On Monday, February 19 I had an acupuncture session in the afternoon. That night, I had the best sleep I had had in months. I didn’t wake up at all during the night and I sat up and smiled when my alarm sounded at 7:30 Tuesday morning playing Ottmar Liebert’s Merengue de Alegrias.
Before I could even turn my alarm off, my wife, Debbie, came back into the room, silenced my phone, knelt down next to me and removed the earplug from my left ear. I was about to tell her how well I slept when I saw the expression on her face. “Amor,” she said. “Your mom died in her sleep last night.” She hugged me. I sat there silent and after a few minutes I curled up into a ball on my bed and pulled the covers over my face.
She was only 69, had just turned 69 six days prior, Valentine’s day. When I spoke to her on her birthday, I told her I was glad she was alive. The week before that, Deb and I had flown out to New York because my mom had been hospitalized. The doctors initially said it was her heart and that she needed a procedure, so she was transferred from Connecticut to Columbia Presbyterian in New York City.
We arrived the afternoon she was transferred. She had been intubated on the way because she wasn’t breathing well. When I walked into her room in the cardiac ICU, she was heavily sedated, I went to her bedside and took her hand and told her I was there. She had gel in her eyes to keep them moisturized. She looked up at me and tears started streaming down the sides of her eyes. I held her hand and told her it was going to be okay.
The doctors at Columbia said her heart was fine and they started treating her for an infection. They thought it was something called C. Diff., which is a nasty bacterial infection that can happen as a result of heavy antibiotics use. Over the next couple of days, her vitals began to stabilize, and they started weaning her off the sedatives in anticipation of extubating her at the beginning of the week.
She grew increasingly alert but couldn’t talk because of the breathing tube. We started asking her questions and having her squeeze our hands if/when we landed on what she was trying to say. It felt amazing when I was able to figure something out and utterly helpless and heartbreaking when I would scroll through questions and eventually she just gave up.
When she had the breathing tube taken out and was feeling better, I kissed her hand and told her how relieved I was, that I wasn’t ready for her to go unless she was. She told me she wasn’t and that she still had a lot to live for.
We were in New York for 8 days. She was extubated on a Monday and on Thursday night she checked herself out of the hospital. Deb and I drove with my parents to their house in Northern Westchester. We spent the next couple of nights there with them. My mom was weak and fragile, but she was relieved to be home and seemed to be out of the woods. She was committed to eating and gaining weight and staying hydrated.
When I said goodbye to her that Saturday, I had no idea it was going to be the last time I was going to see her. I kissed her a bunch of times on her head and told her I loved her, and she smiled.
Amidst the deep sadness, grief and loss I am feeling, I also want to share how grateful I feel that she brought us to New York for those days that we got to spend so intimately together when she was in the hospital. It was her way of saying goodbye to us even though she didn’t know it. I am also so deeply grateful that she died knowing how much I love her and how dedicated I felt to her.
When I was three or four, my grandmother, mother and I were diagnosed with FSH muscular dystrophy. As the story goes, the doctor pointed to each of us as the elevator doors were closing and said you have it, you have it and you have it. Whether or not it happened exactly this way, it was the way it felt to my mother. I knew from an early age about the MD, but I blocked it out and didn’t tell anyone or want to talk about it until I was 20. That meant that my mom was a mirror I couldn’t bear to look at.
In my early twenties, I started going to therapy, talking about the MD and dealing with the complicated nature of my relationship with my mom. My mom started going to therapy as well and we struggled together with our relationship. We went from fighting frequently to my mom being effusive in her love and affection to mutually recognizing and appreciating how our relationship was transforming. It became easier and easier to be together and more and more natural for me to be affectionate with her.
Our love for each other and bond became simple and pure over the past decade. I’m so grateful for that, but I’m not ready to say goodbye. She had so much taken away. I often wondered what she’d be like without the physical limitations. She was such a fiercely independent spirit. She made her life work for her despite the intense struggles and physical pain. She even made her death work for her by being at home and passing peacefully in her sleep.
I fantasized that she would be alive when the cure comes and that we’d celebrate together by walking the Inca trail, watching the sun rise over Machu Picchu. She didn’t believe a cure would come in her lifetime. She was right. I believe it will come in mine. She will be there with me to see that sunrise. She will be with me as long as I am here.
David B. Younger, Ph.D. is a clinical psychologist specializing in working with people with chronic health conditions with a web-based private practice and lives in Austin, Texas with his wife, 13-year-old son, 4-year-old daughter and 5-year-old toy poodle.
Originally published at chronicillnesstherapy.com