Long Day’s Journey into Light

Long Day’s Journey into Light

I was in a McDonald’s drive thru yesterday afternoon,  wanting to buy a diet coke.  When it was finally time for me to place my order,  I was told that they were sorry but they were out of Coke and Diet Coke and Sprite.  Through clenched teeth I barked out “Forget it!” and drove off angrily.  It was the last thing I needed in the midst of a busy day- that kind of frustration.

Less than an hour later,  I was sitting with my friend Playford, who has been struggling with the ravages of ALS for over three years now.  I am too ashamed to admit to you how long it had been since my last visit;  let’s just say it had been much too long – and Playford’s visible decline since my last visit was all the evidence required of that.   He and his wife continue to be extraordinarily courageous in the face of this brutal disease,  and I can only marvel at their strength and their courage.

One of the most difficult things about ALS is that it throws up higher and higher barriers between the person suffering from it and one of the most fundamental things we humans need and want to do:  communicate.  It begins by compromising one’s ability to speak,  making it increasingly difficult for the person to make themselves understood – and making the once simple act of speaking a word a backbreaking effort and ordeal.   Once the person’s ability to speak is gone,  there is an amazing tool available which allows them to manipulate an on-screen keyboard by selecting letters via a light-activated “mouse” attached to the person’s head.  But over time,  this tool becomes harder and harder for the person to manipulate as they slowly lose control over the movement of their head.  The sentences become shorter and simpler until they are single words only-  and eventually even that becomes impossible.

One of the last things remaining is the ability to lift each leg a little bit – and this becomes the last means of communication.  In Playford’s case,  lifting his left leg means Yes and lifting his right leg means No.   This allows him to answer Y/N questions such as “is the sun in your eyes?” or “do you need suction?”  or “do you need me to leave?”  But it also means Playford can say much more than a simple Yes or No.   They have a sheet with a letters of the alphabet on it, plus numbers 1 through 10,  laid out in numbered rows, sort of like this:

  1. 1) A B C D E F

  1. 2) G H I J K L

  1. 3) M N O P Q R

  1. 4) S T U V W

  1. 5) X Y Z  1 2 3

  1. 6) 4 5 6 7 8 9 10

So this is how Playford would convey one single simple word,  with the help of a patient partner like his wife or his aide or a visitor:

“One?”    (meaning “row one?”)

pause

“Two?”

his left leg raises a tiny bit.

“G?”

pause

“H?”

his left leg raises a tiny bit.

“One?”

his left leg raises a tiny bit.

“A?”

pause

“E?”

his left leg raises a tiny bit.

“One?”

his left leg raises a tiny bit.

“A?”

his left leg raises a tiny bit.

“Is it ‘head’?”

his left leg raises a tiny bit.

“Head” is just about the simplest word he could possibly convey, because of where the letters fall in this makeshift keyboard -(he said it because he needed his head raised and no longer is able to do that himself)   and yet there really is no such thing as a simple word when this is what it takes to convey it.

As I sat with Playford,  and especially at one point when I took over as his word partner,  I realized that the frustration I felt in the McDonald’s drive-thru was nothing more than the raving of a spoiled brat,  and that to sit with someone who has had so much taken away from him is to realize how amazingly blessed we all are – and yet so incredibly oblivious to our blessedness.

And what is even more remarkable to contemplate is that even Playford is blessed,  although at a glance his life would seem to be nothing but an awful curse.   He is blessed because he is loved.   And at the end of this long and increasingly painful journey,  he is still loved, maybe more than ever,  In fact, as the sheer awfulness of ALS continues to do its destructive damage and Playford becomes still more helpless,  there is little he can do except to give himself over to the tender care of those who love him. I can only imagine what love feels like in such a time and place.