New E-dition of My Book

 
Innovation Life Love: Reflections on Mortality
Now Downloadable from Amazon

Innovation Life Love: Reflections on Mortality is now available as an ebook on Amazon.com. Author Michael Gollin  was diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s Disease) in 2012 and began blogging about his experiences and philosophy, forming the basis of the 262-page book.
 
Innovation Life Love offers insight into the unusual challenge of knowing one’s ultimate fate of progressive paralysis and deciding to make the most of every day. “In my personal and professional life as patent attorney, author, professor, and non-profit entrepreneur,” Gollin writes, “I’ve tried to be a productive member of all my communities: family, friends, work, home, country, and planet. When I was diagnosed with ALS, I was dragged into a terrifying new situation, but I realized how lucky I’ve been in life, and I quickly resolved to make the best of the situation. It has been surprisingly liberating to explore this uncharted territory.” In it, he confronts death head-on, contemplating dead wildlife and evolution in the Galapagos and feeling echoes of his ancestors in the Lithuanian woods where they were murdered.
 
Innovation
Innovation Life Love was adapted from Gollin’s writings—poetry, essays, photographs, and speeches—that have appeared on his blog, innovationlifelove.org. Gollin also authored  Driving Innovation: Intellectual Property Strategies for a Dynamic World (2008), available in hardback, paperback, and Kindle versions on Amazon.com). With Innovation Life Love, Gollin demonstrates how he has applied creativity and problem-solving skills to the physical, technological and emotional challenges he confronts every day.  

Life and Love
Insights into the meaning of life are thrown into sharp relief by the prospect of one’s own death, according to Gollin, who is compelled by love to pass on what he has learned and experienced in life. He succinctly answers questions about life, setting goals, and making decisions. He invites us to appreciate the beauty of nature by sharing a rafting trip down the New River and a hike the Sun Gate of Machu Picchu. Readers worldwide have been inspired by Gollin’s wisdom, courage, and optimism in the face of devastating physical illness.

Innovation Life Love Availability
Innovation Life Love is available for immediate download for $5 at Amazon.com. The print version is available on Amazon.com for $14. Read more about Michael Gollin on Amazon.com, his blog site, and at the Venable LLP website.
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For more information, contact:

innovationlifelove@gmail.com
For more information on Innovation Life Love:
Innovationlifelove.org
Amazon.com website.

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.

https://www.amazon.com/dp/1514315815/ref=cm_sw_r_sms_awd_SVFcwbAXDE4HS

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!

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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.
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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.

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.

Falmouth road race 2013

In August 2013, one year after the 7 mile race that convinced me I was sick ( see http://wp.me/p3lGN4-2), I completed it again. With a kevlar brace on my right foot, and niece Emma accompanying me, I used my amyotrophic jog, 2 minutes jogging, 4 minutes walking. At the bail out point 4 miles in, I felt OK so we continued. By the end in Falmouth Heights, I had an entourage of over a dozen family and friends alongside. I was the last guy to cross the finish line. My best race ever, although the wheelchair in 2014 with Max pushing was easier for me. I wanted to prove that no matter what happens, we can still try our best and achieve difficult goals.

Card Project 2. Explanation

This was reported from my oldest friend, Judith Harway. Guerrilla art revealed. Brilliant, kind, and well received. Look at the comments under Card Project. They come from as far as London.

Everlasting thanks, Judy and all your co-conspirators.

***

My Ice-Bucket Challenge
My Ice-Bucket Challenge is a guerrilla art project created for the 2015 exhibit of the Midwest Jewish Artists Laboratory. More to the point, it was created for my brother, Michael Gollin, who is not a blood relative: we were born nine days apart, our parents were close friends, and we shared a practically perfect childhood full of summers running wild in the woods around Santuit Pond. Diagnosed with ALS in Fall 2012, Michael began blogging at http://www.innovationlifelove.org, and I began to see the importance of helping his inspirational writing flow out into the world.

To that end, I paired brief, lyrical passages from http://www.innovationlifelove.org with winsome illustrations by artist/activist Sylvie Armstrong (my daughter), and created a set of eight cards, each of which has a hand-written message on the reverse side (“This project is to spread awareness of ALS, the motor-neuron disease made famous by the 2014 Ice-Bucket Challenge. Since he was diagnosed with ALS in 2012, my brother has been blogging about the wonder and fragility of life (www.innovationlifelove.org). In a sense, this is my personal Ice-Bucket Challenge – Please help us make good-will and encouragement go viral by leaving this card where someone else might discover and enjoy my bro’s words. And please visit http://www.innovationlifelove.org — let us know where you found this card!”). In a hand-addressed envelope (“If you find this, it’s for you – Please open!”), each card was either left in a public place to be discovered by random strangers or given to a friend. For four weeks – April 27 through May 24, 2015 – I left cards around my hometown of Milwaukee, reaching a total of 305 cards distributed. During that time, visits to Michael’s blog soared, and comments expressing appreciation, solidarity, prayers, and love trickled in.

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Documentation of My Ice-Bucket Challenge was included in “Living Waters,” an exhibit by the Midwest Jewish Artists’ Laboratory (Milwaukee, June 3 – July 31, 2015). The card templates have since been passed on to other siblings and loved ones, who, at the time of this writing, continue to place cards around the country, eliciting more readers and keeping the comments flowing in.

Judith Harway
Milwaukee, June 2015

My Ice-Bucket Challenge by the numbers:
Phase 1: April 27 – May 24, 2015 – Cards placed by JH.
Phase 2: After May 24, 2015 – Cards placed by Kathy, Maura, and other family.

# OF VISITS TO innovationlifelove.org: WEEK BEGINNING –

Monday, 4/6 125
Monday, 4/13 30
Monday, 4/20 143
************************************************
Monday, 4/27 394
Monday, 5/4 270
Monday, 5/11 503
Monday, 5/18 455
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Monday, 5/25 187
Monday, 6/1 271
Monday, 6/8 248
Monday, 6/15 211+++++

NUMBER OF CARDS LEFT IN WHAT PLACES, April 27 – May 24, 2015 –

Coffee shops 54
Public libraries/bookstores 28
College campus locations 27
Community/nature centers 24
Friends/students/family 94
Little free libraries 18
Other (bus shelters, businesses, etc) 60
TOTAL: 305

BIO Convention 2015. Michael Gollin remarks on innovation

I was invited to speak about patents at the Biotechnology Industry Organization Convention in Philadelphia. I couldn’t go. Instead they showed questions 1 and 7 from my MDA video interview here, and the following remarks were read by ten colleagues/clients/friends. Very touching.

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I wish I could be there at BIO with you in person. It’s always an honor to speak there. Unfortunately illness is stealing my abilities one by one. Anyway I’m glad to have this opportunity to share my thoughts and feelings about innovation, thanks to the power of written text.

I have a confession to make. I love my job. I’ve been a patent attorney for over 30 years and for more than half that time, I’ve been a partner at Venable in DC. It’s a wonderful firm of excellent lawyers focused on great client service performed with good cheer and collegiality. My firm has a strong community spirit and everyone has a sense of humor or at least puts up with it. We also have the best bocce players in the profession and we challenge any of you to a match on our rooftop bocce court.

My job, simply stated, is to help people put their ideas to work, to heal, feed, and fuel the world and make life more enjoyable and productive. Bringing new ideas forward is difficult and uncertain but it is an honest living.

I’ve done all kinds of patent work for all kinds of clients, collaborating with many colleagues, and I’ve learned a few lessons along the way.

•  I’ve prosecuted patents on recombinant DNA, synthetic genomes, vaccines, pharmaceutical compounds, immunoassays,    gene therapy, insect-based protein production, medical devices, and grain crops. The Inventors come from all over the world and whether they are humble or arrogant, they share a passion to use their wits to improve the world. Success with a new biotechnology is arduous, improbable, and expensive, and globalization complicates things even further. Individuals and organizations would not dare to try to bring their inventions forward without patents. I’ve seen investors back out of promising technology because of failed efforts at patent protection. 

Licensing and transactions taught me how valuable patents can be. Although most inventions go nowhere, the few that get commercialized can make their owners very wealthy. I’ve always felt that these biotech park people deserve success more than wall street.

• In litigation I learned that accused infringers are just as passionate about their right to use the patented technology as patent owners are about excluding them. Patents have limited scope and duration and it should be no wonder that these disputes are fought so fiercely, in the US and around the world.

My appellate work, including amicus briefs for BIO, confirmed the subtlety of patent law and the far reaching effects of changing doctrine. In my view, the past few years have brought an unfortunate confusion to patent law, particularly the supreme Court’s holdings on patentable subject matter.

 Internationally, I’ve represented research institutions all over the world and have been heavily involved with biodiversity.   People everywhere want to put their ideas to work but most lack the expertise. So i started  PIIPA, public interest intellectual property advisors, to leverage the volunteer pro bono skills of IP attorneys to help developing country clients. We have a network of thousands of volunteers. Unfortunately most donors have trouble seeing the connection between IP and economic development. 

I’ve used my experience and insights to create a course in business and law school on IP strategy. Surprisingly, students who begin as IP illiterates can provide competent analysis after one semester. The key is to focus on each aspect of IP, in each sector, as part of a dynamic balance between exclusivity and open access. An example is the transition from branded drugs to generics when patents expire.

My book and other writings explore these topics in depth.

All this has taught me the simple lesson that patents are not simple. Yes, the patent system is complex and changing. We should not accept efforts to oversimplify it. I may even be guilty of simplification in these brief remarks. My hope, anyway, is to convince you to help reduce IP illiteracy by teaching what you know and challenging people who oversimplify.

A final note. I have had ALS for about three years. It’s no picnic to deal with an incurable progressive terminal disease. You can bet I’m eager to accelerate the search for a cure and from what I’ve seen we are entering a golden age of research into curing neurological disorders. Weakening the patent system won’t help me or future victims of this disease. Every one who cares about cures should be prepared for a constant struggle, decades and even centuries long, to keep patents working to drive innovation.

As I said, I love my job, and sharing these thoughts is an important part of my responsibilities. Thank you for your attention.

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Award for advocacy

I was happily surprised last Monday to receive the ALS Association Rasmussen advocate of the year award. Jill and ALSA’s Steve Gibson tricked me by saying I should prepare a few remarks for the luncheon. I was a bit suspicious when three of my partners from Venable showed up, but the firm has been honored by ALSA for a massive ice bucket challenge involving nearly 100 people last year, so they fit right in with the DC/MD/VA chapter tables among 700 people from across the nation.

Eventually the introduction clued me in.  For the first time I rolled up to a stage. Jill helped me receive the beautiful crystal award from CEO Barbara Newhouse. Fortunately I had typed “can you hear me” in my Speech Assistant talking app because it took a while to get the microphone working. Then I ran my speech.

We are not alone

I savored the standing ovation joyfully, with gratitude, and compassion for the crowd of people with ALS, caregivers, survivors, and supporters.  Perhaps it was vanity that made it hard to leave.

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Unable to say thank you, I smiled and nodded to those who congratulated me afterwards as I made my way to a gathering of people with ALS, most in wheelchairs, for a photograph. We were quite a mob.

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We are not alone

Remarks to the ALS Association annual advocacy conference

Thank you to the ALS Association for inviting me here. My name is Michael Gollin and ALS took my voice last year, but not my will to speak.

Remember. I am not alone. You are not alone. We are not alone.

I believe the best way to pursue happiness is to find a cause, a purpose in service of the greater good. I’ve been antiwar, pro environment, pro civil rights, pro democracy, pro science and pro innovation. I’ve tried to be a productive member of all my communities. Family, friends, work, home, country, and planet. I’m a big fan of creativity and being a patent attorney advocating for my clients came naturally.

When I was diagnosed with ALS, I was dragged, kicking and screaming, into this new community and I quickly resolved to make the best of the situation.

I started a blog and wrote this haiku poem:

Terrible news, but,
I’m mining silver linings.
Play the cards you’re dealt!

Advocacy has helped me play my card hands. Promoting a larger cause is a big part of feeling empowered, proud, and full of purpose during a most difficult time of life.

Here is some of the advocacy that I’ve done since my diagnosis in October 2012.
February 2013 testified to FDA in favor of accelerating approvals for ALS drugs.
May 2013 and 2014 ALSA advocacy on capitol hill.
Summer 2013 I developed a complete business model for a non profit ALS alternative therapy patient information resource.
November 2014 I testified in the house of representatives for ALSA in support of the modern cures act.

I took on pro bono representation of MDA, helping them improve their intellectual property policies. With colleagues at my law firm, Venable, we took on some lobbying work for ALSA and also advised the local chapter on corporate issues.

Also I participated in 6 clinical trials, completing 2.

Writing about my feelings, thoughts, and experiences has helped me keep my sanity. I publish poems, essays, and advocacy information. This has kept me connected and given me purpose. I get lots of solidarity both from people with ALS and the support community.
I have readers all over the world, including a big following in Brazil, because ALS is a worldwide disease.

Please visit my blog. It’s called. Innovationlifelove.org. And please be as active as you can in advocacy.

Remember. I am not alone. You are not alone. We are not alone.

Thank you for your attention.