You may believe that Brittany Maynard was fearless. I often refer to her as fearless, courageous and brave. Recently I’ve been examining the inner mechanics of this characteristic. When Brittany was first diagnosed by a rather insensitive doctor, she was told that she had a massive brain tumor that would kill her. Her diagnosis was terminal brain cancer.
Of course Brittany was frightened. Everyone in the room was frightened into silence, except Brittany. Not my daughter. She asked questions. Good questions. Direct questions. Frightening questions. She forced eye contact and demanded answers.
What did Brittany have that we didn’t have in this situation? Why was everyone else shocked into silence? Why weren’t we able to speak up, take care of her, protect her? Of course as her mother, this thought haunts me. And as her mother, I have my thoughts about her fearlessness that day.
Was she more prepared for this news, than the rest of us?
My daughter had been experiencing headaches for over a year. None of us could imagine what those headaches were like. Brittany had inside knowledge about the level and duration of the pain. Indeed the pain had driven her into the shower at night. This internal knowledge about her condition was something no one could fully share.
She had also already been in the intensive care unit for brain trauma for three days. She had the words “shadow on the brain” bouncing around in her mind since those mysterious words were uttered in a small town hospital. Although my husband and I had also heard that diagnosis, as parents, we went into immediate denial.
How did my child face the diagnosis so forthrightly?
I think there were some things that helped her understand her situation.
First of all, Brittany had taken more college level courses in Biology than anyone else in the family. She loved her studies in this field and I think she was better prepared to make sense of the medical “mumbo jumbo” the doctor shared with us.
“A large infiltrating non-enhancing lesion present in prefrontal lobe, extending posteriorly into left temporal lobe and crossing into the left hemisphere pushing and misshaping the right ventricle.”
Brittany heard this differently than I did. I heard lesion and thought of a lesion on the skin, a scrape, a wound. Brittany knew from her biology that lesion of the brain was abnormal tissue found on or in the brain. She also quickly did the math on large, comprehending immediately that the abnormal tissue was in 3 of her 4 brain lobes. I’m quite sure I didn’t understand this. I remember picturing something like an ulcer or wound on the brain. Tumor didn’t enter my thoughts yet.
Brittany also focused on infiltrating. I heard that word but didn’t know how to process it? It sounded ominous.
Fear was her friend, not her enemy.
Brittany was as afraid as anyone else. It was actually fear that drove her to be courageous, not the lack of fear. However, Brittany managed her fear differently than the rest of her family.
Brittany leveraged fear. She understood that she had every reason to be fearful and that it was a warning. Fear was her friend, not her enemy. Fear would drive her to make plans and stick to them.
Britt decided early on that her fear would motivate her to become a walking encyclopedia of information about her disease. She quickly realized that her actions, her decisions would have an impact on how the rest of her life was lived.
Brittany looked around at the shocked and grief-stricken faces that surrounded her. She noticed that some people in the family were hearing what they wanted to. She noticed that some family members only took notes on the positive things said by doctors and didn’t note the overwhelming amount of negative information.
I think she experienced another level of fear because she dreaded that her family wouldn’t “get it”. One night in the hospital she said, “Momma, I’m dying. You get that don’t you?”
Despite her terminal diagnosis, Britt gathered information and made plans for herself.
My daughter shifted her focus from fear to actively dying. She shifted her focus from fearing the end to planning the end. She shifted her focus away from being sick and fearfully participating in treatments that doctors admitted had no hope of saving her. She focused on how much those fruitless treatments would affect the quality of her last days of life. She focused on gathering and reviewing the facts.
Brittany looked at what the worst case scenario would be. Doing nothing would certainly lead to the worst scenario. Instead of fearing that end, she prepared to avoid that worst case scenario. She formulated a plan. She crafted a backup plan. And once we snapped out of denial, her father and I even worked on a backup plan to the backup plan.
What determined Brittany’s remaining months on earth was the action she took. If she had not taken action, her worst case scenario would’ve become a reality. Even in choosing a day to die, Brittany allowed herself some room for strategy. “If I suddenly begin having more frequent and intense seizures,” she told us, “I will pull the date forward.” If her symptoms plateaued instead of a worsening, she would push the date out. She created a sliding date on her calendar.
As November 1st drew near, she evaluated the risk of pushing the date out. If she pushed the date out and suffered a seizure that took her ability to speak away, or if she was paralyzed, the peaceful death she had worked so hard to achieve would be at risk. The law requires that the patient self-administer the medication.
Fear has always had evolutionary value to promote survival of the species. Fear is supposed to protect us from anything that threatens to destroy our life, or our physical and psychological well-being. Fear protects us from losing our connection to other human beings. Fear protects us from losing our autonomy.
Brittany was dying.
Brittany’s tumor was on a path to take away her health in a dramatic way. She would lose speech, thought, sight and the ability to move. Further, these losses were leading to an inevitable end. Brittany was dying.
It became clear to my daughter that doctors weren’t making decisions about saving her life; they were making decision about extending her life. Further, the extension of life they spoke of was measured in months not years. Finally, those extra months, if they even could be achieved, would come at a great cost. She might extend her life by a month or two with radiation but the treatment would cause great damage to the healthy portions of her brain. If the radiation bought any time, the time would be for a very different quality of life. The girl living those last months would be suffering losses and pain.
Autonomy, the right to make her own decisions, to live in the way she chose, was of paramount importance to Britt. She didn’t like the thought of becoming a shell of herself, of being restrained to a bed, of being imprisoned in her own body.
A Life with Purpose
Further, Brittany had a deep passion to lead a life of purpose. She protected her self-worth. Again fear entered the picture. Brittany feared a life that was not lived. She didn’t define life as simply breathing. She defined life in terms of travel, connections with those she loved, connecting with nature and of volunteering to make the world a better place. If she couldn’t do any of these things, she felt she would be dead already.
My daughter taught me that fear is normal but does not have to be paralyzing. We can identify what frightens us and try to use that fear to make decisions that lead to a fuller life. Sometimes when I am afraid, I realize that it is actually a nagging low-grade anxiety. This worried background hum is debilitating. It makes my life smaller.
These days when I feel this way, I place my hand on my heart and tell myself gently, “You are okay.” And I am. I am not starving. I am not without shelter. I am … okay. If I allow myself to return to the feeling I had while Brittany was dying, a feeling of helplessness and fear, I will fall into a hopelessness or depression. My life will become smaller. That is not what my daughter wanted for me.
And so for Brittany, in honor of Brittany, I refuse to cling to fear. I tell myself that fear is as normal as breathing.
I love the bronze work by sculptor Kristen Visbal, called “Fearless Girl”. I recently visited “Fearless Girl” on Bowling Green in Manhattan’s Financial District. Her similarity to Brittany at that age was uncanny. The defiant girl, hands on hips, feet firmly planted apart, chin jutting forward could literally have been based on Brittany at that age.
As I stood there, I was torn between different emotions. One was to protect the little girl. I wanted to shield her from the bull. I wanted to stand between her and the bull. That was my internal mothering instinct. I was reminded of the reaction that I initially had to Brittany’s diagnosis. Take me. Not her.
But, my second emotion was that I should emulate the little girl. I should try to stand bravely as she does. I should square my shoulders and face the future I’d never dreamed of living. Life without Brittany. My old age without Brittany.
So, I tried to adopt the fearless girl posture. And as I stood there, I knew that Brittany wanted me to concentrate more on this posture. I realized that she had asked me to stand up and speak even when my voice shook. “Stand up for the terminally-ill, Momma. This is the legacy I leave you.”
This month I joined the board of Death with Dignity. I know that Brittany is proud. I am doing just as she asked by volunteering my time on behalf of those who are terminally-ill.