ALS Sucks

The Middle is Messy, but it’s also where the Magic happens.  – Brene’ Brown

The quote from Brene Brown is about the idea of the formula for the Hero story. Think of every Disney movie you’ve ever seen. The Hero grows up obscure or troubled, the hero goes on an adventure and has some struggles, then the hero emerges victorious and changed in a positive way. It’s not the beginning or the end that changes the hero, but the middle. If the hero didn’t struggle then change would not take place.

My life has been messy lately. The reason for my absence is that my husband, who has ALS, fell the first week of October and broke his right shoulder. He had lost almost all functionality in his left arm and had been relying on his right hand to do most things, including use his walker, so as you can imagine this event stripped him of any independence he had enjoyed. It also meant that I suddenly became a full-time caregiver as he needed me to help him with the most basic things including wiping his nose, going to the bathroom and feeding him.

Let me start by saying this. ALS is one of the worst diseases I can imagine. It not only traps a person in their body, leaving them alert and aware of their diminished capacity, but it also robs the person’s loved ones of their lives as well. For the last three months my life has been consumed with caring for my husband while trying to maintain a job, a household and care for my four-year-old son who can’t understand why Daddy can’t play with him. I don’t want to downplay in anyway my husband’s suffering. I can’t even imagine what he must be experiencing as he loses control over his body and knows that he will ultimately lose his life to this disease.

At the same time, being a caregiver for a spouse is excruciating in its on right. Not only are you watching your spouse go through this, you are losing your partner, your lover, your friend right before your eyes, but you don’t have time to grieve. All the responsibilities are now on you and so you have to soldier on and ensure your child is cared for and the rest of your obligations are met. In the mean time you are watching your life go by and missing out on the things you used to do and enjoy. I often feel jealous when I hear of people going out to dinner or to a movie and I remember when my life used to be so casual. I liken this situation to two people who are both prisoners of war and being tortured. Both are in agony, neither can help the other, and both just simply have to endure together. I would not wish this disease on anyone.

I am in the middle, and boy is it messy. I don’t enjoy being a caregiver for my husband. I want our old life back. I want him to be the one who mows the lawn and takes out the garbage. I want to be able to go out to dinner and eat and not wonder if he’s going to choke. I want to have him play and wrestle with our four-year-old son instead of me being our son’s constant playmate. I want this to be different…. but it’s not. I don’t get to choose. This is the middle, it’s harder and more terrifying then I ever thought anything could be. But there is an end and I will be changed. My only hope, my only prayer, is that through all this I will come out better, and that I will be able to make the world better as a result of all this pain.


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