Reflection 36 – Why Do We Have To Experience Embarrassment?

Do you still remember that little kid who used to bully you in school? Can you think of an instance when you were labeled too skinny /fat/short/tall? Do you still recall that mean teacher who called you once out only to find your schoolmates laughing at you? Probably all of us have experienced such awkward situations at least a couple of times in our lives. In other words, we were signaled out because of a certain feature we possess –whether physical or mental–and as human beings we love to feel this in-group effect (the feeling that we relate to a certain group) and hate to feel this out-group feeling. However, we tend to love it if we were signaled out for a positive feature we have . The more I grew older, the more convinced I became that these emotional setbacks are way more detrimental than any physical pain we might have encountered in our early childhoods (do you recall that kid, who kicked /punched you once in the school playground?). These embarrassing experiences seem to stick with us–I would say–to a large extent for as long as we live. They tend to be part of our life experiences so much so that we need to learn how to cope with them rather than simply dismissing them. I was taught this coping mechanism with nothing else other than ALS. But it definitely took some time!
I will begin with a DISCLAIMER. My understanding of the nature of this life changed significantly in recent years. Some time ago, my perception was a pretty rosy one; one that is forced onto us via different media outlets, and has been especially intensified lately through the different social media platforms. And this is the one we see in TV ads . As I began my ALS journey, my perception was altered in a way that began to include potential physical pain that was bound to happen. But honestly, most of my focus was geared towards those physical disabilities that would encroach on my body to make it not fully functional anymore! Little did I think of the emotional pain (the numerous embarrassing situations) I will have to deal with for the rest of my life. I can still remember in February 2019 when I first enrolled in the UCI clinical trial and my wife‘s insistence to buy a walker for me while we were in the US. She was being realistic while I was in denial although I already had some embarrassing falls here and there. I couldn‘t take seeing myself as well as people seeing me using it for walking. And what applies to the walker would eventually apply to the wheelchair! This constant feeling of awkwardness and embarrassment were here to stay with me and were things that I had to struggle with a lot!!
Nowadays things have changed as I lie in bed helplessly connected to my very dear friend ; my ventilator. I like to think of myself of being at ease with ALS yet I can‘t really tell whether this is out of despair or hopefulness? Am I really accepting my surroundings and not feeling as embarrassed as before because of some good trait I acquired?! My main solitude in all of this is two-fold. First, Allah has decreed that in this life all human beings will have to go through some embarrassing situations ; there is no way out of this and we need to learn to cope with it. Second, the best examples living on this earth (all prophets and all great minds afterwards) had to deal with situations, where they were ridiculed or were being seen as an outlier. However, these embarrassing feelings did not stop them from doing what they were doing. In the same way, I‘m seeing ALS as a positive energy that is turbocharging me rather than a deterrent stopping me or make me lag behind .