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Jan 29

Pain In The Brain

Jerika Bolen a fourteen-year-old girl from the small town of Appleton, Wisconsin made national headlines this past summer. She chose to throw herself a prom-like dance and then end her life at the end of summer. The local media and national media both picked up the story. Lots of missing or misleading information was in the press. Now this young lady chose to end her life. The city came together with over 1,000 people attending her last dance. Many donated their time and facilities. Thousands of dollars were raised online for her. Jerika and her family said her pain from Spinal Muscular Atrophy was the reason for wanting to end her life. As someone that lives in chronic pain myself from spine issues and uses a ventilator part-time, I am disgusted with both the medical care she seemed to have received and how to community embraced her choice.

I have several concerns. First, being if she was a teenage girl who was not disabled, but in chronic pain, we would call it a suicide and be protesting her death. Just because she is disabled it’s like saying her life is not worth as much as a regular person.

My other concern is how the community basically celebrated her death. Death and life is something to celebrate, but let’s get behind the disabled community just trying to live their life. Many disabled people are isolated in their homes or worse, a facility. They can’t afford basic things that would make them much more independent and happy. Why not donate your time and money to helping their cause? They are going ahead and making the best of things. However, no one seems to give them and their needs a second thought.

The press made it sound like being on a ventilator is a horrible thing. I have been a vent user part – time for over 30 years. It is not as bad as you think. It’s the only way I feel relaxed. Jerika was a part time vent user and had not yet had a tracheostomy. A tracheostomy is a scary thing when described, but again I lived with one for over 30 years and it’s not too bad. In fact, it makes life easier in a lot of ways. The press made it sound like she would die right away without the ventilator. Like she required it to breath every moment. Being a part-time vent user, that was not the case. She needed it for her weak muscles the helped control her lungs, not because she had apnea.

I didn’t know her personally. I tried to reach out to her and her mother after the media started plastering her face everywhere. I never heard back. I would have loved to show her things can get better. Others with disabilities and even the same disease took to social media and reached out to the family showing they have good life’s despite their limitation. Jerika’s mother flat out said over and over they are not her and do not get what Jerika was dealing with. Yes, they are not her, but I think they have a better understanding than any doctor or medical expert.

It’s all about finding the right doctors and treatment. The problem is finding what works for your pain control and that takes effort, time, and sometimes money. When I was in pain everyday so badly, I wanted the doctors to cut my feet off. I was just focused on the pain, making the situation worse. I also did not have much going on in my life, leaving me with lots of time to think about the pain. From the articles in the paper, I kind of got the same impression she had little to live for.

Jerika was home schooled and most likely becoming more and more isolated. As a teenager, I literally lived for my social life and going to school. It was hard being different especially as a teenager. When I graduated high school, and was sitting at home while my pain became worse. I was spending my time feeling sorry for myself. My friends were off living normal young adult lifestyles, work, college, and partying and I was stuck at home due to my medical problems and lack of independence.

Now I am all for human euthanasia for people that are end stage, but Jerika was not end stage. She was also a minor and lived in a state that does not support human euthanasia. Also, if you don’t want artificial means to keep yourself alive that’s up to you. The thing is she was a minor, and legally can’t make that choice. Also, I believe that kind of choice should be made before your put on any machines or feeding tubes. I don’t believe in using resources and money to keep people alive who will not have any quality of life. I didn’t feel this was the case with Jerika. She had her mind and that’s a lot more than a lot of people we keep alive with artificial means.

The other thing is you should never end your life due to pain. I believe Jerika and people in her situation should have some safe guards in place. A complete a full mental health screening might have been helpful when this topic of ending her life came up. A team of doctors, spiritual advisors, mental health professionals, pain specialist should have worked together to make sure this was in her best interest. Also, to make sure this was purely her wishes and not pressure she was feeling from others. It is a good idea for anyone with major health issues, especially young people to meet with others living with the disease.

We have so many things that can help pain. Like I said it takes effort, time, and sometimes money to find the right pain control. Clinics and hospitals are popping up all over the country to help people with chronic pain. Of course, the cheapest and easiest thing is to prescribe painkillers. Doctors are just realizing how out of hand addiction has become due to their pen.

I found a great drug that helps control the pain that is a nerve blocker. I strongly believe all things even alternative things should be tried. I know acupuncture and massages are not usually covered by insurance, but they can sometimes help. I would recommend talk therapy if the pain is taking ahold of your life. Avoid surgeries unless you get at least second or third option. Surgeries, especially spine ones can often cause more pain than help. Some surgeons just like to cut, and are not honest about the results. I have seen many spine surgeons that say we do not operate to help pain. Jerika had at least four spine surgeries. It makes me think her and her family thought this would greatly improve her pain.

I have seen it with Grease actor Jeff Conaway having back surgery after surgery for pain. He became so addicted to the meds and surgery he ultimately died from the care he received. Certain narcotics for pain cause more pain than help over time. Something most people don’t know when starting taking these medications.

Jerika in the media said she didn’t take pain meds unless things got bad. Most doctors will tell you first thing is to always stay ahead of the pain. Take the meds before pain get bad. Also, her disease is not known to cause great pain. Perhaps, that was something to consider as well.

Besides my nerve blocking med, the other thing that helps keep the pain at bay is staying active. I often don’t have time to think about the pain. Also, I like to walk the pool, do yoga, hot tub, and participate in Feldenkrais. I own a tens unit and sometimes use that to help with bad pain. I have also heard meditation is a good way to help pain.

I have no doubt Jerika was in great pain, but the question is why? I also know she had a terrible disease that was exhausting for her and her single parent mother. It would get worse, but over many years. I think her death and the way it came about is something we need to consider and learn from. More and more people are in chronic pain and more people are living longer with terrible diseases. How can we make them live longer with better quality of life? I certainly don’t blame this young girl for the choice her and her mother made. I blame the system for failing her. I blame the media for misleading us. I blame social services, the medical system, and the education system. All around lack of knowledge failed to be passed on to her, her family, and the public.

(Jerika Bolen died September 22, 2016 in a Hospice facility in Sheboygan Falls. She went off her ventilator and received Morphine for about a month. She was 14 years old.)

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