Bringing CNS Members Together to Make Children’s Lives Better


“To Be”

By Roger Larson, CAE | Executive Director

Roger Larson, CAE | Executive Director
Roger Larson, CAE
Executive Director

It is quite true what Philosophy says: that Life must be understood backwards. But that makes one forget the other saying: that it must be lived – forwards. The more one ponders this, the more it comes to mean that life in the temporal existence never becomes quite intelligible, precisely because at no moment can I find complete quiet to take the backward-looking position.
– Diary of Soren Kierkegaard

I began the month quoting one Dane (Hamlet: “To be or not to be?”) and will end it quoting another. What Kierkegaard intended by setting “understanding backwards and living forward” side by side seems simple enough, certainly more so than most of what he wrote. And yet.

And yet, true to his reputation as being the key 19th century forerunner of mid-20th century existentialism, the observation leaves us stranded in the midst of a yawning gap – a baffled and baffling Present, this portentous, noisy “NOW” – that so often finds us flailing and failing to bind together in creative and meaningful tension a past one could understand and learn from and a future one could imagine, predict and prepare for with some measure of confidence and hope.

My “COVID-Spring” has largely been spent trapped in Hamlet’s “To be or not to be,” wondering in the wake of first the AAN’s, and then the ANA’s cancellation announcements if the Child Neurology Society’s long anticipated joint meeting with the International Child Neurology Association in San Diego in October had any real chance of coming off as planned. Stuck in the echo chamber of the “noisy NOW,” unable to find the “complete quiet to take the backward-looking position” Kierkegaard deems needful, I often felt like a tennis ball batted back and forth between those who thought me crazy for still holding out hope of meeting in October and others who thought me craven and cowardly for even entertaining doubts about the viability of something so long anticipated and consequential as this joint congress.

Two things stand out for me illustrating the way in which the COVID-19 pandemic has damaged and obscured the bridge between understanding backward and living forward; both have, at the same time, underscored how important it is to hold out hope to the very last instant of living forward toward what could be a life-changing, life-defining experience in San Diego.

The first is the mere fact that no CNS Connections has been posted or sent out since last October. The focus every year of the Winter issue of CNS Connections is on reviewing the previous annual meeting via a rich collection of over 125 photos, and previewing the coming fall gathering of the tribe by posting a preliminary scientific program and announcing the award lecturers. I was busily engaged in preparing that Winter issue and simultaneosly sketching in the site map for a robustly redesigned CNS website when the COVID-19 crisis began building in earnest two months ago. With so many CNS members suddenly sidelined, working from home and wondering anxiously what the immediate and long-term future at their institution specifically and child neurology generally might look like (to say nothing about larger life-and-death, childcare and home-schooling concerns, etc), I felt it would be grossly insensitive and offensively naive, nostalgiac and even narcissistic to send out a “Happy Days” recap of the 2019 meeting in Charlotte, NC, a meeting that was by nearly all accounts the biggest and best ever. And I felt equally uncomfortable pushing an international meeting in the midst of a nearly total global lockdown. A real-life (or reality show) POTUS, who should have known better, who had access to intelligence and experts I could only hear, see and read about 2nd or 3rd hand, could indulge in fantasy and posit the absence of peril by April; I could not. It would have been wrong in the midst of so much disruption, anxiety and uncertainty to ask members to look beyond the insistent present to commit to a future that could wait for clarification. We still had – we still have – time.

The second thing that stands out for me is how impossibly long ago and faraway anything “BC” (Before Covid-19) now seems. I am thinking in particular about my visit to Boston Children’s Hospital in mid-February to videotape 16 conversations with faculty members old and young as part of our newly launched “Child Neurology: Past, Present and Future” project. These and other videos to be captured at programs around the country in the coming year will be featured on the “Basement Tapes” section of the new website (more on this when the site launches later this spring/summer). The highlight of those sessions – and the primary reason why I began in Boston – was the taped conversation between CNS President, Phil Pearl, who will preside over this year’s joint CNS-ICNA Congress, and past-CNS President, Joe Volpe, who presided over the last joint CNS-ICNA Congress held in the United States back in 1994. (Click here to view:

Dr. Volpe noted that while it was a great program for the time with great talks and towering figures, looking back on it now, “it seems almost primitive in some ways.” He remembered in particular Huda Zoghbi’s talk on the impact of neurogenetics in child neurology: “I think that was the only talk that dealt with molecular neurogenetics at that meeting, whereas today, as Phil said, probably every-other-talk would be about molecular neurogenetics in one form or another. So, 25 years of explosion in neurogenetics…it’s pretty amazing.”

Asked by Phil what he might tell young neurologists and medical students interested in entering the field, Joe replied without missing a beat, “This is an absolutely fabulous time to go into the neurosciences. If one looks at the body of diseases that will affect humans, neurological disease has to be among the most horrendous. And we’re in an era when those are going to fall one by one. I really feel that way. I mean, the folks in adult neurology are saying, ‘we’re not too optimistic about Alzheimers or Parkinsons.’ (But) I think these horrible genetic disorders that you (Phil) and I have dealt with since we were kids it seems, they’re going to be conquered. This is just a great time to get into (the field)!”

So, “understanding backward and living forward.” If you were at the meeting in 1994 – meaning you were then at the outset or midpoint of your career in child neurology – you will no doubt share the same sense of amazement at the progress made since then, and feel the same high level of eager anticipation Phil and Joe expressed in February about being a part of this once-in-a-generation meeting in October. You will want to be there.

If you were too young in October 1994, maybe even too young to have started kindergarten, and you have just entered child neurology, only vaguely aware of living through and contributing to a revolution – in much the same way that, as Phil notes, people in 1776 or 1789 might not have been aware they were living through a revolution – you will want to be there.

In trying to both “understand backward and live forward,” I fully acknowledge the need to understand that the world has changed in the past three months in ways that make living forward – even a small step forward, as small say, as four or five months – difficult to imagine, predict and prepare for. Many of you already know you that “California Dreaming” is, for you and other colleagues, no longer an option. But many still very much hope to come and make a statement alongside their international colleagues on behalf of science, research, and affordable, accessible care for children and families in real need of hope; a survey taken by a sampling two weeks ago showed more than 60% describing themselves as “definitely” or “likely” to attend. Having waited this long, for something this important to those CNS and ICNA members, old and young, who know this chance might not come again soon, I have – we have –no choice but to wait a little longer. So, for the time being, the answer to the question, “to be or not to be?” is still very much “to be”.