Who determines what a meaningful life is?
I wouldn’t trade my existence with anybody else. I have had a terminal disease for nearly ten years and have continued to lead a life with the motto of Living Large. It’s never too late to have a second childhood!
I have had a very busy year and will try to tell you a little bit about the highs and, alas, the low.
As always, I feel the insidious creep of the ALS disease. I can do virtually nothing by myself; I rely on an incredible, diverse group of caregivers, every one of them a gem of expertise and kindness. The Garber Seaside Infirmary and Spa is often a beehive full of family, friends,neighbors and community.
At the end of August, I arranged for a group of good friends to go with me to Fenway Park for aBilly Joel concert. There’s little question that the trip qualified for the Guinness Book of Records for logistical headaches, but it was well worth it. We had unimpeded views of Billy Joel and his band rocking Fenway. The thrill of live music at Fenway was priceless. I can’t dance — never could really:-), but I can revel in the music and the joy of the scene.
After being housebound for much of the winter and suffering through the loss of power during three of those horrendous March storms, I decided somewhat impulsively to go to New Orleans to Jazz Fest. Of course, with ALS, nothing is ever truly impulsive, but with my entourage of 15,and the invaluable help of CCALS, we dined, wined, flashed my tubes on Bourbon Street (I got as many stares as the strippers), and boogied to music in the streets, at Tipitinas, the Rock ‘N’Bowl, and at a private concert with Marcia Ball. As marvelous as that was, oodles of my Tulane college friends from all over joined us for dinner one night which was even greater.
Along the same lines of Living Large, I make it my mission to get out to dinner – even though I don’t eat – many times a year. It requires a willing and strong caregiver or two and an accessible restaurant. This year I went to old favorites, the Chart Room, among others, and added a new hot spot, Epic Oyster in North Falmouth which was also the site of a truly Epic year-end Living Large party for the many, many friends and staff who make my life the joy it has been and continues to be. I also went to the North End, one of Boston’s most handicap inaccessible areas to my favorite restaurant just to rekindle memories with good friends and family. It wasn’t easy, but hearing my daughter reminisce fondly about the many happy meals we shared there in years past, made the effort well worth it. Moments like this help to enrich mylife.
In the interest of full-disclosure, 2017 year wasn’t all sweetness and light. My wife of 30 years filed for divorce, (a side effect of many with ALS) and having to deal with the multitude of legal, financial and emotional issues took a toll on my physical and emotional well-being. I have, however, recovered (bounced back would be too strong an image) and I continue to persevere.
The highlight of 2018 was, once again, David’s Old Silver Swim, a major fundraising effort to benefit Compassionate Care ALS, of West Falmouth. Last year was our 8th year and we raised, through registrations, donations, and silent auction items, $101,218, a truly astonishing feat. With the help of an active planning committee and a host of committed volunteers, we exceeded our goal. Admittedly, it is an exhausting effort for me, I won’t deny it, but one I would never think of giving up. It sustains me. I cannot think of a better way to expend my energies than in fundraising efforts for CCALS. I’m also excited about their new venture with MGH for HouseCall visits which are of critical importance for those of us with ALS.
I ask that you help me in this effort by contributing generously to:
David’s Old Silver Swim
52 Horseshoe Drive
North Falmouth, MA 02556
(a 501c3 non-profit)
I see my life as a gift and as an opportunity to continue to Swing For the Fences and just maybe, one day, to hit one out of the park!
Again who decides what a meaningful life is!