Category Archives: Prose

How to Balance Work and Family (Answering My Son’s Questions – Part 4)

How to Balance Work and Family (Answering My Son’s Questions – Part 4)

Michael Gollin (with help from Max Gollin)

In 1994 Boston University law school awarded me the Young Lawyer’s Chair for public service.  I remarked that I had achieved a balance of guilt: when I was doing billable work I felt guilty for not doing enough pro bono work, and when doing pro bono work I felt guilty about not doing enough billable work. I figured if I didn’t feel guilty both ways then I was out of balance.  Maybe that’s my Jewish upbringing.

The same formula applies to work and family.  If you don’t feel guilty at work, you’re not spending enough time with family.  If you don’t feel a little bit guilty at home, then maybe you’re not working hard enough.  I always preferred the second kind of guilt.

At a certain point I had more worthwhile things to do than time. It wasn’t a question of wasting time any more but of choosing among worthy things.

To help me choose, I came up with an algorithm.  For any opportunity, I gave a score of 0 to 3 for professional factors like helping clients, developing new clients, helping the profession, and public interest, and for personal factors like Jill, kids, family, friends, exercise, and culture. A high composite score sent me to speak at a conference in Anaheim, stopping to see clients at UCLA on the way, after stopping at Vail to ski with Andy , and after the conference stopping at SLC and skiing with Mike Polacek and Henry, then on to UC Davis for more client work.  Even though the immediate family got nothing from it, every other factor was high for the 12 day trip.

Another factor is that I have been keenly aware that my success at work has been vital to the well-being and security of our family.  I am very deeply proud of the stability that I have been able to provide.

Editor’s note: this is part of a series of advice letters my dad wrote for me in September 2014 when I asked him for some guidance on the big things in life –Max

Facing Death to Take Charge of Life

Facing Death to Take Charge of Life
Michael Gollin

What are the most important questions when we and loved ones face serious illness? The article below sums up the inquiries succinctly.

From The New York Times
Seeking a ‘Beautiful Death’
Before making an advance directive, talk with your doctor and your caregiver about just how far end-of-life care should go at the cost of comfort.

The kinds of questions doctors should be asking:

■ What gives your life meaning and joy?

■ What are your biggest fears and concerns?

■ What are you looking forward to?

■ What goals are most important to you now?

■ What trade-offs or sacrifices are you willing to make to achieve those goals?

Everyone can answer these questions although based on personal experience they become more directly relevant and therefore less frightening when you have a serious disease or are older.

The book Being Mortal, by excellent writer and surgeon, Atul Gawande, tackles these issues in a very personal and comprehensible way. Our late in life decisions should be driven by our humanity, not the health industry imperatives. Key questions include the following.
What do you understand about your disease?
What are your priorities for your remaining time?

There was a TV show about this book.
http://www.pbs.org/wgbh/pages/frontline/being-mortal/

I found the book more helpful. For example, I have made it known that I don’t want 911, ambulance, and emergency room treatment. Maybe for a broken bone, but otherwise I can be treated at home for ALS and my ventilation better than at an ER, if treatment is viable, and avoid massive discomfort and dislocation. I have rushed to the doctor in my own wheelchair in our van and returned home the same way to live my life as best as I can. I’m fortunate in that sense.

Everyone will face their health fate however they can. But it helps if a loved one or doctor or nurse asks the right questions.

***

Finding a Place to Live (Answering My Son’s Questions – Part 3)

Finding a Place to Live (Answering My Son’s Questions – Part 3)

Michael Gollin (with help from Max Gollin)

First decide where you will study or work. Country, region, weather, proximity to family and friends, politics, natural resources, and recreation all play a role.

Once you know the city, you need to pick a neighborhood. This depends on safety, commute, mass transit, shopping, schools, neighbors, restaurants, culture, and cost of living. I like living on the east side of DC so I don’t commute into the sun both ways.

Then you calculate what you can afford.  There are rules of thumb like 30% of gross income. You can rent, sublet, or buy a condo or house.  Over 10 or 20 years buying can be a good investment, but for shorter periods you have to be prepared to just break even or lose money, so renting can be a fine deal. Uncle Albie spotted the truth that the legalities of occupancy are less important than if you like the roof over your head and how well you can afford it.

I was born in faculty housing but my parents bought a house at 14 Trafalgar near the University of Rochester a few months later. Schools were bad so we went to the private Harley school. By 1968, the neighborhood had gotten worse and more violent. They sold the house for about break even and moved to Brighton, more expensive but with fine public schools, a great place for 6 years after the trauma of changing schools.

In Zurich I had three places in three years. First, I moved quickly and joined a Rotary residence. After a couple of months I found the rules annoying so I found the Freiestrasse apartment nearby for a similar price with three roommates.  That was a blast.  But it was on the edge of town and my lab moved in the opposite direction, and my long-term buddy-to-be Alex Kunz graduated.  My name came up for student housing downtown so I took it, for even less rent and a cool old building located near everything on the Leonardshalde.

In Boston, the same– three places, three years.  First year I shared an apartment with a high school buddy, sublet from our third roommate, Donna, on Park St., on the Fenway, a ride or walk through the park to school. I bought my still current desk/door from the building owner. The next year, I moved to share the top two floors of a house on Naples Ave., where I had both a bedroom and a spare room for an office.  When I came back after summer working in NY I got my own one bedroom apartment at 360 Riverway for privacy. Each place was about one mile from BU law school.

New York is complicated.  A whole world of connections and racing around to beat the competition. My college roommate sublet his 7th floor walk-up loft for a couple of months while he and wife were away. There was an elevator but it rarely worked. Boxes, bike, and bags up a long way! Then they introduced me to another crazy loft situation on Chrystie St. in Chinatown where a painter had a lease on the building but there was a dispute with the owner under the new tenant-friendly loft law. I paid some money to the painter and moved in. We ended up replacing the furnace and doing a lot of work out-of-pocket, but we didn’t pay rent during the dispute. Six years later I settled and Jill and I moved out, turning the space over to a new Chinese owner.

Meanwhile, I heard about homes in the Catskills Park, and in about 1985 bought a cabin in Lanesville, near Hunter ski mountain.  A good place to invest my money I thought. If it appreciated OR I could rent it I would break even and have good tax breaks.  If both, I would make money.  I figured it was a safe investment.  I enjoyed many summer weekends there and brought lots of guests.  But eventually when we were leaving New York it wasn’t renting and the brokers said it would sell just below $100k. They were way wrong all the way down to $45K.  I had paid $61k and invested about $15k, so it was a $30k loss. I became even more cautious with real estate as a result of that lesson. I figure it evened out somehow with my loft.

Jill and I decided to move to DC area as I lined up a job.  Elliot Eder introduced us to a superb broker, unlike the ones in the Catskills, and she showed us about 80 houses until we found Chestnut Ave.  We wanted a half-acre a half hour from downtown within our price range.  We got almost 7 acres for less than we expected and once in a while it is still a half hour drive downtown. The neighborhood has mostly modest homes so the house has not appreciated much but that’s okay.  We were able to pay off the mortgage quickly. We invested more in renovations than the original purchase price. But Uncle Albie was right because we have had a great home for an affordable price and we never wanted to move.

Editor’s note: this is part of a series of advice letters my dad wrote for me in September 2014 when I asked him for some guidance on the big things in life –Max

Graduate School (Answering My Son’s Questions – Part 2)

Graduate School (Answering My Son’s Questions – Part 2)

Michael Gollin (with help from Max Gollin)

Going to grad school should be a purely pragmatic decision, although with some fun, of course. It is not like college.  It is directly tied to choice of career(s).  It should not be a way to spend time (and money).  You should certainly get scholarships and fellowships and teaching posts.

The degree program you choose depends on what degrees people have in positions you would like to have. This is what’s called a terminal degree, like JD for law, MD for medicine, MBA for business, PhD for professors, or a Master for teachers.

The reputation of the department or grad school among peers is often more important than the university itself.

There are no reliable directories and ratings, in contrast to college. You need to network aggressively with your professors, advisors, family, friends, LinkedIn, and career placement office. Find the prerequisites and complete them. Research departments, grad schools, faculty, and email them and visit.

Grad school is professional training, not liberal arts. You may consider several very different paths.  Explore them all thoroughly but wait until you know before you decide which way to go.

When I was a senior (age 20), I considered PhD and MD programs, so I took the GRE and MCAT.  But I wasn’t ready to commit.  I wanted to go to Europe for a year.  I asked around and my parents did, too, and on winter break I met with the husband of the daughter of the Rubins, best friends of my parents.  He was a biology researcher at the U of Rochester and he had worked with Erik Kubli, a Swiss fruit fly researcher from Basel.  So I wrote a letter describing my research with fruit flies. About a month later I got a response from Ilan Deak in Zurich offering me a fellowship from the Swiss National Fund for a doctoral position working for him at the University of Zurich. It paid enough to live on.

It was not simple because the administration said I was not eligible for a PhD position.  My professor arranged for me to qualify for the grant provided I completed the requirements for a Diplom, equivalent to a master’s degree.  After a year Professor Deak died, apparently a suicide.  I then arranged to continue my work with Prof Eppenberger at the ETH.  I stuck around because it was a great deal to be in Zurich, even though I decided early not to be a bench scientist.

I considered a doctoral degree and career in marine biology when I was doing the 2 week lab portion of a marine biology course at Banyuls in southern France.  I also thought about studying enology at UC Davis for the love of wine.

Eventually I chose law school because I liked political arguments and was more concerned with the application of technology to society than with doing science. I thought about environmental law. The education attracted me. I took the LSAT as a walk-in standby on the US military base outside Stuttgart.  (I scored about the same on all standardized tests.)

Applying to law school and business school is relatively simple compared to other graduate programs because there are so many and the degrees are roughly similar. I was happy with BU and with my degree and career.

So I spent about three years figuring out the right grad school for me and then three more completing it. Many of my colleagues went all the way through a PhD before going to law school, so I feel like I was relatively focused.

Editor’s note: this is part of a series of advice letters my dad wrote for me in September 2014 when I asked him for some guidance on the big things in life –Max

Answering My Son’s Questions- Part 1: How to Start A Career

Answering My Son’s Questions- Part 1: How to Start A Career

Michael Gollin (with help from Max Gollin)

Follow curiosity, find a way to serve others, consider various jobs that fit, research pay, competition, and long-term advancement prospects. List jobs you might like, then choose those that have reasonable prospects for success. You will always do something you like if you do this, instead of choosing a high-paying job at the outset or something you like that doesn’t allow success. Meet people in the area and see if you like them and their values.

Choose options that tend to open doors and lead to various follow-up jobs rather than dead-end jobs.  The modern career may look a lot different from mine, which only had one major jump or three. My career went from bio to law, patent law to environmental, and gradually back to IP law.

I chose science because it expands boundaries of knowledge and can improve lives, but can be used for ill effects too, like pollution and war. It has lots of cool equipment and smart people. Law is the alternative to anarchy and hunger.  Lawyers serve clients and the law.  I help the law promote innovation and help my clients be rewarded for creative work.  Smart and creative people are my regular colleagues and clients.

But I write, lecture, teach, and have had many hobbies beyond patent law. If you remain curious, keep learning, find ways to serve that you feel good doing, and maintain a network and support group of like-minded people, you will discover your career or it will discover you.

Editor’s note: this is part of a series of advice letters my dad wrote for me in September 2014 when I asked him for some guidance on the big things in life –Max

Not Dead Yet with two lost stanzas

I wrote Not Dead Yet in spring 2013 during an especially dark period in a difficult stretch of time, when I suddenly saw the beacon rays of hope. As I wrote more and more stanzas I felt torrents of defiant optimism coursing through me.

I let it sit a while and then reorganized stanzas and worked on turning it into a song. Somehow we ended up with two songs. Both versions were performed at my raucous 57th birthday party in July 2014. Son Max turned it into a ballad. Friend Mike Guerreri arranged it as an upbeat anthem which his band, Long Time Coming, has since played at many gigs.

Then I finalized the poem version and posted it in November 2013.

Not Dead Yet

Along the way I somehow decided to drop two stanzas. I went looking for the first one below after hearing Natasha and Max sing for me last weekend when both were home. All three kids were blessed with their mother’s voice and they sound beautiful together.

The second stanza feels poignant for me, having just passed three years from my definitive diagnosis.

Fortunately I saved old drafts and so here they are, the two lost stanzas, two years later. They would fit at the end of section 2 of the poem, or elsewhere. Click the link to the original, and you decide.

###

When I hear you sing your solos
And harmonious duet
The song could last forever,
‘cause I’m not dead yet.

I learned the most important thing
With my disease onset
No one lives forever,
But I’m not dead yet.

Yes! We’re not dead yet.

***

Book from Blog

I am extremely pleased to announce the launch of my new book, Innovation Life Love: Reflections on Living with Mortality.
It’s available on Amazon already although we’re still working on the descriptive material.

The book compiles most of the poems, essays, speeches, and other material from this blog, with new material. It is more an eclectic journal of my recent years than a memoir.

For the earlier posts, I was still touch typing. Now I struggle with my left thumb on my phone. But it’s all good. Thanks to endless help, support, and encouragement from my family, especially my sister and my wife, and many others, including readers in more than 85 countries, here is a dream come true.

If you do buy it, don’t forget to write a review on the Amazon page!

***

Here are some excerpted comments posted on the blog. I hope you enjoy them as much as I do.

– Michael, you are an amazing writer. This captured, with your typical grace, the battlefront you’re on and what that means. You continue to be an inspiration ….

– Michael – Thanks for the inspiration. When I think I’ve got too many challenges, I remember that an attitude of gratitude, along with acceptance, is the key to positive thinking. Amen.

–  Well said, my dear! I am so glad you soldier on tablet in hand–every campaign needs a good chronicle.

Such a lovely post, it just encapsulates the ups and downs of life.

Wow, Michael. For a guy who types with one finger, you did an amazing job here … Great post!

– So beautiful, Michael, I’ll return to it again and again. Thank you.

– Gorgeous and timely.

– Your grace, strength and dignity are both amazing and inspiring.

– Spoken from the heart, and you have a very big heart, Michael! Your heart is far bigger than the ALS.

– What a fantastic blog!! Thanks for spreading happiness!!

– I read your autobiography and I was amazed by the things you have accomplished and continue accomplishing. How do you find the courage and stamina to keep going? Wow! I will continue checking your blog as I find it very enriching. I wish your life continues full of love and happiness. You are an inspiration!

– Your poetry is beautiful and I wish you the best!

– Your website is beautiful and inspiring. Sending love.

It brought tears to my eyes how you know you are part of nature. How we all are part of nature. Comforting and deeply beautiful. Thank you for your wisdom.

– A world of wonder, and endless inspiration.

– A fine series of metaphors and flowing sounds for the sense of a generous and growing self connected (by e.g. vapor, reflection, heat, spark, intent, sound, mind, attitudes and actions) to a greater other. Not easily conceived or sustained, but the short lines make it all possible! Congratulations!

– Lovely imagery!

– Magnificent Michael. Thanks for the reminder to be still and listen.

– So wondrous. We are all cherry blossoms, seems like. You are among my cherry blossoms, Michael. That, too, is all I need.

– What a lovely poem. Really, just lovely.

– I love this poem and I am very honored, proud and happy to be a part of you.

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.
.
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.

Lowen and Navarro: Eric Lowen, Musician, Died of ALS

Eric Lowen, Musician, Dies at 60 http://www.nytimes.com/2012/03/28/arts/music/eric-lowen-musician-dies-at-60.html

We met Dan Navarro at the ALSA meeting. His duo partner Eric Lowen died of ALS 3 years ago. They performed 5 years after the diagnosis.

Dan pointed me to their song about the moment after diagnosis. It is heartbreaking and beautiful.
How Mighty Is The Silence.
https://youtu.be/nNCqIvfjobo

I have become a big fan of their many albums with soaring lyrics and perfect harmony.