My Own Story of ALS


I would like to introduce our newest regular contributor, Al Lewis. Some of you might recall him from his guest-postings, sometimes offensive, usually controversial but always based on both fifth-grade arithmetic and principles of economics, two subjects that he respectively took in fifth grade and taught for two years at Harvard.

Al is asking for a tiny bit of help from us, which is to go to his ALS site and “like” it and maybe add a facebook comment.   He is trying to get CMG Marketing (the official licensing contractor for Major League Baseball) to sell Lou Gehrig jerseys to raise money and awareness for ALS.  Increasing the popularity of that site increases the likelihood of his getting CMG’s attention with his fundraising idea. –  Matthew Holt

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.

Al Lewis, JD, is founder and President of the Disease Management Purchasing Consortium International, Inc., the leading consultant/procurement broker in the field of disease management. He has written for a number of publications including Emplyee Benefit News, Journal of Healthcare Quality, Disease Management Journal, and Healthcare Innovations. His blog, WhyTheHeck, is a platform for ideas and solutions that address society's problems. An award of $1-million will be given for the first solution implemented as policy. Anyone may participate.

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