Okay, I lied. I do think Jay Smith is amazing but I am beginning to re-define "amazing" and can see how it might be misused.
Jay Smith has ALS and I don't. I had breast cancer and he didn't. I'm about thirty years older than him but again, he has ALS and I don't. He just published a blog in Huff Post called "My Life as a Snowman"
And I have to say it floored me.
Let me cut to the chase. In his avid, perhaps obsessive love of Christmas music, he happened upon a moment of multi-tasking, made more common by the ALS, in which he penetrated the story of Frosty and how it is pertinent for him. But wait; he didn't stop there. He went on to say how pertinent it is for all of us.
I had misinterpreted the story of Frosty, an old favorite with my kids. I saw that there he was, ready to play but he would melt and wouldn't be able to stay till spring. And/but he would come back next year and play. That is completely wrong, I see now. He is leaving and another Frosty will be back but not him. He, this Frosty in the story, will die.
Jay is a popular guy. He has made friends and deep connections through his ALS, through his work on his cause, Every90 Minutes, and through his blogs and multiple Facebook postings. We met through his Dad and he allowed me to interview him, though I came up against one discomfort, one that I knew of. I always wanted to tell him he was and is "amazing". Which I think he is, because of his aliveness and his presence with his daughters and wife and parents and everything, even dressing up for Christmas.
He has made no bones about it. He hates when people tell him he is amazing. And he hates it when other people feel sorry for him. And it took me till yesterday, till after reading his treatise on Frosty to realize what Frosty had to do with the amazing factor.
Jay is amazing in a misguided sense, because I, and many people, have felt bad for him. We don't think we would do as well in his position, if we had ALS. But there is another thing and it's pretty big. Jay Smith has the audacity to see himself as alive in the human race where all of us are both living and dying. I, who can tend in my insides to feel competitive, can play this game well--that of "I'm kind of old, but thank Goodness I'm not as old as that person". Oh how terrible for that person, who has such and such circumstances, how lucky am I.
And Jay has the audacity to put us all together in the Frosty perspective. He sees how he is fortunate to be living and cherishing his life, and his daughters who seem to live so fully all aspects of even the ALS, down to teasing him about getting him to respond in certain ways against his will, let's say. It's irreverent, it's not terribly tragic and it's full of life.
Jay knows we are all Frosty, a version of him. And he also knows that many people, even while the sun has not yet begun to melt them, skip over their key relationships and put their emphasis on anger and hating or buying and buying without stop.
I read about Jay's vision of Frosty with mixed feelings. I realize that he is way ahead of me in this arena, because for all kinds of emotional baggage I have seen death as a punishment and not as a normal matter of course. Maybe, then, another reason for my having thought of Jay as amazing, has been more simply his lack of fear in the present when it comes to death, something I have not yet become at home with.
It's not that this man hasn't suffered or doesn't tear up. It's that he sees the worst and feels also the best. So in that way he is still kind of amazing; let's say also because he is bright and impish and funny and even inventive as well. He doesn't deserve my sorrow, and certainly not my pity, because he is living all of his days with verve and realness. The sorrow, well it's kind of normal in the face of any brutal disease or circumstance, for which there is not enough research and knowledge, and which afflicts many young people.
So let's agree. Jay is amazing and he isn't amazing. He has what to give me as much as I him. And his vision of Frosty is something of a gift for me to struggle with. We are all Frosty in some manner of speaking, and if not Frosty, a snowman or even a snowwoman. Either way, we are all temporary.
I've begun to have the sense that in growing older, there is the opportunity to become newer; one doesn't, in other words, have to inhabit one's skin and life in any prescribed or proscribed way. So, perhaps here there is agreement with Jay, that it may be a matter of living one's living. And in that living, all kinds of new things can happen.
It's kind of amazing, as in part of wonder, and even startling as can be a big and kind of new realization.
So Jay, amazing and not, thank you. And, Merry Christmas,
From someone beginning to embrace deeper learning about her snowperson-ness.