My ALS Truth - Inspirational or Dillusional

 I’m often told that I am inspirational. A living ray of hope in a world full of hate and misery. I am honored to be thought of with such high regard. It’s flattering, but I’m afraid this idyllic portrayal is unjustified. I might appear to be full of hope and positivity. Unfortunately, if you peer behind my mask, you won’t find armor. Instead, you will find a hurt, scared little boy.

Before you jump to your keyboard to leave a comment of encouragement, let me explain.

I am merely a man, I worry about my future and my family's well-being. I have so much animosity towards everything. I tend to act irrationally and lash out at those closest to me. It’s uncalled for, but my blood boils in the heat of the moment. The only way that I can explain what goes through my mind is an overload of thoughts.

I don’t want to act in such a manner, but trying to type with my eyes can be frustrating even in the most ideal conditions. Add stress, anxiety, pain, misery, and tears in your eyes; suddenly I have to calmly and nicely articulate my thoughts. It’s damn near impossible to type my needs quick enough, let alone, to think of my tone.

I’m sure you can relate to this… We’ve all sent or received text messages where things are misunderstood. This happens to me 98% of the time. Lost in translation or mistaken for a snarky comment.

This life, my life with ALS, can humble anyone.

Why? How?

ALS amplifies everything because it’s Hell on Earth. Emotions run high, words become weapons, and judgment becomes jeopardized. Things are said that can’t be undone. It’s so easy to get caught up in your emotions, especially when communication is compromised. I am ashamed of my actions.

The hardest part is to accept help knowing that one wrong thing can set me or the person trying to help off. There isn’t a perfect solution. I live in a world of incomparable pain. I have to convince myself to remain hopeful, but after 8 years of constant decline, hope turns to delusion. At this stage of my ALS journey, ALS has done its worst to me. I can’t walk, talk, eat, drink, breathe or move.

What’s left?


Just a guy who's s trying to remain upbeat trapped inside a dying body. I wish that I  was this pillar of stoic optimism, but unfortunately, that’s just a guy I play online. I’m sorry to those I hurt. Please know that I’m sorry. I too dream of a normal life with normal interactions. I pray for resolve and an end to the suffering.

This is my truth. The real truth of ALS.

 





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