THE BLOG
01/21/2015 11:42 am ET Updated Mar 23, 2015

Dying of ALS or Not

ALS, also known as Lou Gehrig's disease, is gaining in some media attention, thanks to the current award-winning film about scientist Stephen Hawking, The Theory of Everything. In addition the film Still Alice starting Julianne Moore which deals with early onset Alzheimer's, has a back story in which one of the two directors was diagnosed with ALS, something poignant in and of itself, and something which had an impact on the film's direction as well.

Jay Smith, however, is not a movie star, though in some ways he could be. He is 38, charming, has a twinkle and definitely has the presence of someone who can be both direct and sensitive. He was diagnosed with ALS last March, which means that he might have about 18 months from then to live. ALS has been, a death sentence, cutting down -- primarily -- people in their prime, people who, according to Jay, tend to be athletic or type A personalities in general.

It's a disease that is underfunded, that seems to be not incurable but again, underfunded. Why, is not exactly clear, although Jay, husband, father of two young girls and still CEO of the music company he founded in Austin Texas, Livid Instruments (as he confides, with that twinkle, "I'm the owner, they can't exactly fire me"), is willing to add that it is an "ugly disease". It compromises a person's muscle control, without compromising his/her mental capacities. Jay notes that to be writing with fellow ALS people, he can feel he is on an intellectual fest with very sharp people, but to hear them speak, it can seem there is prominent brain damage and disability.

I know Jay only by hearing about him over the years from a colleague who happens to be his father. But after expressing my sorrow on hearing about his diagnosis, I visited his website, every90minutes.org, and I wanted to know him better. The site has that name because every 90 minutes someone new is diagnosed with ALS and every 90 minutes someone dies of it. It's informative but it inspires as well; I read there about Jay's passion and his awareness about treatment and hope for progress which is potentially imminent, if the FDA approves treatments like GM6, without prolonging experimentation (remember this is usually a 100 percent fatal disease and there is little to be lost), and red tape.

Okay, to basics which seem perhaps confusing still: ALS stands for Amyotrophic Lateral Sclerosis, including atrophy and paralysis of muscles. It is a degenerative disease affecting nerve cells in the brain and the spinal chord. It means that although Jay can type and think clearly, the muscles in his mouth aren't working the same as before; they are sluggish and there is nothing he can do about it. His ability to hold a coffee cup is now fragile, as he shows me the difficulty with the movement on a Skype conversation. I am impressed, I am actually relieved as well, because in the conversation I can move with some of the garbled words, all the better because for the most part I can understand everything. And of course I am impressed by his spirit, his intention to beat this thing, his being informed, invested and involved on human levels with the ALS community and people in general. And people in particular, in that his speaking about his daughters brings him to tears. His eldest balked at his getting a handicapped sticker, telling him there is nothing wrong with him. She knows he has ALS but he is her daddy, he is teaching her to ski, he is present, and thus he is really okay.

Even though Jay is okay in many ways, he knows he will die if he is denied experimental treatments. He says he is not depressed, and again I am both moved and impressed. But being impressed can be a distraction from humanizing this condition. Because he can love and communicate and care doesn't mean this is an inspirational tele-drama, certainly not yet.

Listen up: ALS only goes after people that are active -- such as people in sports fields. Football players are four times as likely to be stricken as the norm; soccer players five times, and people in the military three times. He says the thought is that there is extra inflammation from extreme activity. Within the spectrum of type A, he jokes that a therapist he has known had been trying to convince him that his needing to always win was a bad thing, but is reconsidering based on Jay's passion to both beat ALS for himself but also for others.

It's hard for us to share, share concerns about aging, climate, terror, peace efforts, illnesses and which illnesses to care about or worry about. My fantasy is that we be more interdependent so we aren't at war also about which disease gets our attention or our funding. Compassion fatigue can occur, as can any fatigue when we have too many things on our minds. Then it's called cooperation, rather than the competitiveness we often see with illnesses vying, with celebrities on board, to get the most, as if there is not enough to go around. My take is that there is. Most of has the time to go onto Every90minutes.org and sign a letter to the FDA about GM6, most of us.

Then, as I've seen it, we tend to the personal, as in one picture or one story speaks a thousand words. Jay's daughter answered a question in her class, is her daddy going to die? She said, "No, because we're working hard to find a cure." She's a kid. It's sweet, but it is also that, a picture of one little girl wanting her daddy to be around. It's not quaint, really, but it is a call for us to remember what we share, with just about everyone.