Framingham’s Jessica Fein hosts the “I Don’t Know How You Do It” podcast, having conversations with people whose lives seem unimaginable. Hers was: Her daughter, Dalia, was diagnosed with MERFF: Myoclonic epilepsy with ragged-red fibers, a progressive disease that weakens the muscles and nervous system.
She died a week after her 17th birthday. Fein is familiar with tragedy: When she was 27, her then-30-year-old sister died of sudden cardiac arrest. Her father, the Jewish scholar Leonard Fein, wrote about that loss in his book, “.”
Fein carries on the tradition with a new book, “Breath Taking: A Memoir of Family, Dreams, and Broken Genes,” examining Dalia’s death with a Jewish perspective. She also writes the “Grace in Grief” column for Psychology Today. We talked about living with joy and dying Jewishly.
You lost your daughter in 2022. This is still so fresh. For those unfamiliar with your story, could you share a bit of background?
Absolutely. My book actually starts with the sudden death of my sister from cardiac arrest when I was 27 and she was 30. This was my first experience with intense loss and grief. Up to that point, I had been living in a hazy bubble, and that loss punctured the bubble. I started to see the world through the clarity of that puncture.
My husband and I thought we would start a family and went about trying to do that the conventional way. It did not happen for us. We became increasingly creative in our efforts and ended up in Guatemala, where we adopted three babies over five years. We thought the hard part was done.
When our middle child, Dalia, was 5, she was diagnosed with an ultra-rare degenerative mitochondrial disease called MERFF: Myoclonic epilepsy with ragged-red fibers. Later, she got a secondary diagnosis within the mitochondrial disease family, making her one of six in the world with that dual diagnosis.
We really had no idea not only what it meant to have a degenerative, ultra-rare disease; we didn’t even know what mitochondria were. When she was 9, she became very sick. It started as a cold. We were on a family vacation in Florida, and she ended up intubated and transferred home to Mass General, where we stayed for three months. At age 9, when she left the hospital, she’d lost her ability to walk and talk and eat and breathe without a ventilator.
Did you suspect anything was amiss before her diagnosis?
We hear this a lot from parents, where they suspect something is wrong with their child. Maybe the speech is delayed, or the movements are awkward. Doctors say: “Give her time. She’ll catch up.” I really did have a hunch something was off. But, you know, especially when you’ve adopted, you don’t know what the prenatal [care] was like. You don’t know what the genetics are like. Early intervention came out to our house three times to assess her, and three times they said she was on the lower end of average, but that she did not qualify for services.
The reason we ultimately got the diagnosis is because I was able to get the doctor on board with a hearing test. They thought maybe something was off with her hearing, which could explain her garbled speech and balance issues. She was diagnosed with mild to moderate hearing loss because we didn’t know if there had been an early virus. We didn’t know if there was any genetic situation. We were then referred to genetic testing. In Dalia’s case, [the disease] was very prevalent in her blood. So a simple blood test unearthed this horrendous disease.
What happened once she came home from Mass General?
She became an “eyes on” patient, meaning my husband or myself, or a nurse trained specifically in her care, had to literally have our eyes on her 24/7. If I was home alone with her, I was not going to the bathroom without wheeling her in. She died one week after her 17th birthday.
This sounds like such a simplistic question, but it’s also practical: How did you manage with two other children?
That’s the tongue-in-cheek name of my podcast: “I don’t know how you do it.” I welcome the question because not only did we have two other kids, but my husband and I also both worked full-time. Dalia went to Kennedy Day School at Franciscan Children’s, which was a fabulous place. She went with a private nurse, every day, to school. And during that time, my husband and I worked. It is something that I got a lot of backlash and judgment for. We had nursing care, but many of those nursing hours went unfilled, in which case my husband or I would spend the night in her room.
We really tried to give Dalia and the other kids a childhood. We tried to do things. They weren’t big, grand things. It may have been going to Target, but that became an extraordinary thing, because there was such a victory in doing these very ordinary things. We brought Dalia everywhere.
For the last two years of her life, she lost the ability to move at all. And then it was COVID, and we really built a world around the house and around Dalia’s room. Dalia was really committed to experiencing life and to doing things and smiling and to not curling in the fetal position and giving up. So we followed that lead.
You talk about Shiva and the concept of sitting in darkness, and how it can actually bring illumination, or light.
My nickname, which I wear proudly, is “Shiva Girl.” I am a big fan of Shiva, and here’s why: It gives us a time out of time. We know what is going to happen that night, the next day. We understand exactly what’s going to happen when there’s nothing in the world that makes sense, when everything is chaos and off-kilter and unfathomable. There’s an order that we follow.
No. 2, the very notion that people come to us, that it’s a community that is there and present, day after day, that is nourishing us, literally and figuratively. If you are observant, you’re waiting to take cues from the griever. When you visit, you don’t talk to the mourner. You don’t talk until they initiate. Sometimes, the most meaningful thing you can do is sit with someone in the sadness.
What happens when Shiva ends and reality creeps in?
Being traditional, we know the next thing that’s coming is Sheloshim for 30 days. And then, depending on who we’re mourning, we might be mourning and saying Kaddish for a full year. We understand that grief is not something where: “OK, your seven days are up. You should be done now!” The Jewish timeline gives us that seven-day, 30-day, full-year construct.
I have been very close to a couple of people in my life who have lost parents in families that are not Jewish, and it’s made me realize even more what the Jewish community provides at this time. One of the most gorgeous things I ever witnessed was when I was sitting Shiva for my stepfather forever ago in Brookline, and one morning we didn’t have a minyan. And the rabbi said, “Don’t worry.” And he had a beeper—this was a while ago. He contacted a guy we didn’t know who showed up within 30 minutes, and he was essentially on call for that very purpose, to fill a minyan. It was like a superhero, Shiva Man, showing up. But the idea is that we drop whatever it is to be that No. 10 when needed, because we understand that we don’t leave the griever to fend for herself. We come together as a community, quite literally.
What will readers learn from your book?
One of the first things that I hope people take away is that, as humans, we are capable of so much more than we think we are. I did not sign up for this. And as an adoptive parent, a lot of people along the way assumed that I had, because when you adopt, of course you have reams of paper and studies and surveys. One of those is: What kinds of medical conditions would you accept?
And I felt like, geez, we’ve been at this for years now, five years of fertility treatments. I want a healthy kid. I didn’t check any of those boxes. I would never have thought I was qualified. By the time Dalia was diagnosed at age 5, my first reaction was, “Thank God I hadn’t known, because then she wouldn’t be my daughter and I wouldn’t be her mother”—and that was so clearly how it was supposed to be.
Everybody will say: The worst thing is losing a child. The worst thing is watching your child suffer. I would have supposed there was no way also to have a life of joy and meaning and beauty, to laugh, to smile. I would have thought those things were mutually exclusive. And what I learned, and the main message of my book, is that those things go hand in hand. That’s something I learned from my daughter. We worked really hard to create joy and meaning despite the chaos and the uncertainty and the tragedy.
