Hello world, friends, and family!
My name is Emily Barker and I'm making this gofundme to help tackle the financial burden associated with living in a wheelchair, having multiple surgeries, and having a chronic nerve pain disease. My accident happened two years ago, in this span of time I've been supported phenomenally with the very limited and exhausted help of my family. I am hoping that with your help I will continue to make use of the best physical rehabilitation center in the US in hopes of walking again one day, to be healthy enough to complete the education I started at SAIC before my accident, and to cover some of the medical costs incurred from a recent surgical attempt to alleviate the neuropathy I'm living with. CRPS is a very severe chronic pain disease that for me was caused by crushed and severed nerves in my pelvic area, legs and feet. Due to this disease I had to have a surgery that I now need help to cover the balance of, along with therapy expenses, the cost of car insurance, car repairs so I can get to school and physical therapy, and most importantly replace the heavy broken 30lb wheelchair I've had to use to get around in for the past two years.
I had just finished up my sophomore year at the School of the Art Institute of Chicago and was accepted early into the Advanced Painting Program. I was excited and planning on working all summer as a nanny to save up for school. After work one evening, I rode my bike over to meet a few of my best friends for what was a small summer rooftop get together. It was absolutely pitch black as I walked over to them and stepped on top of a hidden excavated fire escape that was converted into a poorly constructed skylight. I fell three stories down into the basement of the building. I broke a lot of things in a lot of places, but most significantly, the impact of the fall disintegrated the largest vertebrae in my spine without severing my spinal cord. This means that even though I could not move anything from the waist down, I still had feeling in my legs. I had what doctors described as a 1% chance of ever walking again.
At 19, I became an incomplete paraplegic and started an intense and insanely expensive regimen of taking up to 30 pills a day to help try to subdue chronic nerve pain and allodynia in my legs and feet because I still had sensation. In the initial months of my recovery, I could not wear socks or have anything or anyone including soft fabrics, touch my feet because of the excruciating burning feeling. Regaining the ability to feel my legs and feet gave me the hope of recovery, but with it came the most indescribably excruciating pain that's been relentless since my accident. It is a type of pain that's very difficult to describe because it's a completely different lingering sensation than anything you can imagine. It's a pain that no prescription, pain specialist or physical therapist has been able to relieve. Even at its best, the feeling is barely tolerable. At its worst, I can hardly move for spans of up to 48 hours. It's a poorly understood disease and nerve damage is incurable using medication and surgery. My intensive, expensive, multiple-medication regimen that only remotely eases the pain also makes me extremely drowsy, depressed, lethargic, and cloudy. This is disabling me even more and I'm trying to find the means to get alternative therapies would help with the nerve damage and pain the most. Due to the high amount of medication I take daily, my body is becoming less and less responsive to the medication's effects.
Three weeks ago, to relieve the agonizing effects of my rare nerve condition (foot to hip neuropathy), I underwent two invasive, dangerous, and painful surgeries. The surgeries were to have a Spinal Cord Stimulator inserted into my spinal column. The doctors told me it was my only option left in blocking the rogue nerve pain signals being sent to my brain. After the two years of trying everything to conquer this condition, it was a last resort and my only hopes of returning to a more productive, financially stable, less painful, and a truly happier, independent life. After doctors cut into my spine and drilled several dime sized holes into my T9 vertebrae, they were only able to activate my abdomen with the electrodes. The surgery did not work. My nerve pain attacks occur from below my waist and I still suffer from this condition just as much as I did pre-operation. It still baffles me as to how a surgery that was supposed to help me get better ended up hurting me more in the end and costing $67,000 - of which insurance only covers 80%.
Though one would think living in a wheelchair would be crippling enough, the pain I suffer through daily is even more debilitating. To top off being in my current condition, my family gets left with the responsibility of paying the enormous costs. They have their own expenses and have continued to go into debt to support me medically and through college with what isn't covered by loans so that I can become financially independent. As I had to pay student loans back almost immediately after my accident when i wasnt attending. Not only did I need to graduate from college, I needed better intensive physical therapy when my muscles started coming back in my legs to the point where I could stand and walk with a lot of support. The Rehabilitation Institute of Chicago just so happened to be the best in the country down the street from SAIC.
With the knowledge that I would be living with my pain condition indefinitely, instead of giving up hope of living a normal life I decided to move back to Chicago a year after my accident to finish school and participate in better physical therapy. With the help of a friend, we drove 800 miles away from my family to finish what I started and go to RIC. I ended up getting a grant for a car and living in my own apartment. A year later, I can now hardly afford accessible living, I've missed payments on car insurance due to school and medical expenses, and my car needs a new alternator. Living independently is still very hard for me both physically and financially. I'm so grateful that I can get by with the incredible support I receive from my family and my mind blowing friends in Chicago who have helped me so much even to the extent of taking care of me after spinal cord surgery.
In the beginning, getting this surgery gave me hope of being well enough to attend all of my classes this year, get a job because living on disability, food stamps because Medicaid still leaves out car insurance, and other medical costs like a lighter wheelchair. As my back is still healing and I have to lift my 30lb wheelchair frame over my head to get it into the car, which has been extremely painful. I was also hoping to receive alternative therapies like acupuncture, school, and most importantly becoming engaged in a more intensive physical therapy program that would drastically re-build my leg muscles. Improving my chances of walking again on my own. Though surgery set me back, it has not made me less hopeful. I can walk in a walker with leg braces now! With high spirits I ask of your help so I can one day be out of this chair and back on my feet. Looking to become a truly independent person who can share my story with other people who live with my condition.
This is a TED Talk explaining neuropathy but only in a girls wrist- not throughout her entire lower body.Â
$12,000 to cover the 10% of my surgery that insurance doesn't cover
$5,000 for a wheelchair that can handle winters in Chicago
$3,000 for pain management therapies not covered by insurance
$10,000 for more advanced physical therapy programs with the hope of walking again
Here's a video of me walking during physical therapy!