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by Autumn Smith
The American dream: that was what I was pursuing. I am the first in my family to go to college. Like many people my age, I was told that if you worked hard and went to school, you could live the American dream. Immediately following high school, I entered the work force. I worked various entry level jobs and lived with friends and family. About 6 years after graduating and many dead-end, minimum wage jobs later, I decided to give college a try.
After my first semester in college I realized that I really enjoyed going back to school. I continued to work and go to school, sometimes working 2-3 jobs. I had moved out of my parents house, and after living with my friend for a few months, I was able to purchase a place of my own. I had a car, a home, was employed and going to school. Things were going pretty well, or so I thought.
After working for my employer for nearly five years, the company I worked for got bought out and I was not receiving enough hours to make ends meet. I had to get another job. I was then fired from my first job for getting a second job. My second job paid less, but gave me more hours. Around this time I remember getting really sick. I had never been a person to get sick, usually nothing more than the seasonal cold or flu that goes around. I couldn't afford to be sick. As great as my life had been going, the one thing that was missing was health insurance-I had none.
I found out about a local health center that treated people who were uninsured or under insured, so I made an appointment. At my appointment I found out I had mono. I was to come back periodically over the next several weeks so that they could assess how my mono diagnosis was progressing and if I was getting better. A few months later I ended up contracting H1N1 and was very, very ill. My immune system had not fully recovered from the mono so this was a very dangerous illness for me to have. After months of being ill, doctor's notes and work restrictions, I still was not feeling much better. My body ached all the time. I was always tired and when I woke up, I never felt rested. I had no energy. It was extremely painful to walk. After multiple appointments to the clinic I was diagnosed with fibromyalgia and chronic fatigue syndrome. The worst part was that I had a diagnosis, but due to not having insurance, I had no access to the various treatments that were available to treat my condition. The clinic only covered me being seen by a doctor. Any tests, labs, treatments, or medicine I had to pay for on my own.
This was all new to me. I had never been sick like this. I read materials that my doctor gave to me about my condition. I was told that one of the best things I could do, aside from medication and other treatments, was to make sure I keep my joints moving and engage in low impact exercise. I did begin various treatments and medication along with the regular exercise that my job provided, but I was unable to keep up with regular treatments due to not having insurance or enough money to pay for it.
It was summer 2010, and I had recently enrolled in fall semester courses, still working. Then in late July, Enbridge Energy spilled over 1 million gallons of tar sand oil in a river that flows by my house. The fumes from the spill were overwhelming: the smell made me sick. My eyes were red, my nose was stuffy, I had headaches often. I was not immediately evacuated from my home as I should have been, so I ended up inhaling these fumes for a week before I was finally moved to a hotel away from the river. Upon returning home, the smell of crude oil was still in the air and in my home.
After the oil spill my health issues ended up going down hill fast. By October 2010, it was determined that I was not able to work anymore. I was too sick to complete the fall semester of college and had to withdraw from my classes. I was barely able to walk or stand and my immune system was totally shot. I caught every flu or cold bug that was going around.
In March 2011, things got even worse. I was sitting in my living room and I couldn't stand up. My legs were having severe spasms and I was frozen unable to move from the waist down. I called my mom, who took me to the ER where I was admitted to the hospital. I had a MRI and CT scan done. The doctors found that I had a severe herniated disc in my back that was crushing and pinching nerves to my legs, which is what made me not able to walk. After spending about a week in my local hospital, I was transferred to another hospital. I was evaluated by a neurosurgeon who admitted me to the hospital and scheduled me for surgery (discectomy) a few days later. Due to the seriousness of my condition, my surgery date kept getting bumped up.
I will never forget what the surgeon told me before I was wheeled in to surgery: "You have about a 50/50 chance of regaining feeling or mobility after this surgery, and even if it works, we cannot guarantee how much feeling you will regain or if it will be permanent." A few hours later I was waking up from surgery and I instantly felt much better. The surgeon explained that not only did I have a slipped disc in my back, but that I had a condition known as spinal stenosis. He explained that they could only take out part of the disc in my back because they had run into an issue during surgery: a bone spur in my back and a bunch of nerves that had tangled around the bone spur. The combination of the stenosis, bone spur, and ball of tangled nerves made it impossible to take out the whole disc. Upon awaking from surgery the pain in my back and legs for the most part had subsided. I was discharged from the hospital a few days later. I had to use a walker, but my prognosis looked optimistic.
The next couple months were pretty good. I seemed to be healing well and I was walking better than I had in a long time. Slowly but surely, the pain started to come back. Within 4 months I was back to where I was before surgery. The back and leg spasms were returning. My mobility was limited. I was in and out of the ER. There was chatter that I might have MS, another scary diagnosis that I was not wanting to face. January 2012 brought another 2 week hospitalization. This time I had completely lost my ability to walk, stand, or use my legs. I was bed-ridden and there was no surgery that could help me. I was told that I needed 24-hour care and an in-patient rehab facility in order to learn how to walk again. Unfortunately I was not able to get in to a rehab facility due to clerical errors, so I was sent home with a wheelchair and other home health equipment-- I had to figure things out myself.
I cannot explain how difficult, frustrating, and emotional my journey has been. I did what I had been taught my whole life: work hard and go to school and this is how I am repaid? Since I have been an adult I have always worked. Other than a few gaps in between jobs I have always been working, going to school, or both. Over the past 2 years since all of this has happened, my life has changed dramatically. Not only am I faced with my ongoing health issues, but I am also faced with $20,000+ in student loan debt. I am living off a fixed income, which does not allow me to pay off my loans. I face stigma and discrimination because I am not working. I have been called a bum, lazy and a burden on society. Because I do not have tubes coming out of me or am not lying in a hospital bed people assume I am not 'sick.' If I do go out in public to a meeting or event people judge me and assume since I am well enough to sit at a meeting, I can work. What people fail to realize is that I am only able to leave my house once in a while. Going to a meeting or community event is a special occasion for me and only happens when my health allows.
I also feel that my condition could have been prevented from getting as bad as it did had I had health care. I did not have any form of health care when I became ill. I was able to go to the clinic and see a doctor, but anything outside of the doctors office I had to pay out of pocket. I am still paying off some of the medical bills that I accrued during the time I was uninsured. I live off of $800.00 a month and I have no idea how I am ever going to pay back the debt I have. It's not a refusal to pay, but an inability. I guess this is the part of the 'American Dream' they forgot to tell me about.
I have learned a lot from being sick and becoming disabled. One of the biggest things I have learned is not to take all the little things for granted. The ability to walk. The ability to go out and socialize with friends- I have not been able to do this in a long time, not only because of my health issues, but because of my financial issues. Having to live on a fixed income is not fun at all. I am not able to go out and have coffee with my friends, and I can't even tell you the last time I went to the movies or was able to go shopping or spend a night out with friends. Some good has come from my situation- I have become a citizen journalist and blogger. When I am able, I volunteer my time with various community groups or political campaigns. I have had the ability to network with many great people online.
This is by no means where I thought my life would be at 28. This is not the American dream I had been working so hard to achieve. I try not to feel hopeless but it's tough trying to stay positive when faced with so many problems that I don't have answers for. I try not to blame myself. I also try to ignore the assumptions that people make about me. I still have goals and aspirations. I try not to think of my situation as a set-back, but rather a set-up, for what life has to offer me next.
:: photo credit, M.Kahyl Stevenson ::
Autumn Smith is a political activist from Michigan. Her activism has targeted key issues including, Mich. Enbridge Oil Spill, LGBT issues, HIV education, anti-bullying, reproductive rights, Occupy Movement & petitioning elected officials for recall.