ONE OF THE MOST vivid memories I have of my mother healthy and “normal” is of her kissing me goodnight. This would be the last time she could tuck me in, she said, because she was going to work the night shift full time. I was devastated.
Fast-forward to the day I found out my mother had multiple sclerosis (MS). I was 7 years old and thought, “So what?” My mom was 43 and thought, “Why me?” It's funny how one day of your life can seem relatively inconsequential, but it can set off a cascade of events forever altering who you were meant to become.
First and foremost, my mother was a nurse. When she was forced to stop working, she lost her identity. For me, I gained my mother. I was ecstatic to have her home and blissfully unaware that she was unhappy being there. That woman I spent mornings with was only a shell of my mother and most certainly was not Regina Smith, RN. She was physically exhausted, mentally drained, and emotionally distraught. Her days spent at home fighting a progressive neurologic disease that stripped her of the life she loved left her resentful with plenty of time to let her anger fester.
That anger prevented me from getting to know the real woman and nurse my mother was for the better part of my life. As I got older, I asked about her life experiences, including those in nursing, but she wouldn't or couldn't talk about it. I still don't know if she was choosing to forget that part of her life to protect herself or if the disease had robbed her of joyful memories of doing what she loved. Regardless, I had only limited memories and others' stories to piece together who she was as a person and nurse.
Other people who share stories about my mother talk of how accomplished she was and how many lives she touched. My favorite example is when she demanded a study she felt was needed for a patient's diagnosis. The physician didn't agree, but was advised by a colleague, “You can tell Regina Smith you are not ordering this study, because I won't.” Sure enough, the study confirmed the diagnosis my mom had suspected. She was fierce, she was a patient advocate, and she saved countless lives. She was the nurse I strive to be.
Yet, I didn't come to that realization until later in my career. For a long time, I resented my mother. MS warped her mind and exacerbated her already fragile mental state. I didn't understand that the disease was doing this; I believed it was her. I wanted her to be “normal” like everyone else's mom, and ironically enough, she wanted the same. We expressed our shared desires separately through crying and praying, and together by arguing. Eventually, my vulnerability progressed to resiliency.
After reading an article about a teenager caring for her mother with MS, I recognized my future. This young girl was helping her mom perform activities of daily living among many things. I was scared and in disbelief; that wasn't going to be us. However, over 20 years, my mom progressed to needing a wheelchair and assistance in bathing, feeding herself, and getting dressed. Her thoughts were circular, and her mind betrayed her with short-term memory loss. Witnessing and experiencing this disease with her facilitated the transition of my feelings from denial and fearfulness into acceptance and courage.
Becoming a nurse molded me into a daughter who was also a caregiver, a role I dreaded until my critical care experience expanded my capacity for compassion and empathy.
As I was forging this new journey as a nurse-daughter, my mother was experiencing her own transformation. She agreed to see a neuropsychiatrist and start taking antidepressants after 18 long years of being her own worst enemy. As she let go of her anger, I finally got to meet the woman she had been long ago. She set aside her feelings of resentment and her search for something to blame.
I, too, set aside my feelings of bitterness—but I also let go of what I thought a mother-daughter relationship should be. I took her shopping and to lunch. I helped her bathe and dress. I encouraged her to exercise and hydrate. We accepted this unique dichotomy of a mother-daughter relationship because we had longed for it for years. Together we grew in these supporting roles of teaching each other patience and the imperfections of love.
Just when we were getting comfortable in this new relationship, my mom was taken from me once again when she suffered a massive stroke. My anger returned. Here we were in an ICU, an environment I wish we could have shared as colleagues, not like this: she, in and out of consciousness on a ventilator, and I looking at the monitors. I finally understood why my mother identified as a nurse first.
I am a nurse because of her. I am a daughter because of her. I am a fearless, intelligent, and compassionate woman because of her. That is my identity. All of the positive effects her life had on me outweigh any of the negatives we have withstood together. She gave me the strength to know in my heart when she had had enough.
Now one of the lasting memories I have of my mother, a woman who was not healthy or “normal” but one who was strong and admirable, is a moment we shared at the end of her life. She was barely aware of her surroundings, but for one fleeting moment she recognized me, and she smiled this radiant smile. My feelings of uncertainty regarding our decision to end her suffering will continue to haunt me; nevertheless, that smile carries me through each day with the hope that she is proud of the nurse and daughter I have become.