Yesterday I shared about unintentional or intentional comments that some might say, hurt, when uttered. One being, “you look good”, or “you don’t look sick”, respective our Amyotrophic Lateral Sclerosis (ALS).

So, what exactly do you expect to see, once you are aware that someone has ALS? Someone like Stephen Hawking? Or can you be honest and admit that you have no idea what it is, or what to expect. Don’t get me wrong, we know and understand it’s well intended. You have to realize that outward manifestations, or visible changes caused by ALS can be deceptive. But how, you may wonder.

Allow me to provide some context to the phrase, “looks can be deceiving”, applicable to ALS. Please understand that by the time one is diagnosed with ALS, the damage is already extensive, however barely perceivable. Physical signs could be as benign as a slight cough, or tickle in the throat. In my case, the scuffed toes of my shoes, later identified as foot drop.

ALS is so difficult to diagnose, that it can take up to two years, if you are not miss-diagnosed with MS, MD, Stroke and a slew of other conditions. The experts have to test for everything else and exclude them before settling on ALS. So if we don’t look sick, or decrepit, it’s not us it’s you.

Let’s look beneath the skin to help you understand. ALS as it begins, is imperceptible. Microscopic nerve cells begin to change, what causes this, extensive research has yet to pinpoint this. Eventually those nerve cells die, specifically nerves that control voluntary movements. There are more physiological systems and organs that are affected than you know. We, the afflicted and our families quickly learn this awful truth.

By the time ALS is even considered as a possible diagnosis, thousands or millions of nerve cells have died.

THERE IS NOTHING,TODAY, TO STOP IT!

We will not get better! There are rare exceptions of individuals reversing or halting their ALS. Research is underway to understand why and how.

When we do receive the news, there is a huge mental hurdle to overcome, the first of many more to come. If one is able to come to terms with this new reality, I say if because many simply can’t, to include family members and partners. The physical changes and challenges aren’t far behind.

I may look different, being in a wheelchair. I may sound different, or not be able to speak, but I’m still me, we are all still ourselves. Our minds and feelings are in tact, altered, perhaps frail, but still here.

I, we appreciate your kind words, just realize that how we look is not a reflection of the death that is progressing within us. Our families are keenly and painfully aware. As they see us and the nuanced changes in our bodies. Imagine the pain of a person afflicted with a rapid progression, able bodied one day an gone months later.

This is one of the cruelest diseases, don’t add to the pain by being insensitive, be kind In thought, words and deeds .

Juan Reye
TJO