Laughing at my nightmare by Shane Burcaw

Shane Burcaw_03

Some people lead relatively pain-free lives, but manage to spend the vast majority of their time complaining. Then there are people like Shane Burcaw, who, to be fair, has been handed a pretty raw deal, but lives life to the fullest and is an inspiration to everyone he meets.

 

I will most likely be dead before I turn 30. Even that estimate is a generous one. I have a disease called Spinal Muscular Atrophy (Type 2) that has been slowly destroying all the muscles in my body for the last 18 years, 11 months, and 354 days. Eventually I will catch a cold, it will turn into pneumonia, and my body won’t be able to fight it off. At least that’s what all my doctors subliminally imply every time they tell me I’m lucky to have stayed out of the hospital for almost a year now. Look at that, you already know my deepest fear, the one that hits me like a train every single night when I’m trying to fall asleep; I don’t know how much longer I have to live. We’re practically dating.

To be honest, I’m not as upset about my circumstances as I maybe should be. Not that being sad all the time would be the best way for me to live my life either, but I’m genuinely happy 99.9% of the time, which gives me a slightly distorted view of reality that causes me to forget the fact that I am in a wheelchair and need to do mostly everything a little bit differently than everyone else. For instance, I love sleeping, it’s one of my favourite things, but about a year ago my stupid doctors ordered that I start using a bi-pap to help me breathe while I sleep. My basic response after trying the machine for one night was “screw that, I’d rather die in my sleep than have to wear that every night” and I haven’t used it since. I’m probably being ignorant.

And yet, I don’t want to die – not today, not tomorrow, not ever. I love being alive. Besides doing some things differently, I pretty much live a normal life. I have a great family and the coolest friends in the world, I go out and do things, like drink, (I only weigh 50lbs., so drinking gets interesting) go to concerts, hangout, pretty much anything a normal almost-19-year-old does. I just finished my first year of college; I am study journalism and psychology at a local liberal arts college.

Living life from the seat of my powered wheelchair has allowed me to develop a pretty unique perspective on life, one that I hope to share with all of you via my website, http://laughingatmynightmare.1000notes.com. I hope at the very least that someone out there enjoys what I have to say. I can promise you this much; it will be real, it will be blunt, it will be sad, it will be funny, and it will be an adventure!

© Shane Burcaw 2013. All Rights Reserved.

 

Where to from here?

Since starting the Laughing at my Nightmare website two years ago, Shane Burcaw has done so much to raise awareness about his condition, Spinal Muscular Atrophy. Last month he put together and participated in the 2013 Bethlehem Laughing at My Nightmare 5k Run, Walk and Roll and 1 Mile Fun Run, proving you don’t have to have a pair of working legs to take part in a marathon. He has also recently been on a speaking tour educating the masses, as well as appearing on Katie Couric’s talk show. It’s his dream to be on the Ellen DeGeneres Show.

What is Spinal Muscular Atrophy?

Spinal muscular atrophy (SMA) is a genetic disease that causes muscle weakness and a progressive loss of movement. There is no cure, but therapy and support are available to help manage the condition.

SMA causes the motor neurones in a certain area of the spinal cord to deteriorate. This results in progressive muscle wasting and loss of ability to move parts of the body.

 

Motor neurones

Motor neurones are nerve cells that connect the brain and spinal cord to the body’s muscles. The motor neurones send out electrical signals to the muscles, which tell the muscles when to contract and relax. In people with SMA, the motor neurones deteriorate, causing the link between the brain and muscles to break down gradually. As the link between the brain, spinal cord and muscles breaks down, the muscles that are used for activities such as crawling, walking, sitting up and moving the head are used less and less and become weaker or shrink (atrophy).

 

Treatment and support

The management of SMA currently focuses on the symptoms and providing supportive care. For example, breathing exercises and support can help to reduce the risk of chest infections, and a feeding tube may be needed for babies that are unable to swallow.

There are also several charities in the UK that can provide information and support, such as The SMA Trust and The Jennifer Trust.

 

How common is SMA?

In the UK, it is estimated that there are between 5,500 and 6,000 people with SMA at any one time.

 

This information was supplied by the NHS.

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