Liz, a white person with short brown and white hair and glasses is shown seated in her wheelchair. Her legs are crossed and she’s wearing black jeans ripped at the knee. Black boots with tiny pink and white hearts by dr marten. Large black leather bag shown next to Liz. Black short sleeve zip up sweatshirt with cut outs over grayish oversized shirt. The floor is marble and this was taken inside a mall.
I’ve been masked since July 2019.
Born without 2/3 of my immune system, on long-term chemo and steroids.
I’m used to hearing someone cough and moving as far away from them as I can.
I would get stared at and ignored as a mask wearer in 2019.
People would think that I was a threat to them and stay away.
When the pandemic began, friends and family started asking me for advice on masking and distancing. Suddenly all these non-disabled people were afraid, at risk, like me.
They were despondent.
That year, I became feeding tube dependent.
In August 2020 I had four NJ Tubes in four weeks inserted into my intestines.
When each of these clogged, I had to get a surgical GJ tube in September 2020.
People that wore suits or had developed personal style over decades were suddenly in pajamas. Faces buried in Netflix, cameras turned off on Zoom.
On October 12, 2020, I started posting photos of my outfit of the day.
Liz, a white person with glasses and brown and white ear length hair is shown taking a selfie in a hospital bathroom mirror. There are multiple Pumps on the pole as well as Liz’s J tube feed. She is wearing a crisp blue and white Jonny and looks tired. Black on black mask from Vogmask.
Liz, a white person with brown and white hair and glasses is shown taking a bathroom selfie while getting IVIG infusion. Black on black mask by Vogmask. Oversized vintage maroon shirt with horse design from online consignment shop Fox and Fawn. Liz’s black Lofstrand crutch is shown against the door. Black feed backpack shown hanging from IV pole along with glass bottle of Gammagard SD, a necessary blood product that Liz gets every four weeks.
It is a way for me to process these tubes hanging from my body that help me stay alive.
To see my physical form as it is.
To document it.
Liz, a white person with brown and white hair and shaved undercut is shown wearing glasses and using black lofstrand crutch. Her feed pole is shown connected to her Jtube. Fitted cropped black shirt with three white moon phases and fitted black jeans shown With black K tape on Liz’s right shoulder area. There is a beige carpet and many colorful things in the background.
Liz, a white person with brown and white short hair shaved underneath is shown with black cloth strand crutch. She is smiling and looking off to the side with her hand in her hair. Black on black boots from dr marten. Vintage gray Vivienne Westwood shirt that states in white “too fast to live, too young to die” with a white skull and crossbones and dark blue jeans with ripped knees. There are multiple things in the background on the wooden floor behind Liz.
The love of accessories and clothing I’ve had for as long as I can remember tucked into my proverbial pocket – a reminder of who I am and what I’m into.
Every time I’ve been inpatient at the hospital over the last four decades, I have a bracelet or necklace with me.
Liz, a white person with a shaved head and glasses is shown with two black Lofstrand crutches. She is smiling widely. Wearing a black shirt that says in white metal style font “FEVER RAY”. Black slouchy lounge pants from Target. Blue and white fuzzy socks.
Liz, a white person with short brown and white hair, is shown smiling looking off to the side. She’s wearing glasses and a long black leather single earring. Oversized cropped asymmetrical black t-shirt shown with blue denim cutoff shorts. Black leather belt with silver grommets. Black Lofstrand crutch and GJ tube feed connected to feed pole shown. There are multiple balloons in the background that say “Happy Valentine’s Day“ and “Happy Birthday“ and there are a lot of things in the background that are very colorful.
The pandemic reminded me to take that love and explore it again.
The love of inanimate objects and presenting myself in a specific way.
What started off as a project that I thought would last for a few weeks or a month is more than a year and a half old now.
I have only missed five or six days in that time.
Liz, a white person with brown and white chin length hair is shown with vintage 80’s shirt that has a cartoon duck shrugging with” SHIT HAPPENS” in orange print. Gray fitted jeans with ripped knees shown along with white studded cuff and multiple studded cuffs on her other arm. In the background are many pictures and knickknacks and photos in a colorful room.
Liz, a white person with brown and white hair and glasses, is shown with her hands outstretched towards the camera. She is wearing multiple silver rings and a variety of necklaces. Oversized asymmetrical gray shirt and black fitted jeans. Her GJ tube is shown at the bottom of the photo.
I have used many posts to discuss different aspects of Disability, such as my lifelong toileting difficulties.
My vintage “shit happens” shirt is a great conversation starter for discussing incontinence, for example.
My ring splints, which are used to prevent subluxations in my fingers from Ehlers-Danlos syndrome, get a ton of compliments.
Each time I explain what their purpose is and hope that they might be helpful to somebody else.
Some days I don’t get dressed until just before I put pajamas back on.
Some days, that outfit, re-examining and exploring my personal style, has helped me get to the end of the day and I am beyond grateful for that.
