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Jul 24
Opinion Pieces
Going Your Own Way

Gender respect in death and dying

by Anne-Marie Keppel

Last year my teenage daughter did a report on women in history who disguised themselves as another gender. I loved the topic and followed the studies along with her and found myself really cheering the trans individuals on. I wanted them to be brave and clever and “win” against all societal norms. And then we came across the story of a well respected and loved man who was born with female genitalia who became old, was sent to a nursing home and there was “discovered.”  He was dressed in female clothing, was addressed as “she” and called by his female birth name until he died. 
Now, okay, this was 1920. But, I’m not so sure anything much different would happen today. If a female brought into a nursing facility was there discovered to have male genitalia, would she be given a female roommate or male?  I keep reminding folks that separating by gender these days is nearly irrelevant… Girls like boys like boys like bi like trans like girls and unless you are talking about sex or pregnancy, gender don’t mean a thing

As a Private Duty nurse I once sat overnight with a woman who was born a woman who had a double mastectomy 50 years earlier. (The woman was 104 years old.) She was in an active phase of dying, and was actually physically active. Even though she was dying simply of old age, her body was still very strong. She used no walker, no hearing aid, and only used pull-ups at night “just in case.”  Around 2:00 a.m.m her breathing started to become restricted, and because she was still so strong she sat bolt upright at the end of her bed and started pulling at her nightgown. I asked her if she would like some water or a back rub, or if I could sing her a song. No answer. In fact, she was not really “in this world,” if you will. She pulled off her nightgown so she was just in her pull-ups and then wanted her nightgown back on. Then she wanted socks on, and socks off, and nightgown on, and nightgown off. 

Each time her nightgown came off she impulsively threw her arms over her chest. She was not panicking–just obsessive. I checked with the RN who said she had no meds that could be given, and so I just sat with her. I made sure she did not hurt herself, and I was there if she needed any assistance, but the most I could do was simply breathe. I watched, and breathed consciously as if I could free her breathing and offer her vicarious comfort.  As I witnessed this human dying, I awakened to the fact that I had occupied this same space of out-of-mind and body-in-turmoil when I was in heavy labor with my first child. This also looked very similar to every pet that I had sat with while they were dying.  I took comfort in reminding myself of the body’s natural process, and when she calmed down and returned to bed, likely quite light-headed, I reminded her of this as well. 

This woman had no breasts, not even nipples. Her hair was short and sparse, she wore no jewelry, and her face was very 104 years old. If someone had walked in to that room having not looked at her chart, the first thing they would note is the frantic movements and the fact that the person appeared to be struggling to breathe and relax. It would not be until the person moved over to the nightstand and pulled the cap off a very worn tube of bright red lipstick, to apply it with the perfection of 90 years experience and without glancing in a mirror, that one might then say, “Oh, she’s a woman.” 
Last week at a conference I was attending, a homeless individual walked in and sat down, looking old and….homeless. I walked up to them and said, “Can I help you with anything?” They replied, “Can I stay here for a bit? And, yes, I’d love some tea. And as many cookies as you can offer me.” I asked their name and the reply was, “Pete. But I’m transitioning to a woman and I’d like to be called Sonja.”  I looked at Sonja’s clothes, and noted the brown, grey and black colors as well as the eye-stinging stench of urine. She said, “Would you like to see something?” Suddenly one skinny leg flew up into the air and with a yank of the pant leg she revealed a flesh-toned fishnet stocking–and a smile.
Two hours later we were eating burritos and Sonja was wearing clean Depends with extras in her bag, clean pink socks, had washed her hands and face, and was wearing pink and blue sunset spandex leggings with a hot pink tee shirt. Of course warm practical layers went over these, as I reminded her that showing too much leg this time of the year is not appropriate–she’d attract the wrong kind of crowd.  She agreed.
I don’t know how Sonja will be treated at the homeless shelter with her new clothes. But I remembered how many times the 104-year-old woman with the double mastectomy threw her arms over her lack of breasts each time she pulled her off her nightgown. I imagined how many times Sonja might have wished she could apply red lipstick whenever she wanted. You should get that in your life. You should get to wear whatever the heck you want to even if you’re elderly, schizophrenic, and homeless, or even if you’re 4 years old and come from a great family. 
Even in death, gender matters. For better or worse I don’t know, but it matters. Though our bodily systems cease just the same regardless of gender, skin color, or language differences, and we can even act rather animalistic, because we are human, it still matters.  When something has impacted your life so hugely, your strongest desires and your habitual responses remain until life exits your body. Even through dying, even in death, the you that lived here and the individual you intentionally were should be respected by all care takers in your most vulnerable moments–straight through to the carving of your headstone. 
Your responsibility? To make pre-arrangements and/or have your awesome next-of-kin able to speak for you, so you are respected in the manner you deserve.

Anne-Marie Keppel lives in a magical dwelling in northern Vermont with her husband Pablo Coddou, three children ages 20, 16 and 2, and two guinea pigs.  She is Head Teacher at Karmê Chöling’s Family Camp, is an Executive Council member of the camp, greatly loves Kasungship, and teaches tightwire as a mind/body awareness practice. Currently launching a business in Community Deathcare, Anne-Marie is a Hospice volunteer, trained death midwife, and is in school to become a Celebrant with a focus on funerals and memorials.

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4 responses to “ Going Your Own Way ”
  1. Victoria Schafer
    Jul 27, 2018

    Hi Anne-Marie MC and I used to run the Store at KCL. I liked the respect and time and presence you devoted to the 104-year-old and others in your article. This is obviously the specialty for you. I have made arrangements with paperwork. My next of kin is MC who is 13 years older than I. She is also healthier at 86. I would like to contact you. Where do you live? Thanks again for this outpouring of care.

  2. Beth Hasbrouck
    Jul 27, 2018

    Thank you for such a well-written, heartfelt, lovely piece, Anne-Marie.

  3. Debbie McGee
    Jul 26, 2018

    Thank you for writing this.

  4. Jeffrey Slayton
    Jul 24, 2018

    I couldn’t agree more! I am touched and inspired to read about you bringing this subtle level of care into the field of death & dying. I mean, it really gets me fired up, like, “Wow, I could bring that level of care to my work too!” So, thank you for writing about it.

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