NAMING CONVENTIONS

When I decided to start this blog - my third! - I had to select an appropriate name for it. I decided on the one you see above, but several others were under consideration:

ALS well that ends well - Well, there’s only one way this ends – and it ain’t too good.

The Gehrig Chronicles - Lou Gehrig is the name Americans most often associate with ALS. But these are my chronicles, not his.

The Lame Duck Diaries - The term “lame duck“ refers to someone who is still in office but whose successor has already been selected. You’re still around, but you can’t accomplish much.

Writing a blog in these days of Facebook‘s ascendancy seems like a futile and stupid gesture. Nevertheless, I think there’s value in blogging. I have written on various electronic pages for fourteen years now, and I have my own opinions and motivations for doing so, not least of which are self-aggrandizement and time-wastage. But unlike people’s Facebook pages, blogs must seek their own audience. And I think there will be an audience for this one.

I’m writing this because I am one of the tiny percentage of humans who has ALS: amyotrophic lateral sclerosis.

Many people in the US know this disease by its other name, Lou Gehrig’s disease. Gehrig was a famous baseball player - the legendary Iron Horse of the New York Yankees - who resigned in 1939 after having been diagnosed with the mysterious ailment that had caused his formidable batting average to melt away. His farewell speech was a model of humility and strength, a tearjerker unto this day.

ALS got a lot of attention four years ago when people started posting videos of themselves on the Internet getting buckets of ice water dumped on their heads, with the objective of raising money for medical research. Lou would probably have chuckled over those shenanigans.

Here’s what you need to know about ALS: It is incurable, and it is inevitably fatal. The only question is how long it takes to kill you.

Once in a while you’ll hear about an outlier: someone on the far side of the survival curve. Stephen Hawking was one such person, having lived over 40 years after being diagnosed. His was an unusual case, and he put up with a lot of quality-of-life impairment to get there. As for myself, I’m not going to be walking the planet 40 years from now. Of course, that’s no big surprise, given that I am 65 today.

Ten years? Maybe. I’ve spoken with a guy who’s been around that long. But that’s also pretty far out on the curve. It’s much more likely that I will be shuffling off our mortal coil sometime between two and five years from now. I’m not happy with those odds, but facts is facts.

There’s a lot of exciting medical research going on right now, much of it involving stem cells. Some of the studies even indicate that the progress of the disease can be reversed. This is awfully good news, but probably not for me. The likelihood of a working stem cell therapy being available to me in time is not a proposition that any betting man would take.

I’ve often said that we buy a lottery ticket every day when we get out of bed. In fact, we buy a whole bunch of them, and there’s a way higher chance of us getting a winner than if we buy one of those Mega Millions jackpot ducats. I’m talking about the “Getting Hit by a Bus” lottery. Or the “Kidney Cancer” lottery. And I, friends, have won the fucking jackpot.

I’m planning to write here until I no longer am able to do so... and I hope that’s a long time. But my mad typing skillz, always questionable at best, are now being challenged in all kinds of new ways. So, as Timothy Treadwell famously said, bear with me. Because this is my last and most personal story.

17 comments:

  1. Such heartbreaking news so beautifully told. I will certainly subscribe to your news letter.

    ReplyDelete
  2. I'm sorry to get this news, but I'll be reading you faithfully as always.

    ReplyDelete
    Replies
    1. Kevin, you've been there for all the rough times. My thanks.

      Delete
  3. You and your entire family are in my prayers

    ReplyDelete
  4. You are the wordsmith of wordsmiths.

    I can only parrot the words of the great Houston football coach Bum Phillips:

    You might not be in a class by yourself, but it don't take long to call the roll.

    I shall stay tuned in!

    ReplyDelete
  5. Thank you for writing this, Steve.
    A friend of mine died from ALS. He was incredibly inspiring. Here are 2 articles about his decisions about end of life.
    https://www.npr.org/sections/health-shots/2016/12/26/499494248/a-dying-man-s-wish-to-donate-his-organs-gets-complicated?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=2054?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=2054

    https://www.wsj.com/articles/when-the-seriously-ill-want-to-donate-organs-1466993221

    ReplyDelete
  6. Well shit. What can I say? God bless you.

    ReplyDelete
  7. Dad, I mean the only thing I can say is - I can't believe (and LOVE) that you "quoted" Timothy Treadwell. Well done.

    ReplyDelete
    Replies
    1. I am between worlds (blogging and facebook), given I dumped FB this past sumner. Just found this blog today, and like everyone else, saddened and concerned with this development. Will show support and read your blog regularly and hold space for you.

      Delete
  8. Okay, so I really should have read these posts in the correct order. I got the news. Just a couple of minutes behind the rest of the crowd (typical, for me).

    I'm not going to bore you with sympathy or scare you with sh*t I've read that probably isn;t applicable to your case (nor helpful to your state of mind). If you are like me, you have already created the worst-case-scenario ® in your head as a defense mechanism... after all, any outcome better than the worst case is a reprieve, of sorts. Right?

    I just have one thing to tell you. The essential 'you' is your mind, and that will be sharp right until the end. And your mind will be frustrated for contact, not just because of your own physical limitations as they progress.... but because there will be a lot of your day when your mind will be in overdrive while your local friends and family are asleep.

    I want you to know that by farcebook, whatsapp, email or phone, or whatever other method you prefer, you have someone over here on the other side of the planet who will usually be awake when the rest of your familiar world is asleep.

    I'm here for you, buddy. You need never be alone.

    ReplyDelete
  9. I am praying for you Simcha Reuven ben Chaya Reeva.


    ReplyDelete
  10. I hope and pray the experimental procedures will work well for you. We are praying for you.

    ReplyDelete
  11. This blog is incredible, Steve. Thank you. We're here with you on this.

    ReplyDelete
  12. So...I dusted off the old handle to lend support. The blogosphere still feels more intimate than Facebook, and maybe that’s why I’ve been scrolling obliviously, just now realizing. Anytime I see those three letters together my gut wrenches, and my eyes sting. That nastiness has stolen from many of us, and I am testament that eight years isn’t long enough to heal. I pray you’re the outlier. And listen, stem cells are no joke. My uncle - who shares the same connective tissue disease I have - was just injected at the knees, and he’s walking again. Stay the course. It’s been forever since I’ve seen the two of you, but I never forget the friends who are real people, salt of the earth. Much love to both of you. ❤️

    ReplyDelete
  13. My dear cousin,

    I hope these are helpful to you. One is text, one is music.

    Love,
    Debi

    https://plumvillage.org/sutra/discourse-on-the-teachings-to-be-given-to-the-sick/

    India.Arie - I Am Light (Lyric Video) - YouTube
    https://www.youtube.com/watch?v=ism8dBjxKvc

    ReplyDelete
  14. Steve, reading your blog has brought back memories of my daughter's 7 year fight against leukemia (relapsed twice) - all during that time, no matter what was going on - good news or bad, she found comfort in three quotes she found on the internet - I hope that they can be of comfort to you: "When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile", “Life isn't about waiting for the storm to pass...It's about learning to dance in the rain.” and one that our team LEX wears every year for the past 7 years at a cancer fundraiser road hockey tournament which we take part in her memory, "You never know how strong you are until being strong is the only choice you have" to which many others at the event stop us to read what is written on the front of our jerseys.

    ReplyDelete

We welcome your comments. Comments are subject to moderation and any that are deemed inappropriate in the sole discretion of the author will be deleted.

NAMING CONVENTIONS

When I decided to start this blog - my third! - I had to select an appropriate name for it. I decided on the one you see above, but several...

Popular Posts