By this time, Gary and I were inured to this kind of treatment. We continued to hope that Britt would mature out of this type of behavior. Hindsight is painful, knowing what we know now about what was happening in her brain. Hindsight brings self-recrimination. Had we missed gradual personality changes because they occurred so slowly? Or had teen behavior blended into behavior changes caused by the tumor? Britt’s tumor was estimated to be nine years old by the time she got married. A lot can happen in nine years.
I watched the wedding grow bigger and bigger. Certainly Gary and I knew that we had no power to change the course Brittany chose. In late May, Brittany wrote me an email that showed signs of stress. She talked about having a panic attack, sobbing, and the fact that she was losing her law school option as of June 1.
One of my favorite evenings during the months of preparation was the engagement dinner at the end of June. Gary and I hosted Dan, Brittany, Carmen, and Barry. The dinner was warm and pleasurable, and Dan’s parents calmed any concerns I might have by their very presence, their inherent goodness. A boy brought up by this compassionate man and witty woman would surely do right by my charming but challenging daughter.
When it came to wedding dresses, I was clearly not on the same page as Brittany. I had been emailing her suggestions in the $800 range. Brittany was looking at gowns six times that expensive. She chose a dress that was truly breathtaking. It was majestic, even regal, with a bodice that hugged her curves and a voluminous tiered skirt. Each tier was heavy with a three-dimensional, swirling-fabric floral design. Brittany looked stunning in it. Underneath she wore a pair of cowboy boots.
I didn’t ask how much this dreamy confection cost because I was sure that the price for a couture wedding dress out of New York would have shocked me. Brittany told me that she was going to save the dress so that each flower that flowed from her hips to the ground could be sewn later onto her future baby girls’ Easter dresses. “I’ll photograph the girls each Easter in dresses created from my wedding dress,” she said.
On July 5, Brittany left for her Kilimanjaro trek. At least she would be traveling with a girlfriend and the friend’s boyfriend. Given that the whole escapade was intrinsically risky, having friends along could only be an improvement over traveling alone. I prayed fervently for Brittany’s safety and asked everyone I knew to pray. I couldn’t help feeling that something was very wrong. Why would my daughter go to Africa and engage in a dangerous mountain-climbing expedition in the middle of planning her wedding? When she was already experiencing a great deal of stress? What was driving her to travel to such far-flung places?
It seemed like every time life started to calm down, Brittany stirred it up again. She hated stress, and reacted physically to it: neck ache, backache, headache, tears, muscle fatigue. Yet in many ways, she created her own anxiety.
I blamed myself. How had I set her up for this? Had I been too strict, or not strict enough? Had I been too protective, or not protective enough? What the hell had I done wrong? I read that some people were born with a personality trait called “sensation seeking,” and that it was about 60 percent genetic. But I knew of no one on either side of Britt’s genetics that fit this description.
In mid-July, we finally got an email from Brittany. It was addressed to Gary, Dan, and me. Brittany’s email captured a bit of the danger and risk-taking involved in summiting Kilamanjaro. She said that the climb was beautiful but very challenging, and that it made trekking through the Himalayas with giardia look like “a cake walk.” She got an intestinal infection and a “skull-splitting headache,” as well, and one of the guides got pulmonary edema and had to be hospitalized. The whole thing sounded torturous to Gary and me, but Brittany later told us with great pride that her guide said she could accomplish anything she set out to do because she was able to achieve a mind-over-matter mentality.
Brittany took fantastic photos of the safari she went on after her climb. I was happy she was safe, and that she had taken a break. When she returned in early August, she’d have to hit the ground running before her big wedding day.
Despite the hectic preparations, the wedding itself was gorgeous. Brittany had created a dream wedding, and she and Dan looked like a dream-come-true couple. Bride and groom smiled at the camera with great hopes, and every reason to think the future would be bright.
As guests and family sat smiling on folding chairs surrounded by the natural beauty of Sonoma, we had no way of knowing that under the bride’s carefully coiffed hair, beneath the veil I’d helped her choose, a large tumor bloomed like an oversized orchid.
27
Twenty-Nine Years
October 2014
Life will undertake to separate us, and we must each set off in search of our own path, our own destiny or our own way of facing death.
—Paulo Coelho, Manuscript Found in Accra
On the flight up to Portland, I thought about Brittany being only twenty-nine years old. I realized she was the age that I was when she was just a babe in my arms. My daughter was dying at a time in life when I had been bringing life into the world. I was almost twenty-nine years older than Brittany. My father, for whom I’d just signed hospice paperwork, was ninety-two, the inverse of Brittany’s age. Today was the 29th of September, the day that Brittany was married only two short years ago. If I were a numerologist maybe these numbers would have had some import, but instead they were another mystery piling on top of all the other unknowns in my life. I don’t understand. That thought went through my mind over and over again.
I don’t understand.
When I entered the house in Portland, I ran upstairs to find Brittany. Her face had changed so much from the medication while I was away, she was almost unrecognizable. I reached my hand out to cup her dear cheek and looked into her eyes for a moment with all the love I could transfer in a gaze. I hoped that my face, my eyes, said “You are always beautiful and I love you.”
That night, Gary and I were to babysit Charley and Bella, who had been brought up to Portland to spend the last days of Brittany’s life with her. Brittany’s head ached so much that we ordered takeout and ate next to her on the couch, on her and Dan’s second wedding anniversary.
I brought a book about massage and tried to use the techniques as I massaged her neck and shoulders, which were giving her great pain, along with the headaches. We were also gifted massages by several friends. Medicine had failed us in every way possible. The doctor running the dendritic vaccine study had not even told Brittany why she was rejected as a candidate for that experimental treatment. The doctor who’d had some success using a polio vaccine had not responded to my emails. We were down to the last thirty days, with no hope on the horizon. Britt now polished the plans, not for a funeral, but for a “life celebration”: music, type of chairs, and what poetry was to be read. She asked to be cremated and have her ashes spread in the redwoods of California. All of this was too concrete for me. Even now, fat, hot tears blur my vision if I think about my twenty-nine-year-old daughter planning every detail of her death and its aftermath.
Brittany had begun falling. Her foot couldn’t send signals to her brain fast enough about an uneven walking surface. She didn’t crumble and fall; she did face-plants. Her legs, ankles, and feet were bruised and swollen, making it even more dangerous to walk. However, when we took walks she wouldn’t let me, or anyone else, hold her arm. She fell again. And again.
Brittany was very self-conscious about her facial swelling, and she asked me to help her write something for the filmmaker to put in the YouTube video. I emailed Britt the following suggested statement. However, no explanation was given in the video for her “moon face,” and this distressed Britt a great deal.
Brittany Diaz’s brain tumor is being treated with several strong drugs designed to reduce swelling of the brain and to try to minimize debilitating seizures. Unfortunately, these drugs come with their own frustrating set of side effects including weight gain and swelling of the face, referred to as “moon face.” In sp
ite of some shyness regarding her new drug-induced appearance, Brittany agreed to be interviewed regarding Death with Dignity because her belief in this basic human right was more important than her vanity.
I emailed my sister Sarah about my fears of Brittany’s passing. An excerpt is below:
What will I do, Sarah? Try to keep anyone from removing Brittany from my arms? Walk out the door and down to the woods to scream and cry? Will I faint? Will I strip my clothes off, scratch my own skin until it bleeds? Will I crawl in bed and take lots of sedatives? If so, where will I get them? Will I be out of it? Having to be led from room to room?
On October 5, Brittany met with her palliative doctor regarding her latest MRI. Nothing was said that made her want to change her plan. She still planned for a November 1 passing. Britt, Dan, Gary, and I left for a trip to the Columbia River Gorge, where Gary had rented a vacation home. It couldn’t have been a better time to get away.
On October 6, People.com posted an article on their webpage. It went viral, with more than 16 million people reading Britt’s story. The reporter assigned to the story, who stayed with it for the duration, was refreshingly transparent, up front, and compassionate. The photo they used was of Brittany with Charley, the Great Dane.
The six-and-a-half-minute video that the New York director made with Brittany, me, and Dan regarding Brittany’s choice to use the Death with Dignity law was released almost simultaneously on YouTube, and that also went viral.
On October 7, from the rental house in the gorge, Brittany requested that her Facebook friends avoid media and decline to be interviewed. News crews had already hit our home, Dan’s parents’ home, and the home of Dan’s parents’ friends in Portland. We had no idea what was happening at the yellow house, but we suspected it was a good time to be away.
By October 8, Brittany’s YouTube video had more than 3 million hits. There was also someone on Facebook who’d created a website impersonating Brittany, and they had seven thousand followers. We were freaked out about that.
We busied ourselves taking a picturesque thirty-six-mile drive through what is known as the “fruit loop” of Oregon, the nation’s largest pear-growing region. It was lovely, and there were fruit stands and vineyards to explore. Unfortunately, Brittany experienced a mild seizure on a train ride that made her tired and anxious to get home. Even so, it was clear to all that she did better when plenty of outdoor activities were planned.
October 13 was a long day for Brittany. She filmed with CBS all morning, explaining her dismay that not all Americans had the right that she was exercising with Oregon’s Death with Dignity Act. The spunky New York gal, who made the first YouTube video, filmed a follow-up video with Britt, Dan, and me. By the end of the day, Brittany was as tired and in pain as I’d ever seen her. She told Dan, Gary, and me that she wanted all the film crews to leave. She also told them to cancel the Meredith Vieira interview that they had scheduled. “I’m done. The only thing I’ll do tomorrow is the video testimony for legislators.”
I went downstairs to heat up Brittany’s neck buddy, and found a film crew outside our kitchen window. I slid the sash window up and asked, “What are you doing?”
The two young men looked up at me in surprise. “Hi, ah . . . we’re filming B-roll.”
“You need to leave. Brittany is ill. She’s resting now. She wants to pad around in her pajamas and slippers.”
“Can we get some footage of your kitchen?”
“No!” I shut the window.
When I went upstairs to give Britt her warm neck buddy and a drink, she began crying. “I’m so tired. No more. I can’t do any more, Momma.”
That evening Brittany posted a note on Facebook that broke my heart.
Thank you friends for all the genuine support as I am dying . . . My medication/steroids has made be [sic] gain weight uncontrollably and blown me up into someone I can barely recognize in the mirror in recent months. As a woman who has worked really hard to fight petty vanities, this is still so hard. My wedding ring is difficult to slide on my swollen finger, it hurts. Add that to an increasing level of intense physical and emotional pain beyond words, terrifying seizures, temporary post-ictal losses of speech, headaches that make my world split open, nausea, ironically loss of appetite . . . To then sit down in front of a major network’s news video camera, be vulnerable about my brain cancer, healthcare choices, logic, fears, my life . . . deep breaths . . . I do it only because I feel this is a HUGE ethical issue and problem in our country. People NEED to talk about it, need to advocate for change, need to vote for equal rights for all terminally ill Americans. No one this sick deserves to be robbed of choices available to some and not others, options. I am exhausted, so tired, and feeling so sick. So sick of looking in the mirror and seeing this hideous cancer staring back at me. I am fighting to stay strong while I can. Then it will be time to say goodbye with as much grace as possible to all those I love with a ferocity beyond words.
If I could’ve granted Brittany anything before she died it would’ve been love of self, because as hard as she was on us, I knew she was harder on herself. With blurry vision, I commented:
My beautiful daughter. Always. Cancer ca [sic] not diminish you. It will try but your sprit [sic] burns bright. Forever.
The next morning I heard a car door slam outside and got up to look out my bedroom window. A giant television van with a satellite dish on top sat directly in front of our house. We had told everyone who interviewed Brittany to be as discreet as they could possibly be, because we didn’t want the location of our house revealed. There were too many crazies trying to be heard.
This was not discreet.
Already we had dealt with all manner of irrational people, both trying to help and trying to hurt. Phone calls from complete strangers with cures like drinking and eating nothing but carrots. Packages left on our doorstep with homemade vegan juices and colon cleanses. Emails begging Brittany not to take her medication, from religious fanatics threatening her with eternal brimstone.
A couple of other cancer patients, with cancers that by definition were unlike Brittany’s, because everyone’s illness is different, wrote open letters addressed specifically to Brittany (that the media published and spread), telling her how to handle terminal illness and begging her not to take medication to lessen her suffering by hastening death. These letters were the worst.
I peeked in to see if she was up, and heard her sleepy “Momma.”
I thought I’d better break it to her rather than let her find out the way I had. I sat on the edge of the bed and stroked her hair. “Sweetheart, there’s a news van with a satellite dish outside. Did you and Dan discuss this again?”
She sat up and threw back the covers. “No fucking way!” She stared out her bedroom window.
I was still in my pajamas when Gary joined me in my room, looking out the window from between the slats of the blinds. Dan appeared outside and began talking to the crew. Brittany, too, peeked through the blinds. “I’m dying, and don’t feel well enough for another interview.”
While we stood watching Dan talking with the crew, Brittany’s interview with CBS correspondent Jan Crawford aired on national television. Facebook lit up with people who had seen it.
Later, after the satellite van left and we’d had breakfast, the team from New York arrived to film Brittany giving her testimony for legislators. This is what Brittany said:
My name is Brittany Maynard. I am twenty-nine years old, and I am terminally ill.
On New Year’s Day 2014, to my great shock, I learned I had brain cancer. Despite the efforts of advanced medicine, my cancer is aggressive and currently without any cure. On New Year’s Day, I was told I may have a few years to live with a Grade 2 astrocytoma. This was a great shock to my family and me.
Then, post-op from a January craniotomy, my April MRI showed significant enhancement, indicative of a higher grade change. I was told I most likely had six months or so to live, my imaging was very indicative of a Grade 4 glioblast
oma based on MRI interpretation. A GBM4 is the most dangerous form of brain cancer. My world fell apart.
I moved to Oregon shortly after with my family from California because it is one of only five states that do authorize the patient right to a choice of death with dignity. I’m heartbroken that I had to leave behind my home, my community, and my friends in California. But I am dying, and I refuse to lose my dignity. I refuse to subject myself and family to purposeless prolonged pain and suffering at the hands of an incurable disease.
Death-with-dignity laws authorize the medical practice of aid in dying. They give mentally competent, terminally ill adults the option to request life-ending medication that they can choose to ingest if their dying process becomes unbearable. The freedom in this patient right is choice.
Besides Oregon, only four other states authorize the medical practice of aid in dying: Washington, Montana, Vermont, and New Mexico. Making aid in dying a crime creates undue hardships and suffering for many people who are terminally ill and suffering tremendously. It limits our options and deprives us of the ability to control how much pain and agony we endure before we pass.
People have asked me whether I explored the medical practice of palliative or terminal sedation. Some claim it is an equally gentle alternative for patients whose symptoms cannot be controlled. The procedure involves drugging the patient into a coma. Nutrition and fluids are withheld until the person dies from the disease or dehydration. No one can tell when that would happen. But each patient is different, and deserves the autonomy and freedom to make this most personal choice for themselves.
I can’t imagine what that experience would be like. I may be minimally conscious, still suffering and unable to move or speak. That terrifies me. Death with dignity is a much swifter and peaceful way to pass. Logic motivates me to choose this for myself instead.
Wild and Precious Life Page 25