Being disabled and on disability, I have come to believe the “system” is set up for failure. I have been labeled disabled since 2013. At my third emergency (ER) visit, I had to fight and persuade the on-call head physician that I was not feeling well, couldn’t go home, and felt as if I was going to die. It was a blessing in disguise that my blood pressure suddenly elevated to 225/100, which prompted the doctors to admit me.
The second day in the hospital I woke up and I immediately knew something was different. I could not feel my lower extremities, from my belly button on down. I was completely paralyzed. A year later, I was correctly diagnosed with neuromyelitis optica spectrum disease (NMOSD).
Not one doctor knew what my future would look like after this happened. I was told that physical therapy would be my best friend. I would most likely have a long recovery if I regained any mobility. I envisioned myself sitting in a nursing home room, hospital bed, or wheelchair for the rest of my life, watching everyone else live the life that I dreamed of.
In 2013, when I became paralyzed, I was enrolled in cosmetology school with 3 months left of the program. In August 2016, I was able to go back to complete my schooling. I had been on the correct treatment, and my NMOSD was stable. Yes, I went back to school in my wheelchair, part-time. I was determined to finish what I had started. I have been styling hair for my family and friends since the age of 4, when my mom taught me how to braid hair. So my God blessed me to still have the full strength of my hands and arms to continue my talent.
Read about HCP resources for NMOSD
I graduated from cosmetology school in January 2017 and passed the state boards in March 2017. I was certified and ready to work. I was able to get a standing wheelchair, which a vocational organization paid for. I was ready to find employment in a salon.
However, it’s not that simple. The vocational program helped link me with a benefits analyst, who told me that I can make up to $700 a month without losing any of my medical coverage. I need that coverage to continue getting treatment for my NMOSD.
When I got a job, during my first month, I decided to save my paychecks because I wanted to get a van of my own to get back and forth instead of relying on public transit. Well, when I got my review from the disability overseers, I was told that I have too much money in my bank account. I had to not only spend the money down $400, but I also had to submit a list of what I spent the money on.
I was told I was on Social Security Income (SSI), which is a needs-based program. I understood, however, it doesn’t make any sense to me that I can make extra money but not be able to save for my future or anything that I may want to save for. I spoke with several different people at the Social Security Administration and at the job and family service here in Cincinnati, Ohio, to see if there were any other programs, I could apply for in which I am able to have a little more in assets. That way, I can save more than the cap of $2,000 that I am allowed now.
Nothing of what they came up with would work for me. I spoke with and had meetings with a few lawyers to see if there was even a trust that I can save and withdraw funds if and when needed. I then read online that you can set up a bank account called an ABLE account to save money and not be penalized for having that money; you can use it for housing, food, clothes, and even vacations.
I thought I finally found an option. That was short-lived when I read that you had to have been disabled before the age of 25. People become disabled at all different times in their life. I didn’t become disabled until the age of 29; so because I was 4 years short, I’m not qualified? People get injured in car accidents or other types of unforeseen, yet serious, mishaps.
You need and get basic medical coverage support from the government, but you pay a price that significantly limits the quality of life you could have if you weren’t so limited by what you can earn. And that net income I get from the government barely makes ends meet.
I want to work despite being in a wheelchair. I want to have some sense of my normal life before this disease struck me and I became disabled.