Reflection 7 – The Hidden Sides of ALS and Why I Was Ashamed Of It?

Scream! I Know What You Did Last Summer!

Most horror movies have two main things in common; they want to scare the viewer and you can never expect what is coming up in the next scene. For me and my wife, ALS is scary and unexpected! Given its progressive nature, you’re always moving to a new state. As my wife would nicely put it to people: it takes us a decent amount of time until we can fully adapt to our new situation. And once we do that and before you realize, you are already struggling with a new symptom that you have to re- adapt to and so on and so forth. It’s a non-ending process! And its symptoms are quite many and disturbing. For me, it began with gradual weakness and subsequently lack of movement in my limbs starting with my right hand. This was followed by difficulty in eating, talking, and recently breathing. I would tell myself sometimes that it feels all my previous years I was charging and then suddenly someone unplugged me and that my battery was slowly dying.

Besides the obvious physical pain, the psychological pain is huge. ALS would put me in some embarrassing yet funny situations. Probably the one that directly comes to my mind is using restrooms. This was around the third year of my diagnosis and my arms were pretty weak especially my hand grip. And for those who don‘t know me closely, I‘m a regular user of restrooms  So basically I would go inside but remain unable to unbutton my clothes, and sometimes even worse I would unbutton it but remain unable to put it back! This could sometimes happen in an awkward time like just before my class begins. Although these were frustrating times, they would leave me giggling as I am locked up in the restroom. Another unrelated but yet embarrassing one was during a department meeting where I was heading the curriculum committee. We were receiving feedback from our colleagues so we can edit accordingly. The department head looks at me and asks: ”Tamer, aren‘t you going to take notes of what is being said?” I was caught by surprise as everyone looked at me and my hand has gotten so weak that I couldn‘t hold a pen properly anymore. Feeling embarrassed, I took out a pen and acted as if I am writing where in fact, I was totally dependent on my memory hoping it won‘t fail me! This event plus many other interactions with my colleagues and students put me consistently in embarrassing situations.

However, my main struggle I believe was my inability to be at peace with ALS for a relatively long time. In other words, I was too ashamed of it! I hated how my fingers got curved by time and started to look weird, how I would have a limp in my walk, my frequent falls in front of others, my strange voice along with many other symptoms.

My only reverence for that was trying to constantly remind myself of the rewards of Allah if one is able to display patience and gratitude. But it’s hard! However, I think that my latest episode with ALS that resulted in me having to insert a gastrostomy tube to eat and a tracheostomy to breathe has made me more acceptable for what I am going through. One part of me tries to convince the rest that this is the worst it can get and therefore no need to grief anymore. My latest episode also opened a floodgate of love and concern from family and friends that was beyond imagination and difficult to see how I would deserve all of this. Simply a pure blessing from Allah! I am very convinced the greatest blessing Allah has given me and those around me was the relatively gradual decrease of my health rather than a sudden drop that could have been detrimental.

As much as I hit low points all the time, these blessings would not have happened if it was not for ALS. So in some ironic respect; thank you ALS!