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.

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.

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