Katy Arvidson rested on a hospital bed in a bright yellow room at Providence hospital in Anchorage. She hooked herself up to a white and blue plastic respirator to help her breathe while lying down.
“One of the troubles of having Pompe Disease is that my respiratory function is significantly limited,” Arvidson said.
Pompe Disease is a type of degenerative muscular dystrophy. Her nurse inserted a needle into Arvidson’s chest port, to prepare her for her 4.5-hour infusion. It replaces the enzyme that her body doesn’t produce that causes her muscle tissue to break down. She’s been getting the treatment every other week for fifteen years.
“When I first started coming here, I was still walking with a cane,” Arvidson said.
But she said, having a degenerative disease means she loses abilities over time. Now she uses a wheelchair.
“It's sort of an unending experience of having to let go of things, and it never stops,” Arvidson said. “I look back and like, ‘Wow, I could do that two years ago. I can't do that anymore.’”
But Arvidson is now tapping into her experience to share it with others. In February, she won the statewide competition to become Ms. Wheelchair Alaska USA and ran on a platform of mental health advocacy. Part of that work is talking openly about disabilities and mental health over social media. People with disabilities and their stories are seldom represented with nuance in the media, and for rare diseases like Pompe, which affects only about one in 18,700 births, many people may not know about it at all.
For the other piece of her work as Alaska queen, Arvidson volunteers for the state’s Disability Law Center and the Stone Soup Group of Anchorage, which serves families raising kids with special needs.
And she’s preparing for July, when she’ll travel to Ohio for the national Ms. Wheelchair USA pageant.
Lowery Lockard founded the pageant to fight the prejudice and discrimination women with disabilities face.
“How cool would that be to present women with disabilities in this arena that's so glamorous, so exciting, so empowering, all of these things,” Lockard said.
It started as a statewide pageant in Ohio in 1996 and later became a national pageant. Lockard said although glamour is an important aspect of the event, it’s not a beauty pageant. They don’t have a swimsuit competition, and they accept contestants of all ages. A 74-year-old woman was recently a runner up.
Platforms, like Arvidson’s focus on mental health, are a big part of the reign of the pageant queen. Last year’s winner champions accessible playgrounds, and Lockard said the crown helps make advocacy less intimidating.
“When somebody has a question, they may feel more comfortable asking a princess,” she said. “I think for kids, especially. It's like, ‘Yo, it's a real princess.’ It changes the atmosphere when people are talking about things that are very serious.”
Arvidson does talk about very serious things, sometimes while wearing her tiered, glittery crown or her white satin Ms. Wheelchair Alaska USA sash.
She said her advocacy is part of what gives her life a sense of purpose, which she doesn’t take for granted. When she lost her ability to work as a mental health counselor, and couldn’t access her own therapy, she entered a truly dark depression.
“I've been hospitalized three times because of suicide attempts,” Arvidson said. “I'm in a really good place right now. There's a couple major, major events that pulled me out of that very deep depression that are good things.”
During the COVID19 pandemic, her government insurance began to cover virtual therapy, which she said meant she could finally access mental health care. She also got coverage for some in-home care, so she could be active during the day, even when her husband was at work. It’s this relationship among disability, access to care, and mental health that Arvidson wants to illuminate.
“I want to talk about what it's like to have a degenerative disorder that ends you up in a wheelchair and has such an impact on your mental health,” she said. “I've dealt with that personally. I understand it professionally, and it's huge. It's really huge.”
Arvidson said the pageant has given her structure to do the work she wants to do in the world. And it’s also connected her online with a different type of community, the Ms. Wheelchair USA contenders from other states.
“It's pretty powerful and profound to hear other women speaking out about similar things,” Arvidson said. “Everything from ‘How do you have sex with your husband because you're disabled?’ to ‘How do you meet with legislators to talk about policy?’”
As close as they are, these new friends will also be Arvidson’s competition. In July, they’ll meet in Ohio to compete on stage and the next Ms. Wheelchair USA will be crowned.
If you’re in crisis or thinking of suicide, you can call 9-8-8.
