Jerika Bolen is a young girl with spinal muscular atrophy. It is a disease that destroys nerve cells that interact with voluntary muscle movement. She has a ventilator for breathing assistance much of the day and she is in a significant amount of pain trapped in a body that will not function as it was originally designed. What has captured the news for this story is that this 14 year old has decided that she wants to be moved into hospice and taken off of her ventilator which will end her life earlier than if she continued on in the present state. It is no small choice the young lady has taken and I grieve with her and her family that this cursed world would even need such a choice. I am not in her situation so I cannot speak to this being a good or bad choice. I would only say that as a general rule human life even when difficult should be something all of us would fight to preserve.
What I would speak to is the reaction and obligation of the community. Jerika wanted to have a party to celebrate what little time she has remaining. The grand idea of going out with a bang. YOLO. Those close to her raised money and planed an event to celebrate. Jerika has an amazing support team. Maybe a better support than many in her situation. There was even a local reporter there to cover the event and it was published in the USA today. The quotes and story in that article are just astonishing to me.
The reporter Jim Collar opens the article with a profound quote, a question from Jerika about all the people who have given her attention in this event. Her question is profound and it is a question that I would like explore.
“It’s awesome,” she said of Friday’s party. “It’s fun. It’s a lot of people, and they look up to me. It’s kind of scary because I don’t know what they’re looking up to me for.”
When you throw a party people will show up. It is a fact of life. Add free food and even more people will show up. But this party was even more than that it is a going away party if you will. People attending might have answered Jerika’s question on why they look up to her with something like she is inspirational, she is brave, she is amazing for such a young girl, and she is strong. Many people may be moved by her story and her choice, and all of those things may be true about this 14 year old who has lived confined by this for so many years. But why such attention now? How should we respond?
First the party is a wonderful thing. This money raised by the community and the show of support from the community is an awesome gesture. People want her to know that she is loved. Jesus in the lead up to his eventual crucifixion is given an extravagant gift by Mary. She washes his feet with an expensive perfume. Judas, who ultimately betrays Jesus, objected saying the money received for that perfume could have been spent on the poor.
6 But Jesus said, “Leave her alone. Why do you trouble her? She has done a beautiful thing to me. 7 For you always have the poor with you, and whenever you want, you can do good for them. But you will not always have me. 8 She has done what she could; she has anointed my body beforehand for burial. Mark 14:6-8 ESV
A celebration of a life in advance of their death is a perfectly wonderful way to honor them. When I read about the donations, and the community support of this young girl I know that it speaks about the mercy we all want for our own lives when we see someone in such pain. Interviewing people who came to the party the reporter captures an interesting quote from the father of a family that drove thousands of miles to this event to meet the young girl they do not know personally.
The long drive was worth it to see her smile, and “out there on the dance floor looking like she’s living life,” he said.
“Looking like she is living life” is an interesting phrase, because I think this might contain some unrecognized honesty about the situation. This dance floor is life and it is living but it is not real life. The dance floor is always only a temporary distraction and entertainment from real life lived out day to day. For those that live daily with pain, a loved one who cannot take care of themselves, or any number of ongoing permanent disabilities a recognition that when the party ends Jerika will still be in pain, she will still need support from nurses and loved ones to care for her every moment and need. That realization is also reported in the article as the grief of the moment overtakes Jerika’s mother.
But as midnight arrived and the lights went on and the banquet hall began to empty, Jen’s emotions began to crack. The reality of what’s to come began to settle in. Prom planning had helped take her mind off her daughter’s coming death. Now what?
Now what indeed. The party is over and a hospice awaits. Will it take days, weeks, or months for life to end? Is the pain so great that this is the only answer? Are her family and friends so few that there is no one to share the effort of daily care? Are the financial cost so great that it would be better, honorable, and responsible to choose such terms at this point in life? I do not see the answer being yes to any of these so why?
Worn out and a lack of hope. It comes to this. What is the point? Why should she continue in pain, why should she be a burden, and why should she be a drain on resources of the community? Going back to the words from Jesus to the disciples “you always have the poor with you” is a reality we must accept in this broken, sinful, and cursed world. When Jesus speaks about the poor he is not only talking about those who are in simple financial destitution. He is talking about people who have no hope and are worn out. He is talking about people who are powerless and hidden from society. I believe in many ways Jerika and those who are unable to fully participate in society and those cut out of many joys of life feel this kind of powerlessness in a real meaningful way. It breaks my heart. God has created us as relational beings both with other people and with himself. Jerika and others in her situation within our own communities need to know that they are loved. They need to know they are loved by providing attention and acts of service toward them and their caretakers. Through Jesus and his saving power everyone has hope. Everyone has purpose. God has unlimited powers of peace and love. Are we working in our own community to serve others with that love that has been so richly poured out?
25 For I will satisfy the weary soul, and every languishing soul I will replenish.” Jeremiah 31:25 ESV
To anyone that is struggling know that God loves you. Know that He has a plan for you in this life and in the perfect eternal life to come. Do not grow weary, do not give up hope. Trust him for each day. For those of us that know people who live life in pain each day reach out and be a friend. Show your smile, give encouragement, and serve them in love.
Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, 2 looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. 3 Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted. Hebrews 12:1-3 ESV