The Grief of Loss and Narcolepsy

This isn’t the first funeral nor the last one I have been to, but it seems one thing I have become more cognizant about is my legs. As I spent several hours at a visitation yesterday for my former mother-in-law, my legs shook anytime I went near or, in fact, even thought about the person in the coffin.

She was at the age/point in life where it was natural, peaceful, and normal to pass on, but it still felt like a piece of myself went away. The invisible string of life connections that disappeared in a moment. Grief is always a part of any personal loss, even when you might not have been so close in the last years leading up to death.

My entire body shook, and I felt like collapsing

"She was married to her late devoted husband... and was reunited [with him] on their 66th wedding anniversary. We are comforted by the awareness that her passing was peaceful, painless, free of further suffering, and that she passed in her home of 55 years."

Maybe I just hadn’t slept much (5 AM flights do that to any person unless they do it every day), or maybe it was somewhat of an innate fear of death and the unknown afterlife, but my entire body shook at points and I felt like collapsing several times. At one point, my ankle actually gave out, but thankfully my ex-husband helped me walk around to ensure I didn’t fall to the floor.

Strong emotions like grief can trigger cataplexy

"A few times during Mom's life, I asked Mom how she became so interested in Dad. She would always say, 'He was just so handsome and so smart.' And Dad often told me about how the girls at Eastern from Northern Kentucky were so pretty and sophisticated, and obviously Mom was no exception."

This was the first funeral for a death in the family that I came to since my diagnosis with narcolepsy. Though I had always felt very emotional about death and losing loved ones, certain people create even more emotion depending on the memory, the gratitude in my heart for that person’s contribution in my life, and anything else that went along with knowing a person.

Emotions, though, especially strong ones, can trigger the cataplexy that I have become significantly aware of over the past 7 years. Only now can I put words to the jelly knees and sudden loss of using them at inopportune times.

My body has been protesting being awake

"Mom and Dad gave us a comfortable, education-oriented upbringing, and the 3 of us kids obtained professional health-related degrees."

Between sleep deprivation, the stress of my former in-law family (which isn’t that much, but still is something, since many of them I have not seen for the same length of time or longer as my narcolepsy diagnosis), and just general grief from processing the loss, my body has been protesting the state of being awake, of being capable of standing, and overall just being able to speak at times lest an aberrant sound emerge with tears or sadness instead of coherent words of condolence and support for my children and their father.

Despite my condition, I still came to the funeral

"And then, in 2003, during my wedding reception party with [Nessie], I saw Mom as happy as I have ever seen her as we danced our wedding Groom-Mom and Bride-Dad dances, and she cried as she told me she was as happy as she had ever been. And she was even happier still when she held [our children] as they were welcomed into the world."

The funeral included a very heartfelt and well-written eulogy from my former spouse about his extraordinary mother. Though I attempted to be supportive, my own condition made it clear that physical support was actually needed on my side that day. Maybe that’s not the point, though, because despite my fears and knowledge of my own condition, I still came, and it was apparent if nothing else that I loved her too in my own way.

She was my second mother

Our youngest child was almost born at 25 weeks post-conception due to a car accident, and our parents, especially my in-laws, came to our aid with a 10-month-old child and preterm labor threatening our not yet born second son. She cooked, cleaned, and cared for me in ways that went above any words other than love.

Forever in my heart, she was my second mother through and through.

Quoted text provided by permission from Jeffrey Smiley in loving memory of Claudia Mae (Wasser) Smiley.