My own story of ALS and how this site came to be

December 27th, 2010 by Al Lewis (alewis)

As this blog has morphed, at least for now, from a creative idea-generation site into a grassroots ALS fundraising site to create what will hopefully be — with the Yankees’ cooperation –  a very potent and sustainable course of ALS funding, I  have been very moved by the stories, comments, and photos.  (I am sure others have felt the same way.)   It occurred to me that I have yet to post my own story in detail, and some of you asked me to do that after seeing my wedding photo.

Janet and I had dated for a while, and though we had broken up, we had become more like “besties” when she started to feel that something was amiss.  I (and other close friends) took her to several doctors to try to discern what was wrong.   I know many of you experienced the same thing with your loved ones, where you had to visit multiple doctors before getting a diagnosis.   Then came the day — and no doubt you had a similar day too — when you finally get the definitive diagnosis.  The Mass General neurologist, Dr. Cros, had very thoughtfully scheduled this visit as the last one of the day, so that the four of us there could be in his office into the evening, asking questions, holding back tears, cross-examining him to make sure we hadn’t overlooked any possibility for treatment, even something in early-stage clinical trials, with mice even.

After that, we went about our lives.  Of course I continued to be supportive as best friends would be.  But I couldn’t stand to watch her deteriorate in front of me like this.     At one point her condition had declined so much that at her health club (Mt. Auburn) where she had been a member of for 20 years, someone asked what was wrong.  About a day after I told the person at the front desk, the manager wrote back and said he was going to comp her membership for the rest of her life.

It was at that point when I thought, you know, everyone else is going above-and-beyond, and I was just doing what any best friend would do, but she was getting worse by the week at this point.   Janet had never been married and, though I was sure she had wanted to marry me when we were dating, she had never said anything.    So  I got a ring and went over to her house and proposed.   Since time was of the essence, we got married by a justice of the peace a week later, with about 20 family and friends present.  (We never filed the documents with the state, as I didn’t want to receive what was rightfully her family’s inheritance.)   At this point she couldn’t even say “I do” but it was a wonderful ceremony nonetheless.   With the help of some other friends and the Mass. Steamship Authority we were even able to “honeymoon” for a weekend on Martha’s Vineyard.

Most of our 8-week “marriage” was about caregiving, as one might guess, and I need to credit her family and other friends with a huge assist.   My role was emotional support, lying next to her on the bed, her wedding gown always in plain view.    The night before Thanksgiving,  she died in my arms. (Not technically, since her heart didn’t stop beating for two more very painful days, but cognitively.)   But, as much as anyone with ALS could ever do this, she died happy.

Funny thing, some people say I did a “mitzvah” ( a word I had not previously known) and maybe I did, but when you give all of yourself like this to someone else, you become the recipient as well.   Her unconditional, dying, love was something that changed me forever.

*******

For those of you whose loved ones are still alive, here are two practical pieces of advice — that no one gave us –  for those final two days, the only ones I feel we mismanaged.  First and most importantly, your loved one will lose his/her ability to blink, and won’t be able to communicate that.  Your patient’s eyes will dry out, which has got to be very uncomfortable (try going 2 minutes without blinking!).   I don’t know the solution, only the problem that needs to be solved that the hospice nurse (the only weak link in our caregiving chain) didn’t mention.  Second, we were told by that hospice nurse to leave her alone on the bed and not offer physical contact.  (”That way Janet will know that it is OK to die.”)  We followed those instructions but they didn’t seem right.  I mean, how would anyone know?  There aren’t any controlled trials.  You can’t interview the patient afterwards.  So my advice would be to follow your instincts.     Janet’s family and I have replayed those two days altogether too many times, faulting ourselves until recently, when the passage of time has permitted more objectivity.

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27 Responses to “My own story of ALS and how this site came to be”

  1. littauergal Says:

    Much as I miss the economic policy ideas on this site, I can now certainly understand why you are so committed to your Lou Gehrig jersey idea.

  2. jenny Says:

    I don’t see how any yankee executive could read this post, read everyone’s stories on the facebook page, and NOT want to do this!

  3. Dave Rearick Says:

    Al,

    Great to have you share. Even greater to have done what you did. No matter what one’s religious beliefs, at this time of the year the message of laying down one’s life for another (whether figuratively or in reality), loving and taking care of those less fortunate, and being your “brother’s keeper” is so appropriate.

  4. harvardeconomist Says:

    i am hanging on every post and every comment to see how this turns out. as an economist i used to think all the great, easily implemented ideas had been thought of but your site showed me otherwise. I’ve learned so much from it and now this.

  5. John Hoffmire Says:

    After reading what Al has written I just have a very strong feeling that I want to be a better person. I think that this is the type of inspiration that many of us need. Thank you, Al.

  6. xyz Says:

    Agreed, John. Compelling story and proposal. Every day that goes by, I lose respect for the Yankees. I can imagine this catching on bigger than any fashion item associated with a cause (like ribbons, wristbands etc) because it’s an article of clothing, and people have to wear clothing anyway, and this shirt wasn’t just “invented” for this purpose and tacked on to a fundraising effort, but is a visceral part of the need for a cure.

  7. paula Says:

    EVERY PERSON HAS 1000 WISHES-AN ALS PATIENT HAS ONE-for it to go away and to be cured-please,please,please make this happen and NEVER-let this die-forever loved janet,forever missed-NEVER forgotten…

  8. Ron Blumenfeld Says:

    Al, I was very touched by your post. We have only met a few times, and now I feel I know you a lot better. Yes, what you did falls squarely into the “mitzvah” category, but you rightly sensed that mitzvahs are not without benefits to those who perform them.
    This idea, for example! Folks who can afford a $1200 seat at Yankee Stadium should not think too hard about droppiong $100 for a very cool Lou Gehrig uniform shirt, with the high intention to go along with it. And how could Yankee management pass this up ?
    It’s a terrific variation on disease management! Especially with the promising ALS research we’ve been reading about lately.
    Best of luck with this, Al!

  9. Jim Gutman Says:

    Al: In typical fashion for you, this is a creative, win-win way to honor your wife’s memory and do some good where it’s needed. It would help the Yankees’ image (which they certainly could use!) and put some muscle toward bringing hope for curing this horrible disease. I will support it, and I hope everybody does.

  10. Kim Byrwa-Neff Says:

    Al, I met you many years ago at a DM conference, and as a consultant for a company that I once worked for. I know you won’t remember me, but that doesn’t matter.

    I recently lost my mom to breast CA. I was with her as you were with your wife (and she was your wife-the legalities don’t really matter in real life).

    I so totally agree with your comments about following your instincts to be “with” the person you love as they pass. Do what feels right to YOU-you know the person the best, and you know what comforts them-and what will comfort you in the upcoming days and years.

    You are doing a wonderful and selfless thing to support your wife and celebrate her life. I will write the Yankees in support of your efforts. I can’t beleive they haven’t already done this type of thing in rememberance of a great player who undoubtedly has helped them enjoy enourmous financial success, but its about time they did!

    Best of luck to you and your family-peace will find its way to you.

    Sincerely,
    Kim

  11. Michael Eliastam Says:

    Al;
    Beautifully written and it moved me. You are more unique often than many of us.I will email those guys!

  12. sdavidowitz Says:

    I have a son with autism, and understand how powerful collective action is-how we each can do a little bit to move that mountain, make a difference a bit at a time, like those worker ants.

    Thank you for giving us an opportunity to participate in your innovative project, the opportunity to create mitzvot of our own. Perfect for a way to do something new in 2011, and very inspiring. I will be sending a handwritten letter to the right contact. Everyone loves and reads a handwritten mail!

    Best wishes to all your site reaches.
    Sandy Springer Davidowitz

  13. Linda Butt Says:

    Al,

    I so enjoy your writings, but this personal one helps me know you better. What a wonderful selfless cause which the Yankee organization should support 100%. I met you long ago at a DM conference in New Orleans at my first, very “shaky” and nervous presentation.
    Thanks for the good work you do and for helping us all to think outside the box.
    Linda

  14. Archelle Georgiou Says:

    Dear Al,
    I read and re-read your blog. It brought tears to my eyes. I was sad for you personally and for everyone who is faced with with terrible disease. But, I was also happy and moved that I saw the “real Al Lewis” vs the opinionated, brilliant, hard-edged businessman/DM expert I have bantered with and joked with for over 10 years.
    Your marriage to Janet was an act of unconditional love and seeing your kindness kindness in such a personal way makes me admire you even more than before. It was a wonderful reminder to me that its okay to share our soul and our heart not only with friend and family….but with colleagues.
    You are making a difference…Archelle

  15. Gail Says:

    Dear Al,
    I am so glad we reconnected. You are even more brillant than you were a decade ago, because now you have put your energies into helping others and making this a better place. Your book is an inspiration that I highlly recommend to others, and I look forward to getting to know you again on a professional and personal basis.
    Gail

  16. Lea Carey Says:

    Well Done, Al.
    Happy New Year to you!

  17. John Branch Says:

    As a physician, I have cared for patients with ALS, and recently lost a long-time patient, who had been a childhood neighbor of ours.This is a devastating diagnosis to give a person, and a tragic ordeal to observe. The “Yankee uniform auction” is a great idea, and one I wholly support.

  18. Bruce Sherman Says:

    This is a wonderfully innovative idea to support efforts to better understand this incredibly difficult disease. As a physician who has cared for patients with ALS, this is not a pretty disease. There is a compelling need to identify the cause and develop treatments for this progressively debilitating condition that deprives affected individuals of their physical abilities - and ultimately, their lives. Al certainly has demonstrated that joy can be created in the midst of the darkest of times.
    Readers, please take note - supporting this effort won’t take much of your time, and the results of your efforts have the potential to be life-changing for those afflicted by this disease.

    Bruce

  19. paula Says:

    MDA/ALS division-majorleague baseball 4 als..has alot of information…janet-forever loved,forever missed-never forgotten….

  20. Joe Burns Says:

    Al,
    Beautiful post. I didn’t know any of this about you. You have undertaken a wonderful project and I’m sure the Yanks will agree soon. (I’m sure there are members of the Yankee front office who will recognize the opportunity for them to do a mitzvah on behalf of one of their greatest players and those with ALS.) I would also think MLB would want to get involved as well. I look forward to the WBZ interview tonight.

  21. kcm Says:

    Thank you so much Al for pursuing this quest. I too, have been affected by ALS. I lost my father in 1985 to this horrible disease. Back then, there was so little awareness and so few people seemingly affected. Now here I am, 40 years old - the age my dad was diagnosed - and so little progress has been made. I was so young when he became ill and he only survived two years after his diagnosis. Looking back however, I am grateful that he was spared the conditions many today with ALS suffer: He maintained his voice, never used a walker or wheelchair, and was never on a respirator. I often wonder what my life would be like had he never suffered this illness. He was never able to see my brother, sister or I get married, graduate from college, meet his grandchildren, and live the life he deserved to live. I pray everyday that progress will be made - that my siblings and our children will never know this disease, and that those who suffer will be given hope. So again, thank you for pursuing this goal - I will do everything I can to spread the word and help raise awareness. As a lifelong Yankee fan, I have to believe that they will grant this wish and help put us a path of success for research, treatments, and ultimately, a cure. My heart goes out to all the families who have experienced this condition, as well as those suffering now. Let’s be the change we want to see in this fight!!

  22. Kathy Says:

    I had a coworker who was vibrant and always on the go. Once he was diagnosed with ALS, the decline was swift and dramatic. I would gladly purchase a jersey and I am not a Yankee fan. This is a creative idea; a definite win-win.

  23. Tom Joyer Says:

    Thanks Al! Appreciate all you’re doing on this front.

    All the best for 2011.

    tj

  24. Joe Burns Says:

    Would the Red Sox and Curt Schilling be interested in this endeavor and perhaps all of baseball? Schilling wore number 38 to honor Gehrig and he and his wife Shonda are in the ALS Hall of Fame. Plus, Schilling famously wore the initials “K-ALS” (strike out ALS in baseball shorthand) on his cleat when he pitched against the Yanks in the 2004 ALCS, game 6 in NY. The so-called bloody sock game is one of the most famous n Sox history. Curt knew the cameras would focus on his ankle because the team doctor had to do a last-minute repair to keep a tendon in place so he could pitch that night. If the Sox, Schilling, and the Yanks commit, perhaps all 30 teams would join in. The complicating factor would involve current players who wear the number but I don’t think the Sox have anyone wearing 38 now.

  25. alewis Says:

    Yes, the Sox could do a jersey too, but even having Schilling socks to go with the Gehrig jersey would be a great idea because it would involve more than one team.

  26. Geoff Says:

    Al,
    We spent last week with four couples as we usually do to celebrate the new year and our decades long friendship. I hope each of us will be as good a friend as you when it comes time to say goodbye.

    We lost a friend to ALS years ago and shared these words by Whitman to all who gathered to say farewell.

    Now finale to the shore,
    Now land and life finale and farewell,
    Now Voyager depart, (much, much for thee is yet in store,)
    Often enough hast thou adventur’d o’er the seas,
    Cautiously cruising, studying the charts,
    Duly again to port and hawser’s tie returning;
    But now obey thy cherish’d secret wish,
    Embrace thy friends, leave all in order,
    To port and hawser’s tie no more returning,
    Depart upon thy endless cruise old Sailor.

    The untold want by life and land ne’er granted,
    Now voyager sail thou forth to seek and find.

  27. diane sampson Says:

    Al,

    This is an amazing idea matched by your tenaciousness and nerve. Glad for the opportunity to “like” this work!

    diane

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