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Still In Texas

STILL IN TEXAS

 

Emily Wolinsky

 

Note: some of this essay was from a Facebook post by Emily Wolinsky posted on February 19, 2021. 

 

Interdependence. Most people with disabilities hear and use this word all the time, but disabled Texans, like me, don’t. The word Texans use is “Independence.” 

Independence sounds great on a day when one of my four personal care attendants (PCAs) can drive on clear roads to my home in Austin to get me out of bed.  

Independence, as in financial independence, sounds just fine when I log-in to work each week and make money to support most of my needs. 

Independence sounds smart when I tell my live-in sweetheart of eight years, Dan, that we are two unmarried individuals who choose to be together, but could just as easily choose to be apart. 

And Interdependence? Here how the now-former mayor of Colorado City, Texas feels about interdependence. He said in a recent Facebook post in response to cries for help during the power blackout, “No one owes you [or] your family anything; nor is it the local government’s responsibility to support you during trying times like this!…Sink or swim it’s your choice! The City and County, along with power providers or any other service owes you NOTHING! I’m sick and tired of people looking for a damn handout.” 

Texas is the personification of pull-them-up-by-the-bootstraps mentality to the nth degree. Every commercial on the local television; every school day when kids recite the Texas Pledge after the American Pledge; messages of Freedom, Independence, and Individualism fill our boots – straps or no straps. 

I spent about half of my life in Upstate NY before I came to the Land of Independence to spend my adulthood. The first thing I noticed when I moved to the sunny state capital in 1999 was the pride of Texans. That lone, independent, star is everywhere you look. 

For most of my life, I considered myself a lone star, so choosing to be in a state that did its own damn thing in its own damn way felt kinda nice to me. I thought that if I paid my bills and my taxes that this would be enough to receive ongoing social services and basic protections, like access to utilities, street upkeep, etc. Meeting my civic responsibilities as an adult would keep me an Independent Disabled Texan and that, I thought, kept up my end of the bargain.  

My bubble of Independence burst like a frozen pipe when the power went out around 2:00 am on Monday morning, February 15, 2021. The sound of everything shutting down except my vent, which switched to battery power, woke me up. I looked over at Dan who was snoring next to me.

“Dan.” 

He didn’t stir awake. I said his name a few more times and he rolled over mumbling.

“Wha? You need to turn?” 

I depended on him to turn me in the night because Texas’s Community First Choice Star Plus waiver program didn’t qualify me for overnight personal care assistant hours. I’m not disabled enough for that, so I need to independently find someone to depend on throughout the night.

“No. I’m good,” I whispered. “But the electricity is out.”

“So? It will come back on,” and he rolled back over and fell asleep. (My man is such an optimist!)

While he went back to snoring for a few hours, I assessed my durable medical equipment (DME) survival situation as the temperature in my house started dropping from 72 degrees to the 40s:

I use a ceiling lift that runs on a rechargeable battery to get in/out of bed and on/off the toilet that could no longer recharge.

I use a ventilator at night to breathe while I sleep because of lung weakness (my respiration drops to deadly levels when I’m not conscious or when I’m tired).

My vent includes one back-up power supply that got me through Sunday night, but I had no idea how long the power was going to be out and when it would run out of charge.

I also have a power wheelchair for mobility (with a seemingly full charge – my battery-level indicator light was green, which is not specific).

Emily’s durable medical equipment. Top Left: My SureHands ceiling lift named "J-Lo." Bottom Left: My lymphedema therapy machine named "Jose." Middle Front: My Cough Assist named "Sir Coughs Alot" and underneath it, my suction machine, "Sir Sucks Alot." Back Front: Power Wheelchair named "Tina Turner" Left: My Trilogy vent and humidifier named "Darth" sit on a three-tiered cart. J-Lo's remote is also placed on the cart, covered in a latex glove to prevent it from getting wet.   Hooked to the Bottom of the Cart: A disgusting bag of warm, yellow, body waste named "Ted Cruz" that's attached to my suprapubic catheter, "PeeTee" [not pictured].
Emily’s durable medical equipment. Top Left: My SureHands ceiling lift named “J-Lo.”
Bottom Left: My lymphedema therapy machine named “Jose.” Middle Front: My Cough Assist named “Sir Coughs Alot” and underneath it, my suction machine, “Sir Sucks Alot.” Back Front: Power Wheelchair named “Tina Turner” Left: My Trilogy vent and humidifier named “Darth” sit on a three-tiered cart. J-Lo’s remote is also placed on the cart, covered in a latex glove to prevent it from getting wet.  Hooked to the Bottom of the Cart: A disgusting bag of warm, yellow, body waste named “Ted Cruz” that’s attached to my suprapubic catheter, “PeeTee” [not pictured].

I assessed other issues related to my personal survival situation:

I went to bed with my new favorite fuzzy pants with the pink hearts on them – the warmest pants I owned. I had a t-shirt. Dan would have to dress me and dress me warm.

My refrigerated medications would need to be relocated outdoors and well as administered to me by Dan.

My monthly supra-pubic catheter (SPC) tube replacement would need to be postponed indefinitely. My PCA was trained by my doctor to do it and there was no way that Dan could do it on a good day, let alone one without utilities.

My hair was in a tight bun on top of my head that was put there by one of my PCAs the day before. Hopefully, it wouldn’t fall because the last time Dan did my hair I had to cut the rubber band out of it because it became so knotted.

I didn’t need to shower, as that got taken care of the day before by my PCA. Dan had never showered me before. 

Dan would have to get me in the ceiling lift to use the toilet at least once (hopefully). My catheter could take care of the peeing, but I would have to make sure to stay hydrated to keep it from clogging since it needed to be changed. 

Dan would need to make and feed me food.

Dan would need to get the fireplace started so I could stay warm enough to move independently.

At around six that morning, Dan woke up and started doing all of the above. I checked my text messages, which would arrive in a blitz and then I’d lose service for hours before the next blitz. 

My PCAs Nemo and Gamal were home with their kids and they were just like me, without power and access to clear roads. They said they’d try to get to me ASAP.

Savannah, my weekday morning PCA, had power, but no access to water. Even though she lived about five miles from me, she couldn’t use the roads.

Kat, my newest PCA, trapped in South Austin, had power and water, but who knew when or if it would go out.

I couldn’t ask Alexa what the weather forecast for the week was, but as the minimal amount of information rolled in, I knew it was going to be bad. How many hours would we be Independent and off-the-grid in Texas?

On Monday night, we were so tired after the first survival day that I decided to just try and see if I could sleep without my vent. Once we let the fire die down, we got into bed and covered ourselves with a zillion blankets. I asked Dan to check on my breathing if I fell asleep first. Then I realized that he wouldn’t sleep if he had to monitor me, so I quickly retracted my request, assuring him that I’d be fine and if I wasn’t, I’d know, and we could use the vent. He needed to rest for both of us. I was fine. Right? Right. But I honestly had no idea what would happen when I fell asleep.

In the morning, after I woke up, I didn’t feel rested, but I woke up. I took some Aleve for a headache (probably due to low oxygen and higher CO2 levels) and prepared for Day 2. Friends were updating me and none of them could find information about how much longer we were going to be without power and me without the ability to charge my life-sustaining equipment.

Day 2: Emily Wolinsky sits still next to her fireplace in a dark room. She’s covered in blankets of different colors and patterns. She has thick socks on her feet. Her dog, Byron, a fluffy sweet poof, sits next to her.
Day 2: Emily Wolinsky sits still next to her fireplace in a dark room. She’s covered in blankets of different colors and patterns. She has thick socks on her feet. Her dog, Byron, a fluffy sweet poof, sits next to her.

By the end of Day 2, February 16, 2021, we got some good news.

Thankfully, Dan had an external battery jumper for our vehicles, combined with an AC/DC  inverter, which, after doing some research (thanks to my dear best friend, Kareen, and her power to Google questions I had never thought to ask, and to my ceiling lift repairman who was able to respond to my questions via text), Dan and I learned we could charge my vent and my ceiling lift. We had to run an extension cord from the garage to the house on Tuesday night to charge these things with 3/4ths tank of gas in my van. We decided to hold off on charging my wheelchair until absolutely necessary (the meter still said green).

BUT. After charging my vent, I got in bed that night happy to sleep soundly under a zillion blankets and I was hit with the fact that my vent circulates room air that was concentrated through a tube. That room air was 40-45 degrees and it was blowing up my nose. Maybe I’m a wimp, but it was so cold that I couldn’t sleep, so we had to take my vent off and I spent another night with no respiratory support.

On Day 3, February 17, 2021, I discovered that the inverter wasn’t powerful enough to charge my dying wheelchair. This sent me into a slight tailspin. My power wheelchair does not have handlebars and it’s around 450 lbs. I couldn’t even dare imagine anyone pushing me with flat hands around easily or up the ramp to my van to warm up when the temperature really started to drop. I immediately stopped moving around and adjusting my seating functions (recline/tilt) because I knew that would drain my battery. 

I was sitting, shivering, and staring into the fire, doom scrolling, looking at memes of Ted Cruz heading off to Cancun, listening to the radio wave frequency scanner sound-off call after call about broken pipes, electrical fires, falls, and more broken pipes, when suddenly I heard a knock on the door. It was Nemo!

Nemo, my Personal Care Attendant and sister of 21 years, somehow found her way to me through horrible weather conditions. As soon as I saw her I broke into grateful tears of relief. Dan was so exhausted after four days of doing everything. Even though the power came back on at her house, she said she would travel between me and her two other clients until we were all safe. This isn’t the first time she’s helped to save my life. 

That night, Nemo stayed the night in our spare bedroom and got me into bed with my charged ceiling lift. Dan climbed into bed with me and after a few minutes, I started coughing. My lungs filled with congestion (I get “attacks” pretty often) and they were cracking and wheezing. Dan asked me if I had pneumonia and Nemo came in to see what she could do. I told them I was fine. I lied. I coughed. I coughed.

Emily Wolinsky lies in bed covered with head scarves, sweaters and blankets. She smiles wearily at the camera.
Day 3: Emily Wolinsky lies in bed covered with head scarves, sweaters and blankets. She smiles wearily at the camera.

What do I do when this happens with power? I use my Cough Assist and suction machine (which I forgot had a battery) to clear my lungs of mucous. Both sat in the corner that night unpowered. I coughed. I coughed. Each time I did, I smiled a bit at the irony of this disaster killing me after fending off COVID for so many months. 

And finally, after about 90 minutes, I stopped coughing. I went to sleep, but I was up frequently. I was no longer sleeping well and I knew that I couldn’t take another night of this.

Thursday I woke up unrested and cold. I looked at my phone and texted my neighbors. We had no information from the city. No  timeline or specific information to put our hope towards. Those early hours of the morning were hard and I started to feel more anxious. I got in my wheelchair and looked at my charge – solid orange, which again, is not specific in terms of time and/or distance. I could not guess when it would hit red; red rhymes with dead. There’s nothing more frightening than having a dead battery as a full-time wheelchair user.

Nemo and Dan started a fire, I sat in front of it. Still. No more adjusting to dissipate the pain in my back. Just still.

The power turned on at 10:08 am, but I didn’t have time to celebrate.

We rushed to plug in my wheelchair and everything else. The chair can’t move when it’s being charged, so again, I stayed still for hours as it charged up. Do I move or will the power go off again? This question haunted me all that afternoon. It haunted me the next day. And it will probably haunt me for quite a long time into the future.

This should have never happened.

Texas tried to kill us, but I survived to tell this story.

 

Related links

Ep 75: Coronavirus and Disaster Planning with Germán Luis Parodi and Valerie Novack, April 18, 2020, Disability Visibility podcast.

Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters, May 24, 2019, National Council on Disability.

ABOUT

A black and white picture of Emily Wolinsky sitting in her power wheelchair in front of a portrait of the late Governor of Texas, Ann Richards. 
A black and white picture of Emily Wolinsky sitting in her power wheelchair in front of a portrait of the late Governor of Texas, Ann Richards.

 

Emily Wolinsky is the President of NMD United, a non-profit and peer-led organization that serves adults living with neuromuscular disabilities. She has called Austin, Texas home since 1999 and writes extensively about how interdependence and justice weave together in delightful and horrifying ways in the Lone Star State. Ted Cruz is her muse, so he keeps her pretty busy. 

Twitter:  @EmilyWolinsky

 

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