It’s hard to imagine that Dee and I were looking forward to our appointment at Emory. You would think, given our nervousness at the potential of receiving bad, bad news, that we would've been dreading our visit there. But we weren’t. Perversely enough, we were almost eager.

The fact is, having the Damocles’ sword of uncertainty hanging over us was beginning to wear. It is nerve-wracking to know without question that something is seriously wrong, while at the same time to be unable to put a name on it... and to chart a forward course. Could whatever this thing was be fixed somehow?

We had, by now, pretty much completed our move into our new house in Woodstock, just seven miles up the road from our old neighborhood. We had also taken a ten-day road trip to visit our daughters in the Northeast. The driving was lengthy but manageable, and the only real difficulty I had was with walking any distance over a half-mile. Center City Philadelphia would have been completely unmanageable had it not been for the ease of getting Uber rides.

At last came June 19, the day of our appointment at Emory, a day both eagerly awaited and dreaded in equal measure. We arrived; we signed in; we were ushered into an examination room, and - following the collection of a few vital statistics, I enrobed myself in a gown and waited for the Neuro-Sawbones to show himself.

Show himself he did, and after a clinical examination that seemed to be both lightning-fast and to take forever, he looked up at me and said, “Well, there’s no point dragging this out - you have ALS.”

“Well, this sucks,” was my first thought as adrenaline squirted into my bloodstream. For it is one thing to suspect that there is something Very, Very Wrong with you, and quite another to have it confirmed.

Of course, my first verbal response was to make a semi-serious jape.

And then I looked at Dee, whose eyes had flooded with tears... the tears that should have been in my eyes but were not. For months I had told her not to worry, that there were other, much more likely answers than the Worst Possible Thing. And, as so often had happened through the course of our long years together, I was wrong and she was right. I held her in my arms, as much to comfort myself as to comfort her. Yet I was more concerned for her than for me. She had dealt with so many crushing events in her life, and here I was, adding to the pile.

Then came the process of being sucked into the System. Blood samples from both of us: why had I gotten ALS while Donna had not? Questions about family, about lifestyle. I was now officially a pALS - a Patient with Amyotrophic Lateral Sclerosis. Would I consider enrolling in this or that clinical study? Well, why the hell not? Thick folders full of information about support organizations, about what to expect over the road ahead, were thrust into my hands.

And now I have a better picture of my future than most of us.

Like all of us, I still buy my lottery tickets every morning. The Getting Hit by a Bus lottery. The Heart Attack lottery. But my odds have shifted ominously. For me, the overwhelming likelihood is that, sometime in the next two to five years, the creeping paralysis that already has made itself known to me in so many insidious ways will stop my breathing. And then, I must rely on your memories to keep me alive.

And I no longer buy green bananas.


  1. You will, of course, have read Tuesdays with Morrie. I'd visit you every Tuesday if I could, but I'm here and you're there. Sigh.

    1. Of course I've read Tuesdays with Morrie – I've even made fun of it!


  2. I am so sorry this is happening to you. No doubt you've already been through all the tests, but just in case...have you been tested for lyme disease? It can lie dormant and later present with symptoms of many neurological disorders, similar to ALS. It often goes un-diagnosed or misdiagnosed. You probably know all that, but I thought I should mention it.

    A friend of mine was diagnosed with MS and was in a wheelchair by the time another doctor determined it was Lyme. Thankfully, he is totally fine now.

    I also have a progressive nerve disease (extreme neuropathy), although at this point (going on 10 years) nobody can tell me why in spite of having every test. So I feel your pain...quite literally.

    Sending prayers and all good thoughts and vibes your way and to your family. xo

    (Ps...I still owe you a check for all those boxes. It got buried on my desk, I found it, then we moved for the summer, then we had a financial disaster....I know, excuses, excuses. But it will get to you. Promise. xo)

    1. I'm well aware of the mercurial nature of late-stage Lyme disease. I have a friend who had been afflicted by it and who is rather insistent that I might be in the same situation. I am having that possibility checked out; however, it's extremely unlikely.

      Sorry you have to deal with extreme neuropathy. Neurological diseases suck big time. I don't have to tell you this.

      And don't worry about the check. I did figure out what those little dishes are for – at least I have a reasonable guess. I think they're for grape seeds and/or cherry pits!

  3. It is ALWAYS better to know once you start asking. And as for your memory, it will live on with me, my kids, and most likely their kids. Not to mention the glorious blood tie that is coming in November... and these stories... what amazing ripples you will continue to travel.


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