ALS, The Person Under the Cape

Every Superhero, ultimately in their storyline, reveals what brought them there. Often trauma, struggles and a belief that they can make a difference. Frequently individuals living with ALS are referred to as heroes, for exhibiting strength in the face of death. Resilience, copping with the daily loss of physical functions. Mental fortitude, for the capacity to endure ALS and everything it encompasses.

Yet they, the person with ALS, will be the first to rebuff this notion. Why? Well, because “we” are doing what comes naturally…adapting. As humans we do not cull out the weak or infirmed, for the most part we care for them. As we are cared for, we adapt our minds, allowing to be cared for, although some experience great difficulty with this.

It is understandable, though, why others may perceive us as heroic. Here’s the reason, at least my thoughts of why; others can’t see themselves in our place. So in their eyes and minds, they assign great reverence to those that are. But in all honesty, they themselves would adapt also.

There a few who, for other reasons, are deserving of the moniker “hero”. You actually get to choose who they are, “for you”. You know what is important to you and what a hero is to you. In my eyes, every caregiver, for any debilitating condition, is a hero. I didn’t realize it at the time, but my aunts are my heroes. While growing up, they cared for my paternal grandmother, as she endure Dementia until she passed.

You see the truth is, we are scared, perhaps not of dying, but more so, scared of leaving our loved ones to suffer the loss. Of course with ALS we began saying goodbye the moment we heard the words “you have ALS.”

Hero or not, the term doesn’t matter. What truly matters is that you live your best life in spite of ALS. As persons living with ALS, the moment we opened our eyes when we wake…we are surrounded by heroes. This is what is beneath the Cape, keeping heroes aloft.

TJO