Editor’s note: This column briefly discusses suicide.
Another Mother’s Day is almost upon us. How I wrote that may sound a bit like a chore, but for those of us without our mothers, especially motherless daughters, Mother’s Day can be a painful reminder of whom we lost.
I can attest that losing my mother as a young child was a pivotal point in my life, and it likely had a part in triggering my multiple autoimmune diseases, including Lambert-Eaton myasthenic syndrome (LEMS). I am reminded each year that I can’t recall a single Mother’s Day that I was able to do something special for my mother.
Just as meeting someone who has the same ultra-rare disease brings about an instant kinship, meeting someone who also lost their mother at a young age does the same. Imagine bonding over both realities. That is what I have found in my friendship with Lambert-Eaton News Forums co-moderator Ashley Gregory.
Ashley also is a member of a club that no one wants to join: motherless daughters. At 15, Ashley lost her mother to breast cancer. Ashley’s formative teen years were forever altered by that loss, yet she dug down deep with grit and tenacity to become a nurse.
“My mother’s nurses had a high impact on her during the several years she was sick, and I wanted to do something to honor her as well as make a difference to others,” Ashley said.
I came to know more about Ashley when we both were going without treatment last year during a shortage of intravenous immunoglobulin (IVIG). Knowing full well how suddenly not having my IVIG treatment affected my disease state, I was amazed at Ashley’s strength of character to continue working as an operating-room nurse despite her body being weak from going without treatment for months.
I soon learned that Ashley has the same type of antibodies that I have with my N-type LEMS, and that she also has multiple autoimmune diagnoses. When I learned that she also lost her mother when she was young, our bond became even stronger.
I was 4 when my mother died by suicide. Despite my young age at the time, I still remember the horrible moment my foster parents told me my mother had died. My mother visited me prior to her death and gave me a doll. At 51, I still have that doll, packed away safely. It is tangible proof that I, too, once had a mother that doted on me.
Ashley recently shared pictures on social media of a garage clean-out. She showed before-and-after pics, and I spied a doll placed carefully on recently organized shelving. I knew the answer before I even asked her the question: “Did your mom give you that doll, Ashley?”
Motherless daughters everywhere carry both the burden of loss and the quality of caring that can only be quantified as the combined mothering instinct of two souls. We live with the loss as well as the need to alleviate pain others may be facing. Empathy is the quality that is born on the day our mothers die.
Despite having an incredibly demanding schedule as an O.R. nurse, Ashley jumped at the chance to co-moderate the Lambert-Eaton News Forums with me. When we first became friends, she told me she hoped to one day be an advocate for patients with LEMS, and despite the work demands she balances every day with her LEMS treatments, she has done an amazing job engaging patients in the forums.
Both Ashley and I were fortunate to have mother figures step in. For Ashley, it is her Nana. For me, it was my foster mother, who started raising me soon after my mother died. “Gram” was 55 when she took me in. She would joke with people when they would ask her, “Which one does she belong to?” referring to one of Gram’s four grown children. Gram would chuckle and say, “I don’t know, she just landed on my doorstep one day!”
As I grew older and talked to Gram about her own family history, I learned that she also was a motherless daughter. Gram was born in 1919. Her mother died of tuberculosis when Gram was just 9 months old. Gram was “Gram” to countless children not related by blood but who were blessed to cross her path.
In the book “Motherless Daughters,” Hope Edelman wrote, “I truly believe that the death of my mother has made me the way I am today. I am a survivor, mentally strong, determined, strong-willed, self-reliant, and independent.”
On this Mother’s Day, take a moment not only to remember your mom, but also to remember your resilience and to be proud. I know your mom is.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
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