ALS Bytes

For the month of May, ALS Awareness month, I’ll be doing my best to chronicle what it’s like to have, live with or care for someone with ALS. This is not necessarily my story of life with ALS, but it could be yours, in the blink of an eye…or, the twitch of a muscle.

Day 1

Again, you find yourself awake long before what was once your “normal time”. As you transition from your dream as a healthy, functioning adult, again, grief dilutes your naive former existence, painfully aware you’re no longer able to adjust the bedclothes, turn onto your side, or even to scratch an itch on your own. Barely able to turn your head to see the clock on the dresser, you remind yourself, again, to look into those clocks that project the time onto the ceiling. You don’t even bother trying to wake your wife to help; by the time she’s removed the bipap mask to better understand your voice, slurred beyond recognition by your weakened tongue, she’ll just insist on “getting up anyway”, as daylight fast approaches.

Day 2

You’re still “the man”, the father-figure of the family. As you’re being helped to sit upright on the bedside, you’re faced with another day wondering how the kids could possibly see you as the strength of the family, the provider. How can my wife feel safe and secure in my debilitated presence. Wondering where she finds the strength, day after day, to not only wear her own shoes, but yours as well. You see the grimace with each lift, every transfer; you know too well how her joint-pain is compounded by each loving act, yet she continues to encourage you with a smile to “never give up”, but you know the many tears that flow, in mourning of your former happy family life.