free to be

Recently, I met a middle aged man who was diagnosed with ALS (Lou Gehrig’s Disease) 5 years ago. He is dependent on a ventilator because he lost his ability to swallow and protect his airway a long time ago. Today, the only muscles he has any control of is the ability to move his eyes and blink but even that is becoming difficult. One of the most devastating things about ALS is that while the muscles of the body atrophy, the mind stays fully intact.

The day I met him I was a nervous wreck. I know little about ventilators and because of that, I get a bit freaked out by them. Most of our patients are able to communicate with us and those who are unable, typically have some sort of dementia. It feels awkward to talk ‘to’ someone instead of ‘with’ someone. You become acutely aware of your tone…of the pauses…of how ridiculous certain things sound when you’re using words as fillers instead of as a genuine means to connect; which is a lesson in and of itself.

When I walked into his room, I found him sitting up in his wheel chair. There was high tech equipment all over the place-including the very chair he was sitting in so the intimidation factor grew exponentially in those first few minutes. I walked over to him and introduced myself. His wife and a caregiver watched us from the couch. My hands were shaking-I hoped I was the only one who noticed but even if he did, he smiled…his eyes squinted up just a little and the corners of his mouth followed suit. I laughed and said “I’m just going to be honest here…you can probably teach me waaaaay more then I could ever teach you.” And there is was again…a tiny hint of a smile. Yeah, he noticed; he was on to me from the second I walked through the door. ;)

I watched as his wife picked up the communication board. She stood in front of him, pointing at letters, her fingers flying across the board. He communicates by blinking to spell out words. (you have to observe him closely to actually see the ‘blink’ because it’s more like a tiny squint that is sometimes hard to catch.) It was amazing.

Still trying to overcome my bundle of nerves, I asked for the board and had her give me a quick lesson. Then I turned to him and said “alright, consider yourself challenged…give me a word, any word!", and we began to converse.

It was the most exhilarating thing in the world-which I know sounds crazy but it was incredible. He spelled out c-i-g-a-r, which I thought was funny. Next thing I knew we were placing a cigar soaked in scotch into the side of his mouth. He can’t suck on it but he loves it. ALS has got nothing on this guy.

Before I left, with the cigar dangling out of the corner of his cheek, he spelled out “come again tomorrow and we can party”.

And there you have it, I have the greatest job in the world.

Aimee's Story
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