For years I have written whatever pops in my head – articles, blog posts, personal experiences, flights of fancy, but I have neglected the largest looming conflict in my life – the fact I live with an invisible illness. I neglected to write about it because I have spent my entire life running from it, denying it, and often outright hiding it. Why? Because I didn’t want it to define me. I didn’t want to be that sweet fresh young face that looks fine but that everyone worries about. I didn’t want to be that cripple in some dark corner, scratching the dirt, and complaining about my lot in life.
I got sick when I was twelve. It started with stomach pains, first just little childhood tummy aches but with time they grew in ferocity and showed up more and more frequently bringing along a number of friends, other symptoms. I was paraded in and out of hospitals, clinics, and specialist offices. I had more blood drawn then I could carry, I had enough X-rays taken to make me the next super hero, and I submitted to so many tests I eventually lost much of my identity and became little more than a numbered lab rat. By fourteen my pains became so great I stopped attending public school (which was a hell all its own) and by sixteen even homeschooling became too much. I left with a ninth grade education, no friends left to speak of, and increasing pains. My dreams of becoming a paleontologist or a criminal pathologist were dashed hard. I had nothing to live for anymore. I faded into the background as my life stopped in its tracks.
Shortly before my twenty-sixth birthday I became involved with someone who took me out of the house which I am sure poisoned me and made me sick in the first place. For five years I lived in normalcy, running a farm and watching with great joy as my health started to improve. Two weeks short of five years and my boyfriend came home and told me he was leaving me because he had feelings for another woman. I had no savings, I still did not have good enough health to get a job, and my only option was to sell off the existence I had worked so hard at and return to my mother’s toxic house, which by now she’d filled up because she is a hoarder. I was sent back to hell both mentally and physically. My world collapsed again.
It’s easy when you’re in this situation to ask God, or the Universe, or whoever’s listening what did you do to deserve this… have I not worked hard enough? Have I not been productive enough? Was I being paid back for some shitty thing I did in a previous life? But I couldn’t let my mind go there. Depression and chronic illness as bastard twins, where you find one you often find the other. But for the first time in my life I flipped my thinking around. Did I deserve this turn of events? Fuck no I didn’t, and fuck if I was going to accept them!
With every last bit of energy I had I started a travel blog – Catching Marbles and I refused to give up my dream of living on a farm again where my health was good and my mind was satiated. I decided I would get there – this time by myself and that’s where I am going now. I continue to blog and write articles hoping my writing will eventually bring in some sort of income and I will be traveling around New England this winter, when my health allows, to sell my sculptures and artwork. I am a very creative individual and intensely resourceful. Someday this will save me. In the meantime it’s a daily struggle as I notice my health failing worse and worse by the day. Winter is upon us and winter is the hardest season of all for me so I am often stuck in the Love Canal house, staring at piled boxes of hoarded shit, just watching the days pass because my stomach or body is paining me too much to move.
Someday I will get of here. Someday I will have a place of my own. Someday these struggles will be a distant memory. Until then I wake up every day with a list hoping I can at least check off half the things on said list. I will claw, and dig, and chew my out of this situation until my fingers are bloody stubs, if that what it takes, because I deserve better.
I started this blog for a lot of reasons. Of course I hope this and my other blogs may eventually start to pay for the life I so desire but it’s deeper than that. When you live with chronic illness you often feel as if you’re worthless because your contributions to society are not measured easily like they are when you have a job and are taking in money. I am showing my worth by offering you, the universe, and anyone else who will listen, the only valuable possession I have left – my story. If it brings you comfort, or courage, or empathy, let that be the tokens in which I am paid.