Maya Auchincloss makes her living plunging through the air, twisting in silks. An aerial circus performer and coach, her movements through the hoop are graceful, effortless. You’d never know that for the last eight years of her life she has been in severe pain every single day.
Auchincloss, 25, has a rare malignant glomus tumour on her left ankle. It has returned repeatedly despite multiple invasive surgeries, including a skin graft. Chemo and radiation aren’t options. Nerve blocks work briefly, if at all. “I am in excruciating pain and all of my energy is being put toward pain management,” she says. “I can’t deal with this anymore.” So now, after years of interventions, she has requested elective amputation. If all goes as planned, her foot will be removed this fall.
Rather than wallow in sorrow or self-pity, Auchincloss sees this decision as a radical act of self-love — choosing life over pain. To celebrate her autonomy, she’s created a bucket list of experiences and achievements (or, as she calls it, a “f—k-it list”). “I just want to do a bunch of stuff that I wouldn’t have the guts to try before. Not a lot is more terrifying than getting your foot cut off, so that put a lot into perspective. I was like, ‘well, if I can cut off my foot, I can probably do a dance lesson.’”
She plans to tick them off over spring and summer. She hopes to dip her foot in various bodies of water, from the Pacific and Atlantic oceans to the English Channel and the Irish Sea. There’s plans to rock-climb and skateboard, and try treetop trekking and line dancing. Trampolining is on the list, as is kite-surfing. She’d love to walk a fashion runway. And maybe even do a rage room.
The Georgetown resident has plenty to be angry about; she’s had a long, difficult relationship with the medical system. When she was 18, an ankle specialist insisted Auchincloss couldn’t possibly be doing aerial stunts with the amount of pain she claimed she was in. “He also said I should change my diet and lose weight and exercise more even though I was a competitive athlete,” she remembers. At the time, she was five-foot nine-inches and about 120 pounds.
He sent her off for physio, which she tried until the physiotherapist refused to continue treating her, fearing it was making her pain worse. A second ankle specialist agreed with the initial assessment during a phone appointment without ever examining her in person.
She reached her breaking point two years ago when the pain had become so severe she contemplated killing herself. Auchincloss remembered a video she’d seen a few years prior of a woman who had been in a car accident and broken a lot of bones in her foot; after years of terrible pain, she’d chosen to remove it. “I was just so frustrated. I had no idea what to do, and nothing was working, so it’s like, just cut off the foot. I don’t care. Like I genuinely don’t think I need it,” she says. “I can put a prosthetic on and it’ll be fine.” A plea to her medical team to consider amputation was rejected, however, as being “too drastic.”
After another year of unsuccessful treatments, she wrote a letter to her oncologist to again ask for the surgery. This time, they relented, even if some members of her medical team still balked. One told her she didn’t want to actually do that; another said, “it doesn’t grow back, you know.” “Yeah, I know,” Auchincloss shot back. “I’m not a lizard.” Another objection: her age. Auchincloss saw her youth another way, with decades of pain stretching out in front of her: “I can imagine a life where I’m pain-free without a foot. I cannot imagine a life with this because this is unlivable.”
She’s also confident she will be able to resume an aerial career post-recovery. She already knows a double amputee in Ottawa who is an avid aerialist, and, thanks to her budding social-media stardom, many amputee performers have reached out to her to support her choice. Auchincloss’ documentation of her journey via social media has earned her over 7,000 Instagram followers, with one of her videos scoring 4.3 million views.
Not all her online followers are as positive: one commented that being disabled is the worst thing you can be. Auchincloss rolls her eyes at the notion. “The worst thing ever for me would be to continue to live in this amount of pain for the rest of my life. This is the best thing that’s going to allow me to live a happy and fulfilled life,” she says.
As for her bucket list, she’s already crossed off a few items like figure skating, and ballroom and tap dancing. She even was a mermaid for a day, paddling about in a pool with a giant tail. She’s also using her pre-amputation months to raise money for her upcoming expensive prosthetics; a GoFundMe has already raised almost $8,000 and she’s producing two pirate-themed circus fundraiser performances with her circus friends (“kind-of on-brand,” Auchincloss says with a smile).
Auchincloss laughs easily about the surrealness of her upcoming surgery. The decision “was very freeing,” she says. “I was glad I actually had the opportunity to make it, as it’s not a decision that many amputees get to make that far in advance.” In the meantime, she has a bucket list to finish, and maybe another tattoo to procure. She’s happy to show off one of her favourites, pulling up her pant leg. Right below where the surgeon’s saw will enter later this year, a delicate series of dashes march around her ankle, punctuated by a tiny set of scissors — the international symbol for “cut here.”
