The lighter side of living with ALS

The lighter side of living with ALS

Michael Gollin at 57
July 3, 2014

When I learned I had ALS in 2012, the only response I could make was, “That sucks.” Then I started looking for silver linings and tried to figure out how best to play the hand I was dealt.   Here is my standup routine, delivered sitting down at my 57th birthday party, with my favorite 12 things about living with ALS.

 

12. If I get slurring, stumbling drunk, no one can tell the difference.
11. I don’t have to care much about the appearance of what I wear, as long as it passes for clothing.
10. People give me credit just for showing up, like in 1st grade. And I even get to take a nap.
9. If I say something even vaguely humorous, people act like I’m a comic genius.
8. When I drop things, no one tells me “clean up that mess you made.”
7. If I show up at work 1 or 2 days a week, instead of chewing me out, people call me a hero and an inspiration.
6. VIP treatment at concerts, theme parks, sporting events, and airports.
5. I can finally pull off a credible impression of Kurt Cobain in Smells Like Teen Spirit.
4. After decades of trying to keep weight off, it’s weird that I’m trying to gain weight, and I get to eat all the starch, sugar, and fat I avoided for so long. People actually get jealous of me – for about a nanosecond.
3. Pretty ladies hold doors for me and help me sit down, instead of vice versa.
2. Hugs. Hugs. And more hugs.
1. Giving my family and friends a great excuse for partying and hanging out with me and each other!!!

***

Honey

Honey
September 2013
Michael Gollin

 
I awoke this morning to the smell of honey. What a good beginning. Sweet vapors lingered from boiling teglach, dough balls in syrup, our family tradition for the new year.

Crunchy candy coating with almonds, sesame, and dates, and a glass of milk; and for dessert, a slice of newly picked golden apple dipped in Santa Fe honey made by brother’s bees.

Everything is possible with food like that to enjoy.

***

Grain of Sand

Grain of Sand
Michael Gollin
Rehoboth Beach
June 2014

 

 

2013-07 605 - Copy

Rain drops form a puddle
Sand grains shape a beach
Baby makes a family
The world is made of each

Words become a story
A note begins a song
Child sibling cousin spouse
And more before too long

Trees support the forest
Two halves make a whole
A board becomes a home
A brick defines a wall

Players make a team
Cells live inside a body
Students make a class
A building builds a city

Beans with rice in rice and beans
Potato in a stew
Yin in yang and yang in yin
Something else holds every thing

A breath inflates the sky
A moment lasts forever
I’m looking for the glue that binds
the single bits together.

 

yinyang

***

 

Hyphen

Hyphen
June 2014
Michael Gollin

 

| – – |

Two posts hold a hammock
slung between them.
And we must swing.

Two tall pillars –
birth and death –
rock solid facts,
conglomerated cause and chance,
secure both ends of life.

[Your name here]
19XX – 20YY

Each was born one day
somewhere by a mother –
Each will die one day
somewhere somehow.
No one asked to be born,
and few will choose to die.
All we control is the hyphen in between.

A hyphen printed has more atoms of ink than I have days.
A digital hyphen’s electrons outnumber us all.
Every living day is a birthday –
and there’s only one deathday –
until then we are ageless.
There’s only one age – alive.
So have a happy hyphen!

***

Banishing Falstaff

 

Falstaff

Banishing Falstaff
Michael Gollin
May 2014

 

–from Henry IV, Part 2, Act V, Scene 5:

Falstaff. God save thy Grace, King Hal; my royal Hal!
Henry V. I know thee not, old man….
I have long dreamt of such a kind of man,
So surfeit-swell’d, so old, and so profane;
But being awak’d, I do despise my dream.

Presume not that I am the thing I was,
For God doth know, so shall the world perceive,
That I have turn’d away my former self;
So will I those that kept me company.

Till then I banish thee, on pain of death,
As I have done the rest of my misleaders,
Not to come near our person by ten mile.

 

As soon as trouble-making Prince Hal was crowned as young King Henry V, he coldly spurned Sir John Falstaff, his longtime compatriot, and banished the old fat knight, who expected instead a comfortable patronage position. Jolly, wicked Falstaff, witty alter-ego to the young prince sowing his wild oats, was cast away.

Watching this cruel scene the other night, I recalled seeing the play in my youth. Back then, I identified with the boisterous prince. Now, I understood the new King. I realized that in my youth, I too had my own internal Falstaff, but then gradually banished the counter-cultural “misleader” in my early 20s as I tried to become a strong young man, much like Prince Hal when he awakened from his youthful dreams to become king. Many of my friends went through a similar process. Shakespeare, meet Freud.

Freud talked about certain necessary stages of development, and in general it makes sense that we have to pass through a series of phases before we form a healthy psyche. From a modern perspective, Freud’s rigid model of oral, anal, phallic, latent, and genital stages seems downright weird. But he got the big picture right — with tension between the conscious ego and subconscious id and superego, between rational and emotional, developing with maturity until they achieve some balance. Passages, like Prince Hal’s, are at the core of more recent theories about growing up, like Erikson’s.

I read a couple of years ago that Bruce Springsteen said our lives begin like a kid in a car, and as we age, new versions of us climb in and take the wheel, but our younger selves never get out, and we drive down the road all together, more and more crowded, trying to get along with each other (and not kick each other out). It’s quite a road trip in that life-mobile. Sigmund, meet Bruce.

Born as sucking infants, we explore our bodies and the world we inhabit, with our mouths, then fingers, and all our sensations, until our consciousness emerges. I cannot remember the mind of my baby self. No one can. What crazy chaos reigns for those first few years? Most people remember nothing before four or six years old and maybe that’s for the best.

I remember my 5th birthday, with my parents and Nana, at Rochester’s Monroe County Airport. There were airplanes outside the picture windows, and sparklers in the cake. Later that summer my family went to Europe for a year and I remember astonishing amounts of detail, where we lived in England and Spain, our car, our conversations, museums and festivals.

Ages 6-12 I lived a straightforward American middle class childhood, although because it was the 1960s and my parents were both academics, I had a fair exposure to literature and art, folk music, and early hippie culture. I looked up to Pete Seeger and Woody Guthrie. When my family went to a 1970 performance of Hair, the antiwar and druggy messages were unremarkable to me as a 12-year-old, compared to the surprise of onstage nudity!

In 8th grade, I was a year young, having skipped 6th grade. Some of my precocious friends decided to get cigarette papers and roll mint tea cigarettes from tea bags. I joined them after school one day, and remember the burning feeling of the smoke, combined with the cooling effect of menthol. Smoking cigarettes was still cool back then, but we knew we were misbehaving.

During high school, I lived my wild oats years lagging behind most of my circle of friends in malfeasance. But I confess I made some bad choices along the way – after all this was the age and era of the counter-culture, of antiwar demonstrations, of sex and drugs and rock and roll. We were wild and rebelled against the system. Falstaff was among us; we were Falstaffian. Sorry, I’m not going into detail. Trespassing is one troublesome activity I will admit to. A few of my friends would scout out water towers and construction sites which we would enter and climb. We did not vandalize, or do damage. Our urge was more curiosity, freedom, and adventure than mischief.

Those were simpler times. I did my school work, worked my jobs, and graduated among the top kids in my class, and was admitted to Princeton. I was a young prince. I was doing more right than wrong, and I survived high school without causing harm to others, or lasting harm to myself. But I lacked direction or focus to match my curiosity about nature and suspicion about society.

In college, my poor study habits caught up with me. Late nights bullshitting with roommates, sometimes drinking, distracted, I missed morning classes and although I did all the work, I did less than many, with less intensity, and became used to missing the A’s I had been accustomed to. My psychic Falstaff had some fun, but I was not very happy, now that I think about it. I was repressed emotionally and immature. There were 2.5 males for each female and my few serious relationships were troubled. At graduation I learned that out of 41 seniors in my biochemical sciences department, I was the only one who didn’t apply to medical school. I recall watching a young janitor polishing the floor at the new mall, and realizing that if I didn’t find some higher purpose in my life, that might be my job, too.

Instead I found myself a doctoral research position with Ilan Deak, a rising young professor in Zurich, continuing with fruit fly research I did for my senior thesis. I had a blast in Switzerland while it lasted. Officially I had a half stipend, meaning in my calculation I owed the lab 22 hours a week. (Full time for hard-working Swiss was 44 hours.) I worked more than that, but I had plenty of time for beer halls, socializing, traveling the Alps, to Italy, Yugoslavia, and playing up being the cool American – spinning records as a DJ at the International Students Club, picking up girls, and being picked up. I felt like a young prince again, on the town.

About one year in, my professor died after ingesting a neurotoxin we had in the lab. The insurance company kindly called it an accident but we all knew it was suicide. Later I understood he had major depression, but back then it was incomprehensible to me, traumatic. A life with such great potential, cut short. I had to grow up fast and make some adult decisions. I decided to stay, for a while, and was taken in by another lab, under another professor. That lasted two years.

Meanwhile, I was gradually absorbing some of the famous Swiss work ethic. They were punctual, organized, and methodical, and used their time effectively – whether at work or play. I took up viola again, after a hiatus through college. I learned German, then Swiss German, taught English, and weighed my options. Marine biology? Enology? More and more, I searched for a path, and looked less and less for Falstaff and his gang.

The election of right-wing Ronald Reagan in 1980 shocked my liberal conscience and led me back to the US. My political interests, facility at learning languages, love of discussion and debate about science and everything else, and a recognition of my blind side in writing and history, all combined in the decision to apply to law school. And so I arranged to complete my Master’s degree, and returned, the wrong way, via Moscow and the Trans-Siberian Express, to Tokyo, a full moon climb of Mt. Fuji, and back to Boston University for law school in 1981.

Law school was serious work, and by that time, like Prince Hal/King Henry, I had effectively banished Falstaff. The role of a lawyer, the responsibilities, I took them seriously. I had developed focus, intensity, drive. Of course, being a young man in New York in the mid1990s, I had plenty of fun. But I worked hard, rose in my profession, and maintained my first long-term relationship, followed by meeting my lovely wife, with whom I’ve been for 28 years – half my life. I settled in to my career path, and sought to balance paid work, public service, play, and raising my three wonderful children.

So, could Falstaff ever truly be banished? No. Shakespeare had King Henry promise a healthy stipend to the free-wheeling knight, and later, he revived Falstaff, the character, reputedly at Queen Elizabeth’s request, in The Merry Wives of Windsor. Falstaff remains one of the most popular characters in drama, and his type permeates modern entertainment (think The Hangover movies).

Likewise, my psychic Falstaff did not remain banished, just muzzled and speaking more modestly. I found a profession, patent law, where my favorite clients are inventors, innovators, restless iconoclasts pushing hard to reshape the world, rather than just trying to fit in. These people have a lot of the young prince in them, and, I guess, a touch off Falstaff. Me too, it seems, and together we have accomplished a lot of good over the years.

Even as I play the role of strict father and upright citizen, from time to time, the playful, rebellious side of me will surface — for amusement, or to cope with life’s absurdity and trouble by cunning ploys. I try to use my past to teach cautionary tales to my children, about taking calculated risks and learning from my mistakes. And of course I still get into trouble – just not too often.

Coming back to Springsteen’s life-as-roadtrip metaphor:

Now, the most recent me (the one with the unfortunate progressive illness) has taken the wheel of my life-mobile, and I’m looking around at all the younger (and healthier) me’s riding along. I’m teaching myself lessons about how to enjoy this phase. I enjoy tweaking people if they get too serious. I rely on my wits to rebel against the unpleasantness that confronts me, and I see that being sick offers new freedoms from social expectations – a chance to act out, a bit like Falstaff.

Not that this is good compensation for losing my hard-won independence bit by bit. But I do find widening circles of people who are happy to help, and to join with me as I find new ways to play the game of life.

Sure, life is not all fun and pranks, and growing up means somehow banishing Falstaff from our regular circle. But I’m glad he’s still around, not too far away, when we need him.

***

Passages

Passages
Michael Gollin
February 2011 – for Mom

 

I.

We enter life bound to mother by a tube
which must be cut, or gnawed off, before we are free.
There is a tribe that saves the dried umbilicus
of each newborn and ancestor together in a sack.
My wife, untethered, gave our three children life.
As soon as each could breathe,
I cut the cord, a wet gift to medicine.
Faintly blue, our first puffed oxygen until she blushed.

Fetal heart sets the beat.
Then the lungs join in.
Music begins at birth and
the gentle rhythm of life proceeds.
The eternal drums —
Ba bump. Ba bump. Ba bump. In. Out.
Ba bump. Ba bump. Ba bump. Ah. Hah.
We beat and breathe. Then speak. And sing.
And eat and drink and kiss.
Tempo fast or slow, crescendos our own.

Life beats on to its finale.
The music stops, a chair removed.
One must leave. But when?

 

 

II.
Medical metronomy keeps the beat.
Beeps and bings pace pulse and breath,
monitors and ventilators sing a song
of intensive care.

Hernial strangulation, intestinal incarceration,
small bowel resection, septic shock.
One tube cut out, new tubes stuck in.
Intravenous needles, arterial catheters, nasogastric feeding, ventilation, urinary catheters, dialysis line,
aggressive flow of fluids for life.

Defying doctors, at three A.M.,
my mother yanked the ventilator tube
clear out of her throat.
ICU alarms ring stat!!

III.
“She hates that tube,” Dad said,
recalling one ventilator day post-surgery,
heart repaired at 80.
This time, surprised, a week
was more than she could bear.

Why? When? She mouthed around the tube
and frame that blocked her lips, her breath,
her speech and swallow.
“As soon as possible,”
she thumbed on the word board.

Now she’s free. Tubeless, behind a puffing mask,
enriched, then sniffing whiffs of canula oxygen,
Then simple breaths of just plain air.
She is made whole, head and body,
can eat food by mouth, drink,
speak with love to those who love her.
Heart beat steady, tempoed, pressure up and down,
breathing in and out.

She can’t believe it. Bad but good.
One by one the staff removes her tubes.
She returns to her source, her body,
born again, alive, alone,
except for all of us.

Suddenly

Suddenly
January 2013
Michael Gollin

Things can happen suddenly.
Like how I am just sitting there,
in the jungle,
at a lecture, in a chair.

When a flash streaks down,
from above, like a whip,
strikes my hand, “PLOP”
with a cool strong grip.

A heft of light green
speckled legs and tail,
I SHOUT and fling it off
with an emaciated flail.

It goes beyond reality,
SPLAT on the wide plank deck. Oh!
A long split-second later,
I see that it’s a Gecko.

No one, man or lizard,
is worse for wear,
just startled by the other —
something we can share.

***

Crossing the Delaware

crossing the Delaware

Crossing the Delaware
May 2014
Michael Gollin

 
A good man, John O’Brien, died of ALS a month after I met him. He was kind and strong and generous. His wife said his disease was like a runaway train, and they were struggling to keep ahead of it. John gave me my first cane, because he had progressed to a wheelchair already. He said, in a formally gentle way, “If you’re willing to accept it, I would be honored to give you my cane. I hope you use it well.” I now switch between three canes but John’s holds special significance. It helps me keep going.

For me, ALS does not feel like a runaway train. It progresses more like a hostile army, marching relentlessly forward, and we have to keep moving to stay ahead of it. What choices do we face when confronted with overwhelming force? Surrender? Fight a losing battle? Those are not good options. The answer came to me last week at the annual ALS Association conference and advocacy day on Capitol Hill, where I felt like part of an army with canes and wheelchairs, together with our caregivers. The best that ALS patients and our families can do is to act as soldiers in orderly retreat, pulling back slowly, strategically, skirmishing, holding together, waiting for our opportunity to go on the offensive, like Washington’s Continental army crossing the Delaware.

In August 1776, the Continental Army was stationed in New York, when the British invaded with a superior army and overran the city. Washington and his generals realized they could not hold, and so they fell back through New Jersey all the way to Valley Forge, living through “the times that try men’s souls.” Then, the day after Christmas, by crossing the icy Delaware River, they surprised the British troops stationed in Trenton and began to advance back through New Jersey. Although the revolutionaries never recaptured New York by force, they reversed the enemy’s momentum and went on to win the war.

So we people with ALS go on, accepting no shame in an orderly retreat because that is the only good option, while we scout for opportunities to strike back and retake our territory. What do those opportunities look like? For me, it means volunteering for clinical trials for new drugs and treatments like stem cell therapy, and working on ways to accelerate scientific research in neurology.

I’ve participated in three clinical trials, and completed two. One did not succeed, and the other is ongoing. One, the Neuralstem trial, involved very invasive prolonged surgery to implant neural stem cells directly into the spinal cord, and immunosuppression drugs for life. The risks were high and frightening. But early results showed promise. I thought long and hard, and took lots of advice. I consulted with several people who had been through it. They all said that whatever I decided would be the right choice. As I studied the details, it seemed more and more like a space launch. I dubbed the volunteers “ALStronauts.”

My brother described three brains involved in my decision. The primitive lizard brain, concerned with survival, is scared of risk but eager for a cure. The angel brain is willing to sacrifice to benefit others. The Buddha brain can accept whatever happens with equanimity. I decided to volunteer, following the lizard brain, competitive, going on the offensive, in hopes it would help me, and others. I knew that pushing hard would bring hope to me and all who care about me. I also realized if it went bad, I could always turn back to the Buddha brain.

I went through five days of rigorous testing in Boston, blood work, hours in MRI machines, strength and breathing tests (upright and supine), and physical examinations. Ultimately I passed all but one test. Supine breathing had to be at least 50% of normal, and though it barely reached that in one out of my many tries in January, my surgery wouldn’t be until March, and my breathing was declining slowly but steadily. The doctors considered requesting a waiver of the 50% requirement, but they told me that my weak breathing raised safety concerns. The alternate candidates had stronger breathing. So my angel brain led me to withdraw gracefully from the trial, happy that some other deserving person would take my spot. That surgery went ahead and I hope it was a big success for the brave volunteer.

I guess I’m like the soldiers left behind to guard Valley Forge while Washington led the force across the river. They couldn’t all go into battle, but they were all in it together.

Meanwhile, like it or not, I remain on active duty in an army of 30,000 people in the US, a half million worldwide, with ALS.  Multiply those numbers by our spouses, children, parents, cousins, friends, and you have millions. We advance, backwards, scouting out healthy practices and alternative therapies to keep us going longer. We adopt new practices and technologies to aide with respiration, nutrition, speech, and mobility. We accept help and we help others. We deepen bonds with family, friends, colleagues, and comrades in arms. We soldier on, so that when the time comes — and we know it will — we will be ready to cross our Delaware, in force, holding high the flag of life, health, and hope for a cure.

***

Cool Green Flame

Cool Green Flame
May 2014
Michael Gollin

The oak tree blooms with a cool green flame,
not the orange fire of seasoned wood.
Sunlight coils inward, photons kiss chlorophyll
with energy that fuses sugar from air and water,
and busy enzymes do their duty,
conceiving leaf, growth, tree, life.

Green are the photons that are not used, wasted,
reflected back to please my eye.

I am a tree.
I, too, breathe air, drink water,
take energy, and burn (but with biothermal warmth).
I lose my leaves. My limbs break and fall.
Yet I grow taller, adding rings,
as long as I can find the light.

***

I’d Rather Be Running

I’d Rather Be Running
-Running Song
(mentioned in http://www.innovationlifelove.org/2013/04/01/running-for-life-the-running-song/)
August 2012
Music and Lyrics by Michael Gollin

C2-G-E-C DDEDC C2-G-E-C DDE-C

Life is glory
When I go running
Nature flowing
Me striding by.

Rythmic breathing
All is in motion
Legs propelling
Heart keeping time.

Trees and bunnies
Witness my rapture
With my memories
I’m never alone.

Moving forward
Along my chosen pathway
Then turning ‘round
I run home again.