I was driving around Falmouth the other day and felt like I had dropped into the middle of a sci-fi movie, kind of like The Day the Earth Stood Still. The streets were empty—an eerie stillness—like I was the last person alive on earth. I knew intellectually what was going on, but in my heart and soul it felt like I was out in Death Valley again, doing my solo fast in the desert, alone with my thoughts and feeling, four days and nights in a row.
I got out of my car to walk around and the air was uncharacteristically clear and fresh. It was like the earth had taken a big sigh and shook something off and stood up a little taller. Isn’t this something, I thought, this freshness while everybody is inside, life put on hold, waiting out the sometimes deadly virus spreading around the world. Wouldn’t it be something, I thought, if this pandemic served as a wake up call to the world, to change our ways and live our lives in harmony with nature? Wouldn’t it be something?
I’ll be darned if it didn’t start snowing. Barely a hint of winter all season, and now, creeping up on spring, a brief snow squall. How incredible. How magical—and yet strange, another scene in this new sci-fi movie reality we find ourselves in. It’s kind of biblical, almost like a prophesy. I cannot help but feel like a door of perception has opened, and we’re being asked to walk through.
I was reminded of the phone call I had not long ago with a new family who just received a definitive diagnosis of ALS. They had been holding out hope that it wasn’t (though they suspected) hoping still that it might be something else, and just how crushing it was to be told, no, it’s ALS. The uninvited guest had come knocking on their front door and it was not going to leave.
Under normal circumstances I would have again visited them in their home, bearing witness to their circumstance, providing a calm and open presence, but I couldn’t go. On the phone I let them speak and listened quietly, and then I said, “I have a hunch you have a lot of life ahead of you. This is what I see. You will adapt and continue.” Intuitively, I feel they were comforted by this, which warmed my heart.
My staff and I want all of you to know that we are still here for you. We are working regular hours from home, and when called upon, delivering durable goods to the homes of our families. Regretably, we can’t go in and do installations, or give instructions like we usually do. We are taking the time to personally call, Facetime, Skype, conference call, text or email every one of our 600-plus families to check in and see how they are. We are staying tight with Zoom video team meetings, and conference calls, at least once a week, and supporting each other in ways we hadn’t always considered before the new reality set in.
In some ways I feel like COVID-19 is providing the entire world a glimpse into the reality our families with ALS have thrust upon them. You all know what it feels like to have life turned upside down, to be going along in your normal way when suddenly life as you have known it has ended. You’ve learned to become resilient, flexible and able to adapt to every new development that occurs. You’ve realized that life is indeed short. The small decisions we make every day, based upon the “new normal,” are important—that little bit of extra kindness, that opportunity to express your love, that book you’ve always wanted to read or that place you’ve always wanted to visit.
You all know what it means to have your capacities reduced. That’s what ALS does. That’s the hard part for the physically healthy and fully functioning right now. They are generally unfamiliar with having their capacities reduced. Social distancing, for example, is another word for isolation, a softer way to put it. You shouldn’t go there. You can’t do that. These are the restrictions that individuals living with ALS have to consider all of the time.
Yes, we are isolated, but that doesn’t mean we have to be lonely. It’s a matter of perspective. If we get too identified with being lonely it can descend into depression. That will only make the current situation that much more difficult. Rather, I suggest embracing the current reality as an invitation to solitude.
Again, I am reminded of my time in Death Valley, alone in the desert. This is what can be thought of as conscious solitude. I chose to be there because I wanted to test myself. I wanted to see who I was without the usual things to prop me up—the job, the things, the status, the activities. I wanted to get to the core of who I am, what I’m about, why I’m here and what my purpose is. I had all the time in the world to do that and because of it, my soul could relax and open up. The Irish poet and priest, John O’Donohue, describes it well in his book, Anam Cara (Soul Friend):
“Solitude is one of the most precious things in the human spirit. It is different from loneliness. When you are lonely, you become acutely conscious of your own separation. Solitude can be a homecoming to your own deepest belonging… We cannot continue to seek outside ourselves for things we need from within. The blessings for which we hunger are not to be found in other places or people. These gifts can only be given to you by yourself. They are at home at the hearth of your soul.”
Now is a good time to relax into solitude, to go slowly and take some time for reflection. It’s a very rare thing in our modern go-go-go world to have this universal pause. Think about it. Almost everybody the world over is in the same situation. It’s a great leveler, an equalizer, a common set of challenges completely opposite of what usually faces us. What a bewildering, amazing, challenging, strange and bewitching time we find ourselves in. And yet, through this time of anxiety and chaos we can discover a deeper expression of kindness, care, compassion and love.
So if you’re feeling lonely, remember, we’re all alone in this together. Nobody gets a pass. It’s a good reminder of our mortality. Nobody gets a pass. The more familiar and comfortable we can become with this reality, the better able we will be to maintain equanimity in the current situation, and the more compassion we will have for those facing their mortality in the current moment.
Part of our mission here at CCALS has always been to bring calm guidance and awareness into a bleak situation, to open up possibilities and potentialities, and to support the living of life as it is, as fully as possible, and when invited, explore end of life. We’re holding tight to those principles during the current crisis, recognizing that it is not so much the ending of a road, but the beginning of a new one. May you be safe and well-supported as we wander through this otherworldly, live episode of The Twilight Zone.
Blessings and love to all,
Thanks Ron. This is a hopeful message. Solitude can be a time of renewal and meaningful reflection. I have, though, felt a loss of time with those I love. I am so grateful for technology which helps us “see” each other. Can’t wait for the real hug days.
Thanks for all you do to help those of us dealing with ALS and our families. Peace..
Beautifully said, Ron.
Eloquently stated, capturing the essence of the time. Thank you Barbara stack
So beautifully written. Thank you Ron.
Ron, what wonderful insight. Thank you for sharing, and for all that you and your organization are doing for so many.