Reflection 59 – Killing Me Softly!

As a teenager, I used to love that song! Now, I believe it summarizes my sickness; aka ALS.
A quick disclaimer before I begin: I DO NOT intend by these types of writings to make people emotional and get them worried about my medical condition. I can tell you, thanks God, I am writing this with a big smile on my face . It’s just that I am getting more and more used to expressing myself in writing; something I never thought of before!
As I used to tell my wife, it feels like I was always put in the charger and then I was unplugged when I started my ALS journey. In other words, the battery began dying off. Everything began to change in my body. I wasn’t really aware what each organ is doing until I began to loose some of its functions. My body began to vanish ; literally vanish! Where was it going, I had no idea! In the first two to three years, it wasn‘t that intense. I believe in my fourth year onwards, things began to take a U-turn. Every now and then, I began to realize that things were not normal anymore, and that it would keep deteriorating. But that is for the physical part, who cares about that?! Let me now take you to the more positive part .
Back to the title..Killing Me Softly! This means, thanks God, it wasn’t an abrupt change. For many other ALS patients, the change is aggressive and very sudden. In my case, I was given some time to adapt and accept as I saw all these changes happening. It also gave some time for those around me to digest what was going on though I assume it was more difficult for them to feel helpless in front someone they love. In any case, softly really meant that it was a MERCY from Allah. Despite being softly, it was still pretty difficult to grapple with this weird disease!
But on another positive note, ALS doesn’t affect any mental abilities. So although my body was decaying, I could still remain alert and sharp . As one dear friend of mine in Irvine once told me that when you loose some of your abilities, your other ones start to sharpen. Haven’t you seen how blind people have super-duper hearing abilities! In any case, loosing walking and then most movement in general, followed by speech meant that I had more time to reflect deeply on my life and fortunately enough try to articulate it as best as I can hoping that it touches people’s hearts and minds. Pondering on creation in general and REALLY feeling grateful with everything I have were two additional qualities, I believe, I gained from this disease.
But REMEMBER: Each one of us has his/her own story! We should all reflect on our lives in one way or another. I would say that writing is really beneficial especially for those like me, who don‘t tend to express much in words. Having thoughts in your mind is one thing, putting them down in writing is another!