Saturday, February 13, 2016

What it's like to have ALS - from someone who has ALS...

The following is from a post from Jay Smith, who started the 90 Foundation, a non-profit raising money for research toward curing ALS.  He was diagnosed with ALS in 2014.

Ask or Deal, the increasingly difficult game show that is now your life.  Living with ALS is different for each person but one thing is for sure, you will constantly be playing this game.

Sure, the first rounds are easy:  do I try and tie my shoes or ask for help?

As the game progresses so does the level of difficulty.  This constant internal battle of what do I ask help with and what do I just deal with might be the hardest part of the disease.  As much as I am trying to paint a picture for those with the disease, it's virtually impossible to understand how consuming this can be for us living with it.

It usually starts with the spouse or partner but eventually involves everyone around your. Your kids, parents, in-laws, friends and caretakers.  In the beginning, it is almost charming.  Your wife cuts your steak.  Your buddy opens your beer.  Your daughter holds your hand up the stairs..

Then the game gets real.  Your husband wipes your ass, your sister holds a tissue up to your mouth during a coughing fit and your dad has to suction snot out of your nose.  This is where the game gets harder.  Friends start to get uncomfortable.  Family doesn't come around as often.  Your spouse gets tired.  Understandably so.  It's not you, it's the disease.  So they say.

The problem is, you are the disease.

Everyone grows tired of your needs but they get to escape.  Even if that means washing the dishes, sipping a cup of coffee or sleeping.  I can see why so many people get divorced, abandoned and give up.  They had no idea that ALS is just one big game of Ask or Deal.

As the game gets harder, you must adapt.  I used to think you could escape ALS when you sleep but that's no longer true.  Ask or Deal is in full effect at bedtime.  Do I ask for the covers to be pulled down now, knowing that in five minutes I might be cold.  Or do I wait five minutes to see if I'm hot?  The latter requires one ask but still requires a possible wake up.

My wife always gets me positioned and says "happy"?  It isn't about being comfortable, it's about being able to deal.

The real question is can you deal with this amount of being uncomfortable?  If I were to get comfortable, you'd be adjusting me all night.  I always want the last thing my wife hears before she falls asleep is "I love you."  More often than not, it's "can you scratch my ear."  I wish it weren't the case, but that's my life.

It's a sad fact that ALS picks type A personalities to play in this game.  It would be like picking couch potatoes to compete in American Ninja Warrior.  In some ways, it a good life lesson, forcing me to be more patient, less neurotic and easier going, but mostly it's just annoying.

I don't spend my time complaining.  I'm happy to be alive.  I would, however, like to pick this booger that has been lingering since Wednesday.  My best piece of advice for someone newly diagnosed is to become the grand champion of Ask or Deal, it's the only way to stay alive.  And when you master it, let the rest of us know how it's done, wouldya?

click this link to get to Every 90 minutes website


1 comment:

  1. That's really well written, gives a good glimpse into what it's like - thanks for sharing.