I was the only person with a ventilator on South Cape Beach that mid-August afternoon. Maybe the first ever. There were beautiful views of Martha’s Vineyard, waves, gulls, dunes, marsh, and wife, daughter, sister, niece bathing in sea, punctuated by the sweet sound of surf. My mother, brother-in-law and nurse kept me company as I sat on my power wheelchair with portable ventilator on the back, on blue plastic beach matting that formed an accessible path to the parking lot. Most passersby averted their gaze from the guy with a tube going into my neck but a few smiled and gave a warm greeting. It was remarkable to be there.
My family has spent time in Cape Cod, Massachusetts since before I remember, in a summer cottage on Santuit Pond in Mashpee. With a gang of friends, my sister, brother, and I swam, boated, fished, explored, and played games every day. My parents still spend summers there and now my siblings and friends bring our children to this piece of paradise. All our guests remark on the sense of peace that descends on us as we relax on the dock and enjoy the effect of light and wind on water, the tree line reflected across the lake. We call it Mashpee magic, or just the Mashpees for short.
Thanks to ALS, the last time I ran and water skiied in Mashpee was 2012. In 2013, I used an ankle brace and could alternate jogging and walking. I could swim slowly but the water pressure made it hard to breathe and a bit scary for someone who used to swim across the lake every day.
By summer of 2014 I needed a rolling walker to walk and a wheel chair for longer distances. I had given up driving and could not eat solid food due to atrophy of my tongue. My speech was unintelligible and I was using my phone to speak. My breathing was so weak I needed a bipap machine (an advanced CPAP) for air pressure support when lying down at night. I declined a lot in 2 years and worried about the next phase of this inexorable disease. I thought I would not survive another year, or barely.
So as we planned the ten hour drive with all 3 kids last summer, I had conflicting emotions. On the day we drove up, I wrote this.
Last night I cried myself to sleep because I wondered if this is my last trip to Mashpee. Then I consoled myself by how happy I am to be going home to Mashpee.
But I’m here to tell you it was not the last! It wasn’t easy and as you can read below the journey ended with a bang.
In the fall of 2014, I had a PEG tube placed and stopped eating. We made a Thanksgiving trip to Santa Fe that was like an expedition to Mount Everest. See my post on giving thanks.
By spring 2015, I was short of breath just sitting and was unable to easily cough up junk from my lungs. In May, Jill and I were on Capitol Hill lobbying our regional congressmen to support ALSA initiatives when I had obstructed breathing. We went to the Congressional clinic where they gave me oxygen and a nebulizer treatment and a squad of military medics rolled me on a stretcher to an ambulance which whisked us across rush hour DC to George Washington Emergency Room.
There we learned that they had no useful therapies that we lacked at home. I told them what medicines were effective. I insisted we go home where we had a cough assist machine that was lacking at the hospital. If we had my bipap machine along – we forgot it that day – I could have avoided the whole incident. Our daughter brought the trusty Trilogy bipap from home and I was released.
That’s when I decided to go through with getting a tracheotomy and using a ventilator. In the US only about 10% or 20% of ALS patients have this procedure. In Japan it’s the opposite. 80% to 90% have tracheotomies. This is probably due to differences in coverage for long term care, because around the world most ALS patients on ventilators say they would do it again. Fortunately I have private long term care and disability insurance that covers the high cost of round the clock nursing. And more importantly I have a devoted wife and supportive family.
So I went to surgery in June having been told by the surgeon and others that unless there were complications it would be a few days in ICU, the intensive care unit, and less than a week in a hospital room, then home. I am very healthy other than this neuromuscular condition and figured I would be home in a week, maybe two.
The tracheotomy went fine and i started adjusting and Jill and 2 of our nurses received training from the ICU nurses in how to care for this permanent hole and how to vacuum junk out of my lungs with a suction machine.
The problem was that on the third day an insurance bureaucrat said that I could not be discharged to home but must go to a rehab facility for an undefined period regardless of my condition and the promises that I could go straight home. What’s worse, the only rehab with a bed for me was terrible as Jill determined on a visit. They didn’t expect to get me out in less than a month. Respiratory therapists and doctors who knew that facility confirmed, saying don’t go there.
So we quoted Amy Winehouse singing about a different kind of rehab: We said no, no, no! After several days of refusing to go there and working on getting all the supplies lined up at home, the staff relented. The key was my accepting that discharge to home was against medical advice. I didn’t care because it was obviously the healthier happier choice. Long story short, we won. As Atul Gawande says in Being Mortal, each of us, not our doctors, must decide what is best.
The respiratory therapists tuned up my home bipap machine to serve as a ventilator and we tried it for four days in my hospital bed. Finally on the next Thursday after the Monday I went in, an ambulance transported me home. The next day was my 58th birthday and one of the greatest reliefs of my life.
It did take about a month to sort everything out to be mobile again. I have many pumps and tubes for air phlegm saliva medicine oxygen food and water, instead of functioning tongue, glottis and diaphragm.
I’m very curious. I hacked the Trilogy vent with and we changed around the pressure and volume settings to tune it to my needs. Doctors look the other way. We need to adjust to get optimal breath. I am an expert at breathing after decades of practice. Scuba diving helped. I will admit that it is weird to meditate to the in out of mechanical breath but somehow it works.
We turned to organizing a long car trip, destination Cape Cod. Thanks to sister Kathy and friends Maura and Richard and CCALS, we had all the support and equipment lined up — nurses, hospital bed, lift, ramps, oxygen, etc. We got car chargers and extra batteries for the vent and suction and used an old humidifier that didn’t blow out the van circuit. It was quite a struggle.
Two kids and the dog went in the Prius. Jill, nurse Lisa, and I were in the van. We caravaned 10 hours and made it to Mashpee no worse for wear. My siblings’ families, my parents, and friends were there to greet us.
We had a week of festive gatherings on porches and my parents’ dock. Only one day of rain made navigating my wheelchair on sandy soil treacherous. I had cranberry vodka lime, a cranbreaker, in my feeding tube, and red wine.
We visited the Seacrest Resort courtesy CCALS which hosted a runners’ dinner the night before the Falmouth Road Race. Nephew David raised more than $5000 for CCALS which focuses on the all important care of ALS families instead of research. Next day we got to our shady viewing site with CCALS just in time for a fist bump from David as he ran by early in the pack of over 10,000 runners. We saw son Max, who pushed my racing wheelchair last year, and the rest of our Santuit Striders team. I guess I did alright in my first year as spectator surrounded by loving family, instead of as contestant. But… and I weep as I repeat my saying here… I’d rather be running.
That was our last day. When we departed the following morning, I said this. “Last year I thought was my last time. This year I say until next year.”
The trip home was not uneventful. Over my feeble protests, the driver followed GPS on a detour through the Bronx on terrible local urban roads. We bottomed out hard in a pot hole. The side air bag exploded on me and gun powder smoke went through ventilator. I was knocked to the left side of the chair. Fortunately, adrenaline and ringing ears was the major health impact, and the van was drivable.
Someone on the sidewalk gave directions to a body shop where several kind Puerto Rican New Yorkers mashed the under carriage back up by lowering the van onto a block. They cut off the dangling air bag, got the door closed, we paid $60 and went on our way. With all that, the return trip took just one hour extra. All was forgiven.
It’s good to be home but it’s not Santuit Pond.
On this trip, like everywhere I go, people tell me I’m an inspiration but all I’m doing is trying to live a full life, just like everyone else. Writing is one ability I haven’t lost yet, although it’s getting harder as my last useful finger, my left thumb, becomes non-functional.
Anyway I thought it was worthwhile to tell this long story. I believe that love, gratitude, forgiveness, compassion, living day by day, and doing our best in the face of seemingly impossible difficulties, that is a full life.