Part of me is not at all surprised to learn this - I think it has been becoming clearer to us that Alex is certainly not improving, and is not holding steady in any way that we can imagine, It's always hard, though, because we are just one family, and we don't know how this disease "typically" looks or acts - so even though it would be bordering on pure superstition, I think we were all holding out hope that is was doing him some small amount of good. Knowing that's not true is a bit like getting sucker-punched yet again.
So tomorrow morning, bright and early, the hospice team from a local hospital will be coming out to assess and evaluate Alex. The sad facts are that he has lost 20 pounds in the last three months, that it is becoming increasingly difficult for him to express himself, that he is losing more and more control of his body, and that he is more uncertain every day of the physical world around him and his ability to manage in it.
I think this officially means that we are not "fighting" this disease any more. In fact, we never really were I guess. It's complicated - looking back on all the little victories and tragedies that have made up this journey, it is time for all of us who have cared for Alex to take some credit that we helped make some of the good stuff happen - and to give an IMMENSE amount of credit to the man himself for holding himself together so brilliantly for such a long time.
If you ever wondered why your school teachers made you memorize poetry and recite it - well, Alex is why. Because even at this advanced stage of the disease, he can recite stanzas from poems he learned when he was a child, and when he does, he connects to the words and himself and is happy.
And if you have ever wondered whether it is a good idea to stay physically fit, well Alex is why for that too. Because even now, even today, he went for a bike ride with his best friend, Craig. Yes, it's changed - it's a tandem bike now, not the custom racing bike that he charged away on when I first met him. But it is something he truly enjoys, and I think that for some part of the time when he's on that bike, he feels a sense of the freedom he used to feel.
And if you ever wanted to know why you should care about music or art, then understand how much pleasure he still takes in singing with his friends at MacPhail or listening to music that he used to love. Is it the same spontaneous and rich pleasure he used to take in it? Obviously not - but it still provides a measure of meaning for a man whose brain has trouble connecting to other things.
The power of the music taps into some essential part of his identity, and he is able to express expressing himself, And when he draws us pictures, he is finding a way to "talk" to us and himself that words can't quite do for him anymore. (And really, we are all naked under our clothes - I think he is just observing that for us).
He is still very much alive and trying to "break through" in whatever way he can manage to us. So- now our thoughts turn to making the time he has left on this planet as good as possible. I have no idea what the next set of challenges will look like, or how they will feel. And I would be lying if I said I was not afraid. I am. We all are.
So - I am sad the drug didn't work, but glad that Alex no longer has to worry about being a Smurf. For all of the thinking and planning we have done, I have no idea how we will actually navigate through the difficult days that lie ahead for us.