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.’”
Source – The washington post