Bearing a Terrible “How”

I can’t stop thinking about Brittany Maynard.

Does she read the articles and blog posts that are written about her and her situation? Did she read Ann Voskamp’s beautiful plea or Matt Walsh’s thoughts on the culture of death and the value of life? Does she care? Is she afraid? Does she have any second thoughts? Is she dreading November 1st? Does her husband want to beg her not to do it?

I have no idea what it’s like to be in Brittany’s shoes. None. I don’t have cancer. I have never faced that kind of suffering and pain, both physical and emotional. And I think that’s what makes it difficult to feel like I have a “right” to speak here, a “right” to tell her she’s making the wrong choice. But I know that regardless of the horror of her diagnosis, Brittany’s life has immeasurable value, and so do all the other lives potentially affected by her decision.

When Robin Williams took his own life, we recognized that for what it is: a terrible tragedy. Despite the asinine “Genie, you’re free” tweet by the Academy of Motion Picture Arts & Sciences, most people mourned his death, spoke about it as a failure of our health care system to care for mentally ill patients, and discussed how suicide can be prevented. If a person kills them self because they are depressed, we recognize this as a tragedy. As something we as a society should have, could have stopped. But for some reason, if a person plans to kill them self because they have cancer (or another bodily illness), we think it’s courageous, brave, and dignified? Why? Is mental illness not a “real” disease, as cancer is? I certainly hope we’ve come further in our understanding of mental illness than that. It is very real and a source of deep suffering for those afflicted by it. But apparently it doesn’t warrant suicide, where cancer does.

Although the fact that a young, beautiful 29 year-old woman has decided her best option is to die via a little pill is heartrendingly sad, all the more disturbing is the general reaction to her decision. My Facebook feed is filled with links to her story and commentary like, “Wow! Such a courageous and inspiring girl!” and “Brittany, you are so brave,” and “I hope I would be able to go with this much dignity.” This is not inspiring, brave, courageous, or dignified. In fact, Brittany’s “choice” is born out of a conviction that she doesn’t really have a choice. That when confronted with suffering, “dignity” and “freedom” can’t be found anywhere but in death. It reminds me of women who have had an abortion and insist they “didn’t have a choice.” No normal human being kills them self or their child out of freedom. They do so out of desperation and fear, like an animal in a trap chewing it’s leg off.

Life has value. All life. Even in unspeakable suffering. “Choosing” to extinguish it is not a real choice.

Shortly after Will was born, we received a poorly written letter from the State of Georgia in the mail. It said, “Based on your child’s blood tests at birth, he/she has tested positive for cystic fibrosis.” W.T.F. I felt like someone had stuck a knife in my heart. I almost went down on my knees right there in the driveway. After a frantic phone call to the pediatrician’s office, I ascertained that Will had tested positive for 1 (of the 2) genetic mutations associated with CF. Of those children who test positive for only 1 mutation, around 3% actually have cystic fibrosis. While this was a huge relief for us, we obviously still had a lot of apprehension and fears about our sweet boy’s health and future. (And also a not-small amount of rage directed at the morons who wrote that letter.) We had to take Will to Children’s Healthcare of Atlanta to have a “sweat test” done. This basically involves bundling the newborn baby into an obscene amount of clothing and being locked in a 90 degree room to make him sweat. They collect the sweat and are able to identify children with cystic fibrosis via their sweat. Except, my skinny little man couldn’t sweat enough. They told us to come back in a week. Another week of wondering and waiting. As we sat in the CHOA waiting room again the next week, I thought, “This is what it’s like to have a sick child. You spend your entire life in hospitals and at doctor’s offices. If he has cystic fibrosis, this will be the rest of our lives.” Once again, we trundled back to the little heated room. The husband and I stripped down to our jeans and tees (in December). Poor Will laid on the table while we waited for him to sweat. He did manage to sweat a tiny bit more this time, but still not quite enough. They began to tell us we’d have to come back next week, until the husband broke in. “No. This is my son. I don’t care if there’s only a 3% chance he has this disease. This is my son, and that’s not comforting. Please make it work so we can resolve this.”

The nurse went back to the lab and emerged 10 minutes later. “Okay,” she said. “They’re going to do it.” Thanks be to God, Will does not have cystic fibrosis, as we found out a week later when our pediatrician called us to give us the results. But if he had, not one thing about my love for him and how essentially good he is would change. His long lashes, big blue eyes, chubby cheeks, skinny body; all of it would remained loved and cherished and desired. His life on this earth, whether short and full of the suffering of chronic illness, or long and peaceful, would remain beautiful and the most precious gift I have ever been given.

Brittany Maynard’s life is beautiful. When I saw one of her wedding photos, I smiled. She is a gorgeous girl with a lovely smile. She is a gift- to her husband, her parents, her friends. So why are we telling her that her life is without value in the face of suffering? Yes, I know. I haven’t suffered like that. But Viktor Frankl, author of Man’s Search for Meaning has endured unspeakable suffering, and concluded, “Those who have a ‘why’ to live can bear with almost any ‘how.'”

Our society is so focused on avoiding suffering at all costs, we have lost sight of the fact that life is valuable and meaningful, even beyond an unfavorable pleasure to pain ratio. No one wants to suffer. But those who suffer well show us the beauty waiting to be found there. Frankl also said that, “Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and freedom.” True freedom looks like Dan and Jenna Haley, and their sweet son, Shane.

Dan and Jenna knew Shane would not live long after birth, and he did not. But rather than simply end his life so they could “move on,” to preempt suffering via any means possible, they embraced the gift of Shane’s life, taking him all over to see and do things they had enjoyed as a family. Shane passed away in his mama’s arms shortly after birth. Their loss is unimaginable. But they did not lose the opportunity to receive Shane with love.

At the end of the day, I don’t blame Brittany. I can only imagine that she is frightened, dreading the excruciating pain her doctors have no doubt described in great detail. I understand why control feels like dignity. But I blame every single vapid cheerleader on Facebook and in the media, egging on a sick woman who plans to commit suicide. This is nothing short of pure evil.

Brittany, you’ve been dealt a terrible ‘how.’ One I can’t fully comprehend. But I know your life is valuable and no less so now than before your diagnosis. Please, consider living it with the dignity inherent to it.


2 thoughts on “Bearing a Terrible “How”

  1. Wow. This was so powerful. This is my new favorite blog. Such an important distinction to make between courage and fear. We had a similar experience with Ruth. They told us a week after her birth that she had tested positive for a life threatening metabolic disorder. We had to go to Scottish Rite to have her blood drawn and have a urine sample. Scott had to wheel me around the hospital because I couldn’t walk yet. They wanted to catheterize our one week old, and Scott told them they were not doing that to his baby, and I am so glad he did. We spent a miserable month trying to collect urine over and over again so that they could have enough to test, they finally said her urine tested outside the normal limits, but if she had survived a month without being on a special diet, she probably didn’t have a metabolic disorder. They really should handle these things better. I think the stress of that month shaved years off my life.

    1. Seriously! I know medical professionals deal with this stuff everyday, but how is it not possible for you to wrap your brain around the fact that you are talking about someone’s baby?!

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