Robin Williams has held a very special place in my heart for most of my adult life, and the way Awakenings entered my life was almost comically ordinary. I was living in Solana Beach, California, single, working day in and day out, and building what would become Awakenings Health Institute, a fitness and wellness center primarily for people living with spinal cord injuries, brain injuries, and stroke. One rainy Saturday, with a mountain of laundry to fold and put away, I turned on a movie and there he was, my favorite actor, Robin Williams, starring in Awakenings.
The movie was about a doctor caring for people with severe neurological illness, people who had been physically present yet almost unreachable for years, and through treatment they began, for a time, to awaken. They moved, spoke, laughed, wanted things, recognized people, experienced joy, frustration, love, fear, all the ordinary pieces of being human that suddenly felt extraordinary because they had been gone for so long. I remember watching and feeling something click inside me almost immediately. Awakenings. That was the name. It captured what I believed so deeply about the people I worked with and, in many ways, about my own life after a spinal cord injury at eighteen. A neurological injury can alter a body in an instant, but the person inside that body remains complicated, funny, angry, sexual, ambitious, stubborn, loving, curious, scared, alive.
All these years later, Robin Williams touches something entirely different in me, although perhaps it is connected to that same question of what it means to be fully alive inside a body or brain that no longer cooperates in the way it once did. I know about his Lewy body disease, and I would never pretend to understand everything he experienced or reduce his death to one cause. I cannot know what was happening inside his mind in those final months, but I cannot stop thinking about what happens to a person’s relationship with life when the brain or body becomes a source of profound suffering.
That question has become much less abstract for me as I have gotten older. I am fifty now, and my body has been carrying the consequences of a spinal cord injury for more than three decades. I was also an athlete with very little regard for what I was doing to myself. If I got hurt, I kept going. If something hurt, I adjusted and pushed through it. I had youth on my side and almost no interest in imagining what all of those injuries, compensations, imbalances, neurological changes, and years of physical demand might feel like later.
Later is here.
My body hurts in ways that are difficult to explain to someone who has never lived inside a body like mine. There is neurological pain, orthopedic pain, old injuries, compensation patterns, and the ordinary wear of aging layered onto a body that already had a very complicated history. Some days it is background noise and I barely give it much attention. Other days it quietly determines everything I do, how long I stand, how far I walk, how much energy I spend, what I can tolerate, how well I sleep, and what I have left at the end of the day. There are times when the pain feels so deep that “hurting” does not even seem like a sufficient word for it.
What makes this strange is how much I love my life. I feel mentally and emotionally healthy. I am endlessly curious. I love thinking about people, marriage, parenting, aging, fear, love, morality, what makes us who we are, what we pass to our children, what we owe each other, what we believe and why we believe it. I want to watch my girls become women. I want to know who I become. I still have things I want to build, experience, understand, and create. There are moments when life feels so unbelievably beautiful to me that I honestly do not have words for it.
That love of life is probably why suffering fascinates me as much as it does.
I have also sat beside two beings I loved more than I can possibly explain and made the decision that their lives needed to end.
Nike and Mable were my dogs, although calling them dogs does not come close to describing what they were to me. They were two of my best friends, and major pieces of my heart died with each of them. They trusted me completely. They looked to me to feed them, protect them, heal them, comfort them, make the scary thing stop, fix whatever hurt, and somehow know what they needed when they could not tell me.
Nike would sometimes step on a thorn while he was outside playing. My baby would slowly come toward me with those sad eyes, crying and looking at me as if to say, Mom, please help me. I would sit down, find the thorn, pull it out, and he would lick my face and run off playing again as though nothing had happened. That was our arrangement. He hurt, he came to me, and I made it better.
Until I couldn’t.
The night before Nike died, he had twelve seizures in roughly eight hours. He had a brain tumor. By the end, he could barely lift his head. There was no thorn for me to pull out, no wound I could clean, no simple thing I could do that would let him lick my face and run back outside again. The role he had trusted me to fulfill for twelve years had changed into something I still struggle to understand.
I had to decide that he would die.
People say that I ended his suffering, and intellectually I understand exactly what they mean. I know what his body was doing. I know how sick he was. I know what another night of seizures might have looked like. I know that keeping him alive would have meant asking him to endure more pain because I could not bear to lose him.
Still, there was another part of me screaming, How could you do this to him?
This animal had spent twelve years loving me without condition, trusting me without hesitation, following me, depending on me, looking at me for protection, and at the end of his life I was the one who authorized the medication that stopped his heart. There is something about that decision that still feels almost egregious when I allow myself to look at it from that angle. The being who trusted me most in the world rested his tired head near me while I participated in ending his life.
Mable broke my heart all over again.
She was a three-legged lunatic, which was exactly why I had to adopt her. I used to call her the Tasmanian devil because she had more energy on three legs than most dogs had on four, and I always joked that if she had come with the fourth leg I never would have kept up with her. She spent thirteen years tearing through life with that ridiculous, joyful energy, then over the next two years she began gently slowing down.
Eventually she could no longer walk. I carried sixty-eight pounds of her everywhere. She would eliminate while lying down because she could no longer stand long enough to do it herself, and still she wanted food. Mable loved eating with an enthusiasm that bordered on violence. She ate like an alligator. Minutes before she was euthanized, she swallowed an entire bagel whole, and even in one of the worst moments of my life I remember thinking, Of course you did. That was Mable. Her body was leaving this world while some wonderfully ridiculous part of her was still very much herself.
Then she rested her tired, weary head with me, and once again I had to make the decision.
I had spent her entire life caring for her, protecting her, carrying her when she could no longer carry herself, and suddenly love was asking me to do the one thing that felt completely contrary to everything love had required of me before.
Let her die.
We call this compassion when it comes to animals. Veterinarians talk to us about quality of life. We tell each other that we did the loving thing, that we gave them peace, that allowing suffering to continue because we were not ready to say goodbye would have been selfish. I have said all of those things to other people, and I believe them.
I also know how violent that mercy can feel to the person making the decision.
Perhaps that is why I cannot stop thinking about what happens when the suffering belongs to a human being.
The moral framework suddenly becomes much more complicated. There are excellent reasons for that complexity. Human beings can recover from depression. Pain can sometimes be treated. Doctors can be wrong. Prognoses can change. Vulnerable people can be manipulated or pressured. Disability can appear unbearable to an outsider while the person living with it still finds tremendous meaning, joy, relationship, humor, and purpose in life. I have spent much of my own professional life believing fiercely in precisely that.
And yet I still wonder.
How much suffering is a human being morally obligated to endure?
Who decides when the burden has become too great?
What does quality of life mean when the person living that life is the only one who can feel the pain from the inside?
How do we distinguish between a moment of despair that might pass and suffering that has fundamentally changed the experience of being alive?
What happens when medicine can keep a body functioning long after the person inside it feels they have reached the boundary of what they can bear?
What do we owe someone we love when their wish to stay and our wish for them to stay are no longer the same thing?
These are frightening questions because they touch everything people hold sacred. Religion enters the conversation. Medicine enters it. Law enters it. Family enters it. The instinct to preserve life enters it. So does the fear that if we ever make room for one exception, we will create a world in which vulnerable human beings are treated as expendable.
Those concerns are real.
So is suffering.
I think this is where we sometimes become afraid of our own thoughts. We feel something rise up inside us and immediately push it away because it sounds immoral, ungrateful, selfish, disloyal, dangerous, or simply too uncomfortable to say.
What if I cannot do this forever?
What if keeping someone alive is no longer the same thing as loving them?
What if a person can desperately love life and still become exhausted by what it costs to remain inside their body?
What if there is a point when endurance stops being an unquestionable virtue?
What if mercy sometimes looks completely different depending on whose body is suffering?
I do not think having those thoughts makes someone dangerous or hopeless. I think examining them is part of being human.
Some of the most important questions in our lives get buried because we are afraid of what asking them might say about us. We hide them underneath religion, politeness, morality, family expectations, professional language, fear of being judged, fear of sounding ungrateful, and fear that someone will misunderstand the question as a conclusion.
A question is not a conclusion.
It is a place to look.
The older I get, the more reluctant I become to decide what another person should be able to endure. My own experience with pain has changed me that way. I can know another person’s diagnosis, read their chart, look at their body, hear their story, and still never experience one second inside their nervous system.
I think about Nike lying there after twelve seizures, unable to lift his head, trusting me to help him the way he always had. I think about Mable, unable to walk, completely dependent on me to carry her, still somehow inhaling a bagel minutes before she died because she was Mable until the very end. I think about the unbearable grief of holding them while their bodies slowly left this life, and I remember the impossible contradiction of believing I was protecting them while feeling as though I was betraying the deepest trust they had ever given me.
Then I think about Robin Williams.
I think about the actor who unknowingly gave my life’s work its name while I folded laundry on a rainy Saturday in Solana Beach. I think about a man whose work made so many people laugh and feel alive, and I think about what it must mean for the brain itself to become unfamiliar territory.
I cannot know his threshold.
I cannot know anyone else’s.
Some days I am not even sure I know what my own threshold will be twenty or thirty years from now.
I hope I remain wildly in love with life. I suspect I will, because I already am. That love is what keeps pulling me toward these questions rather than away from them. If life is sacred, then surely the experience of living it deserves our attention too. Pain matters. Dignity matters. Connection matters. Autonomy matters. Protection matters. Hope matters. So does the reality that another human being’s suffering can never be fully measured from the outside.
Maybe there is no clean line.
Maybe there never will be.
I only know that we should be allowed to look for it.
And I keep coming back to the question I have no desire to answer for anyone else, but cannot stop asking for myself.
When is enough, enough?