Think about all your fears. You will notice that they all have to do with something big, permanent/ final and most of the time something that affects many people. I have been in pain for almost 2 years now. In that time I have never had even 3 minutes of a break from my pain. On an extremely good day the pain is about 3 out of 10 but most of the time it’s above 5. I have permanent nerve damage in my spine and I have a syrinx (cyst) which may or may not shrink with time. All this was caused by a condition called Anorld Chiari Malformation which in lay man’s terms means my skull is too small for my brain. I was told that there is a good chance that I will be in pain until I die. Medication gives me many side effects and it still doesn’t take away my pain completely. I know that what I suffer doesn’t even come close to what Jerika was going through and yet there are times when I think that I’m better off dead because the pain is too much. I can still go out and do most of the things I want to do but I still wish my life was different. Pain is never a good companion and some people can take it, hooray for them but for many it gets too much and if there no foreseeable end to it, they’d rather not live.
About fears, death is at the top of almost everyone’s list.There is no reset button, no do-overs, once it’s done it’s done. People are devastated. They lose a friend, a child, a community member, a sibling, role model or whatever the case might be. Your death is not just your own, it’s the death of something in other people’s hearts. I have been following the case of Jerika Bolen, a 14 year old American girl who suffered from a condition called spinal muscular atrophy, a condition that caused her severe disability and debilitating non-stop pain. She made headlines this year when she decided to stop taking medication that was keeping her alive because she had had enough suffering and her quality of life was not what she wanted. Some people criticised her decision and criticised her mom for supporting it. Jerika did not want to die, she wanted to be free of pain and for 14 years she fought the disease and underwent over 35 surgeries!!! That is not someone who wants to die, but after exhausting all the other options, death seemed to be her only ticket to being free.
A lot of people seemed to understand her and many attended a prom that she wanted as her last dance before she stopped medication. But not everyone supported this. The disabled community was enraged because they felt that her case sent a wrong message to other disabled youth and able-bodied people at large. Some have said it communicates to the world that lives of disabled people have no value, that if the going gets tough for disabled people it’s better to die than fight to live. In the forefront of this debate were other people with spinal muscular atrophy such as Jordan Schroeter. He made a video with a message for Jerika, pleading with her not to end her life. In his video he says, “You are a woman of value”. This shows me that many people who are against it don’t really understand that it’s not that she wanted to end it because she felt she had no value or that she didn’t love life. By just looking at her pictures she seems to be a young lady who loved life, fashion and had a lot of love around her. She loved life and while other people think living means “staying alive/ in a state of continuing to breathe”, to Jerika, her mom and to me, living means more than just existing, breathing there has to be more to it or it’s not a life at all. Her issue was not about being disabled, it was about being in intolerable amounts of pain ALL THE TIME. This is not a story about disability, spinal muscular atrophy or about teenagers, this is a story about Jerika. That means just because you have the same condition doesn’t mean you can speak for her. She had her own experiences with it, you have yours. One disease affects people differently. I am in support groups and I haven’t yet met anyone who has the same symptoms as mine, therefore no one with Chiari Malformation can really know exactly how I feel.
Euthanasia is not a group decision
Disabled communities who condemned Jerika and her mom for this decision need to understand that as much as you have a responsibility to the community you are born into, you are ultimately an individual and you have a responsibility to yourself. Whatever you do in this life will always send a message to the world anyway, it’s all just a matter of interpretation. I interpreted Jerika’s decision as one of strength whereas someone else saw it as immaturity because she was only 14, or they saw it as a weakness because she could not continue to hold on. So that just goes to show that if you live your life wanting to set examples for other people, you will never get it right. Someone will always take your actions the wrong way. It was not Jerika’s responsibility to make sure that other people with disabilities or illnesses are kept motivated. As an individual you have to think for yourself, plan life for yourself and be the hero of your own life. If someone else blindly imitates you then they have a problem. Unless they are your own children you really can’t live life for the world at large to be happy. Not everyone in pain should stop taking their medication because Jerika did. Do you. Fight as much you can for as long as you can and kudos to you if you can go on and on like that but don’t impose your belief that continuing to breathe for the sake of it is for everyone. Able-bodied people should never speak on behalf of disabled people because disability does not mean inability to make one’s decision. In the same vein, disabled people should not speak for each other, you have your voice, other disabled people have theirs.
Many people are also suggesting that Jen Bolen, her mom may have influenced her to make the decision. C’mooon, if Jen wanted this child dead we would never have known about her. She took care of her for 14 years. She could have “forgotten” to give her her meds when she was still 3 or 5 or 8 or whatever. Instead she loved her, gave her an education, hired nurses to help her, helped her to be normal crazy teenager with crazy hair and makeup, bought her a dog for companionship… and millions of other things that even she may not remember. It’s disrespectful to even think that she would want this girl dead let alone voice it publicly for her to read. Stay in your lane and leave this woman to grieve in peace. The void that Jerika left doesn’t need to be filled with guilt caused by people who didn’t know Jerika. Others claim that it would not be in line with God’s wishes. I’m a Christian and I love God but Jerika did not take poison to kill herself, she simply stopped taking artificial ways of staying alive. If God wanted to keep her alive, He would have kept her alive even after the ventilators were taken away.
I think we should all live our lives to the fullest. We should put more effort into the quality of it rather than longevity. Let’s fight like hell to stay alive and to stay happy. Life is meant to be enjoyed. It is only after we have lived to the fullest of our capacity and we have exhausted all our sources of happiness that we should think of changing our lives. If it no longer serves us the purpose that we wanted it to serve maybe changing means ending it. I watched the movie Me Before You and understood why one would opt to end their life. Trying to keep someone alive who doesn’t want to live is selfish. You are thinking of your loss rather than their peace.
Rest in peace Jerika. There is no more pain and suffering. You did great by holding on to life for as long as you did and by being a blessing to your mom and family and friends. They will miss you but as you said, they will eventually be ok. You will never be dead to them, you left them enough memories for them to forever keep you alive in their hearts and dreams.
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