Friday, July 15, 2016

When I decided, I felt extremely happy and sad at the same time

A 14-year-old girl is living out her summer dreams after choosing hospice over surgery and telling her mother that she is ready to die. Jerika Bolen, who has Spinal Muscular Atrophy Type 2— which is often fatal for patients in adolescence— is in constant chronic pain, the Post-Crescent reported.

“When I decided, I felt extremely happy and sad at the same time,” Bolen, of Appleton, Wisc., told Post-Crescent. “There were a lot of tears, but then I realized I’m going to be in a better place, and I’m not going to be in this terrible pain. I’ve been working on it and thinking about it for way longer than anyone else has.”

Bolen uses a power wheelchair and has control over her brain, eyes, nose and mouth but has trouble swallowing. She has slight control over her hands and arms but relies on constant care for everything else and uses a ventilator to breathe for 12 hours per day. She’s had more than 30 surgeries since being diagnosed at just eight months old, with her muscles further deteriorating after each procedure. The medication she takes to keep the pain at a level 8 out of 10 has also damaged her body, the Post-Crescent reported.

At the end of August, Jerika has instructed her mother, Jen Bolen, to pull the plug on the ventilator. Neither know how long it will be before she dies, but Jen hopes that it’s not too many days. She told the Post-Crescent that she has had to explain the difference between assisted suicide and her daughter’s decision to many people.

Bolen’s doctor, Kari Stampfli, director of the pediatric palliative care program for UW Health in Madison, told the news site that for patients with spinal muscular atrophy the standard of care is often comfort measures from the beginning and that there’s always the option to stop if it isn’t offering an improved quality of life.

“If she’s at peace with it, I have to find a way to make peace with it,” Jen told the Post-Crescent. “I know she’s only 14, but she’s old enough to decide. It’s her body and it’s her pain.”
For now, Jen is focused on spending the summer fulfilling her daughter’s wishes, which include trips to the movies, fireworks with her grandparents, sleepovers with friends and a community-wide prom. Appleton’s Grand Meridian will host the event July 22, and Bolen has chosen a green-blue dress for the dance, according to the report.

“I’m super happy,” she told the Post-Crescent. “And I don’t have to think about anything bad at the moment.”

Bolen told the Post-Crescent that she was ready to choose hospice after a surgery last year made her pain worse.

“After that surgery – it didn’t work and my pain got worse – I kind of sat down and thought, ‘Am I doing this for me or for my family?’ I kind of realized I was doing it for my family,” she told the news site.

Bolen has asked that after she dies people check in on her mother like “a baby,” to make sure she is eating, sleeping and getting out of the house. She told the Post-Crescent she knows her decision will leave her loved ones reeling but that she also knows it’s the right one.

“I try to be as happy as possible,” Bolen told the Post-Crescent. “I know I can’t always be happy every day. 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.”


  1. So, yes, I’m different now for getting to know Jerika Bolen, the 14-year-old Appleton girl who allowed me to tell the world about her heartbreaking decision to die.

    She's 25 years my junior, but Jerika showed a maturity and sense of enlightenment through our conversations that I can only dream of. She knows better than any that our lives are fleeting. And she’s treated every moment for the miracles they are.

    Jerika, whose story was posted last week at and appeared in Sunday's Post-Crescent, has spinal muscular atrophy type 2. The terminal disease robbed her of movement from the time she was a baby. The pain is unrelenting — eased only by a steady dose of painkillers that are wreaking havoc on her already battered body — and it’ll only get worse.

    So she made the biggest decision that any human being — much less a teenager — possibly could. She’s ready to die. She’ll undergo hospice care at summer’s end and do without the ventilator that has prolonged her life.

    In the meantime, she continues to defy logic.

    Jerika didn’t display a hint of bitterness through our chats, and at 14 talked about a decision to die as casually as some might discuss the previous night’s television programming.

    Kari Stampfli, Jerika’s nurse practitioner, said her attitude would be remarkable even for a person without such heartbreaking struggles.

    “She’s experiencing excruciating, chronic, daily pain, but she smiles and has a personality that can light up the room,” Stampfli said.

    Jerika provided me with several wakeup calls, the first coming during our initial interview. I jokingly mentioned that Facebook, her favorite social media outlet, was built for self pity but her posts severely lack any hint of pity.

    “If anyone had a right to feel sorry for herself ...” I began.

    “I don’t have that right,” she interrupted.

    I asked for the best advice she could give a guy who treated a lost set of car keys as a full-blown crisis earlier that morning.

    “Stop complaining,” she said. “It doesn’t do anything.”
    She continually reminded me that wisdom isn’t a function of age but experience.

    I couldn’t help but think back to my summer at age 14. I delivered newspapers and spent half my earnings on baseball cards. My only big concern was whether freshman hazing was a real thing.

    Though the maturity comparison was striking, I also recognized that 25 years ago doesn’t feel so far gone. If I’m fortunate enough to have another, those too will go in a flash.

    I’ve counted a lot of blessings in the last month. I also began to see Jerika as a role model.

    Let’s drop the complaints. Let’s live with more urgency. Let’s smile even if we have to force it. Yeah, I know, it’s far easier said than done.

    It’s part of the irony I noticed through every conversation with Jerika.

    For a girl who lacks the muscle to even scratch an itch, she’s as strong as they come.

    I’m stronger, and I think a bit wiser, for knowing her.

  2. More than 1,000 people converged on a Wisconsin town Friday to honor a 14-year-old girl with a fatal illness who has chosen end-of-life hospice care over surgery.

    Jerika Bolen has who has Spinal Muscular Atrophy Type 2, a disease which is often fatal for adolescents. She has to use a power wheelchair, a ventilator to help her breathe for 12 hours each day, and has had more than 30 surgeries since being diagnosed at just eight months old, with her muscles further deteriorating after each procedure.

    At the end of August, rather than undergo another surgery, Bolen has instructed her mother to pull the plug on her ventilator and leave her to die.

    "There were a lot of tears, but then I realized I’m going to be in a better place, and I’m not going to be in this terrible pain," Bolen told the Appleton Post-Crescent last week. "I’ve been working on it and thinking about it for way longer than anyone else has."

    Bolen's mother, Jen, has vowed to spend the summer fulfilling her daughter's final wishes, which include trips to the movies, fireworks with her grandparents, sleepovers with friends.

    And the prom.

    Clad in a blue-green gown, Jerika arrived at the venue after receiving an escort from 17 Appleton police squad cars and a fire truck. The Post-Crescent reported that she received bouquets of flowers from as far afield as Kuwait.

    Well-wishers came from far afield, too. John Current drove his family to Appleton from California, bringing a stuffed animal as a gift.

    "It’s inspiring, it’s sad and emotional," Current said. "It’s the whole thing. She just captivated me ... out there on the dance floor [she looks] like she’s living life."

    The first dance honors went to Jerika's mother, Jen. The song? Martina McBride's "In My Daughter's Eyes".

  3. Thousands are begging a Wisconsin teen with a painful disorder to reconsider ending her life at summer's end, but one man has taken the issue personally since he, too, is living with the disease.

    Struck by the story of Jerika Bolen, who suffers from spinal muscular atrophy type 2, 23-year-old Jordan Schroeter, of Grafton, Wisconsin, is begging the 14-year-old to have a change of heart.

    "Jerika, if you're watching this — please don't do this. Please reconsider your decision," Schroeter says in a video plea that has since gone viral. "Jerika, you have so much left to give. You are a woman of worth. You are a woman of value, and now is not the time to leave this world."

    The video titled "A Message to Jerika Bolen" has garnered more than 40,000 views on Facebook since it was posted only days ago.

    He explained that he has suffered through multiple surgeries, understands the monotony of lying on the couch all day, and has even encountered a close brush with death during a near-fatal bout with pneumonia.

    And, for the last two years, Schroeter told that he also went through a period where he doubted the direction of his life.

    "I understand the mindset of what she's talking about — what it feels like to have no quality of life," he said. "I didn't know where I was going and I felt worthless. It claws at your brain, it eats you alive, and demons attack you internally."

    But when Jerika Bolen announced earlier this month that her constant pain has become too much to bear, Shroeter said he snapped out of his dark period.

    "All of a sudden, this story comes along, and that was the end of my crisis," he said. "She was part of the key. I used the pain as fuel rather than sulking in it. I decided, 'Okay, I need to say something.'"

    The aspiring priest, who just completed his bachelor's degree in pre-seminary studies from Concordia University in Wisconsin, said he realized in that moment that his purpose in life was to help others, starting with one desperate plea for Jerika to re-examine her decision.

    But Jen Bolen said his incessant plea that has made its way to the family several times has only made the time harder for the family.

    "It's frustrating when I continue to get these messages trying to say they know where she's coming from, because they don't," Bolen told "She decided on this for a long time."

    Bolen explained her daughter's discomfort stems from not the disease itself, but the countless surgeries she has gone through to ease the pain, which have unfortunately "only made it worse," she said.

    "Because of her fighting spirit, I know she would say if she can handle it, and she has just handled way beyond what I could have ever asked for," her mom said. "It would be very selfish of me to say, 'No, stay here.'"

    After throwing Jerika a prom to remember last weekend as her final wish before she ends her life, Bolen said her daughter's decision has finally began sinking in.

    "As a mother, it's hard for me not to want to give every last ditch effort to try to convince her," Bolen said, while fighting tears, "but she's made her decision and no one's going to change her mind.

    "People just need to stop," she said.


  4. #jerika bolen wants to die. Now whenever someone says an able-bodied teenager wants to die, usually calls to mental health services become involved. Even if the teen has a mental disturbance, we will typically try and save her, even if our efforts to do so are completely wrongheaded and counterproductive. In this case, Jerika Bolen is physically disabled so society seems to be egging her on.

    I'm not here to criticize Jerika Bolen.

    Don't get me wrong, I'm not here to try and say Jerika Bolen shouldn't be allowed to do this. Her disability, Spinal Muscular Atrophy Type 2, puts her in horrific pain. I don't have her disability so I'm not qualified to opine on the issue of the ethics of her dying one way or the other. Better people in the disability community than I, many of whom have her same disability, are trying to reach out to her and show her there is a better way. I'll leave them to it.

    I'm here to criticize the people who seem to have entirely too much enthusiasm for the project. Bolen, wants to go to her prom before she dies. As such, she organized a GoFundMe to get a special prom funded, It made well over its $25,000 goal. Which raises a question: What is up with our culture?

    Browse GoFundMe for about ten seconds and you will see a bunch of requests for people who need wheelchair vans, modifications to their homes, or medical treatments to stay alive. You'll also see that a great many of these go unfunded. In large part due to the same media that seems so interested in her death being uninterested in helping those who want to stay alive.

    Of course there seems to be an indication that popular media want the disabled dead...

    Let me just offer some closing remarks. If you're thinking of dying, whether you're disabled or not you should really seek help and support. Death is a permanent solution to a temporary problem If you're one of the people who donated to Jerika Bolen or is inclined to do so, please consider donating an equal amount to a disabled person who wants to live #News #opinion.

  5. At the end of August, a 14-year-old girl intends to commit suicide. The media is full of the news, and it’s calling her brave and inspiring for being outspoken about her decision. Typically, suicidal ideation in teenagers is not celebrated: It’s viewed as a horrific problem that indicates the need for medical intervention. The difference in this case is that Jerika Bolen has Spinal Muscular Atrophy, a congenital disability…

    In the aftermath of previous physician-assisted suicides, cases like Bolen’s are dividing disability advocates and assisted-suicide proponents.

    The reality of situations like these is extremely complex, and it’s simplistic to say that this is just about the right to die, and that there are only two sides to the question on physician-assisted suicide. There are a myriad of contributing factors: Disablism, and the notion that life with a disability is not a life worth living; racism, and the judgments made about a black child and her family; the history of using disabled children as pawns and objects of debate…

    Though many outlets assert that people with SMA II rarely survive their childhoods, this is inaccurate. Life expectancy can vary depending on the quality of care received and the specifics of someone’s condition, but is on average “intermediate” — shorter than that of non-disabled people, but not inherently fatal, though many people do ultimately die of complications like respiratory failure. The condition is considered progressive, but not terminal. “Incurable,” as the media puts it, is not the same thing as “terminal.”…(continued)

  6. (continued)In 14 years, she has endured 38 surgeries. This level of medical intervention is highly unusual for people with SMA II, some of whom have spoken out in concerned surprise about the number of surgeries she’s had. Bolen also reports that she experiences extreme pain daily, with an average pain level of around seven out of 10, which is also unusual. She asserts that she has a very poor quality of life due to her disability and associated complications, and says she would like to go off her ventilator, enter hospice, and die.
    While the headlines have been filled with her story, they have primarily presented it from a non-disabled perspective, and the notion of “better dead than disabled” is common in that context (look to the wild success of Me Before You). For disabled people, though, those headlines ring alarm bells. They argue that it is important to separate out disability and terminal illness, because disability rights activists worry that a failure to do so will create a slippery slope.

    Is Jerika Bolen terminally ill, or is she disabled? Is disability itself a terminal illness in the eyes of society? The case of 17-year-old Cassandra C., a teen with cancer who wanted to refuse treatment, highlighted the debate over medical choice for minors with terminal illnesses, and Bolen’s case is being wrapped in the same narrative. There’s a big difference between cancer and a progressive disability, though, and it’s not being addressed…
    Her race complicates matters even further. People on both sides of the debate are making some disturbing assumptions about her degree of agency, understanding of her condition, and ability to make choices, and they’re making the same assumptions about her family. The origin of these assumptions is social — for example, the government agencies that decide whether parents are fit to care for their children use racialized standards, while black parents are blamed when their children don’t succeed in a racially unequal school system.

    The discussion also tends to elide the very intersectional aspects of race and disability, and the fact that children like Bolen are at a profound disadvantage not just because they are disabled, but because they are children of color. We know that health-care disparities determine the level of access to care children of color experience from the start, and that’s true of disabled children as well. Medical racism is a very real and documented issue: Bolen may not be receiving the best quality care, especially when it comes to pain management, as we know pain is under-treated in black patients…

    Advocates, meanwhile, argue that she should have the right to decide to die if she’s suffering, as she says that she is. In making their case, they evoke the same language of autonomy that disabled people do when talking about their rights. Some of that advocacy includes disseminating inaccurate information about SMA and disability in general, and reinforces not that Bolen should have autonomy, but that disabled people should want to die.

  7. When Kara Tippetts, a 38-year-old mother of four, died of breast cancer last year, more than 17,000 people live-streamed her funeral. Tippetts gained national prominence through her blog, where she confronted her impending death directly and offered a refreshingly frank take on what it's like to have a terminal disease.

    Unfortunately, the openness Tippetts displayed is usually missing where it's needed most: hospitals. Doctors, nurses and other caregivers are often reluctant to discuss end-of-life plans with terminal patients. Death is considered a taboo topic, until after a patient has died. This lack of patient-provider communication frequently leads to degraded care and needless suffering.
    One recent survey of patients with advanced cancers found that only 5 percent knew their projected life expectancy was just a few more months. Another found that only about half of patients dying from renal and pulmonary conditions had been offered consultations on palliative care.

    Denied a clear understanding of their situation, terminal patients often pursue invasive treatments that actually make their lives worse. Indeed, over 70 percent of patients with incurable colorectal, breast, lung, pancreatic and prostate cancers continue to receive aggressive care in their last months of life, treatments which typically induce vomiting, mouth sores and other torturous side effects.

    This collective denial of the inevitable imposes a huge cost on patient well-being—and too often, it’s for little or no return. Over the past five years, according to a 2015 JAMA Internal Medicine study, nearly 70 percent of cancer drugs were approved without proof that they extended or improved life.

    While cost should never be a factor in a doctor’s treatment recommendation—or a regulator’s decision—the collective denial of death’s reality is also putting a financial burden on patients and their families. Indeed, families with cancer patients are nearly three times more likely to declare bankruptcy than other households...

    This month, for example, Jerika Bolen, a 14-year-old suffering from Type 2 spinal muscular atrophy, a terminal genetic condition that causes constant pain, will end her life.

    The Wisconsin teen, who spends 12 hours each day connected to a ventilator and most of her time in bed, made this heartrending decision earlier this year after her 38th surgery.

    Her final wish? A prom. So on July 22, hundreds of friends, admirers and family members gathered at a ballroom in Appleton, Wisconsin, to dance the night away. Bolen was named prom queen.

    Terminal patients can only make these tough choices if their doctors are trained and able to share bad news. Yet most doctors receive zero training on how to have these hard conversations. Less than a third of primary care physicians receive instruction in end-of-life treatment…

    If properly informed, many patients with incurable illnesses may want to forgo painful and expensive treatment, choosing quality over quantity for their remaining days, with their doctors and caregivers as compassionate collaborators. Silencing such end-of-life discussions fails our terminal patients in their final need.