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It's only a "mild case" of ALS

By Scott Craig

Everyone needs to begin somewhere. I guess I’ll just start at the beginning.

My name is Scott Craig and I have a “mild case” of ALS. I say that with a wink and a smile to remind myself, and others, that my disease doesn’t define me. It’s also a good ice breaker and allows people to relax a bit in my presence.

I started ALS Uncensored and my podcast for a few reasons.

First, I must continue to have an outlet for my thoughts. I have always been a storyteller and enjoyed being on a stage. I enjoy making people happy while also getting to be creative. It’s also a good way to lower my stress and keep my focus. Maybe writing and broadcasting can provide that for me once again? I certainly hope so!

Second, ALS is such a brutal and isolating disease. I am convinced that many die of the depression that comes with ALS way before the actual disease does and I hope I can change that. I know I’m not the only one going crazy inside, so maybe we can all be crazy together and find a little humor in this disaster? Maybe sharing my struggles, trials and errors can help make things easier for you or maybe the next pALS. 

Third, ALS is much too serious to be taken seriously! A lot of the day to day sufferings are ridiculously funny. At least to me they are, but I think almost everything is funny. Humor and laughter are both defense mechanisms for me and I embrace them. ALS is a cruel joke. I’m surrounded by love and beauty and faith but I can’t touch it. I’m constantly covered with drool, piss and shit and can’t get rid of it. Maybe it’s the pseudo bulbar effects of ALS? Maybe it’s the antidepressants? Maybe I’ve run out of tears? Whatever it is, it’s funny and I’m going to laugh about it and roll my eyes and swear and if you don’t like it, get your own podcast. Hahaha.

Last, I want a place to swear and scream and rage and for others with ALS to do the same. We all need a way to mentally detox. To do something besides sit in a wheelchair and fade away. I want to scream into the abyss “Fuck ALS!” I want to live! And I want the gatekeepers, CEO’s and seats of power to hear us and react with urgency. Or even to just get a response. To be acknowledged!

ALS Uncensored is about adventure, laughter and service while rolling and stumbling through the valley of the shadow of death. Sir Edmond Hillary once said, “it is not the mountains we conquer, but ourselves.”  ALS is a disease that destroys the neurons that control the muscles of the body, leaving many locked-in, with a sharp mind remaining within a broken body. We have to continue to adventure into a physical world not made for us. We have to laugh in the face of the absurdity of our predicament because there will never be enough tears. And we will serve and help each other today while paving the way for the tens of thousands that will, unfortunately, come after us. We must do all of this by conquering the only mountain left before us, we must conquer ourselves!

Well. That’s it. That’s my entire elevator pitch about why you should read my blog and listen to my podcast. I hope it teaches and inspires and motivates. I hope you laugh with me and cry with me and remember that no matter how tough ALS can be, life is still sweet!

Besides, it’s only a mild case of ALS.

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I know you didn't write this piece Scott but I truly have a mild case of ALS... I thought for sure it would have consumed me by now. Symptoms I now know were ALS puts me around 10 years with ALS, the Stephan Hawkins version of this horribly demanding disease. Anyway, I am still fascinated by the true lack of apathy that a majority of people have for what is going on inside my body. I wanted to recognize how you are covered with all forms of excrement and you have to laugh, I wish I could have that same reaction, I just want to cry, not because I am going through this but for the anguish I bestow upon…


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