Lipstick and Liberation: Caring for Jennifer, a Transgender Woman With MS

Originally published by The Mighty: https://themighty.com/2019/07/supportive-caregiver-transgender-disability/

Sitting on a small patio in a Midwestern suburb, I scooted Jennifer’s wheelchair close, held her hand in my palm and painted her fingernails a hot pink, after scrubbing off the turquoise with nail polish remover — pressing each finger straight at the knuckles. Her eyes were closed as she basked in the warm sunshine.

Jennifer is a transgender, quadriplegic woman who uses she/her/hers pronouns. For 16 years, I was her direct support professional, the technical term for paid caregiver. When I started, I was a 21-year-old struggling single mother of a little girl with cerebral palsy. Jennifer was confident, charming and educated, with gray hair that was combed into a wave that swooped across the top of her high forehead. She wore polo shirts and tortoise shell eyeglasses with multifocal lenses, and looked every bit the high school teacher she had been.

Life was tough for me, raising my daughter without much support, managing all of her doctor and physical therapy appointments and endeavoring to pay my bills. Jennifer coached me on getting my finances in order, dealing with my chaotic housing and putting my daughter’s deadbeat father in the hot seat. She encouraged me to keep alive my dream of graduating college with a GPA that would make me competitive for graduate school. Every time I had a deadline or exam, she cheered, “Give it to ‘em!” as I left her house to go study.

But our conversations weren’t one-sided; she enjoyed regaling me with stories about her college days in the 1960s, which she called, “The best four years of my life.” In her early 40s, she had been diagnosed with multiple sclerosis. The first sign was double vision when she was running on a California beach one morning. Within a few years, she became paralyzed from the neck down and was living in a nursing home.

“I just love being Jennifer,” she said, without opening her eyes. She had been going out more as Jennifer, and I accompanied her. For the Pride Festival, she dressed in a long white shirt tied in front and Daisy Dukes, her bare feet adorned with several anklets and toe rings. Nobody asked any questions, and neither did anyone at her physical or occupational therapy sessions the week before. But when people did, like the suburban moms who suggested to her that she was inappropriate, I stated, matter-of-factly, that she liked wearing these things. That was what Jennifer told me to say and she trusted me to advocate for her. I was her sidekick.

She lived with her mother, a feisty former socialite in her eighties who doted on her. Although they didn’t go out often, because it was just too difficult with getting everything ready, packing up the car and simply being away from home, they were still members of their country club.

Every morning, I transferred Jennifer from her hospital bed in her living room by pulling her up into a standing position and pivoting her toward her wheelchair to sit her down. Jennifer had put on some weight since she was immobile, and I was on the smaller side, but it was a skill I was able to master because we were a team.

Throughout the day, I handled many details for her: hygiene, eating and drinking, scratching itches, moving her body to her liking, helping her pee, covering and uncovering her with blankets, wiping her nose and changing the television channel. I was in a constant state of motion as I assisted her with everything she would have done for herself, but now couldn’t.

At doctor appointments, I was not only transportation and muscle to get her in and out of the car, but someone educated in medicine who could translate the lingo for her and help her make informed decisions.

We were used to the looks, the rudeness and the pity that came with being a disabled person in this country. To cope with all the hostility, we went out anyway (planning ahead for the logistics) and didn’t care if anyone had a problem with it.

Despite the intimacy of our relationship, there was a lot I didn’t know about Jennifer, and gradually, she revealed details about her life that she had not disclosed to anyone. It started with her telling me stories about a time she lived in Las Vegas in the 1970s — escapades of a stripper who performed for an audience as a femme. Her eyes lit up as she recalled her fishnet stockings, eyeliner and high heels, and how the crowd would cheer when she worked the pole at Al’s Cabaret, dancing to her favorite song, “Love’s Theme.”

“Do you think I’m strange?” she asked me.

“Of course not,” I validated. “It’s normal.”

I had grown up in a religious sect with a lot of rules: no makeup, piercings, dancing, movies, television, popular music or friends outside of the church. Of course, no homosexuality — much less being transgender or queer. But since leaving when I was 18 and moving out on my own, I had begun to embrace not only myself, but others the church had told me to avoid. I had partied at gay clubs and shaved my head and rejected any notion that God existed or that I should follow what any man told me to do with my life or body.

With my reassurances that she wasn’t a creep, Jennifer let me further and further into her old life.

“I had real boobs in Las Vegas because of estrogen pills and shots and testosterone blockers. I loved it,” Jennifer said. She described how she got into stripping: starting with nude modeling for an art class at a community college near home and strip-o-grams when she got to Las Vegas after taking a leave of absence from teaching. A transgender dancer at Al’s Cabaret inspired her to see a doctor and begin to transition.

But when the 14 months of leave were over, she stopped taking estrogen and testosterone blockers and returned to teaching. After a couple weeks, her breasts had deflated, but underneath where they had been, white lines remained. She wasn’t ready to disclose who she really was, not while her mother was alive, admiring her “perfect son.”

As she told me stories while reminiscing on her secret life, she shared her desire to to be out as Jennifer, if there was a way.

Since her hands were too swollen from MS to wear rings on her fingers, she compensated with other over-the-top jewelry. I showed her the best sites for online shopping to buy flashy clip-on earrings and smoky eye makeup and helped her complete transactions. She asked me to store her purchases in a safe. I took pictures of her hair as it got longer and what it looked like in the back when I put it in a ponytail. I held her hands up for her to see how her fingernails were growing out.

“You sexy lady,” I complimented her.

“You can call me a queen,” she whispered hoarsely, winking.

Then one day, as we surfed the Internet, she asked me to look for nudist resorts. Being warm helped her muscles relax. We found one that advertised all the amenities Jennifer liked from her former life: spa, restaurants (even though she was on tube feedings now), nightclub, and a tropical poolside setting. Jennifer offered to pay me a travel rate per day and cover my expenses. For about a month, I considered whether it would be feasible for me to go with parenting and other obligations. I had my B.A. degree now and was building my career in public policy, but still needed my “day job.” My daughter was thriving academically and taking violin lessons. I resolved to make the trip work because it would make Jennifer happy.

Once we got there, it was surprisingly liberating. People were walking around nude like it was normal and laughing with each other and playing volleyball in the pool. Some were at the bar, sitting bare-butt on towels and sipping cocktails like they were in their own living rooms. Jennifer’s face was ecstatic, like she had found her new Vegas. After getting checked in and putting our luggage in our room, her first request was to strip her down. I had seen her naked every day. But I kept my clothes on. Even after getting many piercings, having multiple sex partners and generally telling society where to go, keeping covered up was a remnant of my strict upbringing I held onto.

Within the first few days, I painted Jennifer’s nails and let her wear my lipstick. Although reticent, I finally — self-consciously — sat by the pool with her in a bikini she had helped me pick out online. We developed a routine: mornings sunbathing by the pool and chatting with newfound friends, afternoons napping, and evenings watching karaoke or a live band in the pool bar or mingling in the nightclub where guests (who were about her age) flaunted kinky outfits and danced to hip hop and retro music. Wherever we were, I parked Jennifer in a strategic location, so she could participate in the action as much as she wanted to.

When we got back, she told her mother that she had won a trivia contest and the prize was a mani-pedi. She had offered it to me, but I told her she should do it. Jennifer’s mother didn’t question the story, nor did she protest when Jennifer began to regularly have her nails painted.

The trip to the resort became an annual event, and with each visit, Jennifer gradually emerged — from pretty manicures and lipstick to eye shadow and lingerie, and finally, a blonde curly wig and silicone breast forms placed under a bra. My daughter graduated from high school. I became more comfortable in my own skin. Each time Jennifer returns, she brings more of herself back home. And we sit on her patio in the northern sun, painting our nails and showing off our beautiful bodies — to ourselves.

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Moving & putting the past to rest

CN self injury, miscellaneous

So many things I found while packing last night and many of them being put to rest.

Like a letter my first roommate wrote to my daughter‘s father, imploring him to be in her life and stop partying and grow up. But that we would find father figures for her while she was being raised by women.

Medical records from all kinds of things years ago, including my mental health. In 1992 I sprained my ankle and I don’t think I need to remember that. I would rather forget that I was burning myself in the mid-90s.

Massive amount of court documents from Family Court and child support. Only a paper trail of unrequited hope for justice and support.

Receipts from preschool and packets of information for parents. Goals for my daughter in phy ed. Pressure to strive for so many little goals within the bigger goal of meeting some expectation. It doesn’t matter now if she can jump rope. It never did.

Old jobs, notes, papers, things I thought I would read. Sometimes I take a picture of what I am letting go of. But not last night.

I’ve been working on minimalism for several years and releasing attachments. Writing my book A String of Paper Suns was part of that. I have an overwhelming sense of moving into the future with only the things and information I need to sustain my next vision.

CBD, Hemp & Law in Minnesota

Minneapolis Criminal Law Blog

Is CBD legal in Minnesota?

It’s complicated, but the answers are here.  If CBD is truly sourced from hemp, it’s legal under Minnesota law; and a federal law prohibits money being spent on federal prosecution of people with state legal hemp CBD.  Here is the breakdown, with the related Minnesota and Federal laws.

Cannabidiol, CBD, is trending strongly.  Why?

The main reasons are:

  1. CBD has desirable health and wellness benefits.
  2. CBD has no psychoactive effect, unlike psychoactive drugs such as alcohol, etc.
  3. It is not now, nor has it ever been, illegal. And, it’s unregulated.

Only the third reason listed — the laws — could change.  The biology of the plant and of humans will not change.

Green Light for Hemp Green Light for Hemp

Despite the fact that CBD itself is not illegal, its federal legal status is still more complicated in 2018, more conditional that than true statement seems to imply.  And we’ll…

View original post 4,201 more words

Who I am – who am I?

I’ve seen people post get to know you posts and I don’t know if I’ve done any. Not in a while anyway. I thought I would share some fun facts.

-The past two times that I’ve been engaged, I have proposed to foreign men – that’s hella feminist.
-I planned on being a medical doctor since the time that I was very young until a couple years into college. Still took a lot of premed classes. I will never regret any of my education.
-I became pregnant at 17 and had an abortion when I was in nursing school, and then became pregnant at 18 with my daughter. I had another abortion when she was a couple years old. After that, I never had a strong desire to have more children.
-I grew up in a fundamentalist religion and I am now an atheist. It’s not because of the religious upbringing, it’s because I think that religion is not rational or logical. Even based on faith. I think it’s the the equivalent of believing in fairy tales. And I can say that while continuing to respect what other people believe in.
-I have many disabilities and they are all invisible. You don’t want the list. I won’t bore you with the details. Some of them greatly increase my risk of death. But I’m still kicking.
-I grew up in Phoenix, Arizona and I have a lot of nostalgia for my home, even though I was very isolated and grew up in a closed religion. Somehow I was able to soak in the beauty of the place, despite everything.
-I don’t have a lot of close friends and I have trust issues because I’ve been abused, bullied, and betrayed so much. It’s kind of amazing that I actually am so open. I think the abuse is actually part of the reason. My boundaries were stripped away from me.
-I consider myself more of an artist than anything else. I’m highly sensitive, deeply emotional, and I love humanity. I just don’t like a lot of people because human nature can be ugly.
-I’ve met people from every background and every walk of life. Truly. From the most destitute to the most wealthy. I’ve been around some of the most poverty-stricken people and people with more money than you can imagine. It has made me very cynical about money.
-A lot of people know me from one aspect of my life and think they know everything about me. I have transformed many times and I will again.
-Obviously my daughter is the most important thing to me in this world. I never expected how I would be changed as a mother. She is the greatest gift of my life, but I would never recommend motherhood because the world does not support mothers and the world is a violent place for females. I live in fear as a woman of a daughter.
-I had a purple wig that even drag queens envied.
-Even though I’ve been with mostly men, I identify as queer. That’s because I don’t care about gender. Love is love.
-People don’t believe me when I say that I’m autistic because I don’t fit their stereotype. And I don’t need anyone to approve. I know myself.
-I’ve been suicidal since I was a teenager and I’ve been in the emergency room many times. I’ve done self injury and even burned my own face. I think part of the reason is growing up in a religion that did not allow me to express myself. That shapes you. Plus of course being sexually abused by so many men that I lost count. Yet people think I’m the crazy one.
-I can listen to a piece of classical music or watch the wind blow through a flower and feel the whole world.
-I’m an example of someone with a lot of talents and a lot of struggles. I learned how to read when I was a toddler, but I couldn’t figure out social interaction. I went through school as a gifted student and graduated with all the accolades, but I feel like I’ve been an underdog my whole life. I’ve had a lot of adversity and difficulties in my life that help me connect with other people that are marginalized.
-I spent almost the first 40 years of my life in an intense caregiving role.
-I can’t handle news about human suffering. I wish everyone respected each other. I will never feel safe in this world. As an empath, I feel the pain of others and it’s torture.
-Even though I have so many deep emotions, I’m a very jovial person. I think it’s how I survive. Despite what I post, people tell me I’m a lot of fun to be around and I am hilarious. A lot of sad people are funny.
-I miss everyone that I’ve lost, whether they are still alive or dead. The grief is the same.
-I’m not this depressing all the time.
-I like intellectual people who don’t try to act like they’re so much smarter than everyone else. Real power is quiet.
-I am a romantic at heart even though I know the darkness.

What are you looking at?

Getting into my red Ford Taurus, I dumped my purse onto the passenger seat and turned the key in the ignition. It whined, but wouldn’t start, so I turned it a few more times – each time growing more and more frustrated and despairing. “Start, you mother fucking car, START!!” Pumping the gas pedal frantically, I continued to turn the key, causing the engine to screech incessantly – until a neighbor, Adam, stopped and said, “You’re going to flood the engine if you keep giving it gas.” He lived on my floor with his boyfriend and worked at a local theater. “Let me get my jumper cables,” he said, “I’ll be right back. I got out of my car and kicked the driver’s side door, “You piece of shit!” Someone walking by on the street looked back at me as he kept walking, shaking his head. While I waited for Adam, I had a moment to think about my day, which led to reflecting on what my life was now.

Plymouth Fireworks Snippets

Plymouth fireworks are held within a day or so of the Fourth of July, and about 10,000 people attend. To get a decent viewing spot, it’s advantageous to arrive hours before they begin. Since we’re on Siljander time, we had to park about a mile away, and I had to carry our bag, with full water bottles.

As we settled in on a hill, after deliberating which spot was best, we checked our phones, read on Kindle, and texted and Snapchatted family.

Imani texted me: “I’m jealous of that girl eating cake.”

I texted her back: “Her cake fell in the grass.”

She showed me how much shorter her right leg is than her left. I pointed out her different scars and said, “Dun, dun, dun, you could make a cool tattoo with them.” Laughing, she said, “I could have a tree on this leg and birds on the other,” pointing to smaller scars on her left leg.

As we listened to the Minnesota Orchestra, we waited for fireworks and the uncertain arrival of family. My sister texted me that she was just getting out of the shower, and I responded, “I think you’re going to miss this one, punk.” Nonetheless, I told everyone where we were sitting.

Imani: “We need a bat signal that we can shine up that says ‘Siljander.'”

We were surrounded by masses of people: some having picnics and drinking wine, a few with dogs, lots of kids and strollers, and people clearly more organized than us with amenities they had brought with them.

When fireworks started, a lot of us stretched out on the grass to watch. Young guys hollered – and made their presence known. As patriotic music played, the crowd cooed and cheered. The finale was worth everything with spectacularly bright pops of fireworks that were like paparazzi flash bulbs at the Oscars.

I thought about how I missed moments like these with my daughter because I was at work in the past. But now we got to enjoy fireworks together and chill together.

I thought about veterans and people who have been around gun violence.

As we walked the long way back to our car, we saw people we had seen on the way there: a thin man with wild white hair and an Indian family with a mother, father, and two adolescent boys. I shone the flashlight on my phone so she could see where she was going. We both listened in as a group of boys told riddles:

What do you call a man with no arms and legs on your wall? Art.

What do you call a man with not arms and legs in the pool? Bob.

There are 28 cows and 28 (20 ate) chicken. How many are left? 28.

How do you get down off an elephant? You can’t; you get down off a duck.

On the way home, Imani sang the song “Amore” to me. Then she unplugged my phone from the car charger and plugged hers in. Dean Martin sang “Amore” to us and she said, “Sing it, Dean-O!” After singing along, and playing Andy Williams and Frank Sinatra, she remarked, “Imagine if these men had never gone to the studio. The world would be less bright – ahhhhh!!” Somehow, the conversation turned to pancakes. Imani said, “I need pancakes in my life.” I told her that we have a mix, but it’s easy to make pancakes from scratch, and they’re better. Maybe we will remember that we want pancakes this weekend when we have time to get the ingredients and make them.