"If I Die I Have no Control": Jay Smith on ALS

This may seem like a title that is overly obvious: of course when we die we lose control. However there are things we have a say over, as in what we leave behind and who gets to share in it. In addition, Jay Smith is referred to here as not only someone who is an expert on ALS, but as a person very much absorbed by its presence in him. In other words the disease has taken over many parts of his life, but not all. In some way he feels free.

Jay has become well known in and out of the ALS community for his presence on Facebook, as Every90Minute. The name was used to relate the fact that every 90 minutes someone is diagnosed with ALS and every 90 minutes someone dies of the disease. There is the fact that ALS, also known as Lou Gehrig's Disease (after the late baseball player), attacks the neuromuscular system at the same time that it often leaves brain functioning very much in tact.

In fact Jay has risen to this occasion in his life by getting and giving support, raising funds for the cure of this disease, and lobbied to gain access to more experimental treatments without waiting undue time, since there is really no downside to using new medications when the alternative is dying. And a propos of dying, one of Jay's major activities has been to write, in part to educate people about ALS, and in part "to have something for my kids in writing in case I die". Jay is an avid communicator, sometimes using a machine that depends on eye movements to type.

The key focus of our meeting via Skype a couple of days ago, was Jay's recent experience with one of his Facebook post's having been taken down on February 29, 2016, a few hours after it had been posted and gotten over 50,000 views. The post is something whose contents Jay shared with me, and I would like to share them with you. It is crucial for us to consider whether the taking down of the post is an unjust and dangerous form of censorship, in particular for a person whose key form of freedom is his right to write. And while it is true he could host his own web site or go for the writing of a book (of which I'm a big fan), he had chosen Facebook for its community aspect, for the sharing.

Before the post itself, let me add that Jay has taught me that he is not alone in the patient groups of patients with ALS, in that his brain is better than fine and his wit is often present. In fact I told him that he is almost disturbing in the way his spirit doesn't invite, and practically refuses compassion, let alone feeling sorry or sad. I said he evoked in me the feeling of being a missionary coming to gift another person or culture with my "riches" and supplies, only to find they (in this case he) has more riches than I could ever know. He told me how much he gets from new friends and colleagues, sharing in the disease and other riches that are real and vital.

Jay did, however, keep coming back to the Facebook dilemma, saying that writing is a great equalizer, that one can be "a brain" online without having to prove any physical competence. He definitely feels hurt, hurt and worried that any and all of his posts could be taken down at any point, with no explanation. He has not asked Facebook directly about the terms of their decision, and does not know who reported him or what for.

Take a look and see what you think. Yes he is fresh, impertinent even. And yet he (and the rest of the family) is allowing his daughter the freedom, which seems to be building the intimacy which only authentic honesty can ensure. Yes, it's revealing, allowing the sexuality of a young girl to be expressed, albeit in ways that to me are innocent, and important. There is an important question here: How much freedom do we need to take and to give in order to function with dignity and respect for--not only the freedom to speak--but freedom of speech as at times the key lifeline for those trapped in other ways.

Here goes the posting: "Meet Peyton. She is the most awesomely strange person I have ever known. Her favorite book is "Shark Attacks" and she marks her favorite pages with dollar bills. Her favorite thing is to moon, she does it a lot. She also wants to have big boobies when she grows up, she has been telling us since she was two. Now she has been dealing with my disease since she was three. She isn't scared and she sees it as an opportunity. Often at night I'll be sitting on the couch, my wife is upstairs putting the kids to bed and if she is the last one to go up, she will give me a devilish smile and do one of the following. Tickle my feet and say "You can't stop me", knowing how insanely ticklish I am. Ask me questions like "Do you want me to stick your head in the toilet?", while moving my head to nod yes. Stick her butt in my face, and say "there's nothing you can do about it", laughing through each word. She doesn't like to talk about my disease much but she's acutely aware of the outcome. The other day she came home with something she made in her Kindergarten art class where she decorated the art with the words, 'ALS is a pees of shit'. Pees of shit indeed."

Jay added, "If I die and they delete my posts, it's like they're deleting me."

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