In October of 2020 I received a letter from social security telling me I would be taken off the system because they had randomly decided my condition had improved and I could work. I could appeal the decision but if I failed at pleading my case I’d be without my pitiful income, health insurance, or any other kind of aid. Obviously this bit of news sent me into a downward spiral of stress and fatigue. I filed for an appeal and then…. nothing happened for months. Confused I thought maybe this was a glitch and all was fine? NOPE. They were just delayed because of Covid! Now it was being “seen by new eyes.” So in the summer of 2021 they announced I would have to go through a proceeding and plead my case to my case worker. It specifically stated I was allowed up to two witnesses but could not bring a lawyer. This is unusual. Perhaps due to the massive structure changes our most orange president spitefully made doctrine only a couple weeks before he left office. Got to kick the weakest person in the room on the way out, you know. BUT ANYWAY.
I was already in burn out before the epidemic because my life just wasn’t going anywhere I thought it would and I had fallen into a depression. And then the pandemic hit which isolated me further and gave me another hard knock. By the time disability came by to cheerfully exclaim I was fine and no longer needed their support I was DONE. My brain had already melted into a puddle. I’d stopped all my creative projects because my mind just wasn’t there anymore. My writing – halted. My photography – silent. My various attempts to get a real income so this wouldn’t be a problem – now impossible as I was paralyzed by depression and anxiety.
After a few more cruel months of waiting they FINALLY scheduled a hearing. Basically the issue was two shrinks they had hired said I was FINE and capable to work (even though my claim was for PHYSICAL ILLNESS) and social just jumped on the bandwagon. I endured an interview that lasted more than two hours and literally left me in tears – tears that I could tell my interviewer thought was just me being manipulative but the cold hard truth is almost no one in my life has ever seen me cry. Not even at funerals. I was crying because I was WAY past my limit and the more questions she needled at the more, the more stupid they got (“And can you use your fingers?”) the more frustrated I got and the more words just left my brain until I was just answering in one sentence or word. Yes. No. I don’t know. I don’t remember. I was completely and utterly broken and my interviewer clearly could not see this.
At the end of what was one of the most traumatic two hours of my life she cheerfully told me she should make her decision in 4-6 weeks. because what I really needed was more waiting in limbo! Four weeks went by. Five. Six. Nothing. By the time the eighth week went by I felt like she was baiting me to call and start yelling so she could turn it around and say only people playing the system would get angry. I am so used to people using this baiting and gaslighting method that I didn’t. Say. A. Word.
Instead I stayed home and researched jobs I might be able to do for two days a week (because this seems to be my limit for out of the house activity before I get into serious trouble.) This two-day-a-week job had to pay enough in that time for a livable income… to someone with no work experience and a 9th grade education. Not surprisingly I wasn’t finding much.
On the first day of the tenth week I finally got my letter. They decided my condition had not changed but suspiciously half of the form they were supposed to fill out about my ability to work or not work was left blank. I was right. Whether this was intentional or just an absent-minded thing this woman thought I was capable of work but couldn’t say anything because my medical records consistently show nothing had changed and she couldn’t go against the first judge’s decision on those grounds. This of course leaves me wide open for the next review in one or two years to be just as brutal and even more unforgiving. I get the distinct feeling this woman only left me on because I said I was planning on seeing a shrink for the first time willingly but I wasn’t going to get used to therapy if they were just going to throw me off health care.
So here I am. Tomorrow I get to figure out how the hell to get myself a therapist. One that will be willing to at least test me for autism, ADHD, and post traumatic stress disorder, all things I very deeply believe I struggle with based on what other people say these things are like. Nevermind finding someone who is OK with me being gender non confirming or polyamorous. Could be a nightmare but I got to try!
And in the meantime I am doubling down on trying to get off disability. It seems like everything in my life teaches me the same lesson over and over: don’t ever rely on anyone else but yourself. You’re the only person you can trust to have your best interests at heart. All this time I have held myself back, so afraid I was going to get cut off, well fuck it – they want to cut me off anyway I’m going down swinging! All this time I tried to indie publish the books I wrote because I knew seeking a real publisher would mean risking being paid an advance. An advance is a sum of money over $2000 I could be penalized for. We’re not supposed to have any assets or savings over $2000 or we risk being ripped off the system and people do get ripped off every day for insanely minor offenses. It’s almost like they don’t want us to healthfully get our lives back – they want to punish us for ever asking for help. It’s still a gamble. If I receive an advance and then the book doesn’t sell I could be SCREWED but at this point in my life I need to do something, anything, because $800 a month just isn’t going to cut it when I’m no longer living in my parents’ basement.
In the meanwhile my blogs seem to be getting a little attention. Not enough to be worth anything yet but enough to be encouraging. Except this one. No one wants to read what a bleak reality it is to live off disability. That’s depressing. And since it takes A LOT out of me to write these entries I may be changing this blog to a vlog and doing short educational videos on the system in general when I have the energy to do so. The ins and outs. Why it’s not living on the high hog. The things no one ever mentions about it… at least put a face to it.
After spending a week in a near-coma processing everything that has happened in the past eleven months I have awoken – angrier, more determined, and feeling my creative mind coming back to me. I will throw myself into my creative work and pray long and hard it pays off. In the meanwhile if my photography here has moved you feel free to check out my RedBubble shop! or buy one of my books! Every dollar helps! And so ends the begging portion of this entry. Thank you for reading.