Walking Brittany Home
Being with the love of my life in her last moments.
“We’re all just walking each other home.”
- Ram Dass
I leaned over towards my dying wife and I whispered in her ear. What I whispered was a lie.
Before that we have to go back six or seven months. It was the night before the night before Christmas, and Brittany had gone to the hospital very sick. Being sick was nothing new; Brittany had cancer before I met her, and over the past few months we had found ourselves hitting the emergency ward of City of Hope, her cancer hospital, with some frequency. But this December day was different; the results of a PET scan showed us what we had hoped to never see, that her cancer had begun spreading aggressively inside of her.
Like I said, she had cancer since before I knew her. She actually had cancer before she knew she had cancer; for years Brittany had struggled with health and skin issues that perplexed doctors. Finally she was diagnosed with an incredibly rare cancer, the odds of which were like hitting the lottery, except it was the worst lottery that you didn’t even know you had entered. That said, we believed - or hoped - that the kind of cancer she had was treatable. We didn’t think it was curable, at least not in the present moment, but we were under the impression this was something we were going to be living with for a long time, that her struggles with the disease would define an aspect of our lives but that there would be lives for it to define. We had a lot of hope, and we had each other.
But when that PET scan came back much of that hope crumbled immediately. What began next was a desperate series of chemos, each of which made her sicker and sicker and each of which seemed, for a couple of glorious weeks, to be working before this bastard cancer marshaled its forces and came back twice as strong. This was the pattern - we would have a bit of hope, we would see shrinking of tumors, and then suddenly it would all reverse and everything would come roaring back twice as awful.
The next few months were, frankly, horrific. I watched as this cancer disassembled her from within; tumors were everywhere inside of her and slowly she lost the ability to walk. Her body began swelling; sometimes from the tumors themselves, which would grow to enormous sizes, and sometimes because her lymphatic system was clogged by tumors, leaving her body to just accumulate all kinds of fluids. She had always taken comfort that her cancer, which had initially manifested in skin lesions and external tumors, had left her beautiful face, with its razor sharp cheekbones and mouth with a permanent upturned smile in its corners, alone. And it still did that, but a huge tumor, the kind whose size they measure in various citrus fruits, blew up on the side of her head. And when I say blew up I mean it - she would have a tumor go from a small lump to an impossible bulge in two days. It seemed implausible that anything could grow this fast.
As she got sicker she got weaker and less able to take care of herself. I lost my day job because I needed to be home to take care of her as she could no longer get out of bed. I will spare you the details and save her dignity, but let me say that in the final months that she was home Brittany lost every single bit of the independence that had defined her for her entire life. I think it’s good that I was the one who was here to support her, but even though we were soulmates and we were a perfect union she still felt humiliated when I had to lift her out of bed to take her to the commode we were forced to place in the middle of our bedroom.
There was a point where we were going to City of Hope almost every day, whether for chemo or for radiation or for a sudden emergency. And then one day we went and never came home. That wasn’t the plan; we left the house for the hospital that Wednesday fully expecting to be back by the weekend. We made plans to put Brittany in her fancy new wheelchair and go see Guardians of the Galaxy Volume 3, which was opening that Friday. We did eventually see the film, but only when Disney brought it to the hospital so that she could watch it from her bed.
When the PET scan came back I had to deal with a lot of intense emotion. It became clear that we were in a critical phase. I made my father fly out to Los Angeles; I needed him to meet her and I needed her to meet him before she died. To say something like that out loud felt defeatist, but at the same time I had to look at the possibility head on. It was impossible.
I had always been a morbid kid. I grew up obsessed with death and dead bodies. In some other universe I’m a mortician or something, and that morbidity never left me. It grew in strange ways, in fact, and began intersecting with the spirituality I developed after I got sober in 2016. It grew into an interest in the act of dying as a sacred experience, the inevitable destination towards which we are all headed. I read about people on their deathbeds and I pondered volunteering at hospice so that I could get close to this, the greatest and most final mystery.
At some point I became aware that we actually don’t know what death is. I don’t mean that in some kind of woo woo way, I mean that the definitions of death have evolved and changed over the years and even right now it’s not 100% clear what it means to be dead. We have a definition that works for the moment, but that definition, it turns out, was developed so that we could harvest organs from bodies that had not gone round the bend yet.
Part of what baffles us about death, scientifically, is that we don’t know what consciousness is. We don’t know where it’s located, or what generates it. We know that it exists because we experience it, but we can’t measure it. I read amazing stories about people who were in comas who still had conscious experiences, despite seemingly being without consciousness. Stories of people who died - sometimes for an hour or more - and returned to life with memories of the experience indicated to me that our concepts about death and brain death were limited at best. If you can’t figure out what consciousness is or where it comes from, how can you know when it is fully gone?
With all of this in mind I made a promise to myself in early January; whatever happened I would not leave Brittany to face this alone. And I meant that in the most final of all senses - I would be there with her until the very very end, that I would not assume that lack of obvious consciousness indicated that nothing was going on inside her head, and that I would walk every step of the way with her, as far as I could.
“We’re all just walking each other home” Ram Dass said, and I took that to heart. I was going to walk Brittany home.
My father had warned me that no matter what, the end was going to come as a shock. No matter how much I had prepared, no matter how many hours I had spent turning the events over in my mind, no matter how much I had storyboarded the last act of her life like an obsessive director finding every camera angle before he stepped on set, the actual moment of death was going to be a shock.
He was right.
She was in the hospital for a month. Things were not going well, but she was not interested in dying. She wasn’t even entertaining the thought. I mean, she knew it was possible, but it wasn’t a topic of conversation. In that month I became close to one of the hospital chaplains - this woman married us in the fifth floor lobby of Brittany’s hospital ward, and she oversaw Brittanyt’s funeral in Joshua Tree, events just a short month apart - and I confessed to her that I was worried Brittany wasn’t facing the truth. That she was in denial.
She wasn’t, the chaplain told me. She knew what was possible, but Brittany held in her an endless reservoir of hope and strength, and so she was opting to focus on the possibilities, that perhaps this last ditch chemo would work or that the doctors would come up with some new idea. They always had before.
But she knew. I scrambled to get people to come and see her in the hospital. It was important that folks have a chance to tell her how much they loved her while she was here, and I needed her to see these people and for her to hear those things. And we did get married in the hospital after all; it’s hard to deny reality when you’re racing against time to tie the knot in a ceremony largely attended by doctors and nurses.
Yet it wasn’t something she entertained. A week before she died Brittany’s social worker came into the room and told us about a hospital program that is, more or less, Make-A-Wish for adults. Was there anything Brittany really wanted to do or see? They could work to make it happen. Brittany couldn’t come up with anything that was plausible - a trip to Ireland was her dream, but she couldn’t get out of bed, so that wasn’t happening in the immediate future. When the social worker left Brittany turned to me and said, “Come on, it’s not as bad as that, is it?”
It was.
A week later it all came crashing down. The stay in the hospital had been torturous (you would think rest is something you would get in a hospital, but it turns out they come into the room at all hours of the night and do all sorts of loud shit, making getting a full eight almost impossible), but through it all Brittany had remained Brittany. She was bright and funny and quick and kind; she was tired, for sure, and her memory wasn’t what it had been, but she was still Brittany
And then one night she began acting weird. Like she was really stoned. She was slurring her words and her eyes were unfocused. I immediately clocked something was wrong, and it took some convincing for the nurses to take it seriously. We did tests. Nothing showed up, no new tumors in the brain, which is what we feared. Her blood panels came back normal (for the situation). And yet she was getting more and more confused; she couldn’t always understand what was being said and it wasn’t clear if she was having hearing issues (that big tumor on the side of the head might be causing pressure, we thought) or what was up.
Spoiler alert: she was actively dying.
What happened next… you might think the day she died was the hardest day of my life, but it wasn’t. It was the days right before, the day or two before. I’m typing this on a keyboard that is getting ever so gently wet from my tears, because even thinking about these days tears open my heart. Having to write about it, to go back into those days directly and take them out of my mind and put them on the page…
Anyway, time to buck up. I had been sleeping in the hospital with her a lot of days, maybe three or four nights a week. She was never alone this whole hospital stay, there was always someone doing the overnight with her, and this day, the day she got confused, I tagged out and her aunt stepped in. I was grateful for the ability to sleep in a bed that night, four nights in a row in a chair had taken its toll on me. But now I kind of wish I had stayed. I didn't know how fast it would all go, it was a surprise - just as my dad had warned me.
When I came back in the morning she was unable to speak in any significant fashion. “Hi hi hi hi hi,” she would say. She could say “Yikes,” a word we had bandied about as a way of lightening the mood when things got heavy. “Hi hi hi hi hi” and “Yikes.” I came into the room and I have to tell you right now, I don’t know if she knew me. She looked at me and said “Hi hi hi hi hi hi” but what was she seeing?
That day broke me. Brittany was so smart. She was so funny. She had a great mind, and losing it was one of her biggest fears. It was one of mine for her as well; I loved every bit of her, but I loved her brain and her perspective perhaps most of all. She was the person I wanted to talk to about everything, she was the person whose opinion of a movie I wanted to hear before I formed my own. She was the person who explained to me, a crusty old Gen Xer, the changing worlds of gender and sexuality that had left me perplexed at times. She was the person whose kindness and empathy for others helped me see the world in a different way. She was the person who would have a sudden terrible pun to throw out at any moment, who would make a joke my brain could not have formulated in a hundred years. She was the person who would talk happily for an hour about Foucalt and then talk happily for another hour about Survivor. She had the greatest, most diverse and most beautiful mind I had ever known. And now…
“Hi hi hi hi hi hi.”
We knew this was it. Because she had not been entertaining death Brittany had not made clear many last wishes, but one of them was that she would prefer not to die in the hospital. This was vital to me as well; she couldn’t spend her last hours in this fucking little hospital room with the beeping and the dry air and the constant hum of noise from outside. One thing I have noticed is that when people die from cancer there is a tendency to kind of define them by it; their survivors will do fundraisers for cancer research and stuff like that. This made no sense to me - Brittany wasn’t a cancer patient, she was a writer and a performer and a being of absolute love who also, it turns out, had cancer. I didn’t want her final hours defined by this fucking disease, even if it was going to kill her. We were not embittered people, but we did not like being in this hospital.
Heaven and earth was moved to get her out of the hospital in hours, because we knew that was all we had left. When she first came in her parents had rented a house a few miles down the road from the hospital; I had been living there all month when I was not sleeping at her bedside, and that was where we were going to take her. It was a beautiful place, just an incredible find, and it had this astonishing back yard that was the definition of tranquility. The master bedroom, where she would be set up, had doors that opened right into this paradise, with a giant gnarled ancient oak tree just outside and in direct eyeline. This was where we took her.
I rode the ambulance with her from the hospital to the house, a ride of maybe fifteen minutes, but it was.. I wanted to say an eternity in hell but that’s not right. By now she was no longer verbal at all, and her eyes were skimming over things, only sometimes locking in. I held her hand as she lay in the back of the ambulance and I spoke softly to her, maybe - and I say this respectfully and she would understand - how you would talk to a cat in a carrier in your passenger seat as you drive to the vet. I didn’t know what, if anything; she understood. I could see her react - in small ways, not alarming ones - when the ambulance hit a bump, so she had some awareness in her gurney, strapped in. But she could not speak and she did not look at me with anything approaching recognition.
So it was hell because here I was with the love of my life, my soulmate - honest to God, I am not just using that phrase here, I truly believe we were fated to be together and our lives forged us into people who were perfect for each other - as she was in some state of consciousness that would maybe have been funny if she had ingested a whole bunch of shrooms earlier. But here it was so heartbreaking - I was losing her already, right here, neuron by neuron.
At the same time it wasn’t hell because here I was with the love of my life, my soulmate, and I got to be there for her, to try and comfort her in an impossible moment. I was so flooded with gratitude, so thankful that I got to be the one to be sitting here and holding her hand. There was a sense of purpose so intense I can only call it cosmic, a feeling that when the first elements formed in the immediate wake of the Big Bang that the path to the back of this ambulance was paved, that every event in the history of space and time had conspired to make it so that I was there with her, her hand with its long thin fingers in mine, with my fat stubby sausages. You could draw a straight line from those first protons to this ride.
And I was so happy for it. Let me tell you, as I write this now I grasp at this feeling. My therapist has told me I have anhedonia as a result of my current major depression, and she wasn’t talking about the original cut of Woody Allen’s Annie Hall. Anhedonia is the inability to feel pleasure, and I walk through the days mostly in a gray fog - if I’m lucky and I don’t fall into a black pit. Every now and again something happens and I find myself peeking above the layer of fog, getting a glimpse of the sunshine, but every time I am dragged back down. To look back at this moment of horror and to remember that I was, in the weirdest and most spiritual way possible, happy, is something I hold close to me, something I use to ward off the darkest thoughts. I have no resentments or bitterness over this experience because as horrible as it was, it was the greatest thing I have ever done.
Brittany’s main oncologist told me this was a best case scenario. “The one thing she didn’t want to happen didn’t happen,” she told me. “Brittany didn’t have to hear me come into her room and say that there was no hope, that she was going to die. She never had to face giving up.”
We got her to the house and then she would spend the next day and a half drugged up. She was not, in any traditional sense, conscious. The house filled with people who came to be with her, to see her and love her the last time they could. My friends showed up, an army of support that I will never feel I earned. When I die I hope the scene at the end is like this one - there were tears but there was food, and there was laughter, and there was so so so much love.
She died at 12:18AM on June 9th. That was when I lied to her.
Like I said, we don’t really know what death is or when it happens. We don’t really know what’s going on inside the head of a dying person, or when they lose awareness of the world around them. There’s this belief that hearing is the last thing to go. Could Brittany hear us? My assumption is that she could, and it made me happy. People gathered around her bed and talked to each other and laughed and joked and I know that was one of her happy places - she didn’t need to be the center of attention, she liked being in the conversation and being surrounded by it. In her final weeks she liked having people in her hospital room just talking to one another, even if she was too tired to take part.
I did some of that, sitting around and laughing and telling stories, but I also spoke to her. They don’t teach you what to do in these situations, there’s no training or guidebook, and so I just did what I had read about and what I had seen in movies. I spoke softly to her and I told her how much I loved her. I told her how grateful I was that we found each other, and how honored I was to be sitting there at her bedside, holding her hand, in this most important moment in her life.
I told her I would never leave her. I told her that she would not be alone, that I would walk with her every step of the way that I could, and then some. I told her that she was safe, and that she was loved, and that she was okay.
I told her that she was doing great, reassured her because I knew that she always needed a little bit of that. I told her that everyone was so proud of her, and that she had fought all the way. When we first started dating I showed her all of the Rocky movies, and they impacted her tremendously - read her writing on the topic - and so I told her she had gone the distance. She had fought to the final bell, that she had done it, she had won because she had never backed down, she had never given up. We were all so so so proud of her.
Sleeping was hard. She was in a hospital bed at the foot of the king sized master bed; I slept in the master bed facing her, with my arm over the railing of her hospital bed so that I could keep my hand on her, so that I could touch the side of her head, where the hair she had shaved off two months before was growing in so thick and dark. The growing hair had seemed like a promise, that she would one day again have the lustrous head of curls that made my heart stop every time I saw them. But it wasn’t a promise, rather it was a symbol of how she never stopped fighting, right up until the end.
So in the last hours I tried to get some sleep, and it was fitful, but then I was woken up shortly after midnight on June 9th. I knew immediately what was happening. Her aunt was a doctor, and months earlier I had asked her to walk me through all of this, what to expect, what I would see and hear, and she had told me that in the final moments there would be what is called agonal breathing, which is really as bad as it sounds. The body would be gasping for air in the final moments, and she told me that Brittany would not feel it thanks to the morphine, it would be hard to hear. It would be hard to hear the love of my life struggle to get the oxygen she needed.
Back in the day I used to wake up in the middle of the night next to her, and I would look over and she would be so deeply asleep that I couldn’t tell if she was breathing. I would reach out, gently as I could, and place my hand on her back to feel the slight rising and falling, to reassure myself that she was still alive. She told me that sometimes, despite my efforts to be gentle and silent, I woke her up doing this but that she loved it. She loved knowing that I was checking on her, that my first thought upon waking was her.
She had breathed so easily then. Not this night.
The house, which had been so full, had become empty. Did Brittany wait until everybody had left for the night to die? It would be like her - she wouldn’t want to make a scene. More likely is that she waited until after midnight so that she could die on June 9th - 6/9, a date that I know would make her smile. She never passed up the opportunity to say “nice” anytime the number 69 came up.
It was just me, her aunt and her mother. Brittany was dying, right there before me. I found immense clarity as I came around and sat beside her, held her and spoke calmly to her.
“It’s okay,” I told her. “I love you. This is okay. You can go, and it’s okay.”
I want to tell you some of the details of what it was like to watch her die because some of these images come into my head unbidden out of nowhere and I feel like if I write them down maybe they’ll be exorcised from me. Don’t get me wrong, it wasn’t some kind of horrific experience, there was no bleeding or spurting fluid or screaming. There were gasps and long breaks between them, and there was a moment where her jaw jutted out and I could see foam inside her lower lip, and these are not inherently awful things but I was so completely present that these last moments of her are burned into my memory. And these aren’t the things I want to remember; I want to remember her on the couch laughing at a bad reality show, or I want to remember the way she walked ahead of me down the street when we were going to the car. I want to remember the feeling of her hair on my shoulder in bed and I want to remember the feeling of her thigh that I liked to squeeze as I drove. I want to remember the way she rolled her eyes at me when I said something stupid and the way that she would say my dancing made me look like one of those robot Santas. I want to remember the soft touch of her lips and the awkward way she would put her long arm around my broad shoulders when we took a walk. I want to remember her being alive, because that’s what she loved most of all. Being alive.
This is when I lied to her.
“You’re doing great,” I said, and that wasn’t a lie.
“We’re here and you’re not alone,” I said and that was true.
But the lie had to come. Could she hear my words? And if she could, did she know what I said next was a lie?
“I’ll be okay,” I lied.
A lot of what I had read about death had talked about the final moments having a holy quality, that there was a sense of something incredible happening. I didn’t experience that. There was no transcendence, no sense of a change of state. She simply stopped. There was a breath and then a pause but that pause never ended. There were no more breaths. We waited a bit and when there was not a gasp, as there had been for the previous ten minutes or so, we knew that it was over. That was it, just a stopping. Nothing special. She just ended.
Some day I’ll write about what happened next, but that’s a story for another time. The short version is that we had her for a little while until the hospice nurse could come back and she could be declared officially dead. I sat that whole time with her, and I kept talking to her as the moment allowed. After all, other folks and family began coming to the house, having been notified of the passing, and everybody needed a chance to have a moment with her. But whenever there was an opening I went back to my little mantra.
“I love you. You’re not alone. I’m here with you all the way. You’re doing great. I am so proud of you and so happy to be here with you. You can go, I’ll be okay.”
I kept talking as long as there was the slightest chance that there was still one neuron firing inside her head. As long as there was the slightest chance that anything I said, even if not the words but the tone of my voice, could make an impression on her as everything that she had once been shut down.
Eventually I had to leave her as her body was prepared for transport. That was the last time I saw her, laying still in that hospital bed, looking I swear to God like she had fallen asleep watching TV. Her head was slightly angled to the right and her eyes were closed and her lips were ever so gently apart, and I had walked into the bedroom at home a hundred times before to see that exact face, that exact look, bathed in the light of the television.
I would see her again at the funeral, wrapped in a shroud, but that… that doesn’t count. This was the last time I saw her.
After a while, at like three AM, people showed up to take her away. I left the room and went into the yard because I couldn’t see a body bag, I couldn’t handle that. My role that evening, I knew, was over. I had done the thing. I had walked her home. I had walked her all the way home.
And now I was alone.