January 11, 2018
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