So what does ALS look like? It looks like you and me. It looks like your parents, siblings, relatives, friends and folks you haven’t met. ALS also looks like a child, teen, young adults and every age. Look in the mirror, that’s what ALS looks like.
What would help you and others understand the devastating effects of this elusive disease? A slew of medical and scientific terms? Confusing at best? Personal testimonials? The web is rife with them; glanced over and on to the next one. A global viral campaign? Been there done that; over half the participants didn’t know why! I wish I had the answer, it really is one of the worst conditions in existence, a living death.
Everyone affected by ALS puts on a brave face, behind this, in all honesty, is a feverish treading of water beneath the surface. I can only speak about my experience and what other persons living with ALS share, and we do share amongst ourselves.
The emotional toll is crushing, second only to the physical toll, at times emotions are exceedingly more soul crushing. Given that our body is failing, ultimately our emotions are all we have left to engage with. At times they boil over, believe us when we say it’s not you, it really isn’t. We are angry and frustrated with our ALS and our personal physical prison.
So give us a moment, it will pass or subside, I (we) will put on our Brave Face and keep treading along with you.