The Truth about ALS

 It is said that only the wearer knows where the shoe pinches. But if you want to know how it feels to be trapped in an ALS body, try the following. Next time you get an itch, don't scratch it. If an eyelash gets stuck in your eye, don't touch it, let it be. Drink all beverages through a straw without using your hands, for a day. Find a comfortable seat and sit through an entire movie without moving an inch. Communicate a sentence without speaking or using non verbal cues. I could go on and on but you get the gist. ALS brings along with it, it's BFF that is Discomfort. A general feeling of uneasiness in your own body. Even a paper cut on the pinky finger is enough to make us feel uncomfortable, so you can imagine what is the magnitude of discomfort from a disease that affects the whole body. Firstly there is the feeling of heaviness. My limbs feel heavier to move even slightly, although I have lost muscle. As if I am living on some planet with greater gravitational force th

 I have an oversimplified daily routine. Yet my day can turn out to be either one of the following.  Something somewhere goes wrong. I get irritated or disappointed or sad. As a result I cannot eat properly or drink water. I get more frustrated. As a consequence I can't sleep well and wake up cranky the next morning. Leading to a vicious circle of bad days.  Or it could be the other way around. Most things go well. I can eat well and stay hydrated. I can sleep relatively well and start off a virtuous circle of calm days. This election season I vote for Peace of Mind and am consciously trying to have more days of the latter kind. After all, what is the use of all the education and corporate exposure if I can't apply the learnings to the most difficult situation of my life? In fact this should be a milestone that we all must strive to achieve as shown here in my drawing from few years ago. But there are a few challenges. Firstly the base level of frustration is already high in AL