Rose Young had her first cardiac arrest when she was twelve years old. Now, at 28, she’s had too many to count.
That first time, her heart stopped for fifteen minutes. It took around seven defibrillator shocks to bring her back to life, and she was in a coma for a week. When she woke up, she had no memory of what had happened.
In March this year, Rose did a radio interview about her heart, her life, and her work. It was the first time she’d spoken publicly about what her “bad days” look like, and she found doing so excruciating.
“I feel so vulnerable, even listening to it again now. I hear myself crying, and I cry, again. At myself crying! It’s just really tough to hear.”
Rose has been diagnosed with “abnormal electrical activity”–an adult congenital heart defect–and a prolapsed mitral heart valve. She has a defibrillator inside her chest; her third one since that first arrest at age twelve. The defibrillator “kicks” her heart whenever it might be going to stop.
“It feels like if someone was to kick you in the upper left chest from the front and in your shoulder blade with a steelcap boot on… to someone else it would look like I was getting punched from the inside.”
“I have irregular heartbeats all day long,” she says. “Even if I get upset emotionally, my heart beats differently. I feel it all day, every day. I’d feel distress if I couldn’t feel it… My way of describing it is like I’ve got a frog, inside a sock, inside my chest, jumping around.”
My way of describing it is like I’ve got a frog, inside a sock, inside my chest, jumping around.
Rose also has fibromyalgia, a condition that causes widespread pain throughout her body, migraines, and chronic fatigue syndrome.
“At my worst, I can’t shower. I can’t stand up because it’s too exhausting, and the pressure from the water hurts my skin,” she says. “Any position in bed is painful. My heart will beat so fast every time I stand up, that will be my physical activity for the day. I’ve had days when I’ve spent three to four hours laying on the bathroom floor because I can’t find the energy to walk to bed.”
“I don’t want people to see me like that, to remember me like that. That’s not me. That’s my illness, that’s not me.”
And most people don’t. Most people will know Rose for another thing entirely: her work as a sculptor. Rose makes tiny replicas of famous food.
Rose’s art is entirely unique, and has captured attention and delight nationwide. People travelled from all over the country to attend her first exhibition in September this year. The exhibition took eight months to put together. Rose creates the miniature replicas of actual meals out of polymer clay, using tools like toothbrushes and needles. Each dish takes between ten and fifteen hours to make, and fits entirely in a teaspoon.
“My pieces are what I call ‘nano’ sculptures. Very very tiny food. I am constantly doing things I can see an end to because I don’t know what tomorrow’s going to be like. With my sculptures, my favorite part of them is I can finish them.”
Rose has now made more than 100 sculptures. But why food?
“I think food is something that makes most people happy,” she explains. “It creates memories and gives comfort.. it’s something we share when we celebrate and when we commiserate.. To say a lot of thinking went into my decision to make food would be a complete lie though. I just love food. However at the time I started sculpting food I had just been put on a medication that made some foods taste dreadful, so maybe subconsciously I was sculpting things I missed eating, but probably not!”
Rose says she gets emails from people calling her “inspiring,” but that’s not how she feels.
“Since I’ve started showing people my art, I’ve had all of these messages that are like “You’re so inspiring, I’m so proud of you. It’s so cool that you’re doing something.” It’s patronizing, you know? I hate that word. I’m just doing what I can do. Just the same way that you’re doing what you can do.”
“I hate that word: inspiring. I’m just doing what I can do. Just the same way that you’re doing what you can do.”
Rose has had periods of her life when she worked full time, but the toll of on her health was high.
“I could work, but I’d just go to work, come home, and go to bed, because I’d be so wiped out. And what’s the point in that? I didn’t get to have any sort of life. I tried really hard to be “normal” and keep up with everyone else, for a long time. But I couldn’t. I accept that now.”
Rose says living with a chronic, invisible illness presents more challenges than a lot of people could ever imagine.
“Sometimes people ask me to give up my seat on the bus, and I’ve just had heart surgery the week before,” she says. “But they don’t know that. I look fine.”
“Something I bite my tongue with a lot is people’s recommendations of how I might get better. I’m chronically ill. I’m not going to get better. ‘Have you tried meditating and only drinking water from the west side of the island?’… Look, if there was something, I would have found it.”
She likens her body to a car she needs to keep working on: “You have this car that’s not working properly, and you’re constantly trying to fix things, to relearn things. That’s what living with chronic illness is like.”
Rose is unable to take many medications because of the affect they may have on her heart, so she has to find other ways of dealing with her pain. A lot of that means pacing herself, just like a race car.
“There are days for making tiny peas, and there are days for not making tiny peas,” she shrugs. “But people go crazy for tiny food. It’s great. It actually gives me a real boost and it makes me happy that I bring joy and humour to other people with what I do.”
Photos: Tim and Nadine Ellen.