Wow, Thanks, Sorry, Please

Wow, Thanks, Sorry, Please
Michael Gollin
November 2017

Wow. I have had a wonderful life, especially these recent years. I am not afraid of dying. My enormous daily and nightly struggles will end. I will die a peaceful death of complications from ALS surrounded by my family.

Thanks. To my nurses and aides. Thanks. For all the love I received from family, friends, and colleagues. I love my heroine Jill, my fantastic kids Natasha, Max, and Julia, my revered mom and dad, my great siblings Kathy and Jim, my beautiful in-laws, my talented nephews and nieces, cousins, and friends.

Sorry. For my many transgressions. Please forgive me. I forgive you.

Please. Remember me kindly but honestly when I am gone.

It is okay. Really.

Unauthorized Biography

Unauthorized Biography
Rita Gollin
September 6, 2017

Editor’s note: Recently, my mother sent me these succinct yet beautiful stories from my upbringing. I asked her for permission to share them on my blog, and she said she was honored. So, here they are:

Dear, darling, forever and deservedly and unreservedly beloved Michael,

I’ve always loved you and always will.

In the fall of 1956 when we decided it was time to have a second child, we discovered that you had already begun to be. Then on July 3, when my parents Max and Sophie Kaplan drove from Brooklyn to Rochester for the Big Event, I served dinner, then called my OBGYN Dr. Thro, and headed for the hospital.

When the doctor arrived at the labor cubicle, the just-installed resident told him that since I wasn’t screaming I was not ready to deliver, whereupon I said, “Dr. Thro, you’d better come in and catch this baby”– which he did. None of us reached the delivery room. The brand new nurse helped me onto a gurney, told me to grab the crib behind it, placed you in it, and said, “Don’t worry, B was the average grade in my graduating class.”

My parents remained for a few days, babysitting Kathy, but also—we later realized—so the family back in New York would assume they had stayed for a bris. In fact, however, our OBGYN had invented an ingenious device that constricted blood to the foreskin and so precluded cutting.

Life proceeded smoothly, punctuated by such events as a first birthday party for you and Judy Harway on the Harway porch.  Shortly before, our friends the Hadasses offered to lend us their nearby house for the summer. But soon after I arrived for a walk-through, you disappeared—then reappeared almost immediately at the top of the staircase, delighted by your new achievement.

On a birthday soon afterward, you immediately put to use your new hobby horse, cowboy hat, and regalia including a red vest, bow tie, and holsters. Nana helped celebrate at a new restaurant on the roof of the airport—where the birthday cake arrived studded with sparklers. Fireworks filled the sky soon afterward, which you (understandably) concluded were also acknowledging your birthday [Editor’s note: this fourth birthday party is my earliest memory].

While crossing the large meadow behind a friends’ pool club soon afterward, you dropped your new wristwatch. Determinedly, you searched in a pattern of decreasing squares until you did indeed find it. Our friend Viv Harway was so impressed that she invited you to serve as an expert respondent for one of her child psychology classes. Your reward was a leather change purse, in a sense your first wages.

Another event at about that time was really a group event. Because Strong Memorial Hospital concluded that medical students would benefit from observing a cross section of four-year-olds at play, they set up a nursery school and charged low fees. But instead of achieving a representative cross section, the class was almost entirely composed of faculty children. It was not long before all you realized that the room’s large “mirror” consisted of one-way glass, and began cavorting before the observers you never saw.

Just a bit about our days on the SS France en route to England. The five of us shared a single cabin—you and Kathy in one set of bunk beds, your father and I in another, and Jim in a crib in the middle bolted to the floor. You named the cabin “BooTiki”—designating second level B, cabin 260. We registered you all for the children’s program, vaunted for its meals, shows, and games. But for the return trip you all refused to be “jailed.” Subsequently and consequently, we all occupied a table for five in the main dining room.

Renting a house in the Village of Datchet (near Windsor and Eton) made you and Kathy eligible for the local school—Eton Porny. So you could say that you went to Eton for a semester. Though all the other boys wore shorts, you stuck to long pants, declaring “I am an American boy.” The other students’ accents amused you, as when you mimicked their pronunciation of “rubbahs.” But you happily raced through the series of increasingly challenging “readers” that your teacher had at her disposal for students who had finished their assigned work. And you didn’t complain about lunches at the English Restaurant across the street, beyond remarking that all the food was beige.

That winter, we left Datchet for our lengthy trek through Europe (pausing for three months at Cabo de Palos)—armed with Legos, books, and miniature animals–eventually returning to London and sailing for home.  Among the many memorable prior events was celebrating your birthday at the huge amusement park on the southern bank of the Thames, which offered scores of carousels and other alluring rides and games.  When the coin you inserted in one of them garnered a large prize, you thought it was a rigged birthday gift (as would happen again years later when you went fishing on your birthday and caught masses of bluefish).

Because I began teaching full time after returning to Rochester, we enrolled all three of you at the preeminent country day school called Harley.  Perhaps you remember coming home the first day and exulting that you had met someone smarter than you were, Eric Worby. And as we soon heard from Marcia and Sy Worby, Eric had said the same thing about meeting you.  As an indirect consequence of the Worby family’s interest in chamber music, you began studying the viola in middle school (training that served you well when you joined the Brighton High School orchestra and years later performed in Swiss villages). Of course we shared your dismay when buying 37 Glen Ellyn Way required switching you to Brighton’s schools (where at Viv’s urging, you were all tested and consequently “skipped”).

A random memory. Perhaps after we had started renting at Santuit Pond but before we bought our Mashpee cottage, you and Jim decided to pool your allowances and buy a canoe. So we went to the Rochester store that handled them, and you made your choice (graciously accepting a small subsidy).

Then after buying the cottage, because we agonized about depriving you of group activities, we registered you and Jim for a two week session at a Scout camp not far from the Sagamore Bridge. But after only a day, you were ready to leave. Why should you line up to go swimming or take out a boat, you asked, when our family had no such requirement? So we immediately collected you. And of course, neighbors’ kids and numerous guests provided ample group activities.

Of course, I sometimes worried about you—as when you stayed out very late at night. And when you (commendably) joined marches that protested the Vietnam War, I feared that you might be hassled or that surreptitiously taken photographs might somehow someday impede any career you chose.  Anxieties about your plan to hitchhike cross country lightened when you agreed to travel from Toronto to the west coast by train.  A copy of “Diet for a Small Planet” precluded concerns about your vegetarian years–and I gladly swapped some of your father’s wine for bushels of vegetables from my office mate’s farm that soon turned into stews and borschts.  More consequentially, we worried about mugging and thefts during your years on Chrystie Street.  And particularly during your last two years at Princeton, your father and I worried that you weren’t given adequate direction and advice.

It’s worth recalling that even in grade school, you were determined to help support yourself—successively delivering newspapers, working as a salesman in Rochester and on Cape Cod, waiting on tables in both places, and perhaps most innovatively, importing and selling Meerschaum pipes while at Princeton.  One of your jobs rightly earned a place on your college applications: iguana sitting. And as one happy result of your Princeton-acquired biochem expertise, you assisted Tom Punnett in some of his experiments—while spending the summer with the Punnetts and enjoying Hope’s cooking.

The position as research assistant that you were offered in Switzerland at the ETH had some remarkably fortuitous results, despite the traumas of the suicide of scientist you were assisting and the redirection of your work. Not surprisingly, you made fine friends and took fine trips during those years (from which we benefited enormously when we visited you). Your commitment to make the most of each opportunity was evident on your trip on the Trans-Siberian railroad, as when you managed to visit a Soviet dissident, and when your fellow travelers persuaded the boat to Japan to await you while you coped with a bureaucratic goof in your paperwork.

Far more consequentially, when you decided that you did not crave a scientific career, you determined that an extra LSAT form was available a train ride away from the ETH at the U.S. military base in Dusseldorf–took and passed the test, and entered the BU law school. Not surprisingly, you thrived. One innovation would turn out to be representative: inaugurating scholarships for students who opted to work for nonprofits rather than paying law firms after their first year of classwork. That scholarship system is still in place and has been emulated by other schools—and was the precedent for the scores of subsequent organizations that you founded and worked for (implicitly expanding the meaning of the term “pro bono”).

One of many happy memories repeatedly surfaces. One summer day when your father and I were vacationing along the Mexican east coast with you and Jim, a young fisherman took us out on the ocean and provided snorkeling and scuba gear.  As I vividly recall, I snorkeled blithely on the surface while watching you instruct your not-yet-licensed brother in the niceties of scuba.

It’s almost impossible to summarize the rich and varied professional and personal life that ensued, as you generously and selflessly augmented the lives of innumerable individuals and institutions. You married a remarkably loving and talented woman, and you and Jill have begotten three unusually independent and enterprising children.  It is understating to say that your InnovationLifeLove blog is filled with wit, wisdom, and moving poetry, whose influence is already enormous. From the start, you’ve been a role model for responsiveness to and appreciation of the natural world we all inhabit, and for your diligent probing of our shared cultural heritage.

I can barely even bring myself to type the letters ALS.  Your determination to make every possible effort to cope with that scourge is heroic. My admiration for you is boundless.  I’ve never been a religious person. But as I humbly and gratefully acknowledge, you are and will always be part of me.

Your loving mother,
Rita

Jerry Lewis

Jerry Lewis
Michael Gollin
August 22, 2017

Recently, comedian Jerry Lewis passed away. In addition to his comedy, he was the national chairman of the Muscular Dystrophy Association (MDA) and a regular host of their telethons. He did many great things to help people with ALS, muscular dystrophy, and related illnesses. I would like to share a quote from him that explains his dedication to the cause:

“I shall pass through this world but once. Any good, therefore, that I can do or any kindness that I can show to any human being, let me do it now. Let me not defer nor neglect it, for I shall not pass this way again.” – Jerry Lewis

The MDA helped me as a graduate student with a grant to study fruit fly flight muscles. That was a stretch from studying human muscles, but they were creative with their research program. They helped me even more recently with their three wheelchairs and Hoyer lift. They also funded the ALS clinic I go to at JHU.

I avoided his comedy and his telethons when I was younger, but I am grateful to Jerry Lewis now.

Dad Libs

Editor’s Note: To make creative writing a little easier for my dad (though no less expressive), I wrote the opening phrases of this piece (As a boy, etc.) and he filled in the blanks. You could call it a thought experiment in succinctly describing the experience of a life in 100 words or less– a “micro-autobiography”. The name “Dad Libs” is a play on the popular word game Mad Libs, where players fill in empty spaces in a template story with their own words. You can find the template below- try it yourself if you’d like. Here is what we came up with.

-Max

Template

As a (boy/girl), I was…

As a teenager, I was…

In my twenties, I was…

In my thirties, I was…

(And so on, however long your story may be.)

Dad Libs
Michael Gollin
August 2017

As a boy, I was silly and adventurous.

As a teenager, I was dissolute, thrill-seeking, and intellectual with low emotional intelligence.

In my twenties, I was diligent, motivated by science and law.

In my thirties, I was building emotional awareness, a family, and a career.

In my forties, I was expanding expertise and keeping up with a growing family.

My fifties were five years of fitness and spiritual awakening, then five years of illness and confronting mortality.

My sixties is the peaceful decade.

Terminal Disease and President Trump

Terminal Disease and President Trump
Michael Gollin
March 2017

The election of Donald J. Trump was terrible for me, but I am no stranger to bad news. My experience with a progressive, incurable, terminal disease–ALS–for over four years has given me a unique perspective on how to survive and make the best of the time we face under President Trump. This is not incurable: there are therapies we can do for our country. It is not terminal: we will survive, absent nuclear war. And though it may be progressive in the medical sense of the word, certainly not in the political sense, our efforts can surely mitigate the damage.

I joked for months that if Trump won, I could pull the plug on the vent. A harsher remedy than moving to Canada, my bit of gallows humor. Concerned friends were afraid to call me after the election, in case I meant it. But I awoke the next day, realizing I was still glad to be alive and that I still have plenty of fight left, even though I am quadriplegic and can’t talk due to the tracheostomy and ventilator. I have to write with my eyes using eye gaze technology, which is slow but magical.

I admit that on inauguration day, my pulse started to race and my blood pressure shot up, and I had shortness of breath. If Trump was trying to kill me, he failed. I started listening to relaxing classical music and turned off the news. I soon felt better.

I have woven these thoughts about persevering into my manifesto. Helpful links are below.

Maintain hope is rule one. With hope, any effort seems worthwhile. Without hope, it hardly seems worthwhile to make any effort. Do activities that refresh your hope, like exercise, spending time with loved ones, art, and charity. On election day, I sent an email to friends and  family, saying the sun rose today and would continue to do so every day in the future, and that the election did not change  my feelings of gratitude for being American, and to my ancestors for coming here. Many replied that my note gave them hope. Do activities that give hope. March in protests, if that works for you.

Stand up for others. There is a lot of new ugliness across this country, and more to come. When you hear other people saying hateful words, speak up if it is safe to do so. Ask “Why do you feel that way?”, then listen. If you witness someone in aggressive hateful acts, intervene and get someone to videotape it, and comfort the victim, and report to the police. If you read about some hateful act in your community, write a letter to the local newspaper. Attend interdenominational events in your community, and interracial activities, so  you can become the solution to these problems. The Muslim ban airport protests and the volunteer lawyers that came out were an example of  this kind of altruism.

Dedicate more money to charity. After the election, Planned Parenthood received an unprecedented infusion of donations, most “in honor of Mike Pence”, like ours. We have increased our giving and focused on the losers in Trumpian USA. Lawsuits will be an instrument of leverage, the courts remaining independent, so the ACLU and Southern Poverty Law Center are good bets.

Frame your terms to get your message across. Lakoff has a book, Don’t Think of an Elephant. It’s impossible not to when you hear that phrase. Republicans are better at this than Democrats. Here are some suggestions. When talking about Russia, call it TREASON. Say Flynn is a Benedict ARNOLD, and Trump may be, and we must find out. Label them. Don’t say conflict of interest, say corruption and bribery. Don’t say nepotism, talk about dictators who appoint family members. Say lies, not untrue or false. Say Trump is mentally ill, not bizarre or hateful. Narcissistic pathology, pathological liar. He needs to be framed this way to stand a chance of impeachment.

Follow the Indivisible manual for persuading members of Congress to act with conscience. Look it up. Here is the gist. Concentrate on your own representatives. Call regularly to both their D.C. and home offices. Go in force to forums and town hall meetings and ask provocative questions, framed as above. And make them feel that they will pay dearly for supporting Trump.

Support challengers. Democrats against Republicans, and feisty Democrats in primaries, just like the Tea Party did but for good. Run yourself, if you can, for local office. Join your local democratic club.

Be selective. Focus on a single issue or cabinet department. You don’t have the time to resist the entire U.S. government. Share the burden.

Vote with your money. Boycott Trump and his supporters. Buy from resistors.

So much for tactics, here’s the strategy.

Take as many seats as possible at every level, starting this year. Take back states, one by one. It almost doesn’t matter what position. Run for town council, school board, state legislature, or support those who do. Whatever is available in 2017. And follow up next year.

Guard the right to vote with all your might. Voter ID laws very well may have cost us the election. I fear that worse is coming if Republicans have their way. This is strategic because voting is necessary to change our political reality.

Impeach after midterm for corruption and treason. History tells us the  Democrats will win seats, and they might win big. And Republicans may be forced to take anti-Trump positions in order to win. The bottom line is that impeachment looks more likely after 2018. Depending on the Russian investigation, it may come earlier. Pence is terrible, but he won’t start a nuclear war in response to an insult. And he understands the constitution, unlike the current president. Pence we can handle.

Plan B is the 25th Amendment, which provides a process for replacing the President when they are unable to discharge the powers and duties of the President. The president can do so voluntarily, like going into surgery. This is only going to happen if Trump gets bored or angry at his position. Next, Vice President Pence can depose Trump with a majority of the cabinet. This is possible, because Trump has no prior relationship with most of his cabinet. If the President disagrees, the congress decides. This option is most likely  after the midterm, assuming the Democrats pick up seats.

I have learned to overcome many difficulties with my disease which causes progressive paralysis, so now I have almost no muscles that work. My hard-earned lesson is to adapt with the help of loved ones, recognizing that life is getting more difficult. I try not to fear the changes, and recognize the love and  beauty that surround me. I have adopted a Buddhist practice, showing compassion for everyone and everything. And that includes Trump supporters. Proceed in love, and you can’t go wrong. You should love humanity, love nature and the environment, love justice, love civil rights, love our country, and love yourself. John Lewis talks about good trouble, nonviolent and based in love. As the saying goes, love trumps hate.

So there are my thoughts. Be brave, be persistent, be optimistic that our efforts will make America better.

P.S. Here are several links on practical ways to defend democracy under a Trump Presidency:

http://shareblue.com/former-congressional-staff-publish-guide-to-resistance-under-trump/

https://99waystofighttrump.com/99-ways-to-fight-trump/

http://www.attn.com/stories/13297/evan-mcmullin-tweets-simple-advice-for-life-under-trump

https://qz.com/846940/a-yale-history-professors-20-point-guide-to-defending-democracy-under-a-trump-presidency/?utm_source=parHuffPo

http://www.attn.com/stories/12768/former-congressional-staffer-explains-how-to-make-congressman-listen

https://thecoffeelicious.com/how-to-stayoutraged-without-losing-your-mind-fc0c41aa68f3#.y4hrs42g9