On The Job Training for Life


A few months ago, I began working for a man who has ALS – Amyotrophic Lateral Sclerosis. It is more commonly known as “Lou Gehrig’s Disease.”

It’s a whole new adventure for me, and mostly what I find myself thinking a lot is simply this: ALS Sucks.

For the first month or so that I worked in his house, the worst time of the week was Friday at 7:30 PM. That was when I was done for that week and had two days off. And it was also when my mind started replaying everything I had learned in my training and everything I was noticing in his condition. Mind you, my training consisted of learning where all the cleaning and cooking supplies were located along with aspects of daily life. Not hard on a technical level, but a lot to learn on the personal level. Something I was not prepared for. But then I had a bad week and showed up to work with it very obvious that I had been crying. Roles were switched that day – they took care of me. (Seriously, when does your boss insist that you drink 2 glasses of wine while working??)

Before I learned more about ALS, I thought most people get a diagnosis and die within 6 months to one year. Truthfully, I don’t know what’s worse: being told you have 6 months to live or 2-5 years. Some are even given 10. The former is an impetus to make sure everything is in line and do what you can quickly. The latter gives you more time, but it also gives you more time to think. And think. And know every which way your body is giving out on you.

There are days where life with ALS is hilarious. The things that only happen because of adaptations that have been made for life. More of those later. And the things that I am having to do on a pseudo-medical level will help with my nursing future, along with the general tips and tricks that can make running a home more efficient.

Then there are the days where I realize what the disease has done to my boss. I grieve for him, and I grieve that we live in a fallen world. ALS causes motor neurons to not carry their electric impulse, which does not allow for muscles to move. Because our bodies operate under a “use it or lose it” program, the muscles weaken and atrophy. I knew about the limbs and neck muscles; I forgot this was also applicable to the abdominal muscles. Thus when I was talking to his wife about how tight his abdomen felt, she informed me that it was the disease taking away his abdominal muscles’ ability to support the organs. The thought of my boss looking like a starving child in a third world country was a bit jarring.

As I was talking with a friend this weekend about this, she told me of a hospice nurse who viewed long-term illness as a blessing. You have the time to say what needs to be said, whereas a sudden accident takes away those opportunities.

And so, my job continues – provide support in his home in whatever way I am called, whether that is emotional for the disappointments of a body giving out way before the mind or physical for the ways in which his body can’t function. Or the social by cooking for friends and family as they visit. But I’ve found over the months that I do my job less because of income and more because of love and compassion.

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