Crossing the Delaware
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.