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.)

Sep 30

Too Old To Fit In A Box

Democratic, Republican, Liberal, Conservative, Right Winged, Left Winged all these terms have been floating around the media as the presidential race continues to be a circus of he said she said drama. Donald Trump and Hillary Clinton are certainly entertaining, but ready to lead our country? That’s not really what I wanted to talk about. We all know neither may not be the best for the job, but somehow we got here. We as Americans somehow let this happen and now we will have to live with the outcome.

I hate how we are supposed to fit perfectly in one box or the other. I have views that are a little of all these things. I am human and humans are complicated. We take our upbringing and our life experiences and come up with our own moral compass on how we should live our lives. I side with one group more than the other as far as politics go, but am I totally one or the other? Who is?

As a Christian I have my set of beliefs that I live by. However, I am a realist and know we live in a fallen world. Thanks to good olé Adam and Eve screwing things up for the rest of us. Was that fruit really worth it? Living in America what I believe as a Christian is right for me, but may not be what others believe. We are lucky in America to be able to be free to believers of whatever religion or non-religion we choose. We should not have public leaders without a good moral compass. They should know right from wrong and try to live by these rules. We have come to know that politicians tend not to be the most trusted individuals. That’s part of the reason we have lack of trust of these people who we need to be able to trust the most.

In a perfect world we would not have political parties. We would have best man or women for the job. A regular Joe Shmoe would be able to run and actually have a chance to win. It would not be a matter of how much money the person can raise or who they are friends with. They would not need the parties powerful backing to be able to stay afloat. Of course these are all things for a perfect world, and that will have to wait for another time.

As a disabled American I do not see any candidates fighting for my future. I see one politician mocking the disabled and the other using them as poster children. They are not fighting for me to be able to have health insurance all while saving for my future. I don’t see them fighting for my ability to marry without being kicked off the system and losing my benefits. Why are they not fighting for us to be able to work without so many restrictions? No one is talking about the issues that affect me on a daily basis.

I cannot save money in order to get through my next financial crisis. I also cannot take a better job or take a raise without losing my much needed medical insurance. Many disabled Americans have it far worse. They are either stuck at home living with ageing parents or shipped off to some nursing or assisted living home. Their independence is never given to them, because it would cost too much to achieve. These are just a couple topics that the disabled community have to deal with on a daily basis. More programs and funding needs to be talked about for people in these situations. Not one candidate has brought up any of these topics. Why would they? We are the minority and we are not the most vocal of groups. Heck lots of us can’t even leave the house due to lack of resources.

Who you vote for or intend to vote for used to be a private event. Nowadays we can’t wait to share any type of feelings on social media. Our free speech is not free and it does come at a price. By posting, sharing, liking, and all the other things that go along with this social movement we are also losing valuable friendships, causing family riffs, and even putting our employment in jeopardy. It’s so easy to just type something at any moment or share something we agree with. We don’t realize by putting every little feeling out there we are upsetting people. Heated discussions take place every day online over police, race, politics, religion and all sorts of other topics. It is making the United States anything, but untied. Sometimes it’s good to step back and think about what you are posting. A lot of stories that circulate online are at the very least are only partial true. Look at all the so called celebrity death hoax that get circulated like Bon Jovi, Betty White and more recently Jaden Smith.

We are not going to make America great again. It was never great. Like everything it has had some good, bad, and lots of in between. The one thing we can do to make our country better is to be kind to others. To do our homework before we speak out about something. To let your emotions not speak for you. Take a break when upset before taking your frustration and anger to social media. I myself am guilty at times for letting my emotions and the ease of social media get me riled up. My last tip of advice is you’re human let yourself be a little complicated. It gives you character!

Jan 22

Lack Of Social Skills With The Disabled

The older I get, the more I have become aware of the lack of social skills people with long term disabilities possess. I contribute this to a number of topics that will be discussed later. In a world centered around social media and gaming, the general population is losing crucial social skills. This means the disabled population is even more at risk for losing these skills.

I understand people with severe disabilities, especially those born with a birth defect, tend to be living on a fixed income as adults. If you can’t work a full time job, chances are you’re going to struggle financially. Social Security Disability income is barely enough to pay the rent.

If you have a severe disability, chances also are you will need some kind of pricy adaptions to even ride in a vehicle. If they are lucky enough to be able to drive, funds are needed to be able to do so with the adaptions. Plus, there are additional expenses such as: the car payment, gas, insurance, and upkeep. These can cost a fortune for someone on that fixed income. Some government funding is available for those vehicle adaptions, but usually are only available for college students and those working. Of course with limited funds to go around these agencies want to help people drive or ride who plan on working full time. The point of these programs is to help with higher education and getting disabled people into the work force. Most of us with severe disabilities physically cannot work full time and if they do, they would lose their much needed medical insurance that the government provides.

Many disabled people need some type of skilled caregiver in order to leave their home. Caregivers and nurses are always at a shortage, especially for those that need ventilator care. Therefore, lots of disabled adults are homebound much of the time. These people can become lonely whose only contact of the day is with nurses, family, or on the telephone and computer.

Children with disabilities are often small and frail, making it easy for adults, especially parents to “baby” or coddle them. These children are seen as “special” or different by the adults around them. This also makes them seen as different through the eyes of their peers. Often Illness, hospitalizations, surgeries, and doctor’s appointments keep them out of many school days. They do not get to ride bikes, play sports, go camping, or even go on sleepovers. So they are generally already missing out on basic childhood events. At least having schools adapt for a disabled student lets the child be around their peers and gets them out of the house.

As a teenager, my medical needs kept me from living a “normal” lifestyle. I was trached, on oxygen, and vented at night. Either a nurse or my parents had to be with me at all times. At school I had a trained paraprofessional with me at all times. I grew up this way so it was normal for me. On weekend and in the summer I was often stuck home with a nurse as my mom returned to work. I think due to my attitude and the way I was raised (like everyone else), I had a very social life. I always had friends willing to come to my house to hangout.

I hear about a lot of disabled teens being bullied so badly that they resort to being home-schooled. I was not bullied often, in fact much of the time I was the bully. You know why people bully? Because they can. They find a person that seems weak, such as students who happen to be socially awkward due to lack of social skills. Someone can be physically weak, but without the mental weakness, these people will usually be left alone. Many parents of children who are bullied are overly involved in the situation. I was glad my parents pretty much let me work things out between my peers. It’s a good social skill to have in life. This proves my point mentioned earlier- If adults don’t see you as “special” often kids won’t either. Just because you have a physical weakness does not mean you need to be mentally weak too.

So now we move onto young adults. Young adults most commonly meet new friends or significant others from college, work, or anything that revolves around alcohol. If you can’t get to those places do to funding, transportation, lack of caregivers, and or the disability, you will have a hard time meeting people face to face.

Online is where I really have seen and heard about the disabled (especially men) who lack social skills which can lead to harassing, scaring, and making people mad. Some disabled men want to chat with ladies with the same type of disability. Fine right? It’s fine until they start talking right off the bat about their sex life or lack of it. Um… Creepy! Learning social skills when dealing with the opposite sex are some of the last social skills a person learns. Some say you will never figure out the opposite sex. That may be true, but you should at least know how to have a conversation without scaring the person you are talking to.

I assume disabled men, like all other men are strongly driven by sex. Many disabled people seem too eager to find a relationship and don’t know how to cope when they are rejected. This is also a skill learned over time from participating in the dating world. It’s a hard skill to acquire, nobody wants to be rejected. If you think about it, the disabled may have never participated in having a girlfriend, boyfriend, lover, or hookup. They want one of these things more than anything in the world. We all want companionship and to be thought of in a romantic way, but let’s face it- the general public usually does not think of disabled people in a romantic way.

Being homebound much of the time often means that the disabled turn to the internet to meet the opposite sex. It’s a much easier way to meet people with the same health concerns. These may turn into long distance relationships. Not a lot of people with severe health concerns are going to live in your area, much less someone who you really connect with. Once again, lack of funding and the disability itself makes travel difficult.

Then, there is the lack of sexual education for the disability. Often people with mobility and spinal damage, especially men, have a hard time performing sexually. Doctors and parents need to start as at least teenagers discussing options for a healthy and happy sex life as the disabled person ages. Like most adult men this population does not feel open to always discuss these things with their provider. Now that the disabled are living longer, these ideas need to be implicated.

So all the fore mentioned topics, I believe are part of the problem. Parents teachers, and doctors, need to start at a young age to not make a child who happens to have a disability “special”. Everyone’s child is special, not just yours. Most importantly, I think the term “I can’t” needs to be removed from every household. Find a way you can or count your blessings on what you can do. Also, push your child to get involved in outside of school activities whenever possible. The more they are around their peers and treated as equals, the better. Starting this process early is best.

If you don’t do these things, I feel your child is more likely to grow up to be depressed, lonely, feel sorry for themselves, and unmotivated. It’s hard enough to live with a disability, especially if you have financial troubles. Do your child, students and patients a favor empower them. It will go a long way in their happiness and those around them!

Aug 18

Online School vs Public School

Online School vs Public School

More and more students are pulling out of regular high school and enrolling into online school. Parents and students turn to online school for a variety of reasons. Some of these reasons include: more time for other things, better focus, does not fit in, or poor academic performance.

I have taken a few full or partially online courses. I enjoy the social interaction of a regular classroom setting. When I was a child and too sick to go to school a tutor was sent to my home or my hospital room. Academically I did better with a one-on-one tutor, but I hated missing out on a regular school day.

I worry about teenagers and other students that forgo traditional school for online school. Part of school is learning social skills as awkward or as painful as that can be. You have to interact with people in the workforce and everyday life as an adult and you learn those skills in your youth.29-1

My mom had to fight for me to be able to attend public school. She battled for me like a warrior. The reason I am so “normal” today is because of the skills I learned in school. She had to fight for me to be able to go out for recess or go on field trips. Throughout history parents and students had to fight to be able to be included in traditional school. We need to remember it is a privilege to be able to go to school.

Growing up we meet a lot of our friends in school. Some of my best friends I met in grade school, middle school, and high school. Kids who do online school may miss out on those kinds of friendships. In a social media, video game world, children are already losing the face to face contact that helps them learn social skills.

For those that feel awkward or uncomfortable by going to traditional school, remember life is not always comfortable. Ride out the bad, because it will pass. Every teenager feels awkward and some hide it better than others.

I’m the aunt of two teenagers, one of whom is in full time online high school and the other is part-time. I see my worries play out first hand. Both lack real friendships with kids their age.

Having choices about traditional, home schooling, online, or specialty programs is a great way to be able to have options. I just want you to be aware that people like myself had to pave the way for the right to be educated in a traditional school setting. It was very hurtful at times to not be included with my peers.

Public schools need to address the issues that are causing students to turn to online school. Schools need to adapt to today’s kids, their interests, and shorter attention spans. They need to get to the point and make learning fun. Today’s students are very much a generation that wants things instantly. Kids today have different kind of demands and teachers need to adapt to the technical world. It makes me thankful that I grew up in the time I did. No social media, YouTube, cell phones, or online video games to distract me from the real world.

Apr 14

Fitting In

I am a shy person around people I do not know. I have my small group of friends that I allow into my private life. Growing up I had to allow nurses, social workers, and others into my home. Being guarded about my personal life has also kept me from always fitting in.

We all want to fit in with our peer group. As children, teens, and adults we are always looking for others whom we share similarities with. Wanting to be a part of something bigger than ourselves. We are social beings that thrive on being together. As a child growing up with major life and death health problems, I lived in two different worlds. My mom pushed me to be as “normal” as possible, while society pushed the opposite.

I grew up not knowing others with Spina Bifida, Scoliosis, or dwarfism. I did have plenty of friends from school and in the neighborhood. I could relate to other kids when it came to sports, television, and toys. In the end I was still a kid, with the usual childhood needs and desires.

As my peers and I grew older they became more and more independent. Our worlds began to really separate for the first time. I was on oxygen during the day and a ventilator at night. I had to have nurses, aides, or my mother with me at all times. This went on until I was an adult, and I was able to learn how to take care of some of my needs on my own. It was difficult at times, but I was able to keep a lot of my friends from my childhood and teen years.

When I hit my mid-twenties I went to my first Little People of America National Conference held in Milwaukee, WI. LPA Nationals is a weeklong event with over 2,000 little people gathering in one place. For years I didn’t feel I would fit into this community, because I didn’t have any of the 200 plus types of dwarfism the LPA talked about. I made some friends and learned what little people can achieve. I went to several conferences and met some great people. I never felt 100 percent comfortable in these week long environments. I was the only one with Spina Bifida to attend such events.

I attended a Spina Bifida National Conference a few years ago. Their conference is more medical than social. I walk unassisted and have full feeling in my body. I do not have the typical damage Spina Bifida causes, but my Spina Bifida caused my Scoliosis. I did not feel I fit into his community of people either.

My peers with Scoliosis could never relate to the severity of my case. They only read about how Scoliosis can become so severe it effects the lungs. I am one of very few in the world who is living with a worst case scenario.

As the years have passed I have been blessed to become independent. I drive, own a home, and work part time. I have a social life and stay busy. Being independent has caused me to pull away from my disabled peers. I live a life today more like my able bodied friends.

I went to college, but never felt a bond with many of the other students. I was much older and had a hard time relating to the life of a college kid. I seemed to fit into the bar group well, but that was just because everyone was intoxicated. Now I fit more into the Christian group. Although, without a husband or kids this too can separate me from my fellow Christians.

I’m not one to follow the in crowd in fact I thrive at being a little different. As society tries to wrap us into categories and groups and put a bow on us. I say why?

It’s easy to get along with people you are similar to. It’s important to be part of a group and feel needed and wanted. It is also ok, not to fit neatly into one category. So be proud of being unique and original. Humans are complex beings; let us celebrate our similarities as well as our differences.

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