Reflection 63 – Staying STILL

Shut Up! Stand Up! Your face to the wall! Hands Up! Don’t Move!
For those of you of similar age, you have probably been a victim once of this horrible detention or at least seen one of your classmates being tortured. Poor student! As if it wasn’t enough to stand up with your hands high, you were supposed to not move. I think it was awful altogether, but not moving is something else!!! I came to know this the hard way…..
As I used to read about ALS symptoms some years ago, I never realized what paralysis of the different limbs would mean. Probably part of me didn’t really want to see this happening; yet another part didn’t fully understand. Since your motor neurons -or the connection between your brain and muscles- is interrupted, your muscles start to weaken. And as they say, if you don’t use it, you lose it! Slowly but surely your muscles fade away. And something new begins to happen: you feel the brain is giving a signal but (unfortunately) there is no response anymore . Remember that little pinkie finger you would stick in your nose (just kidding ); well, it’s officially out of service. Those small little moves you are constantly making with your hands (but probably not aware of) are not happening anymore. Now for every move of your hand, you need someone to help. And this can get REALLY ugly.
I remember around a year and a half from now, I began to get really frustrated, especially with my arms. Initially, when I was struck by ALS back in September 2016, it all began with my right arm. Since that time, my arms have always been the most severely affected part. Elhamdulellah . Anyway! One of the toughest moments for me was going to sleep. Yup! This very act of assumingly relaxing and calming feeling became a nightmare for me! Why? Well… I tend to move around while sleeping a lot; from my right side to the left side to my back… You name it! Technically, this was all OUT of service now. The plan was as follows: if my wife didn‘t go to bed at the same time, then she or one of my kids had to make some arrangements. Every single part of me had to be put in its place. From laying on my side, to the position of my legs, to my arms down to the fingers. It was a very hectic process and once I had settled on a certain position, I knew that this was it! The problem most of the time was in my arms. One of the symptoms of ALS is having muscles fasciculations; involuntary muscle movement. For some unknown reason, I would get this in one of my arms that in turn would move my hands and fingers. So, I end up with my hands moved a bit or one of my fingers being bent! In turn, this would mean that I must begin shouting and calling for someone to come and help. Usually they would hear me, but as my voice began strongly deteriorating, then it became quite a challenge. Poor me….. I would try to shout but the only one who could hear me was no one other than ME . There were of course other tough situations such as when something ITCHES in my body, and I can‘t help myself or when a fly or a mosquito decided to take a tour on my face . It is in those EXACT moments that you fully understand your extreme weakness and helplessness!
Probably you‘re wondering what I do now with the continuous deterioration in muscle power. Well, it turns out that Allah has instilled in each one of us this amazing ability called ADAPTATION. As difficult as it is, you get used to this new situation. Yes, whatever position I begin my sleep with is the same one I would wake up with. As I navigate this daily challenge, I can ‘t help myself but think of that poor kid facing the wall with his hands high up and not being allowed to move!