I write these words with tears dripping from my eyes. My frustration with this particular situation has become so ridiculous and overbearing that I think it will simply crush me.
As I have said a thousand times before, I was born sick. When I was 15, right as I was nearing the end of high school and was contemplating the upcoming realities of a part-time job, a driver’s license, and college, my health failed me worse than it had ever before. Instead of a part time job, I got Emergency Room visits and hospitalizations. Instead of a license, I got diagnosis after diagnosis, with little understanding. The wings I should have sprouted in my teen years were severed by chronic illness and pain, and my unsupportive family and many apathetic friends had no interest in repairing them. And so, I did not fly, but I fell, and nearly ten years later, I am still falling.
I moved to Saint Louis from my hometown in California nearly eight months ago. What started as random babysitting jobs when I was 21 elevated to a part time nannying job for another family when I was 23. I had my very first real job at 23. The job was not the best, but it was steady income, and I became very close with the girl I looked after. I was grateful, and the money I made from that job, dog-sitting and babysitting, and a third job as a receptionist at my college, are all what allowed me to make my move. for nearly nine months, I worked all three at once, while going to school full time, and despite my heath conditions, I did quite alright; until I ended up collapsing in the hallway of my old house from exhaustion.
After my surgery last summer I had extremely high hopes that my health would improve and I would be able to have a “normal” life. However, in my time in Saint Louis, while I no longer have some of the problems I used to, my arthritis worsened and I was diagnosed with Chronic Fatigue Syndrome as well as a Syrinx, which is a cyst in my spinal chord that upon aggravation creates such intense nerve pain that even a light touch to my arm causes me total agony. These diagnoses would not be so bad on their own, but they’re quite the challenge on top of my other illnesses. To read my list of diagnoses, click the Cheatcode.
Soon after I moved here it became apparent that I could not have a regular full time job. I applied for disability, got denied immediately, then promptly hired a lawyer to fight for an appeal. To my dismay, I found out that it takes two years to get a court hearing just to argue my case, and that doesn’t guarantee that I’ll win at that time. In the meantime, if I work full time, I’ll be disqualified, and while I can work part-time, even then, I could still be denied for it. So, I am too sick to work, but I have to force myself to because I can’t get help, but I can’t work because then I’ll be denied help. When my lawyer first told me this, I burst into tears, and my heart sank past my stomach and into the center of the Earth. “What am I supposed to do?” I asked the lawyer. “It doesn’t make sense at all, but those are the rules. I understand you feel frustrated. All you can do is take care of yourself,” was his somber reply, which gave me no comfort at all.
I must have applied to at least a hundred or more jobs since moving to Saint Louis, both part time and full time. Very few employers responded to me, and the few that I did actually meet face to face with generally ended in blank stares and awkward silences, because they cannot figure out why at 25 years old I have only ever had two jobs, one being a nanny, which many consider to not be a “real job” to begin with. I am rejected again and again as my money slowly drips away with no way to replenish it.
I often wonder why these employers don’t stop to think about why a person my age may not have worked much. They assume it’s because I am uninspired and have no work ethic. Why do they never stop to consider it is because despite wanting to work a normal job more than anything in the goddamn world, I have been incapable most of my teenage and adult life? Furthermore, I have very little skill and qualifications for many jobs, which is obviously the second biggest reason I am denied. But how the actual fuck am I supposed to gain knowledge and skill when no one will give me a chance? Why is it that in order to get a job you must have experience, but you can’t get experience because no job will hire you? I am aware this is a issue for many people, sick or not. But when it’s all this plus being disabled, life is a fucking nightmare.
I don’t want pity. I don’t want sympathy. All I want is a decent chance. I am trying to make my own job freelance writing, making jewelry, and other things that I have at least a sliver of talent in; however, those types of jobs take nurturing, and that nurturing takes a good amount of time that my financial situation does not allow. Ultimately, I want to create my own jobs that I love, and that helps both others and myself; but that dream is only a fragment of my life right now, because the rest is desperately scrambling for a simple job that will pay me enough to survive, but not enough to take away my disability or destroy my body. I feel like that is so much to ask for in the world I live in. Why is that so much to ask for? Why is asking for small breaks to stand, or a chair to occasionally sit in such a massive inconvenience?
I truly hope that our society’s hiring system changes for the better, that disabled people are understood, and that those who for many reasons never had a chance, are soon able to get their foot in the door. I am not asking to be spoiled or to just be handed a chance. I am not asking for the perfect job to come right to my door. But you know something is terribly wrong when my disability lawyer tells me that my own government does not care about people like me, and his point has been proven to me constantly throughout my life. There is nothing right about the fact that a chronically ill person can’t get health insurance because they don’t qualify for special discounts and can’t afford 450 dollar monthly premiums, or that my dear friend goes to the ER struggling to breath every week because her Medicaid won’t pay for her asthma medication. It’s twisted that despite every application stating that the employers believe in “equal opportunity,” we all know that equality is far from the truth.
I hope that wherever my life leads me, my path will contribute to changing this world for the better. My faith in so much, including myself, is waning. My body is in even more constant pain with no relief because I can’t afford proper treatment anymore. My mind is exhausted, my soul is burned out. Yet through of all that, I will continue to fight in hopes that if I do not find opportunity, I will create it myself.
Wish me luck.
And she said, “I think we’re running out of alcohol, tonight I hate this fucking town.
And all my best friends will be the death of me.
But they won’t ever remember, remember. So please take me far away,
Before I melt into the ground, and all my words get used against me.”
You sad and lonely girl.
Quit crying your eyes out, quit crying your eyes out, and baby come on.
Isn’t there something familiar about me?
The past is only the future with the lights on.
Quit crying your eyes out, baby.