Mashpee Magic

Mashpee Magic
August 2015
Michael Gollin

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.
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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.

Giving Thanks, Always, Even in Grief

Giving Thanks, Always, Even in Grief
Michael Gollin
December 2014

 

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It wasn’t easy, but fourteen family members gathered at my brother’s home in Santa Fe for a joyous and spiritually meaningful Thanksgiving. After months of planning, and equipped as carefully as a Mount Everest expedition, I flew cross country with my wife, two of my children, a 250 pound power wheel chair, a bipap breathing machine, liquid food for my feeding tube, and a doctor’s note pleading for leniency from the TSA because of my disabilities caused by ALS. We had VIP treatment by the counter staff, security officers, and flight crew. Except for a delay in Washington caused by an early snow squall, the trip was fine.

My family is full of problem solvers. Brother Jim used a trailer to haul the heavy wheel chair, and made his adobe house handicap accessible using ramps and equipment generously sent, with encouragement, by Compassionate Care ALS.

Preparations for the feast were the mellowest we could recall. One reason was massage by Solar, a Brazilian shaman. When it was my turn, he didn’t work on my body, instead focusing on my spirit, which he believes surrounds our bodies and connects us to each other and everything else. It was his form of therapy and meant a lot to him. Although it was weird, it got me thinking that my body is getting weaker, but not my spirit. He was right, that I can strengthen my spirit even as my muscles atrophy.

I believe in both the physical and spiritual unity of nature. Our atoms come back as butterflies and flowers and rivers and people, and our memories and works live on. So why not our spirits, too, in an endless cycle?

Our Thanksgiving tradition is for each person to give thanks in remarks short or long. I thanked each family member for their remarkable traits, using my speaking app. I realized our Thanksgiving celebrations have become a quasi-religious ritual that we practice every year diligently to celebrate our love for each other and our good fortune, as descendants of immigrants in this great nation.

This year we were able to extend the celebration the next day with a spiritual retreat at the Upaya Center down the road. My family is not emotionally expressive. My terminal illness is the 800 pound gorilla and elephant in the room that no one really knows how to deal with. But through exercises involving meditation, writing, reading, and listening, Roshi (Zen master) Joan Halifax got us all openly sharing our experience of grief, and thereby, love.

Roshi Joan’s life work includes helping caregivers to apply Zen compassion in dealing with people who are terminally ill. She says when one family member is seriously ill, the whole family shares it. Her latest book, Being With Dying, is a gentle guide through this rough terrain. She had the 14 of us sit with her in chairs in a circle in the huge, simple sanctuary of planks and logs. We began by grounding ourselves and meditating about having strong backs and soft compassionate fronts.

Channeling my insight from the day before, I recited a prayer: Oh! Spirit that connects each of us to each other and our physical world, let us enjoy this adventure to find more meaning together.

Then out came paper and pens, and everyone was asked to write for five minutes, beginning: “What I have learned about grief is…“ We swapped and read the nano-essays, with authors unidentified. Remarkably it was almost impossible to know who wrote what. I guess we were writing about general truths.

Here is what I wrote.

What I have learned about grief is that it is a process of digesting trouble into something we can tolerate and even find strength and emotional nourishment. But it is easy to get stuck in shock denial anger or bargaining and not find our way to the peace of acceptance. It is a skill that can be mastered with help. I go through it every day at least once, sometimes more as I mourn the loss of yet another ability and contemplate mortality.  And I am refreshed and relieved when I come through it again, each time.

Some other remarks were:

All of a sudden an image, a memory, a place takes you back to an event with someone now gone. … The emptiness causes your heart to shudder and your eyes to tear and your breath to catch. Then you move on, remembering only the warmth that once was there.

 

Each variety of grief is different.

 

Grief… Is ever present in all life, lurking under a rock, present in a tingling partial way, or full on, in sobs of despair… Life fully without grief is a false goal but too much grief can overcome joy, and life itself. I… rationalize:… Dying is part of life… I sob quietly. And that is OK too. The sobs stop. Life goes on.

 

Devotion takes as many forms as grief, its counterpart. In devotion, we find salvation from the ravages of grief.

 

It makes me sad to see others I care about and love feel sad. It’s good to know what others are feeling and to be open with each other.

 

Grief doesn’t seem like a good thing, ever, but it has the ability to teach you about yourself and those around you.

 

It’s so much easier to distract yourself, and it feels much better. But it’s not something you can ignore forever. Something reminds you, …and then grief reaches in, pulls for you at high tide. It’s not just one feeling, either. It’s sadness, rage, confusion, hopelessness, nostalgia, desire, guilt, betrayal, everything that comes with disaster, pain, and tragedy.

 

There are certain kinds of grief which I do not believe I will survive… I know – somewhere in my DNA, the code that makes me human – I have the strength to survive it. So does everyone.

 

When grief enters my thoughts, nothing ever seems to be as it should be.

 

Everyone is different. Some people can’t cry sooner, but probably everyone does later. Crying is a therapy of its own sort.

 

Grief cannot be eliminated, only deferred or low-keyed or overlaid with other feelings and thoughts.

Then we wrote again. “Something I didn’t say was …” I wrote:

…how glad I am to hear the many points of wisdom and deep emotional expression from my family. I feel so very fortunate. 

Others wrote:

In the end it is only the love that matters, it’s the love that is the tracks we leave in the sand.

I think everyone is experiencing grief a little differently but there are also lots of similarities.

Almost everyone in the world grieves. But still, my own grief is not diminished by that awareness.

Getting one’s grief out for others to see is a liberating experience for both the grievers.

 

My closing prayer was: I pray for compassion, each for the other and for all of humanity and our world.

We all wrote and spoke about grief but there was lots of love in the family circle. Grief is universal and is yin to the yang of love. You don’t grieve unless you love. You can’t love without facing potential grief.

I told Roshi Joan when we planned this retreat that my family has hard shells. She told me afterwards that I was wrong. We all opened up. My mother has been suffering with tearfulness and visible grief about my illness for two years and now she feels not so alone. My father has tried to put on a happy face but now he is being more open, too. They both were able to speak about losing their parents and so many dear friends. My siblings, wife, children, and nephews and nieces all shared a fragile side. We all grew stronger, together.

On the Saturday we went to Chimayo, known for its hot peppers and the Catholic shrine. The church has a little room with a floor of dirt that is said to have miraculous healing powers. I drove my chair to the doorway and although I didn’t fit all the way in, I stood up and my brother sprinkled dirt on me.

According to that tradition, I am therefore cured. At least my spirit is.

reprinted at http://www.upaya.org/newsletter/view/2015/01/06

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Chimayo

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At the Finish Line

At the Finish Line

An unofficial transcript from Wireless News Service™

FALMOUTH – August 17, 2014. Hi, I’m Nina Murrow, Pulitzer Prize-winning vacation journalist. I’m speaking with Michael and Max Gollin, a handsome father-son team that just finished a grueling 7 mile Massachusetts beachfront road race. Gentlemen, how do you feel?

Michael: Fantastic! I hardly broke a sweat.

Max: I think I’m gonna die.

Nina: That’s terrific! Is this your first time running the Falmouth Road Race?

Max: This makes five for me.

Michael: This is my sixth year participating, and now I’m on a roll.

Nina: Wait, what? How was your time this year?

Michael: It’s the first time I finished ahead of Max since our first 5k five years ago.

Max: I felt like I was pushing as hard as I could but he was always a few feet ahead of me.

Nina: What would you say was the hardest part of the race this year?

Max: I’m gonna have to say the hills and the humidity. And the hand grips.

Michael: For me it was waking up at 5:45, but after that I took it pretty easy.

Nina: And how would you say this compares to last year?

Max: Well my pace last year was in the 7 minute mile range but this year I fell back to around 10 even though I felt like I put in more effort.

Michael: For me, finishing around a 10 minute mile was outstanding, especially considering that I was the last guy across the finish line last year, over 18 minutes per mile.

Nina: What a huge accomplishment! To what do you attribute your great success?

Michael: It was all teamwork and technique. And equipment.

Max: The thousands of screaming fans didn’t hurt either.

Michael: I agree. I feel like I had my best rapport with the crowd this year. I had a lot of freedom to interact with the spectators with thumbs up and fist pumps, and they gave me a lot of cheering, much more than Max got. That’s probably because he was always right behind me, not because they thought I was cooler or anything.

Nina: And were there any surprises for you on the course today?

Max: Well I earned my PhD on the way here.

Nina: Pardon?

Max: That’s right. I’m now a certified Pothole Dodger.

Michael: For me, it was kind of intimidating how fast the elite runners came by, men and then women. But the breeze they made was surprisingly refreshing.

Nina: How on earth did you get ahead of the elite runners?

Max: I ate my Wheaties this morning.

Michael: But in all seriousness, like many things in life it’s about who you know. The race organizers told us it was fine if we started at the front of the pack and even let us drive straight to the starting line. Olympic marathon gold medalist Frank Shorter didn’t object, maybe because my time was faster than his a few years ago and I didn’t give him a hard time about it.

Nina: Wow. Did anyone else get special treatment like that?

Michael: Yeah. A very out-spoke-n group that has been participating in the Falmouth Road Race for 40 years. The other wheelchair racers.

Nina: Ohhhhh. That makes a lot more sense. How did you divide the labor?

Max: I pushed, he rolled.

Michael: No, I pulled and he struggled to keep up. It’s all relative. Plus, I had to carry all the gear.

Nina: How did you train to be a wheelchair team?

Max: We practiced with both a standard and a lightweight wheelchair on the trail by our home in Maryland. We had help tuning them up to get rid of caster chatter. We went on a full-length practice run around Santuit Pond last week with my mom driving a pace car behind warning off crazy drivers. Running with the chair actually isn’t as physically demanding as you’d think

Michael: For me, no surprise, it was not physically difficult, other than keeping things out of the spokes. It was mentally challenging to figure out how to do it and required as much communication as a relay race. Good thing there was no baton to drop.

Nina: Did you like being on a wheelchair team?

Max: It’s good to have my dad as a running buddy again. Like when I first started running with him.

Michael: It was glorious to be out on the road with Max again. I am deeply grateful to him for coming up with the idea and sticking with it. More fun than pouring ice water on my head the other day, for sure.

Nina: Anyone you’d like to recognize for this incredible achievement?

Michael: I’d like to give a shout-out to our neighbor Gary, to Jeff Cupps who runs the Baltimore MDA wheelchair loan program, and Falmouth’s own Ron Hoffman at Compassionate Care ALS for helping us make this happen.

Max: And I’d like to thank the Santuit Striders, our family team of runners and supporters up here on the Cape, as well as all the other wheelchair runners for showing me this was possible. And my little sister Julia for running out to help push in the last mile when I needed it the most, even though I would never admit it.

Nina: Wonderful. Thank you so much, Max and Michael, for sharing your heartwarming experience with our viewers.

Michael: Thanks for having us, Nina.

Max: Thank you. Now we’re off to see more of the race. Bye until next year!

Nina: That’s all for now. This is Nina Murrow, signing off.

a fictional interview based on actual events, by Max and Michael Gollin
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Jon Imber

I just added this to the Terminal Disease Cultural Collection https://innovationlifelove.org/a-terminal-disease-cultural-collection/ and thought it worth sharing:

Jon Imber’s Left Hand (Richard Kane 2014). http://www.youtube.com/watch?v=Yacpqzgv8Wc
-Thanks CCALS for reporting on Jon Imber. http://www.ccals.org/PDFs/newsletters/Newsletter-2014spring.pdf
-This is an amazing preview of a documentary about renowned painter Jon Imber, who kept painting right through the end of his struggle with ALS, switching to his left hand, and then to a brush fastened to his head. His last painting was the week he died in April 2014. http://www.bostonglobe.com/metro/2014/04/24/jon-imber-artist-kept-painting-with-exuberance-face-als/bQen0EjAUKD2veEeXwPvpL/story.html
He had an unquenchable zeal for life and beauty, and was part of a loving family and circle of friends that supported him, literally, in his work, holding him up while he painted.
See http://www.jonimber.com for examples of his exuberant, colorful work.