Amanda Bernier has died. In spite of my goal to highlight people living with ALS, the disease is relentless and claimed one more before I had a chance to write about her.
Amanda was diagnosed with ALS at age 30, two weeks after she found out she was pregnant in 2014. A volunteer firefighter in Madison, CT, the first sign of the end was when her legs buckled unexpectedly while responding to a call.
Although most people with ALS endure months of endless tests and agonizing worry before getting the diagnosis, Amanda’s journey was pretty simple. Her mother and grandmother had died of ALS. It had been in her family since the 1700s when it was called “the Underwood Disease” because it affected generation after generation.
With genetic testing, Amanda and her husband Chris learned that she had the most common familial form of ALS (SOD1) with the A4V variant which made it the most aggressive form. The doctors warned her she might not live long enough to deliver the baby.
Let me pause Amanda’s story here.
I learned about Amanda in the summer of 2014, after I received my probable diagnosis, when I began googling “ALS and pregnancy.” She was pregnant at the time and when I read the part about her not living long enough to have the baby, the image that popped into my head was DP standing in a cemetery in front of two gravestones – one big, one small — and I began silently screaming.
I could not cause that pain. I could not risk failing him in that way, not with all the heartbreak of lost dreams I’d already caused to start piling up around us that summer: growing old together, traveling, having a beach house. Losing the prospect of having children was bad enough – losing two actual people was immeasurably worse.
But I still followed her story with obvious self-interest. When she was put on a ventilator 5 months into her pregnancy, I read this in an online news article:
“Pregnancy causes ALS to accelerate rapidly. The disease leads to weakening of the diaphragm, a sheet of muscle severely compounded by the weight of a growing baby pressing against it. When the diaphragm weakens, inhalation and exhalation become nearly impossible.”
Hmm, I’d never heard that before. In I Remember Running, Darcy Wakefield’s doctor told her flatly, “there is nothing you can do to make this any worse,” the irony of which led her to decide to have a baby. She never indicated feeling like it sped up her progression.
So who was right? Either way, it was a data point of one. The director at our ALS clinic was no help – she looked at us like we’d sprouted new heads on both of our necks right there in her office when we asked her.
Anyway, I was thrilled along with the rest of the world when Amanda delivered a healthy baby girl named Arabella via C-section in November 2014. With the ice bucket challenge fresh in everyone’s minds, it was no wonder that Amanda’s heartfelt post about breastfeeding went viral.
I was thrilled for her, but I had to seriously question whether we could handle that kind of life. I forced myself to picture the details she shared: people always in the room, holding my breasts so the baby could nurse, the baby biting my nipple when I had no ability to move away or communicate what was happening, DP having two people totally dependent on him that he would worry about constantly…would it be worth it?
For Amanda, the answer was clear. She wrote:
“I waited my whole life to have a baby. Everything I did was for my future child. I worked 3 jobs to get out of debt so we could buy a bigger house, I ate nothing processed, used glass containers to store food, my toiletries had no chemicals, I exercised 5x a week, ate only whole foods, was a vegetarian, etc all to give my future baby the best place to grow. So you see, I already loved Arabella long before she was an Arabella.
I am also a Christian so I would not feel right aborting the baby when soon I would want to be knocking on Heaven’s door.
I told my doctors I didn’t care what happened to my body as long as Peanut was safe and that I would get her to full term. During the 3rd trimester I could not breathe without the vent or move anything but my head. However I delivered her at 39 weeks healthy and perfect. It’s amazing how my dying body gave life to such a precious little girl. We gave life to each other. I would not have gone on a vent or feeding tube if not for her.”
Could I honestly say I felt the same drive to be a mother? No, came the calm, quiet answer. I had wanted to be a mother – my swim/bike/run exercise, nutrition, house purchase, and even name change were all in preparation for children. But with the ALS diagnosis still gaspingly raw and progressing at an unknown rate, it just seemed like too much.
Amanda, fortunately, had more time with her baby than anyone projected. She organized Arabella’s first birthday party with her eyes. “Thanks to my computer, I was able to do everything for the party that I would have if I were healthy — creating the invite list, ordering invitations, finding decorations to make on Pinterest, and planning the menu,” she wrote.
Aside from time spent making money as a Jamberry consultant and answering questions from her many fans, Amanda was devoted to interacting with her daughter and creating future memories for Arabella. According to Good Housekeeping, “[s]he’s made scrapbooks and journals, as well as cards for birthdays and milestones like Arabella’s wedding day. Arabella will also have gifts from her mother for her first 21 Christmases. Amanda’s hope is that she will always know who her mother is and how deeply she loved her.”
She will. I’m sure she will.
Amanda’s funeral was today. Her obituary leaves us with one more bit of inspiration, whatever your journey:
“She has shown us how to focus on the positive no matter what life may bring. Amanda did not want people to mourn her loss, but rather celebrate her life. Take the time to stop, pause, and realize the beauty and wonder of the world around you.”
The race report for the half marathon I did this weekend to celebrate Amanda’s life. Also the race report for Heroes & She-roes, which I’ve been wrestling with for almost two weeks…