In 2011 at the age of 21, I was diagnosed with an extremely rare blood vessel autoimmune disease, Takayasu’s Vasculitis. I had lost my eyesight, the ability to stand up, the feeling in my arms and legs, among other symptoms which caused me to be bedridden and unable to care for myself for a year and three months.
Thankfully I had family and friends who looked after me and pitched in to support me financially while I waited to get approved for disability. The next year I FINALLY started getting monthly payments to supplement my loss of income and to pay back my family for all their expenses. However, this was not enough for me to make a living—SSI only gave me about $800 a month which was nowhere near covering my cost of living, especially with medical expenses.
Realizing SSI wouldn’t be enough, I went back to work in 2012—even while on chemotherapy and extremely ill. I worked for companies that didn’t have any physical requirements, which was good for me. They offered creative outlets that helped get my mind off of my situation, too. I still received my disability to pay medical bills and prescriptions (at that point I was taking about 20 pills a day).
Some weeks ago, I received a letter from Social Security stating that they have chosen to repossess their payments since 2012. And to put the icing on the cake, they want me to pay them $20,166 in its ENTIRE amount in 30 days. Today I made a request to appeal Social Security Administration’s decision to take back all of my disability. This experience has helped fuel my fire for spreading healthcare (and healthcare reform) awareness.
These so-called ‘assistance’ programs are beyond flawed and unrealistic. A disabled, ill person should still have the chance to be a productive member of society if they CHOOSE TO (like myself) without fearing punishment. Being given an ultimatum to either work or live below poverty because of something they had no control over is immoral and unfair.
My wish is that my story opens your eyes and touches your heart to help me in my fight– I know I’m not the only one who is going through this. I stand for each and every misunderstood survivor out there who craves to make a change in the world.
My mission will not be in vain.