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.

Jan 15

NO EXCUSES

Exercise is important at every stage of life. For many people with disabilities there is a lack of education and encouragement to exercise. Outside of physical therapy a large amount of the disabled never workout. Without physical exercise the disabled person becomes even weaker and with more health problems. Due to mobility issues, and lack of exercise causes muscles to atrophy with in turn can lead to obesity. Mobility issues can lead to serious medical conditions such as bed sores and ulcers to the skin caused by lack of movement or feeling in the limbs. Added weight gain to the body is very stressful on an already weakened body. Weight gain causes the body to work harder to do everyday tasks causing mobility and independence even harder to maintain.

The disabled are at a significantly higher risk to develop arthritis and chronic pain as they age. Pain can keep people from feeling up to moving around, but in the long run working out can help relieve pain by releasing hormones and loosening muscles.

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I have lived with Spina Bifida and severe scoliosis since birth. It has caused restrictive lung disease. In order to live I require nighttime ventilation and a tracheostomy. My scoliosis is well over 100 degrees and in addition I also have neuropathy pain in my feet. I take medication to control the pain from nerve damage, but have found exercise is the best medicine. I try to walk and sprint in the warm small pool at the local YMCA. This helps maintain my 25% lung function. It is great cardio without stress on the joints. I have an open tracheostomy tube that runs straight to my lungs, and the warm 2”8’ pool is fairly safe for not getting water into the tube. Most public pools now have pool lifts for those with limited mobility to enter the water.

I also enjoy doing bodyflow once or twice a week at the gym. It’s a mixture of Yoga, Pilates, and Tai Chi. I started doing bodyflow several years ago. It helps me stay flexible and fights off anxiety and stress.

At my after school job I get back to my childhood roots of playing kickball, dodgeball, basketball, and my favorite, football. I always loved sports both watching and playing. During the summer I play on a women’s softball team for my church.

My gym also offers classes called ATM: awareness through movement. I’m not sure how to describe it so I will just post what’s onIMG_6757[1] (2) my gyms website. ANU Studio for well – being.
The Feldenkrais Method and the Anat Baniel Method are innovative movement systems that improve the way we move through life. Through gentle yet powerful movements you will increase range of motion and flexibility, alleviate pain and discomfort by learning how you move, develop a “whole body” awareness, play sports more powerfully, heal faster from injuries and make new neuro pathways in your brain. (Source: ANU Studio for WellBeing)

Gyms can be expensive and the good news is the YMCA can give people discounts based on your income. Some government programs will even pay or reimburse gym memberships. Of course you don’t need a gym to get movement going. I count cleaning my home and grocery shopping also as a workout.

Your disability or mobility may be different from mine. The only way you’re going to know what you can and can’t do is by trying. Do not be ashamed to modify your workout for your abilities. Disabled or able-bodied, in a wheelchair or not everyone can do a variety of different exercises. Even getting a little movement is better than none.

I also use a hot tub whenever possible and even spoil myself with an occasional massage. This helps loosen up painful muscles and gets the circulation going. In addition it helps with pain control. All these things help give me a better more active life. At one time I was in so much pain I wanted the doctors to cut my legs off. Thanks to medication and exercise I was able to get out of bed and avoid addictive pain medications. You have to put yourself first in order to live an independent and healthy life.

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Nov 27

Disabled and Inspirational

Disabled people are seen in the community more and more as they gain their independence. They may be seen shopping, working, or even at the local gym. (Yes, disabled people are capable of working out in some capacity) Some may need assistance and some may not. They are doing mundane day to day tas23-1ks that non – disabled people also do. Yet, when they are seen living their lives to the best of their ability the term “inspirational” is often thrown around.

It may be difficult for the disabled to do certain things. It may take them more effort or time to live as “normal” as possible. How is this inspirational? Its life and no one said it would be an easy one.

So why does society want to quickly coin them as inspirations? Why not the very pregnant lady, who worked all day and then goes grocery shopping? Or the old man that takes his dog for a walk every day? Or the teenager that volunteers in their community?

So why are they built up as inspirations when they did not choose to be disabled? They didn’t ask for this life, but it is their job to make the best of it. Some with disabilities are offended to be called inspirational some are not. The world is a tough place and inspiration is needed where ever we can get it. If others happen to feel inspired by the way the disabled live everyday life; so be it. I feel it is their job here on earth to educate and to make a positive impact on people.

Not all disabled want to inspire, impress or draw any extra attention that their disability already does. Some try to embrace it and are role models. All people, even the disabled may have different views on the subject. Good advice is that by calling the disabled inspirational without knowing them personally, is judging. The disabled population that is offended by the term inspirational may need to relax. The disabled have plenty of battles to overcome and I think being called inspirational should be one of the last.

Jun 30

First Time Job

Finding work is hard enough these days, and even more so for new college graduates. I found this out a few ago when I graduated with a Bachelors in Radio/TV/film.

I had lots of volunteer experience and even completed an internship with a local radio station. Due to my disability and past poor health I never had a real job. I did work during my senior year of high school, and I was in a co-op program and worked a few months in a local Kindergarten. I went to work with my paraprofessional that was paid by the school system. That job was eliminated when the school system ran out of money.

During and after college I worked closely with the Division of Vocational Rehabilitation or DVR. I also had a job coach provided by the DVR. The DVR helped pay for my college education and my van I drive.

Although I had a lot of support from them, I only received a handful of interviews in two and a half years. I know part of the lack of interest from employers is due to the huge number of people looking for employment.

Another big problem I had, and lots of recent college graduates have is not having work experience and employers will not give you a chance to build any.

The third reason I had trouble finding a job is that I was only looking for part – time employment. Lots of full time jobs are out there, but in order to keep my much needed SSID benefits I could only work a certain amount of hours and earn a certain amount of pay.

I live in a smaller town and have no interest in moving. This also caused less opportunities for employment.

Lastly I believe I was not hired over this much time, was due to my disability. With being the size of a child and having back and lung problems I am sure employers didn’t want to take the risk hiring someone whom may not be able to pull their own weight.

I finally received an interview and a job with the YMCA. Soon I had thirty intimidating faces of children in grades K-5th staring at me. I was hired as a lead teacher in an after school program. I would be working about three hours a day five days a week on average.

Soon the children had asked all their questions about my disability and they became accustomed to me, like they did with each other.

It’s a very stressful job, but also very rewarding. You never know what to expect and most days your busy every moment your there. With staff and student changes it was a challenge adapting at times. The huge age gap in children makes it hard to come up with things they all would be interested in. Also some of our students had either special needs or rough backgrounds.

Although the pay is not the best, at least I get my YMCA membership for free.

For the first time I feel like my community wants me. I know I’m a role model for other disabled people. This job also gives me an opportunity to educate children on how to treat disabled people. It also gets me out of the house every day. My job gives me a place in society.

Finally when people meet me and ask what I do for a living, I have a real answer. I do pay a price for working my part time job. Some days I go straight to bed when I get home from work as I am so tired. Other days I feel like I’m losing my sanity with so many children needing my attention all at once. I also pay a financial price for working. I now have to pay $150 a month towards my insurance when it was free before.

This really hurts when I make $400 max a month from working. I followed all the SSID and Ticket work slideshow 194To Work rules and I still get penalized. I feel I’m doing the right thing by working as much as I can and the government punishes me for working. They have programs in place to educate and find disabled people jobs, but other programs keep us from doing just that. All these things are the reason the physically disabled population tend not to work. With our medical problems and a complicated system we have to deal with, the government does not persuade us enough to make work worth the enormous effort it takes.

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2013 A Year in Review

2013 A Year in Review

I know I’m a little late writing this, but better now than never. 2013 was an emotional roller coaster for me. It’s painful to just put pen to paper and write about it. My grandma was diagnosed with stomach cancer and deteriorated quickly. She died five months later.

In February of last year I traveled to St. Louis to see one of the top Scoliosis surgeons in the country. After a day of X –rays and MRI’s we finally ended things by actually seeing the doctor. He determined no surgery should be done. In fact he wanted to use me as an example to other surgeons when a case is too complex to operate on. It would only make my condition worse to do so. I have heard this before from doctors over the years. It was not a surprise and I tried not to get my hopes up. After watching him work his magic on so many patients with complex scoliosis, including two friends I thought he may be the one to help me. To make matters worse we got stranded in our hotel the next day by another snow storm. We would have to spend an extra day in St. Louis, and it was boring sitting in a hotel room.

My grandma was three hours away from me in Rockford. The one good thing that came out of the St. Louis trip was that I got to see her twice as it was on the way to St. Louis. When we stopped on the way there she was doing really well. Three days later when we stopped on the way home she was doing poor. I was able to see her that one last time during one of her good days. I only saw her one more time after that and it was right before she died a few weeks later. I was so stressed during this time I was seeing a therapist and even developed TMJ.

On a brighter side I took a family trip to the Wilderness in Wisconsin Dells with my brother’s family. It was an amazing time. It always is when we go. Another snow storm hit, but we had nowhere to go, but to the indoor waterpark.

I was able to speak to all the kindergarteners at my nephew’s school. I also was able to speak to all the 9th and 10th graders at Menasha High School. The high school I attended.

Things finally thawed out and spring came. I was looking forward to softball season. The night of April 21st (my brother’s birthday) I slipped and fell in my doorway carrying my dog inside. I felt that pain years ago when I broke my foot. The next morning I went to the ER. They did an X-ray and found nothing. My foot continued to be very painful and even my toes turned purple from the injury. I took over the counter painkillers like candy, and continued on with life. The pain continued and finally I was sent to a foot doctor. He did another X-ray and found a very bad fracture. Surgery was performed a few days later. A month in a cast and six weeks in a boot really humbled me. I was used to having my mobility.

The summer started out rocky with the foot surgery. I could not go swimming or workout like I am use to. I did take an amazing trip with my teenage nephew to Washington D.C. for the Little People of America National Conference. We were there for a week and we were very busy seeing the sites. As the summer continued I was able to enjoy swimming, the outdoor movie, Bay Beach, and other fun adventures with my nieces and nephews. Although a three week cold at the end of summer kept me grounded at home once again. DC 067

Fall was filled with appointments, guitar lessons, and bible study. Around this time my grandpa had a stroke and died. It was a very busy time. On the upside I finally got hired somewhere and started work in early November. It’s not anything I went to school for, but working with kids is rewarding.

So my life is completely different working part – time, five days a week. It’s still a balancing act that I am trying to figure out.
So my year was filled with a lot of downs and a few ups and a whole lot of in between.

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