I was deeply moved by the recent story of Jerika Bolen, a 14-year-old girl from Appleton, Wisconsin who was born with spinal muscular atrophy type 2, an incurable disease that affects the nerves in the spinal cord. Jerika has never walked. She has endured thirty surgeries, and suffers constant, severe pain. She cannot perform any basic self-care functions, including breathing and swallowing without assistance.
According to a story in the USA Today Network - Wisconsin, earlier this summer, Jerika told her mother that she was ready to die. She knows that as the disease progresses, her pain will increase. Her ability to speak, along with the limited control she currently has of her hands, will be lost. She announced that at the end of August she would go off of her respirator and enter hospice care. But first, she wanted to throw a farewell dance for herself. She wanted a “prom,” complete with decorations, fancy dresses, music and dancing.
A touching YouTube video sparked contributions to her GoFundMe campaign, and people from all over the world contributed gifts and more than $33,000 in cash to fund the event and her end-of-life care. On July 22, her prom night, more than 1,000 people packed into the Grand Meridian ballroom in Appleton to help fulfill Jerika’s wish of having a grand “last dance.”
Family, friends, police officers, firefighters, television crews, and total strangers showed up to show their respect, admiration and support for Jerika’s spunk, determination, and bravery. The boy band, New District, sent two large flower bouquets. They recorded a video message to Jerika that was played on the big screen, and they spoke to her in a video chat.
Richie Giese, a YouTube celebrity who goes by the name Social Repose, surprised Jerika by coming to the event in his distinctive costume, which features a black feather headdress and white face paint. He danced with Jerika and shared a private moment with her outside the hall.
It was a glorious evening!
Should a Minor Be Able to Make Her Own Decision About Hospice?
Just as I was experiencing a huge jolt of renewed faith in the goodness of humankind, I stumbled across another story about four disability rights groups attempting to intervene and prevent Jerika from going into hospice care.
Carrie Ann Lucas, the executive director of Disabled Parents Rights group, said, “A child doesn’t have the capacity to make those types of decisions.” She went on to say that in the eyes of the law, Jerika is still a child.
Lucas said the Not Dead Yet, NMD United, and Autistic Self Advocacy Network joined her in sending a letter to the Wisconsin Department of Children and Families asking for intervention.
When I read this article, my immediate response was anger. I wanted to protect Jerika and her mother from criticism and interference. I felt like telling these people and everyone in their organizations to butt out and mind their own business.
As I continued to research the story, I came across a deeply moving YouTube video message to Jerika from Jordan Schroeder, a 23-year-old man who is also living with spinal muscular atrophy
Jordan addressed Jerika directly and said, “. . .I know what it feels like to be in that dark place, to make decisions about ventilators, to feel like a worthless burden within my own family.” He went on to say how much he has hated God and himself at times, but he pleaded with her to not end her life. He said, “You are a woman of worth and value . . . You are loved and cherished in ways you cannot imagine, and regardless of what you feel, your story is not over. You are not a burden. You have so much left to do in this world, and your family needs you.”
Jordan’s compassionate, loving message brought me to tears, and it made me realize how incredibly difficult the decision to go into hospice can be, not only for individuals, but also for their families and people who care about them.
When Does the Pain of Life-Extending Treatment Outweigh the Joy of Living?
Elizabeth Cohen with CNN covered a heartbreaking story in November 2015 about Julianna Snow, a darling four-year-old girl who was suffering with a neuromuscular disease. Like Jerika, Juliana couldn’t walk or breathe on her own. She had gone through hundreds of rounds of nasal tracheal suctioning, which was a dreadfully uncomfortable procedure that involved sticking a tube up her nose, down her throat, and then suctioning her body’s natural secretions from her airway. Doctors said if she caught a cold or got another infection, she would most likely die.
Julianna’s parents, Michelle and Steve, were faced with two terrible choices. They could keep her in the hospital and continue treatment, or they could take her home and allow her to die in her pink princess bedroom. They gave Juliana the choice of going to heaven or going to the hospital. Juliana said, “Not the hospital.”
They took their precious little girl home to die. Their goal was for the end of Julianna’s life was for her to feel comfortable, to be happy, and to feel loved.
Where Do People Find the Strength to Go On?
Jordan Schroeder, the man who sent the compelling video to Jerika, said God gives him the strength to deal with his disease. Julianna’s parents found comfort in their belief in heaven. Steve said they believed that Julianna would be in a better place when her time came. Having faith that they will be able to join her someday, helped them cope with the grief of knowing their little girl was going to die.
Who’s Right?
Making the decision about how you want to manage the end of your life has to be one of the most difficult decisions any of us will ever make.
Because of advances in medicine and technology, we have found new treatments and methods of keeping people alive. So the choices that used to be made by nature, now frequently turn into complicated moral dilemmas, and instead of accepting death as a normal part of the life cycle, it is often considered the ultimate failure.
It depends on your perspective. We all know that nature can be cruel. But I think we have to also ask if extending the length of time we can keep a person breathing is worth the misery and intensity of pain a person has to suffer.
I have never been confined to a wheelchair, suffered with chronic, unrelenting pain, and been unable to perform even the most basic functions of caring for myself. I have never had a child with a terminal illness and had to watch him/her endure painful treatments, so I am in no place to judge whether anyone has the right answer for whether a child should be able to make her own decision about going into hospice.
Last year, I was angry with my friend Sally’s doctor, because although Sally had terminal brain cancer, the doctor didn’t refer Sally to hospice until ten days before her death. Trying to make sense of this, I interviewed Dawn Hemstreet, a former oncology nurse who works for Willamette Valley Hospice in Salem, Oregon. I asked her why she thought doctors are sometimes reluctant to refer patients to hospice, and she said, “Fear of death is a very real thing, and even though we all know we’re going to die, we’re often in denial about it. In this culture we don’t discuss death.”
She went on to say that during the years she worked as a nurse with cancer patients and oncologists, she learned to respect each person’s journey. She said, “Some people are willing to submit to any treatment and suffer through any side effects in order to extend their lives, even if it’s just for a few more months. Others will say, ‘I’m done with treatments. I want to enjoy the time I have left, and I want to spend it with family and friends rather than in doctors’ offices and hospitals.’”
We may each know what our choice would be for ourselves. We may think we know what we would do if we had a child that was living with a terminal illness, but we can’t know for sure unless we’re actually faced with that scenario.
Perhaps what we should do is accept that each person’s journey through the end of life is a path they must walk alone. Maybe the most generous and loving thing we can do is respect that choice, regardless of a person’s age, and do what we can to support them through their last days.
The Gift Jerika Gave the World
I’m sorry that Jerika’s Last Dance created controversy and stress for her and her family. But more than anything I hope she knows that she wasn’t the only one who benefitted from her prom. Jerika’s story opened people’s hearts and motivated them to feel love and compassion for a girl most of them had never met. She taught many of us to appreciate our own circumstances and good fortune, and she showed us how to celebrate and find joy in life. I hope when her time comes, that she can pass quickly and without pain, and I pray that when it’s over that her soul will rejoice in being free of a body that did not serve her well during her time on earth.