I can barely afford to pay rent and afford my own medication and I'm probably going to need a home health nurse and a maid to survive. I can't work and will need other people's help or it will kill me. I am 35 years old. I don't know how I survived this long but I guess its kind of remarkable that I did because people keep wanting to talk to me. I have a genetic disease called Cystinosis that I don't want to have to explain fully here, but it's something you're born with and it scares me and its almost killed me several times.
Its killed many fellow Cystinosis-positive friends I've grown up with but I've made it to 35 and I have lived much of that time more afraid of asking for help than death itself, which seems frankly absurd to me after a 2-week stay in the hospital that nearly took my life. I am not healthy enough to earn money in a way that would guarantee I take my meds on time and survive through to my 40s. I tried working like a "normal" person with a full-time "real" job that offered good health insurance but I simply can't. I can't do that AND monitor and care for the complexities, expenses, and required time of my own health issues. I don't know why it's taken me so long to not be ashamed of that. I have a disability, I can't work, and that's okay. I'm not afraid anymore. There's nothing I could type here that would be logically more frightening than death, and I've faced that, so why should I be afraid to be honest about how much help I actually need? I'm definitely not going to be able to work anymore, but I did pretty well for a while. I'm deeply in debt because I've been bad with money and many of my health problems might exist because I wasn't compliant with my medication. It might be my fault that I need your help or it might be my genetic birth disorder, I don't know. I have faults, of course, and I don't think I deserve any charity, compared to anyone else - but I also know that I won't survive without it and not surviving is scarier than spilling every last bit of tea from my life in public and JUST ASKING FOR HELP.
My job tells me I owe them over $4k in "overpayment" because I stayed home from work too afraid to do anything. They're probably technically correct but there's obviously no way in hell I'll ever be able to pay for that AND the stacks upon stacks upon stacks of health care bills in my home. I probably owe something like $30k in debt. I should be declaring Bankruptcy but I'm terrified of the paperwork because it is incomprehensible and I can't afford to have a lawyer review it because I am, as I said, very bad with money and probably bought one too many creature comforts on debt. I like being alive and would like to continue to be alive and for many many reasons, I will tell you all of them if you want me too just ask me, I really need your money if I'm going to continue to survive because like I said - I am deep in debt and I can't work anymore and my health care is up in the air as a result and I definitely can't afford whatever that means but I assume it's bad. Ask my to beg for money and I'll do it because at this point I am literally begging for my life.
I can't work and without work I'll die and I would like to not die and every single penny literally helps I will buy a sandwich for seven pennies but it might take several thousand more pennies to pay for my health care. I am putting a fundraising goal of $35k because I don't honestly know how much money it costs to survive but that's sort of what my yearly salary is with a bunch added on for buying health care.
- Kevin Maslanka
- Arohi Srivastav
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