An artist's finishing touches

Kittel, 32, suffers from Friedreich’s ataxia, a progressive neurological condition that saps abilities and energy and dramatically shortens lifespans. After watching her brother Aaron die of the same condition when he was 33 — he was bedridden for much of his final year — Kittel plans to end her life with a physician’s assistance before the end of the year. New Mexico is one of 10 states that allow residents to take such an action.

Kittel was diagnosed at age 5 and didn’t start showing symptoms until age 16, she says. As recently as a few years ago, she was still able to drive. Now, she spends all her time either in her power wheelchair or in bed.

The images in Cocoon are aimed at reflecting Kittel’s journey and medical condition. Stay Wild, a 12-by-16-inch acrylic-on-canvas work, depicts a skeleton with red-hued bones; it looks like it could be in the process of deteriorating or fading. Stay Wild serves as the background image for the poster advertising Cocoon, which Kittel bills as her “final metamorphosis celebration.”

What once was... will always be, a 10-by-10-inch oil on canvas, shows a child interacting with an adult across an apparent void between clashing green and pink backdrops. Crowsfeet, which is 18 by 36 inches and was created using acrylic paint and POSCA pens on canvas, reflects Kittel’s desire to return as a bird. The three pieces were created in January, February, and March, respectively, demonstrating how busy Kittel has been.

Kittel grew up in Loveland, Colorado, and moved to New Mexico in 2019. She was searching for a wheelchair-accessible apartment, and the first one she found was in Santa Fe. Her father, Joe Kittel, later moved here to help her.

“I live with some pain,” Al Kittel says of day-to-day life. “I take pain medicine pretty heavily, but it doesn’t fully work. In my mornings, after I eat breakfast, I have someone help me put paint gloves and an apron on. Usually my dad comes over and helps with lunch, and then I have four hours of working in the afternoon or evening. I go to bed probably at seven or eight.”

She gets about 11 hours of sleep most nights. Unsurprisingly, painting is the highlight of each challenging day.

“I don’t get much alone time because I need so much help,” Kittel says. “Painting is the time when I can forget I have this disease because I’m not restricted. Like, I can go anywhere. I can do anything through my painting. I’ve been painting people dancing, and it’s like I’m dancing. It’s really cool.”

Kittel remembers what it feels like to dance. Until age 16, she had no motion limitations. After living as a bird, she wants to be reincarnated as a physically active person.

“I definitely want to be a bird and get a break from being a human,” she says. “There’s the freedom of flying, and I think of most birds as being wild and not pets. In my next human life, I’m going to be a dancer, roller skate, bike ride, go on hikes. I want something else I’ve missed in this life: being in love and having a partner.” Having a plan helps Kittel feel like she’s in control.

“I’m adapting constantly,” she says. “I know what the end looks like. I don’t want to suffer. I saw my brother suffer a lot and lose his ability to engage with the world. I want to leave on a good note.”

Kittel says she was close with her late brother Aaron in a spiritual way, but it was difficult to spend time around him.

“Every struggle that he had — everything he was going through — reminded me that that was going to be me at some point,” she says. “It was also a blessing, because I could see a roadmap: I’m going to need a shower chair. I’m going to need a power wheelchair.”

Kittel’s father, Joe, says Aaron tried to kill himself when he was 18.

“He’s in the hospital and he says, ‘Dad, I’m ready to move on. I know the next life’s going to be better. I want to kill myself. Please let me kill myself.’” Joe Kittel says. “I said to him, ‘If you kill yourself and you don’t say goodbye, I will hunt you down in the hereafter, and I will kick your ass. So promise me that you’ll say goodbye.’ And that worked.”

Joe Kittel has two other children who haven’t been tested for Friedreich’s ataxia nor shown signs of the affliction, he says.

“One of them was a live-in caregiver for Aaron during his last couple of years,” Joe Kittel says. “He suffered a lot from survivor’s guilt. He’s also the one who’s closest to [Al] of all my children. And I think he’s just being torn up by her having this disability and choosing to leave.”

He says his daughter has insisted there be no memorial service.

“I said hey, you know what? That’s not your choice, because you’re not going to be here,” Joe Kittel says. “I think something will naturally happen. And we’re probably going to have friends and family get together at the opening of the art show.”

Al Kittel says she took an art class at Santa Fe Community College as a way to get out and meet people, then returned for a full course load a couple of years later. She worked closely with Jared Weiss, who was teaching painting and drawing at the college when she began taking classes and is now the program head of drawing and painting for its School of Arts and Design.

Kittel recognized last fall that her remaining time was waning, and she wanted to see her work in an exhibition before it was too late.

“I reached out to some galleries, and they were like, ‘We are booked out for years.’ The school is such a big part of my journey. It’s amazing that they could have a show there.”

Weiss helped Kittel secure the show at the college’s Visual Arts Gallery. He says that when he began working with Kittel about seven years ago, her hands shook as she painted, but it wasn’t an obstacle.

“She said to me kind of early on that the control aspect was really difficult,” he says. “I said, ‘Well, you can use that as a type of energy in your work.’ She does have an amazing amount of control, but the work also has this really organic quality. With the shake that she has, it just gives this amazing feeling that everything’s vibrating; everything has this energy to it. I’ve had many naturally gifted students, but it clicked for her really early on.”

Weiss says he supports Kittel in her decision to end her life.

“We’ve had some intense conversations about it; tears have been shed,” he says. “But in my head, it makes sense, and I’m so happy that I can help her share her work and her story.”

Kittel’s feelings are evolving as the show — and her next life — draw nearer.

“I was really anxious, but now I feel calm and excitement,” she says. “And even if no one else was coming [to the reception], I’m excited just to see all my paintings in the gallery.” ◀

Editor’s note: Al Kittel is aware some people might want to contact her after reading her story, and she welcomes emails at allison.kittel@gmail.com. She advises that she might not be able to respond to every one.