Hope

Hope. I haven’t allowed a lot of that lately. I find that spinal cord injury is best managed by keeping one’s thoughts firmly in check. Not a lot of reminiscing of life pre-injury, not a lot of wishing or dreaming about how different life would be if I were whole. At the same time, I do all I can to maintain my body so that if or when a cure comes, I’ll be eligible to participate. It’s this crazy balancing act of will, hope, acceptance and denial. I accept the dichotomy.

I expect something to come along that will result in functional gains in my lifetime. I just don’t pin a lot of hope on what that means. Will I be able to kick this chair to the curb? Will I be able to stand up and see what’s on the top shelf in the cupboard or at the grocery? Will I gain function that will improve my quality of life and perhaps even my longevity? I try to stay disciplined and not speculate too much.

When I slip, there is inevitably a price to be paid for allowing too much hope. Some experience will cruelly frame the limits of my current situation. An infection will fester and land me back in the hospital near-death. These episodes are followed by moments of deep despair and crushing depression. Better to stay rigidly neutral rather than ride this rollercoaster.

Then, Tucson happened and nothing will be the same.

Four days ago I crashed a private presentation by Hans Keirstead in Tucson. The hosts were very kind and welcoming. I was one of two people there in chairs and I had a chance prior to the presentation to talk to many of the members about what it meant to live with a spinal cord injury.

Meeting Hans Keirstead was the equivalent of meeting my favorite rock star. I was breathless. He is young, handsome and very charming. I saw no trace of the stereotypical stuffy academic in him. Before the presentation, he spotted me off in my little corner trying to be invisible; “Hi, I’m Hans” he smiled. I introduced myself and we chatted a bit. I told him the quick version of my attendance. The meeting was called to order and I found Hans sitting next to me as the hosts began their meeting and quickly attended to some other matters before the main presentation. The president of the organization invited every one to stand for the Pledge of Allegiance. Afterward, Hans leaned over and whispered conspiratorially, “I’m Canadian” I whispered back “that’s ok, I didn’t stand.” We shared a quiet laugh and then he was called to the stage.

In the dimmed auditorium I sat rapt as Hans lead us slide by slide through the complexities of his work. His ability to speak in every-day terms and retain the passion and scope of his work made his presentation all the more compelling. Time flew. Several times, I had to remind myself to breathe. Slide-by-slide, hope took root within me. It took all the discipline within me not to grill him on every slide for more details. I listened as he talked about how his work had progressed from acutes to chronics, how human clinical trials in a treatment for chronics were due to begin in months and how his lab was able to create the one thing my body cannot; motor neurons. I almost cried out when he showed an mpeg of muscle, grown from those laboratory motor neurons fire. Real, working muscle tissue! As if he could hear my mind screaming, he played the mpeg again. Hope fully germinated.

After the Q&A, I waited my turn to say my goodbyes. My host approached and bent down on one knee to speak to me eye-to-eye. “Would you like to join us for lunch?” My heart did the little dance of joy my paralyzed body could not. “Yes, please” I croaked. Thus, I found myself sitting next to Hans Keirstead as he talked about his work and his life. The more I learned about the man, the more confident I became that this was the researcher to back.

He talked a bit about his recent marriage, surfing, his love of flying helicopters and his time at Cambridge as the youngest person in his program in 200 years. He also talked about knowing at the age of 11 or 12 that he wanted to fix the brain and the spinal cord. Inside of Hans lives a desire to end the suffering of the many afflicted with neurological disorders. Conditions as diverse as SCI, ALS, MS, Parkinson’s and Alzheimer’s share commonalities that mean what works for one impacts other conditions as well. He runs an amazingly prolific lab. If he were not a stem cell researcher, I could easily see him as a billionaire internet entrepreneur.

I am not one prone to spiritual hyperbole. Yet, hearing Hans speak, looking into him, I feel that this man is destined to cure paralysis. Any chance that I can remain passive about the promise of stem cell research is gone. I’ve drank the Kool-aid and I am a believer; in the science and the scientist.

Lunch ended far too soon for me and it was time to part. I said my goodbyes to new friends with hugs and handshakes. Then I was in my van alone with my thoughts. The totality of the day’s events settled in and I began to sob from pure joy. On the drive home I allowed my mind to wander. Will I walk again? Maybe just stand eye-to-eye with another person? Would I hike Piestewa Peak again? Maybe one day I will feel sun and salt water on my legs and wiggle my toes in the sand. Maybe I’ll be able to physically express the joy my heart and spirit can barely contain. Maybe one day soon.

In less than 2 weeks I have the honor of visiting Hans’ lab and learning even more about his work, its progress and implications. I’ll share more then.