Self Care: Putting on My Oxygen Mask Before Helping Others

When I think back to 2018, it’s hard for me to remember what I did to take care of myself. I was so in the trenches of motherhood and marriage that I seldom sought traditional self-care. I wasn’t one to take lavish vacations with girlfriends, meditate or do yoga on a daily basis, or spend days at a spa. That said, I’ve always had a regular exercise practice. Since I ran on a track team back in 1987, I’ve gone to the gym and lifted weights, done cardio circuits, and sweated through core conditioning. Even when my family was falling apart, I hauled by butt into the gym and sweated at least four times a week.

Also, right around the time my husband, Kirk, was diagnosed with lymphoma in 2017, I started seeing a therapist. I could already feel the caregiver burnout because I was caring for my son, Ethan, who had serious behavioral issues. Fourteen years of living with a kid who lashed out in anger, lied compulsively, and had no impulse control around substances had taken a toll on me as a parent, but when Kirk got sick, I felt my nerves start to fray. When my mom started showing signs of ALS, I lived thousands of miles away from her. I was largely insulated from the day-to- day care of an ALS patient. But as she got sicker, and I visited her more regularly, many of the responsibilities fell to me. I was grateful that my meetings with my therapist had given me the tools to deal with the hard stuff: seeing her lose functions, taking her to the toilet, preparing her food, crying with her, getting her in and out of a car.  

My younger son, Alex, who was only twelve at the time, could see how stressed out I was, even with the therapist and the exercise. I often didn’t sleep well and woke up in the mornings with huge bags under my eyes. I was grumpy most of the time, and my cuticles bled from me ripping them off. He begged me to get on an anti-anxiety medication. I went on Lexapro in 2017, and I’m convinced that I couldn’t have gotten through that tough time without it. In fact, I’m still on Lexapro. It helps me get out from under the fog of depression and anxiety that comes with being a carrier of a fatal, neurodegenerative disease. 

I also rely on a fantastic group of friends. Many of the parents of my kids rallied around me during Kirk’s cancer years. I learned how to ask for help, and they generously gave it in the form of meal deliveries, spending time with me, walking the dog when I had to take Kirk to the hospital, inviting Alex to playdates, and even getting me out of the house. Once, while I was putting the finishing touches on my first book, Unnatural Resources, Kirk’s brother and some of his friends agreed to stay with Kirk and Alex while I went to a two-week writers’ residency.

And speaking of fantastic friends, my Familial ALS Team at I Am ALS gave me a safe space to share ideas, learn about research, and advocate for policy change around diseases like genetic ALS. 

By 2020, I had made the friends with whom I would later co-found End the Legacy, an organization for carriers of – and caregivers of people with - genetic forms of ALS and FTD. Feeling like I was part of something that would lead to a cure gave me hope. And now, five years later, I still find support and community in End the Legacy. I’ve become one of the facilitators of the Peer Support Group, and I’m finding that helping others tell their story helps me heal from some of the trauma that the ALS in my family has caused me. I think that helping others really gets me out of the headspace that once made me ruminate about the possibility of developing ALS or FTD.

My dad has always been a great confidante for me. He knew and loved all of the people in my family who were suffering, and he and I have always had a close relationship. Sometimes, when it all became too much for me, I’d call him to talk about it. I remember a particular time when my mom’s ALS got to me in a bad way. I’d gone out to visit her when she was in the late stages of her disease, and my stepdad, Jim, was suffering from metastatic melanoma. My mom needed round-the-clock care because she was almost completely paralyzed. She needed Jim to change her Depends undergarments, to roll her over during the night, to feed and dress her, and to administer medication. Because he was also trying to run a business and fight his own cancer, he was unable to cater to all of her needs. I suggested Jim go out for some fresh air or take a nap while I was there and my mom was also napping. He took the time to take a walk and go buy groceries. I thought I had it handled, but my mom didn’t want me to change her diapers, so instead of calling out for me, she used her one good hand to pull herself off the bed. She fell to the floor, just as I entered the room. When I stooped to pull her up, she was furious. She didn’t want any help from anyone but Jim, and she’d rather injure herself than have her kid change her Depends. She used her remaining strength to rail at me for meddling and accuse Jim of abandoning her. It was one of the most difficult moments of my life. Once Jim was home, I took a minute to get some fresh air and call my dad. He spent nearly an hour reassuring me that I did nothing wrong. He told me that ALS was the worst disease and that my mom, Jim, and I were doing the best we could. That call meant everything. 

Although ALS and caregiving had become a full-time job for me, I also realized that caregiving wasn’t going to become my whole life forever. I knew that my mom was going to die and that I should spend as much time with her as possible before that happened. I knew that Ethan would grow up one day and that I just had to get him to a point where he could function on his own in the world. I knew that either Kirk would get well, or he wouldn’t, but I just needed to be there for him as a caregiver until that happened. 

An important part of self-care for me was letting go of the idea that I could save anyone else. Even my twelve-year-old, Alex, needed me. While I couldn’t control how he felt, or whether the stress of the family was taking a toll on him, all the self-care (in the form of exercise, therapy, and relying on a loving community) that I did helped me teach him how to insulate himself a bit from the daily grind of having three family members with life-threatening situations. By 7th grade, he already had a school guidance counselor to talk to, a regular exercise practice in the form of tennis and mountain biking, and a group of friends he could confide in.

Don’t get me wrong: There were times early in my husband’s cancer when I panicked. I was terrified that I would die of ALS, and Kirk would die of cancer while our kids were young. What would happen to them if they had to witness that twice? Who would raise them if we were both gone? I also had days when I didn’t want to get out of bed because of crushing anxiety and depression around the fact that our son, Ethan, was in a therapeutic boarding school. But those dark days became less frequent the more I stuck to a regimen of self-care. As my therapist said, “You need to put your own oxygen mask on first, before helping others.”

Now that I’m on the other side of those struggles, I realize that it wasn’t any one thing that I did that got me through the day-to-day stresses. It was a combination of elements. My book, Last Nerve: A Memoir of Illness and the Endurance of Family, details these elements of self-care and surrender and my journey from ALS worrier to ALS warrior. My hope is that it will serve as a guidebook for anyone in the “sandwich generation,” who may be raising kids while caring for dying parents. My neurologist, Dr. Paul Sampognaro, says of my new book, “…With clear-eyed reflections on grief, resilience, and the hope for future cures, this memoir offers a poignant journey of personal and generational struggle, beautifully capturing the power of family and self-discovery…”