Grief & Gratitude

“It’s not fair!” The battlecry of those raging that they’ve been unjustly afflicted. I’m not immune, but as my Dad would say when someone said it in commiseration of his Parkinson’s, “and it’s a good thing – if it was fair I’d be much worse off than I am.” Same for me.

But it's tough. I’ve watched Lynn go through this last year with rarely a complaint. When breast cancer was diagnosed and she was given the opportunity to join a clinical trial, she had no hesitation, eager that her experience should contribute to better care for others. It’s been endless appointments, poisonous infusions, loss of hair, fatigue. Given her remarkably robust constitution,¹ (I’ve always suspected she made a deal with the devil) she’s suffered much less than most who’ve gone through similar treatment; but still, it’s a deadly disease and while her odds are very good, survival is not guaranteed. And yet, how often has my worry and concern for her had to contend with the emerald spike of jealousy?

I go along to meet with the doctors. She wheels me up to the 5^th floor of the clinic. At the checkin desk the bright young lady assumes I’m the patient. Nope, the patient is the strong, calm one. The old guy in the wheelchair is the supplementary ears and eyes.² The waiting room is busy, but not crowded. Some of the women have colorful wraps around their heads. Some, I presume, are wearing wigs – I’m no good at being able to tell.

The Kirklin Clinic mostly dispensed with white coats and uniform scrubs a few years ago. Most of the nurses, techs, doctors wear casual clothes (the doctors have the toughest time giving up their status coats) so you can only tell them from the patients by the IDs clipped to their garments and their assured manner as they bustle through the room. A tall thin woman, multi-colored blouse, glasses with sparkly frames comes out from the back. She looks at the paper in her hand, calls out a name, scans the room. We all look up to see who gets to go back this time, hear the mantra, “And how are you doing today? Now please verify your name and birthdate for me...” as they go back into the warren of exam rooms. We turn back to our phones, or our conversation, or our vacant gazing around the room, waiting our turn.

Lynn has a team of doctors (surgical, radiological, medical) with their residents, nurses and techs. There’s a patient navigator to help keep all the appointments straight, and a goodie bag of information and treats put together by the volunteers. The colors are bright and of course there’s lots of pink. The breast health clinic is a massive operation, a finely tuned machine with a million moving parts. So many people dedicated to making sure you’re going to beat this. You’re going to get better! We are deeply grateful. But I am also achingly envious.

I see many doctors as well. In another of the ridiculously lucky turns of my life, when transverse myelitis hit, I was working at one of the three institutions in the US that has a TM Center.³ The TM group on Facebook is replete with stories of people waiting months to be diagnosed, having their symptoms dismissed, dealing with neurologists who’ve never encountered the condition and have next to no idea how to treat it. This is the reality for the majority of TM patients. But I was diagnosed within 24 hrs of the ambulance taking me to the emergency room, my neurologist is a TM expert, and the other people I see (the urologist, the physiatrist, the physical therapists, the pain clinic people) all have experience working with TM patients and spinal cord injuries. They’re all on the same medical records system so they can compare notes, track my progress with each other, and provide the coordinated care that is unheard of for most Americans.⁴ I’m getting the best possible care for my condition.

And none of them are going to be able to fix me. Lynn is almost certain to be cured, but my physical capacities will continue to erode. I imagine the day will come when I’m mostly bedridden, using voice recognition software to try to get a few more essays done. For now the goal is only to delay that as long as possible.⁵ The people I see all keep a positive outlook, but nobody is giving false hope. For the rare diseases there’s no group of volunteers making goodie bags, handing out ribbons and words of encouragement. There’s little money for research, no massive public awareness campaigns.⁶ Some days that’s harder to bear than others.

Not long ago, I had a tangle with depression. It was a day when the struggle just to move around the house used up all the energy I could muster. In the backwash of the election, the roll call of the inept and the vicious being named to the administration, hot spots of war blooming across the globe, I felt hopeless. The unravelling of the American experiment, the death toll of the innocents rising in the Middle East and Eastern Europe with the likelihood of even more brutal devastation to come, and me becoming inevitably and unsparingly weaker, unable to act, unable to even fake encouragement to my loved ones. Helpless and a burden.

I’ve read enough about depression, have witnessed it enough in people I love, that I recognized it. But I’d never experienced it. I’d felt the Black Dog of fear those three days in April of 2013, when six months after my collapse I suddenly got much worse, but even then I hadn’t felt hopeless. Scared, bleak, but not hopeless. Not like this.

This time, joy was sucked out of me. I felt it pulled like a wisp of colored smoke drawn up through my body and dissipated in the air, leaving only gray. I couldn’t remember what joy felt like. I thought about the coming holiday season, the things we have planned, the Disney trip in January. All of it filled me with dread. I could only imagine the struggle of dragging my body around, its exaggerated reactions to heat and cold, the vicious fire ants racing up and down, waist to toes. I would go because Lynn would want me there, even as I believed she’d have a better time without me. By the evening of that day I didn’t know how to imagine that I’d ever have hope again.

The next day I started clawing my way out. Three more days, each one a little less grim. Joy returned. The love I feel for/with Lynn brought colors back. I began to look forward to things again. By the weekend my sense of humor was restored. There is pleasure in my world.

I can no longer quite remember what the bleakness was like. Self-protection, I guess. I know that I experienced hopelessness. I know I felt the bleak gray chill of it. But I don’t remember it the way I easily remember moments of joy and gratitude. I can’t relive it the way I do those.

That there are people who struggle with this daily takes my breath away. How do they manage to go on?

My undeserved lightness embarrasses and baffles me. How is it that I’m so fortunate? I’m the undeserving recipient of goodness. Try as I might, with all my arrogance and hubris, I can never construct a karmic balance that would justify my good fortune against what so many have to suffer. It’s not fair.

*

I’m reminded of a story I’ve often told. In 2016, as Jessica Lange was getting ready to perform A Long Day’s Journey into Night on Broadway, she was interviewed in the New Yorker. She’d played Mary Tyrone many years before and was very much looking forward to doing it again, “I have so much more loss to work with.” Reading that, I burst into tears and I choke up every time I tell it. Even now, just typing it out, the tears come. The tears are gratitude.

I was three and a half years past the short-circuit of my spinal cord. No more long walks, no more guitar, no more exploring strange cities on my own or taking the long solo driving trips that led me to remote campsites and quirky boutique hotels. All of that replaced by unrelenting pain and frustration and fatigue and struggle with a body that, literally overnight, had been crippled from neck to toes. Losses that could’ve been, should’ve been, overwhelming. But from the beginning I was astonished to find that whenever I started to dwell on those losses, the emotion that took precedence was – gratitude. How could this be? It certainly wasn’t through any effort of will. But as I thought about all of those things that were lost to me, and as I came to realize that they were never coming back, that the damage in the spinal cord was permanent and that while I might find ways to accommodate my disabilities, my abilities would never be restored, I felt more than anything the soothing wonder that I had been able to have all of that. That I had traveled the world, making music, giving lectures, making a tiny bit of positive difference. That I’d been a good boss, done a good job. All those moments so inextricably part and parcel of me that the joy I’d felt in them remained alive. No longer just the things I’d done, they were the essences of who I’d come to be. And knowing that depression is one of the most common and devastating impacts of this disease, this disruption, I was grateful for the gratitude, thankful for whatever chemical imbalance in my brain pushes me toward joy and away from the dark.

What burst me into tears when I read the Lange interview was her intentionality, her eagerness to see what it would be like. To transform herself into that tragically damaged woman night after night, using all of her own losses, fears and failures to make something true. That she would take to the stage and her performance would burn brighter, her connection to the audience would be richer, her embrace of the character more honest. That her losses, her grief, would be, if not redeemed and certainly not transformed, honored and enriched, that her life and her work would be strengthened, not by turning her attention away from loss, but by immersing herself in it.⁷

Inevitably, the losses pile up. Friends die, the granddaughter grows into her own life, we add another little urn to the collection of cat memorials. I carefully pick and choose the essential things that need to get done each day before fatigue makes anything more impossible. Perhaps it helps that I never had a life plan, was never ambitious for fortune and fame. My high school and college study of philosophy persuaded me that reason was inadequate for understanding my self and my place in the world. My study of comparative religions had already convinced me that no God worthy of the name had earned my allegiance. The collapse of my marriage cast a bright light on the poisons of my arrogance and jealousies⁸ teaching that whatever good I was going to do in my life would only come about through the ways I treated the people in my immediate orbit. I wasn’t destined to change the world.

So by the time the short-circuit came and the trajectory that I appeared to be on suddenly shifted, I didn’t feel cheated out of something, the way some people do. I never mourned my “old life”. I wrote There is only this life, and was humbled and grateful that some people found it useful. I do like to be useful.

*

I’ve been re-reading Nietzsche, that blast of metaphysical dynamite that so rattled my world as an undergraduate in Milwaukee. A class on Existentialism. Sartre, Kierkegaard, Buber, Jaspers, others. But none of them grabbed me the way Nietzsche did. I spent days trying to mine sense out of the notion of the eternal recurrence. Is he really saying that at some level time runs in a loop, the same incidents recurring in the same way, on and on forever? It’s a poetic image, not a rational exposition. It’s slippery (what about Nietzsche isn’t slippery?). But then there came a day when it clicked into place. It’s the interconnectedness of things. Not that what happens had to happen in some deterministic sense, but that all of the things that do happen, fit together in a cosmic jigsaw. Nothing is out of place and every moment of existence is of equal importance. The most glorious heights don’t exist apart from the worst depths. Nietzsche’s insight was that to love the glorious things in life in a world without God, with only your own human self to rely on, you have to love it all. Not just accepting the griefs, but embracing them without reservation. If you say you “love life” you don’t get to qualify it by saying it’s the beautiful things you love and that enables you to put up with the ugliness. That leaves you yearning for a world in which only the good things happen, but that’s not the real world. If you’re going to be fully present in the real world, you have to love all of it.

Sure, that’s impossible to achieve. Look at the brutal contradictions we have to live with. The cruelty of humans. I know that neighbor can turn upon neighbor and kill without hesitation. I know that it is possible to so completely dehumanize other people that bashing in the head of a baby feels like a moral act. Inescapable knowledge, but I can’t wrap my mind around it, can’t fully imagine what that kind of hatred could feel like. And then there’s the random cruelty that can’t be blamed on any person, but threads it’s way throughout our lives. The young man who drops dead because of a heart defect no one knew was there. The child born with such physical deficits that they don’t live past their third birthday, suffering the entire time, the parents filled with indescribable anguish and grief. How do people manage to bear it? With Beckett, we say “I can’t go on, I’ll go on.” People use religion to offload that reality. Faith can provide a just and loving God in whose infinite wisdom all these griefs make sense and are justified. But in a world without God, there’s nowhere to turn. I’m left to embrace the totality of those contradictions on my own.⁹

When my marriage imploded and I went shopping for a therapist, I knew that part of my struggle was that I’d spent more than a decade subsuming my emotions to Sandy’s. She was the mercurial one, the dramatic one, the one with the wild emotions fueling her life and her art. So I needed to be the anchor, the stable one, the rock. Repression to the max. I hadn’t cried in many years. I’d done such a good job of closing off strong emotions, good and bad. Now I was being flooded, with no notion how to handle it. But I knew I didn’t want to stop the flood, I wanted to embrace it. So when I interviewed therapists, I started out by saying, “It’s not that I want to stop suffering, I want to suffer better.”¹⁰

I was covetous of my suffering. I wanted to experience it fully. It was mine, essentially mine, and by denying it I’d been denying my humanness. The closer I come to embracing my suffering for its own sake, not for what it can teach me, not for how it puts the good things into sharp relief, but for its very own essentiality to who/what I am, the closer I come to being fully and completely human.

I know it’s impossible. The impulse to pull away, to hide from the things that hurt is too strong, so the work of embracing all of one’s life is a never ending struggle. But the attempt brings me strength. It’s not that “everything happens for a reason” in the sense that there is a reason behind everything that happens, but that everything that happens is essential to this one human life.

I don’t know why it doesn’t it crush me. Why my bout with depression was so strange and unusual. I crawled my way out, nothing in my life was any different, but hope returned anyway. And with it, the warm and soothing flow of gratitude, the golden elixir on which my weary body floats.

*

Who is this gratitude directed to? It never occurred to me until recently to ask. I realized then that I turn to the angels we don’t believe in, continually thanking or blaming them for the small coincidences of good or trouble that pepper my days.

Violet was the first. She was the only person sitting at the front bar of Shaw’s Crab House when Lynn and I landed there late in the afternoon, twenty-four hours after arriving at the Blackstone, thirty-some years ago. We were famished for oysters and whiskey and it seemed clear from her nods and smiles that she knew exactly how madly in the first phase of love we were, what that madness had us up to back at the hotel. We’d arrived just before the evening rush and she cast a protective aura around us so that as the place filled up and people became packed three deep behind us and the noise level rose, we were never jostled and the bartender, despite being in high demand had no trouble keeping our whiskey glasses filled, indicating with a gesture they were on the house. We got hungrier and decided to go to the Parthenon. We asked Violet where’d be the best place to catch a cab. She just smiled, “There’ll be one outside.”

We decided that she’d been an emissary from the Cloud 9 Bar, where the angels gather to drink and joke and look down at the humans, nudging things in one direction or another as suits their fancies. They’re more playful than the angels in Wenders’ Wings of Desire, happy to throw gravel in our paths as often as they smooth the way, tricksters who care about us, but see our needs differently than we do.

Mostly they’re disembodied. I imagine their presence by the things that happen that I choose to attribute to them. I’m running late for an appointment and an unexpected parking place opens up right by the door. I call it an angelic intervention. I’m getting ready to grill steaks for our anniversary dinner and discover that the coals are bad and I have to scramble to shift to the gas grill, which only Lynn uses. The angels are poking at me so that I don’t take things for granted.

Think of them as the personification of coincidence.

Occasionally, like Violet, they show up in person. We were in Crystal City years ago, crossing a busy intersection, Lynn pushing when a wheel lodged in a crack as we reached a little island midway across. The chair tipped and I slid out. Lynn and Jean tried to help me, all three of us panicking, when a young man appeared, crossing the street in our direction. Radiant smile. Smooth chocolate colored skin. T-shirt tight across his muscular chest. “Let me help,” he said, smiling and calm. “Just put your arms around me and relax.” I did, and he lifted me up, set me back in the chair and continued on his way. Why wouldn’t I believe he was an angel?

Similar circumstance just over a year ago in Charleston. Coming out of the restroom at the Francis Marion, the cane I was leaning on gave way and down I went. There were conference sessions going on, so almost no one around except a young man who seemed as if he was waiting for someone. He had the same calm, enigmatic manner as the Crystal City angel, knew just how to lift me up and I was on my feet and then back sitting in my chair. He explained that he’d cared for his disabled father for many years, so he knew what to do. I choose to believe he’s an angel as well.

Belief is a funny thing. My reason knows there are no angels. But reason, which measures and weighs all things in the natural world, converting our environment and our actions into numbers and formulas, can only address a portion of our human world. Reason provides a cookie-cutter approach to the world’s mysteries. If these things happen, then those consequences must follow. But reason can only operate by abstraction. We create models of the universe in which reason can operate cleanly and then persuade ourselves that those models are an accurate map. But they fall short of explaining what we value, what we hope for, what we’re willing to live and die for.

My reliance on reason prevents me from believing that my angels are real. But there is a barrenness to my world without them, that world in which random coincidences truly are just random. It’s emotionally unsatisfying. It’s a world that is incomplete to my experience. So I compromise, relying on the angels I don’t believe in to give me a focus for my gratitude.

*

I keep trudging along my path, intent on making each step the best ever. I try to stop myself from looking ahead. There is only now and not now and now deserves all of my attention whether it’s a moment of joy or one of grief. As the Buddhists say, “Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.” I do have faith, shaky though it may be. That most people are more good than evil. That there is a spiritual dimension to the world that completes us, over and above our materiality. That we have obligations to other people and, indeed, to ourselves, with no clear justification for where those obligations come from and no clear map for how to live up to them. That embracing the mysteries, in all of their glory and all of their torment, is the right way for me to live. That’s not quite enough to satisfy me, but it’s what I’ve got. I know there are more losses to come and the griefs will pile up, sea wrack and wreckage littering my shore, mother of pearl moments of joy glittering among them. I step carefully through it, planting foot by foot in the wet sand. Grateful for all of it.

1. The healthiest 74 year old they’ve ever seen say the doctors and their teams.

2. I like to be useful.

3. The others are Hopkins and UT-Southwestern.

4. The US has the best medical care in the world. It has the worst healthcare system among developed countries.

5. Bashir told me at one of our early appointments, “I know that your goal is to get better; my goal is to keep you from getting worse.

6. The SRNA is about it. They do a great job, but they’re tiny.

7. She won the acting Tony for her performance

8. Although even now the imp on my shoulder, the one I call Hubris, tugs daily at my ear, whispering, “You know you’re not as smart as you think you are.”

9. Always worth remembering that Nietzsche went crazy and ended his days in an asylum.

10. The first one I saw said “But is suffering necessary?” Since it obviously is, I scratched him off the list. The next one said we should examine my past, in particular my relationship with my mother. I fled from that cliché. Jack Feely (real name!) smiled gently and said, “How interesting. Tell me more.” I stuck with Jack.