My Life After Brain Surgery

I’m going to share something that I have never, ever shared before, and I’m really terrified about it. So I’m going to just perch here, and I’m going to refer heavily to my notes, and I’m going to ask you all to forgive me in advance.

On some level, I believe that our lives are defined by a series of conversations: the ones that we have, the ones we should have had, and the ones we never, ever could have imagined we would need to have.

I had one of those conversations exactly 525 days ago, on June 29, 2017, and it was one of the most important conversations of my life. I was in the car with my man, Antonio, and we were driving home from Spaulding Rehab Hospital, where I had just finished my first evaluation to see how I was doing after the nine-and-a-half-hour brain surgery I had had eight days prior.

I was not doing well.

Nine and a half hours of brain surgery causes some pretty serious swelling, so technically, walking smack into the edge of a door the first time I got out of bed, or being absolutely unable to answer when asked basic questions like, “What day is it?” or “Where are we?” wasn’t supposed to be alarming.

My first walk had been with my man, around and around the floor where you go after brain surgery. I was physically so strong I could have walked for days, and although they said not to overexert, I kept finding excuses for us to keep going. It wasn’t because I wanted to show I could do it. I was trying to figure out how to read the signs in the hall, on the doors to patients’ rooms, and at the nurses’ station.

I couldn’t.

I knew they were supposed to be communicating something, but I had no idea what. The idea is that as the swelling goes down, ability goes back up. But as my surgeon had said to me with enormous clarity in one of our preparation discussions, “To get to the bad part of the brain, we’ve got to go through the good.”

That was always the risk. I was terrified that in getting at the bad, we had hurt too much of the good.

On this eighth day after surgery, I was beyond anxious. I had been discharged on day three, much earlier than anyone expected, because by hospital standards I was doing so well. But by mine, not so much.

We met with a speech therapist named Rachel. She was wonderful, and while I clearly wasn’t all better, I also wasn’t all bad. Next up was occupational therapy. In my mind, occupational therapy was just a fancy word for physical therapy, and physically I was great, so this felt like a simple formality.

I didn’t start to panic until we walked into the OT room. It was huge, with patients all through it doing all sorts of things. Over in the corner was a large square table with five people seated around it, and they were all staring at me like an animal in the zoo. Having my kind of surgery was pretty unusual, and they were curious.

It suddenly hit me: I am fascinating for a reason, and this might be about to go in a way that I am not expecting.

The first task was to draw the face of a clock. My heart rejoiced. We got this. But my mind didn’t know what the face of a clock looked like.

The lead therapist leaned over and said, “Just draw a circle.”

Still blank.

So she drew it for me, and everyone just stared. She put a 12 on it and said, “Can you put in the numbers?”

I put a sort of one where the three should be and something maybe like a two where the six goes. Then I stopped.

The woman, kindly now, with her hand on mine, said, “You need to put in the three through 11 here,” pointing.

I couldn’t even begin to describe to you what I put in that circle, except this: it was wrong, and I knew it.

Now my heart was racing and I was flushed. The next exercise was to move marbles from one wooden box to another as quickly as I could. I bombed, and it only went downhill from there. I felt exposed and very, very, very alone.

I’m not a big crier. In fact, I had only cried a few times since getting diagnosed incidentally six years before. Incidentally, as many of you know, just means by accident. I had no symptoms and got a CT scan only because there was worry I had a throat infection that would go to my brain.

I would say I never cried because I didn’t want anyone to worry, but I realize now it was also because I was terrified of being a burden, and I didn’t want to feel weak.

I managed not to cry while we sat there in that room, but I wanted to. When we got in the car, I didn’t just start crying. I ugly cried.

I mean body-wracking, deep sobbing, unable to catch my breath, boogers-everywhere crying.

When I finally could speak, I remember saying to Antonio, “Babe, what am I going to do? My brain is not working. How will I care for our family? How will I do my job? I love our life. What will I do? What will we do?”

I have never loved my man so much as I did in that next moment, because he thought long and hard. Then he turned to me and said, “Well, then we’ll get a farm.”

I sat for a minute. I thought, a farm. Hmm. I really like animals, and I really do like farms. That little fire of hope reignited in my belly, and I turned right back to him with a big, boogery smile and said, “Okay. We’ll get a farm.”

By July 1, I could write words again. By the third, sentences. Numbers and I were falling back in love by July 8, and by the middle of July, I was cleared to get back to life.

Instead of becoming a farmer, I went back to the work I had been doing with the energy of a madwoman. I was so grateful to be alive, to have the opportunity to do more, and to build on all my scars. The one on my head, yes, but also the ones that had come before.

My brain tumor was benign, but my sister-in-law, Za, had not been so lucky. In 2004, seven months after she was diagnosed, she died of glioblastoma, or GBM, or “[expletive] brain cancer,” as we like to call it in my house.

She had been 32. Her daughter, Alessia, was not yet three. Alessia is now one of the most beautiful 17-year-olds you will ever see.

That experience, and how suckily our country managed end of life, was imprinted on my soul. It was the foundation for an effort called Engage with Grace, which we designed in 2008 to help get people thinking and talking about how to live our very best days until our last.

Before Za got sick, I had also started a company called Eliza. We were using this crazy, cool technology to do something no one had ever done before: using speech recognition to proactively reach out to people and engage them in a conversation about their health, with the goal of encouraging, supporting, and beguiling them into taking better care of themselves.

Over the course of my time there, we did over one billion interactions. The thing I learned more than anything else was that all these people we were trying to reach and influence didn’t care at all about the things we were trying to get them to talk about and take action on, things like their diabetes or their heart disease.

They didn’t have that luxury because their mother with Alzheimer’s had just moved in, their partner was cheating, or they hated their boss so much they couldn’t breathe.

So we started this movement called the Unmentionables, making the argument that the biggest diseases in the U.S. were actually these life challenges: caregiver stress, workplace stress, financial stress, and relationship stress.

We set about finding a way to measure and impact these things that you could think of as life-sucks disease.

After Eliza was bought, Sara and I, my co-founder in ARCHANGELS and Rebel Health, knew we had to focus on supporting caregivers: the 44 million Americans providing unpaid care for an adult or child who was ill or disabled. Many of us spend over 20 hours a week at this job. Many are in the Sandwich Generation, caring for aging adults and children at the same time.

Caregivers are really, from our perspective, at the epicenter of this life-sucks superstorm.

So we started ARCHANGELS. Our initial attempts to identify, honor, and connect these caregivers to resources failed miserably and repeatedly, because caring for caregivers is hard.

So I had a midlife crisis. I came to the conclusion that I lived in a bubble, and in an effort to get out of that bubble, I went to work as a cashier at Walmart.

In very short order, I realized that all those people I had spent a career trying to entice to come take care of their health in the traditional healthcare system might not be interacting with the medical world, but they sure as hell were coming through the lines at Walmart.

In fact, 50 percent of the U.S. goes to a Walmart every single week, and 95 percent go at least once a year.

It hit me: retail is the front line of health. We need to stop waiting for people to come to us and bring what we’ve got back out to them, where they are, in the messy realities of their lives.

Just like that, starting with Walmart store number 2660 in North Reading, Massachusetts, shout-out to store 2660, ARCHANGELS was reborn.

A few months ago, I had to get an MRI to check in on how I was doing. For some reason, lying in that machine, with Antonio waiting right in the MRI room with me, holding my leg again, missing work because of me again, bearing the brunt of my anxiety in the days leading up to this annual screening again, and realizing he was about to share the heart-stopping panic of waiting for the results again, it hit me.

He is a hero. He is my caregiver. He is an Archangel.

I know I’ve talked forever about how hard this job is. I even started a company around it. But there’s something about lying in an MRI machine just over a year after brain surgery where you also realize, wait a minute. If he’s the caregiver, then I’m the patient.

While I am so deeply grateful for all this help, wow, do I feel guilty for needing it. Being a patient is just not how I see myself. It feels needy and dependent, like a burden, and there is an element of shame in that.

That’s really the theme of all this work over the years: to dig in especially hard on these harder bits, in these dark regions of our hearts and souls and minds where lives the part of us that feels shame.

I’ve seen over the years that where there is shame, there is usually just a conversation waiting to be had. The oxygen that fuels this dark, dark place is our thinking that we are the only one.

We are never alone. Never, ever, ever.

Our work with ARCHANGELS is off and running now, a movement to support and honor caregivers using retail as a front line of health. But changing culture is not a one-and-done thing. It’s a process, one that happens in fits and starts, where we often learn more from what’s not working than from what is.

We’ve started to explore whether part of what we’re talking about is not just having the community honor the caregiver, but having the community honor the act of caring. In celebrating the caregiver, we don’t want to accidentally denigrate, victimize, pity, or make the person they’re caring for feel even more guilty.

Talking about the caregiver and not the person they’re caring for is sort of the sound of one hand clapping. It might even inadvertently be pitting the two against each other.

If the honoring of one does not inherently lift up and celebrate the other, then we introduce discord where harmony is needed most.

When we name and work to address only the shame of the caregiver, maybe in the process we reinforce and drive even further the shame of needing care.

How can we make that honor flow both ways? Would making the honor flow both ways create a harmony, even just in naming it, that is self-reinforcing?

What if the ARCHANGELS movement included picking your caregiver, really your Archangel, and asking them in advance?

What we do now, sometimes at best, is appoint a power of attorney or a medical power of attorney. This is an act devoid of joy. It is highly technical, cold, and something we never talk about.

But just because we don’t talk about something doesn’t mean it’s not happening. Caregivers are becoming caregivers every moment of every day. There is just no celebration, no honor, and no glory.

One of the only positives we hear consistently from caregivers is that when given the chance to be seen, when acknowledged for the great honor of what they do, caregivers feel purpose. Having purpose, as we heard earlier, is what makes for a good life.

But it’s hard to see the glory and feel purposeful in something invisible, something nobody ever talks about.

Just as important, until being a caregiver feels seen and honored, being cared for is also going to feel like crap.

Left hand, right hand.

We bring enormous intention to asking someone to marry us or asking someone to be a godparent to our beautiful new baby. Isn’t this that important?

Will you be by my side as I age? Will you care for me? Will you lie with me? Will you hold my hand when I am terrified? And in turn, because I know you will be as well, will you let me hold yours? Will you tell me in advance what will make this easiest for you and what about it will be the hardest?

Maybe most important, my favorite line in When Breath Becomes Air is when Lucy is entreating Paul: “Won’t having a baby together when we know you’re dying hurt so much?”

He says, in his infinite wisdom, “Wouldn’t it be great if it did?”

We’re not here to take all the pain away from each other. That’s not possible. We are here to support each other through it.

When you support me, you give me solace, comfort, and love. When I let you support me, I give you purpose, a role, and a mechanism for channeling that love.

Left hand, right hand.

I have always been worried I will die young. Losing my sister-in-law to brain cancer at 32 and finding out seven years later that I had a brain tumor myself hasn’t done a lot to quiet those gnawing fears.

As many of you know, and as Jeremy said so beautifully, that conviction can actually be a tremendous gift, creating a ferocious, almost joyful urgency that spreads out into every corner of everything we’re lucky enough to get to be able to do.

Eleven days ago, my man and I had another conversation. It was a Sunday night after Thanksgiving, and we were on a date. Partially to reconnect after a crazy holiday. Partially because the stress of this talk was making me a nightmare. Sorry, babe. And partially because on Thanksgiving morning, my cousin Court had died.

He was 52, and he was a magical human, intentional beyond belief. He went out for a quick run before everyone arrived for dinner, and he suffered a massive heart attack.

Sometimes you spend your whole life preparing for death and you live to be 90. Sometimes you have no idea, and it happens with no warning at 52.

All through dinner, I kept choking on the unexpectedness of losing Court, the unpredictability of life, the lack of permanence, my own fears, my kids, my man, and all that one holds dear.

At one point, Antonio put his hand on mine and said, “Babe, we’re okay. You’re okay. All your tests are good. We’re fine.”

I said, “I know. But one day I may not be. Then what will we do?”

He turned to me, took both my hands in his, looked straight into my eyes, and said, “Then I will be your Archangel, and we will get a farm.”

We all have an Archangel in waiting. We just need to have this conversation so that when our time comes, whatever our farm is, it will be waiting for us.

Thank you.