The adage that literally means; if you want to know, you have to experience it, what ever that may be.
As for ALS, it truly can’t be experienced unless you have it. But I can attempt to express, in the hopes of helping you understand.
Walk A Mile in my shoes for example, it doesn’t require a mile.
Ok, you have peaked my interest Mr. TJO!
Allow me to illustrate.
You see it won’t take mile, or half a mile, it only requires about four feet.
Four feet in my current stage of ALS is tantamount to a mile, sometimes more like a marathon. The effort and mental gymnastics to accomplish this simple feet is equivalent to the last mile of a marathon, it’s more sheer will than physical ability. It’s not necessary to expend so much energy with alternative methods available. But what would you do if it might be the last time you can perform such a mundane task? I thought so… the same.
Every step a calculated mathematical algorithm known only to you and the malfunctioning neurons. Your brain, a field commander screaming orders to a platoon of fallen nerves, your body the field of battle. One or two survivors on the field hear the call and your leg moves. Repeat the operation until finally you reach your objective. Having crossed the distance with minimal troops, you are now exhausted, depleted of physical and mental reserves, resupply is days out.
To you it’s four feet, a couple of steps. To us with ALS, it’s an expansive field wrought with landmines and reinforcements that never arrive. Yet we forge ahead until we can’t .
Walk a mile with ALS…