Lessons from 2020: Living in the moment with someone for whom it’s not a choice

As I write this, we have lost more than three hundred thousand people to COVID-19 in the United States alone, and medical experts are predicting it will get even worse. Yes, a vaccine has just been approved, but it will still be months before enough people have been vaccinated to make a dent in the pandemic. The debilitating effects of illness, loss of loved ones, joblessness and financial insecurity, and isolation from friends and family cannot be underestimated. And yet, for many people, there has been a silver lining to the pandemic. Precisely because of the restrictions and cessation of social activities, we have had the opportunity to be doing less and being more. It has been an opportunity to reflect, to pivot, and to be open to new beginnings when the “all clear” signal is given. For me, it has also been an opportunity to experience what it really means to “be in the moment”, by living with someone for whom that is a way of life.

Being in the moment is espoused as the ideal state of being by the likes of Eckhard Tolle (The Power of Now), Ram Dass (Be Here Now), and the mindfulness community, among others. The emphasis is on appreciating what is happening right now and eschewing the temptation of fixating on the past or worrying about the future. Past and future are just constructions of the mind, and only NOW is real. A crucial element of this mindset is that it is a choice. But what if it wasn’t a choice? What if it is how you are all the time, because that’s how your brain works. Meet my daughter Cally.

Cally was born twenty-eight years ago with multiple neurologic dysfunctions, including cognitive impairment and visual impairment. She is vocal, but non-verbal, she developed seizures as an adolescent, and she has substantial issues with gastrointestinal function, presumably due to intrinsic neurologic dysfunction. We believe that her condition is a result of a viral infection her mother had early in pregnancy, when the developing brain and nervous system are most vulnerable. With all of that, Cally is the sweetest young lady, whom several people have referred to as a “pure soul”. One notable feature of her cognitive impairment is that she does not seem to think about past or future. She does have memory, and she can learn some tasks, but she does not worry about past or future. For Cally, all there really is is what’s happening now.

One thing that is happening now is that Cally and I (and our dog Georgia) are riding out the pandemic together. Fortunately, I am retired from full-time work and I can work with my coaching clients using video platforms. For the past nine months I have kept Cally home from her day program, and I have not sought any caregiving services. We don’t need any coronavirus here, thank you. Cally already spent considerable time in the ICU in the past year due to medical emergencies, and I simply have too many responsibilities to be sick.

So, for me, the focus is entirely on now. There is no point in trying to plan for a future that is still shrouded in uncertainty, and I view the past primarily as a rich source of lessons. The past few months have been an opportunity to reflect, heal from the emotional traumas of divorce, enjoy all the good that is in my life, and focus on caring for and being with the person who only knows now. So many of the usual distractions that can compete for my attention and that seemed so important before are irrelevant in this moment. They always have been, of course, but the major difference now is a sense of acceptance that the way things are at this moment is just how they should be.

Before my divorce I could not imagine caring for Cally full time on my own. It’s a lot of work, although some of it involves fun activities like taking her for a hike and swimming. Acceptance that this is what I am supposed to be doing now has opened up a floodgate of grace, which has allowed me to appreciate the extraordinary gift of sharing this time with Cally and to revel in it. This sense of gratitude has become ingrained in my mindset, and along with embracing acceptance, it fills me with a sense of joy that I could never have experienced without the imposition of relative isolation during this tragic pandemic. Thus, we have a perfect paradox: A truth embedded in apparent opposites.

Of course, Cally neither knows nor cares that a devastating pandemic is raging across the world, that we seem to be polarized against each other as never before, or that we may be committing environmental suicide. What she knows is that it is a very pleasant moment here on our back porch, the stillness interrupted only by the fluttering of a few finches, quail chirping as they sip from our pool, and the sassy crow across the wash. As I sit with her, I notice these too, along with the brilliant blue sky and mountains that fill the panorama before me. And I smile.