I spent a couple of hours this afternoon with my friend Playford Thorson, who is contending with the ravages of ALS- Lou Gehrig’s Disease. He was diagnosed in the summer of 2005 and things have moved with brutal rapidity over the last 24 months. Playford has now pretty much lost all physical function- he cannot talk, swallow food, or even scratch his nose = a complete prisoner in his wasted body – but amazingly, Playford’s mind is as acute as ever. He is interested in the world- in the lives of others- still finds things to smile about – and still appreciates life’s blessings, even if those blessings are embedded in a tragic, cruel disease. Playford and his wife Kathy are incredibly courageous and each and every time I visit, I am inspired anew.
There was a period when visiting Playford was scary because it was becoming so terribly difficult to understand his speech – and he would try so hard to make himself understood and you would want so desperately to understand him the first time so he wouldn’t have to struggle through a second attempt. I was pretty good at understanding him but I experienced that same anxiety plenty of times. Now with Playford’s speech completely gone, he relies entirely on his computer for communication – and oddly enough this is easier – and I hope it’s ultimately a little less frustrating and exhausting for him.
So here’s how it works- There is an eye just above his computer screen – and it reads a small dot which is affixed to his glasses, creating a cursor that works like a mouse. Playford tilts his head to line up the cursor with whatever letter he wants- and when it remains there for a couple of seconds, it types it. And at some point, once a letter or two has been typed, you see possible full words appear in the middle of the screen, which can be chosen to cut corners. (It works like a lot of word processing programs.) There’s of course a backspace key, a space bar, etc. – and when the message is done, Playford can rest the cursor on the body of the message for a couple of seconds and the computer will say the message aloud. It can be used for conversations- and also Playford can spend time on his own writing things at greater length and then saving them in files to be retrieved later. For instance, Playford has a file with instructions for how to play DVDs in their living room. (This has come in handy a couple of times when I’ve come over to visit and his wife has been gone.) Rather than having to type out those instructions from scratch every time an electronics moron like yours truly is visiting, Playford can pull up this file on command.
To converse with Playford via the computer is an interesting exercise, requiring patience and sensitivity . . . and it really helps if one doesn’t barrel into the conversation at the breakneck speed to which most of us are accustomed. I find myself being much more succinct- unafraid of silences- increasingly comfortable with waiting for Playford’s replies. There is actually something quite calming about such interchanges, once you’re accustomed to them. And Playford is still the bright, fascinating, wonderful guy he has always been.
This is an amazing machine – but it’s far from perfect – and during our three hour visit this afternoon, we had to do one soft restart and two hard restarts when it would freeze up. The first time this occurred (on a previous visit) I was so shaken by the fact that something had gone wrong with the computer and Playford was of course incapable of letting me know. . . incapable, that is, until he explained his code: when he rests the cursor on the letter “h” that means that a restart is necessary. (It probably doesn’t hurt that Playford’s job for the last decade or more has been in A.V. – which makes him quite adept at operating complicated equipment and in figuring out ways to deal with problems.) Typically it will work fine after a restart, which is of course a huge relief.
But there is a painful silence in the room when the computer is rebooting, and one can only wonder how anxious Playford must be as he waits for this device to resume normal function.
As badly as I feel for Playford and his family, at least he is living with this in an era when modern technology makes communication possible. Think of the even more tragic plight of the first sufferers of this disease, who would find themselves with absolutely no means for communicating at all, once ALS had robbed them of their voice. I find myself haunted by such a thought- and profoundly grateful that Playford, for all his suffering, is at least spared that.
To be with Playford and Kathy is to see life and love reduced to its most basic essence – and one leaves with a profound sense of gratitude for blessings we are so apt to take for granted. Tonight, I am sitting across the room from my wife Kathy. I’ve just said to her “I love you.” And I find myself not only thankful for her and for our love for each other, but also thankful for the ability to say those words with my own voice. But whether spoken with one’s own voice or via some amazing computer mechanism, it is the same precious gift of words – the gift of being able to share one’s self with another. . . the gift of being understood.