I started this blog to start a brutally honest discussion about invisible illness and how it’s treated by society. It’s important to talk about these things because people who do not live this life have no idea.
Tonight I was out attending a dinner with a group of people I did not know. I was doing great mingling – something I never did until this year. I was laughing, smiling, telling funny stories about my recent and dated travel adventures. Apparently I have something to say about a whole ton of topics! This is news to me because I am used to being silent. It was a jovial event. I was going back and forth in this conversation for an hour or two when the woman I was talking to, an older middle aged woman, made an off-the-cuff remark about how she was enjoying this chapter of her life because she went through a lot of shit when she was young and she was so happy to be in a better place. I responded, “I hope I got done with all that early! I am done with all my bullshit! It’s been a hell of a year!” I then told her very briefly what a clusterfuck my life has been… how I went from running a farm, and planning for marriage and children, to being told my dearest was leaving me for another woman and I needed to get out…. with no other option but to move back in with my mother. She responded with a cringe worthy note, “Oh dear, you’ll get back on your feet! At least you have the most important thing – your health.” I probably stopped smiling at this point. It wasn’t her fault, she wasn’t trying to be hurtful and she couldn’t have possibly known, that this smiling well adjusted person sitting in front of her struggled all day to gain the strength to come out tonight – who had to have my mother accompany me to the grocery store so I could grab something to bring to the potluck and who had to take two naps just to have enough energy to be seen tonight.
This comment hurt for a lot of reasons but I think the hardest one was the realization that I am likely permanently stuck living in my mother’s basement until someone else decides to step up and take care of me – something no one should have to do. I’m on disability, I am not going to lie or omit that fact. It’s because I have not been able to hold it together enough to maintain normal work with a health condition that throws me off my feet for no rhyme or reason whenever the hell it feels like it. I am a fiercely independent person who wants nothing more than to take care of myself but being on disability is a joke. My entire monthly stipend is not enough to cover even the shittiest one bedroom apartment in the town I live in – it’s short by at least $200 and that’s not including other bills such as utilities, food, phone, internet, etc. I also should note I live in the middle of nowhere, not New York City or somewhere where the cost of living is way above average. I am not someone looking for a “handout” or a “free ride” I am someone looking for quiet human dignity… by myself but there is no way on God’s green earth I can function financially in this society by myself. I am living with my parents, at the age of 32, because I have virtually no other option.
Here’s the other options I have: 1) File for Section 8 Housing and wait eight years to find an apartment. 2) Hook up with some random guy, likely total loser, and let him deal with all the bills. 3) Go into a low income building that will take 1/3 of my stipend and leave the rest that should be enough to cover basic amenities but little else. This last option comes with a forced two year lease that states you’re forced to pay it even if you move or are evicted for the remainder of the two years. It also comes with no land, so no gardening, usually no pets and if so just one, and I would be surrounded by mostly single retirees waiting for death. I fear such an environment would depress the shit out of me.
So as you can see, for most women in my situation, the only real option is to get some guy to take care of you. This is soooooo wrong. Why should I have to depend on someone else just because I had the audacity to be born with a body that doesn’t function correctly?! I shouldn’t be forced to have a relationship for security. That’s pretty much state endorsed prostitution and I see it happen so much. For now I refuse, because I already did this once – I got involved with a guy to get the fuck out the basement and not surprisingly it backfired horribly and now I know if I am to be OK in life I have to find financial security on my damn own. So I am writing, furiously, and throwing myself into my art, and creating online platforms and attempting to start fundraisers… hoping one or all might save me in the end landing me on a homestead where I belong, some tiny home in the middle of the woods with a few chickens and a garden. I don’t feel I am asking too much – but society feels otherwise. I know in the aforementioned environment my health would improve and I would be more functional. I also know I would be capable of running it as an educational facility in the summer, when my health is at its peak, meaning I would actually be benefitting society and not just sitting around rotting and using up other people’s tax dollars to keep breathing.
I am trying to save money up for my dream but I have been doing research and it seems that to build a tiny house of my own I am going to need at least $40,000 and more money to buy land, install a well, and electricity. That’s way more money than I will ever get on disability. I wish I could work!!! Days like this I get so frustrated because I can see so clearly what I need to be happy, healthier, and beneficial to the society around me, and I can’t for the life of me get there.
I am not giving up. I will continue to fight. Maybe a miracle will happen and something I do will give me a livable income. Until them I remain in limbo. Waiting.