I'm…frustrated. (To put it mildly.)
I'm frustrated with myself. I have been so sick, for so long, and it affects my quality of life every single day. But…probably not in the ways you'd think. Or should I say not just in the ways you think. Yes, I'm in pain every day. Yes, I'm exhausted after the simplest of tasks. Yes, I sleep all the time. But right now, none of that is what's bothering me. Right now, right this very minute, what's bothering me is that I can't scrape together a few hundred dollars to take my mom to the Renaissance Festival this year.
Do you know how utterly exhausted and angry a person has to be to dissolve into tears at the mere mention of an event?
I can't work a normal 9-5 job. I can't work any job with a schedule! My health actively fights against a schedule. So I turn to what I call "on-demand" jobs—think freelance writing or click work—but lately, I haven't been able to earn more than a few cents or maybe a few dollars a day—despite working more than 8 hours in a day.
Finances are still a taboo topic. Money is something people are not comfortable discussing. But it's something that needs our attention. Chronically ill people often cannot qualify for disability in the US, despite not being able to work. And even when they do, the money they receive every month often isn't enough to make ends meet. I don't qualify for disability or any other assistance programs. I'm insanely lucky; my mother makes enough to support both of us. But just barely.
And every year…every single year…we get to September (both of our birthdays), and my mom says how much she'd love to go to the Renaissance Festival. She says, "Maybe, at the end of the month, there will be enough left over for us to go this year!" And every single year there isn't. It's September 23rd. I have spent every day this month trying to complete enough click work tasks, enough user interface tests, and enough virtual assistant tasks, to take her to the festival. And I can't.
And all I can think is that…maybe if I was awake more, I could have completed more work and that would have made the difference. Or maybe if I could take odd jobs around the neighborhood, that would have been enough.
Money is something we often ignore in the chronically ill and disabled community. And I am sick of it. Why is it that we can talk about our quality of life in terms of not being well enough to attend events, but we ignore the fact that even if we were having a good day and could attend something, there is no way we could pay for it? It used to make me sick to admit I was struggling financially. (And to be completely honest, it kinda still does.) But it's the truth! I'm sick. I can't stay awake most days no matter what I do or how hard I try. Everything hurts all the damned time. And all of that means that I can't work and I'm struggling—struggling so much—to make ends meet. I know I'm not alone in this. I know this is not a unique experience.
We don't talk about this and we should. Normal, healthy people do not understand that this is not an issue of wanting (or not wanting) to work, but of the ability to do so. Normal people see us as lazy when they should be seeing a failure of society to take care of a vulnerable population. And there is nothing that can really change here. Not unless the government completely overhauls the way disabilty services are distributed. Maybe I'll get lucky and my writing will take off. (Not likely.) Maybe I'll come across the perfect work-from-home job that will fit my lifestyle perfectly. (I wish, but also not likely.) Maybe I'll hit the lotto and this whole rant will be null and void. (HA!) Or maybe I'll still be crying about this next September. (Sadly, most likely.) Maybe by then, I'll have scraped together the money to treat my mom.
I hope so.