By Kasey Price
Writing Needle and Thread was difficult for me, but I'm happy I did it. It's weird, when you mainly write creative fiction, to turn the words back on yourself. It's vulnerable, and sensitive. I hope everyone enjoys a glimpse of the last twenty-two years of not only my life, but my entire families.
Photo by Jen Price
I sat across from my little sister on a sunny day in February.
Well, not exactly. I had sent her a Zoom link the week prior, asking if she was willing to be interviewed. Her response was resounding: “Duh.”
My sister and I are night and day. I am the writer, and my sister, Kristin, the presenter. I live in the past and future, constantly conflicted between what I said wrong and how I would be perceived. My sister is brave and strong-willed. She spoke deliberately, and with eye contact–I had always been bad at that.
Even the way we looked divided us. My hair is light, my eyes blue. My family said I resembled my mother's side, freckly and Irish. My sister’s eyes are deep brown, and her hair is long and dark. My mom joked that she was switched at birth: “Where did you come from?”
I switched on transcripts and pulled my sunglasses over my head: “Are you ready?”
“Ready when you are.”
This is the story of two sisters.
One of Kristin's first memories was in Kindergarten.
Children sat in a circle in music class and were told to hold hands with the people next to them. She held out her palms openly, waiting on the touch of her peers, but it never came:
"I used to have bad eczema all over my hands, and I remember we were all having song time on the rug. The kids sitting next to me didn't want to hold my hand because of my skin. It was heartbreaking as a four-year-old because I didn't see myself as different from anyone else. I didn't know what ‘being different’ even meant."
From a young age, Kristin has suffered from a handful of autoimmune and inflammatory diseases: Ehlers-Danlos syndrome, Postural Orthostatic Tachycardia Syndrome (known as POTS), connective tissue disorder, fibromyalgia, and systemic lupus. Symptoms include high fevers, dislocated joints, fatigue, and severe inflammation. For Kristin, these symptoms had become constant in her life. These diseases can also be known as “invisible illnesses”: pain that only shows on the inside; its symptoms typically do not reflect externally. This makes it not only harder for doctors to diagnose, but also more difficult for people to understand.
“What was it like?”
"It was incredibly isolating, and it caused me to be a very insecure child...one that was constantly nitpicking way too much to the point that I was hurting myself more than I was helping myself. And as a kid, I was on a lot of steroid treatments, so it made me retain a lot of weight, and stuff like that. I remember one time that I went to Mom, and I was so frustrated, and I asked her ‘Why can't I wear Kasey's clothes?’ Other sisters get to borrow their older sister's clothes, and it wasn’t fair that I didn’t get to do that.”
As Kristin struggled with these debilitating symptoms, I was living a life entirely separate. I was playing varsity on my high school's volleyball team. I was applying for SAT prep and going out with my friends on the weekends. I was receiving interview requests from coaches at Ivy’s. I became so blinded by my own life, that our sisterhood had become somewhat uninteresting. This was a time when I did not fully grasp the severity of Kristin’s diagnoses. Our lives seemed to overlap less than ever. We hadn’t become strangers – that’s a little too dramatic. Still, our lives sometimes felt removed from one another.
And time passed, as it was forced to do.
Kristin struggled with weekly flares and extreme fatigue. It wasn’t until December 2017 that she discovered a bald patch in her hair. It was the size of a quarter. By March, Kristin had lost over 60% of her hair.
It was terrifying. Over six months, her illness had become irrevocably external. Usually, I couldn’t look at my younger sister without seeing her as a kid, twirling and laughing. Now, things had changed. Her hair was coming out in clumps; her clothes no longer clung to her torso or arms. The extra fabric draped around her wiry bones and left me feeling gutted. My stomach found itself in knots, wondering how I couldn’t truly see how much pain she was in until now. I questioned if I was a good sister; if I should’ve known how hard it was all along. How fast something can become so blatant, so quickly, when it had been simmering inside for so long.
“You were a kid too, you know.”
I thought about this: let it stumble and somersault around the corners of my mind. I wanted to see where it decided to live.
The doctors’ visits turned into overnight stays at the National Institute of Health. Kristin continued to persevere, even when none of the questions were being answered. Doctors refused to test on certain diseases, even when we would find them to be positive years in the future. Certain physicians would write the number of child psychiatrists and slip it into my mom's hand, stating these symptoms were simply imaginary.
My mom, as well as the rest of my family, was furious.
I tilted my head on camera, looking at Kristin with wide eyes: “Yes, of course! Losing your hair, that’s all in your head, right?”
Kristin laughed, pressing her head into her palms: “That’s what they like to think, I guess. It’s hard to get a doctor to trust you, even though it should be the first thing on their minds. Listening, not telling.”
Our life had become a game of dominos. When one thing fell, the rest seemed to follow.
That August, we lost our dad. It was unexpected and harsh. I’m not even sure how I feel writing about it now. Sometimes, as a writer, it’s easier to use real emotions and place them into fiction. That way, you feel removed from what actions those characters are taking to deal with the pain of loss. We are not characters, my sister and I.
My dad had been a head-athletic trainer for the NFL for over two decades. When he wasn’t on the field with his players, he was with us. At night, he would help my mom wrap Kristin’s hands in Aquaphor, and teach her stretches to aid the pain in her left shoulder.
Our family was a unit: a bond that could not be broken; but it did break, horrifically, and none of us were quite sure how to continue. I spent the next months isolated, unable to connect with my mom or sister. I questioned God, and whether or not my dad went on a metaphysical vacation. I came to terms that praying wasn’t for me, but still did the sign of the cross before taking off on an airplane.
We worked ourselves back together, sewing up a new definition of family: one that included my sister, my mom, and me.
Kristin’s hair had started to grow back with the help of hemp-based CBD. Our mom had worked in the cannabis industry for over a decade in the public relations and marketing space.
“I was on a handful of experimental treatments. Anywhere from anti-malaria drugs to low-dose forms of chemotherapy. Eventually, I knew I couldn’t do it anymore, so I asked my mom to stop taking all my medications entirely. Nothing worked.”
It was nothing short of extraordinary. By the fall of 2018, just under a year of hair loss, Kristin’s hair had begun to grow back on her scalp and eyebrows. For the first time in a long time, there was hope. There was a natural and symptom-free way for Kristin to start feeling better. After recognizing these benefits, Kristin began the idea of Hoop Beauty.
“I want to make sure that everyone felt good and hopeful about life, and that's where the brand was born, and it was meant to just be a feel-good brand, and just something that you woke up and you look forward to using.”
Hoop Beauty was founded by three women. Three women were not only bonded by blood, but by pain, and grief. My mom operated as CEO of the company. My sister and I aided in product development, social media marketing, and attending cannabis conferences in places such as San Francisco and Las Vegas. It was interesting, being a teenager at a cannabis conference. Let me just tell you, it’s not what you think. Kristin says:
"I once had this woman walk up to me...I'll never forget. It was my first conference. She walked up to me outside of a cannabis tech conference, and very aggressively said that I shouldn't be taking hemp...and I shouldn't be taking CBD. I was 'too young' to be doing stuff like that. And I remember, instead of getting upset or worked up talking to this moment, I just asked her why she thought that. We had a conversation about it, and she didn't even know that there was a difference between cannabis and hemp, and just thought that I was making products that would make you high. People need to know that there are different branches of the cannabis plant. The hemp plant is a sister plant to the cannabis plant and has no psychoactive properties. They have completely different chemistry and cannabinoids. People need to make sure that they're educating themselves before they speak and make assumptions because those can be very dangerous."
Hoop took off very quickly. There was a huge peak at the beginning, where we are constantly on different news platforms: Daily Mail, Forbes, and Entrepreneur. This group of teenage girls was dominating the CBD space; a space where a lot of people didn’t even know it was legal for teenagers to dominate.
In 2021, I was diagnosed with undifferentiated connective tissue disease (UCTD). The easiest way I can describe it to somebody is it’s like a light switch turned on in my DNA. I was fine one day, and the next had turned me into an individual who was incredibly fatigued and in pain. The joints and muscles around my chest and heart became so inflamed it was hard to touch or move correctly. My blood oxygen levels would drop, and my temperature would spike at random times throughout the day. I had lost the stamina that had existed in my body since I was young. I was once a consistent athlete. Then suddenly, at 20 years old, I was having trouble walking a flight of stairs.
The worst part, I would argue, was the fact that nobody could see how much I was hurting. From the outside, I looked the same. I tried to keep up with my same tasks and maintain my work and class schedule. Internally, however, I felt like a shell. My body, in this case, was turning toward an ultimate form of empathy. I saw how people treated me the same, even when I didn’t want them to. Even when all I wanted was somebody to notice how much pain I was in, even when it didn’t look like it.
Do you know who did notice? My sister.
Kristin and I are now 20 and 22 years old. In one week, it will be my sister's 21st birthday. Both of us continue to persevere, even in the face of chronic pain, unyielding grief, and, in Kristin’s case, knee surgery approaching in May.
“...And you gotta take everything one step at a time, because when you think about it in a way that you lean into the pain and sit there and think about it. You really think about the fact that ‘Hey, I'm 20 years old and this is gonna get worse, and it's gonna continue to get worse, and this is it.’ This is the best of what I'm gonna get.”
“This is the best it’s going to get.” The thought of it brought tears to my eyes, and I felt grateful for the sunglasses over my face. I didn’t like to cry in front of my sister.