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One ‘last dance’ for this Wisconsin teen who has scheduled her own death

The Washington Post The Washington Post 21/07/2016 Rachel Premack
© Courtesy of Jerika Bolen

Jerika Bolen is going to prom. And, as you can expect from a 14-year-old with purple hair, she’s thought a lot about her outfit.

“I’m not much of a girly girl. I’m more of a punk badass girl,” Jerika explained on the phone Wednesday night from her home in Appleton, Wis. “I actually have a pretty girly dress, but I’m going to have punky jewelry. Just to keep my punk soul with it.”

This is Jerika’s very own prom. She’s calling it her “last dance.” And it is.

Jerika Bolen has an incurable disease, type 2 spinal muscular atrophy, that typically kills during adolescence, but not before inflicting great pain. She is feeling that pain now and is being kept alive by use of a ventilator 12 hours a day. Months after turning 14, Jerika decided it was time to remove the ventilator, time to die.

The alternative: She would lose the ability to control her hands and to speak, while experiencing more crushing pain and surgery along the way to an inevitable death.

So by the end of August, she will turn off her ventilator she uses to breathe — and spend her final days at home with her mother and two dogs.

Type 2 spinal muscular atrophy (SMA II) is a rare disease that’s causes debilitating pain and in her case the loss of all muscle control save for parts of her face and hands. She’s had surgeries to place rods in her back, remove all but a shard of her hip bones and fuse parts of her spine together with screws. The pain is regularly at a seven-out-of-ten scale, which is akin to constantly having a migraine. Sometimes it climbs to eight, nine or ten, because the screws in her bones sometimes pinch her nerves. People with SMA II, an inherited, incurable condition, don’t usually live into adolescence, but the people in Jerika’s life say she’s a fighter.

“I just kept going,” Jerika said “I didn’t want to hurt my mom, I didn’t want to hurt my family. I wanted to keep fighting and keep fighting. I didn’t have a life, I was just laying on the couch, got up to do homework and then went back to bed because I was so sore.”

She doesn’t want to fight anymore. A few months ago, she endured her 38th surgery — yet another procedure to manage the crushing pain in her back and hips. She decided it would be her last.

“I sat myself down and I thought, ‘Jerika, am I here for me or am I here for my family? I can’t even do anything besides lie in bed because I’m so sore.'”

Jen Bolen, Jerika’s mother, knew this day was coming. As a nurse, she told the Appletown Post-Crescent on Wednesday, she understood how Jerika’s pain medications were harming her body, how she wouldn’t be able to speak or smile if she continued on. “After every big surgery, she loses a lot of strength,” Jen said.

That didn’t make it any easier to bear the news. In early June, Jerika told her mother with the assistance of the teenager’s counselor that she wanted to go off life support. The single mother first said they could just up her pain medication.

Jerika was adamant. “No, Mom. I’m serious,” she had said. “I’m actually done.”

For all of Jerika’s handicaps, she is Jen’s teenage daughter. She listens to My Chemical Romance and loves YouTube celebrities. She wears green lipstick and likes to go to the mall. Her Facebook is littered with funny pictures and makeup tutorials. Jerika has a girlfriend too; she’s gay.

© Courtesy of Jerika Bolen

“I don’t know how to stop fighting for her,” Jen said to the Post-Crescent. “That’s all I’ve done since the day she was diagnosed when she was eight months old.”

And she delights the people around her. Alyssa Dahlen, one of her nurses, told the Post-Crescent that Jerika maintains a quick wit and isn’t afraid be a little manipulative — like any teenage girl. She has perseverance beyond her years too, and is never melodramatic about her lot in life. “How do you not be bitter?” Dahlen said. “It’s amazing.”

“She’s a very unselfish little girl,” her grandmother, Sue Bolen, told the Post-Crescent, “and she’s tougher than anyone I’ve ever known.”

The decision to end Jerika’s life, though the family knew it was going to happen, still was not easy. After Jerika announced it, Jen felt numb, angry and deeply sad.

“The first week, I was crying all the time,” Jerika said. “I was constantly thinking, ‘Oh, I’m not ever going to have kids, I’m not going to ever have a family, blah, blah, blah.”

Then Jerika perked up. She said there’s a better afterlife for her — one without pain. One that’s like life before all the surgeries, all the pain that started around the time she turned eight. It might be like when she could go to school and play with friends. Except this time, maybe she could go on the monkey bars too, instead of just watch.

“I have been realizing I’m going to get to walk and not have this pain anymore and not have to, like, live this really crappy life,” Jerika said. After that appointment with her mother and her counselor, “we cried and we cried and we cried. But after a couple days, I was running around so happy. I was like, ‘I’m going to be able to walk, I’m going to be with God, I’m going to be free.’”

© Courtesy of Jerika Bolen

But Jerika is scared her mother will take it too hard. What if she stops eating, stops taking care of herself? “She always says, like, I am what she like lives for sometimes,” Jerika said in the video accompanying the Post-Crescent article, seated next to Jen in their home.

Jen told the Post-Crescent she still ponders what drugs could maintain a comfortable life for Jerika, to convince her to keep living. But she’s also respected her daughter’s decision. Jerika is getting hospice care at home. The ventilator will be turned off at the end of August. The two now no longer have to fight for each other — they get to enjoy one last humid summer.

She’s enjoyed visits from grandparents, fireworks, movie theater outings, sleepovers and a visit to the Muscular Dystrophy Association camp that Jerika has always attended.

This Friday is perhaps the most anticipated event of the summer though. In a tulle turquoise dress, Jerika will be Prom Queen.

She got the idea for having a prom from MDA camp. Jerika said the camp’s dance was always a great time. “It was the first time I wasn’t a punk. I was a princess.” Everyone at the camp who is 17, the last year you can attend, is named prom king and queen. Jerika won’t turn 17 though — so she’s taking the chance to be prom queen at her own ball.

It’s going to be green and black, her favorite colors. They’ll play pop hits, but mostly it will be emo music like My Chemical Romance. They’ll celebrate Jerika with hors d’oeuvres, cake and dancing in The Grand Meridian, an event hall near the Appleton water tower. “I’m just hoping that everyone can be happy.”

Happiness is what Jerika aims for, above all.

“I know I can’t always be happy every day,” she said to the Post-Crescent. “I still wonder why God picked me to have this disease and I know I can never know the reason. Maybe because I’m strong, I guess.”

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