One of the things that has really hit home since I got so sick is the issue of accessible and affordable housing for people who have Chronic illness and disabilities. I am very lucky because I had already built the tiny house, when I got really sick, and was inhabiting it, so while it’s pretty rustic, and a demanding lifestyle, I have this place, and it’s my safe-haven and my sanctuary. Don’t know how I could afford rent on my income. So what happens when your symptoms become so severe that it’s not wise to stay in your current situation? What do you do?
The community nurse and I have tried several times to get me a place in Assisted Living, as last year (2018) I had 140 days of seizures, with many days more than one episode. Over 50% of those days had more than 4 episodes in one day. The Assisted Living Assessors tell me that I am TOO sick for Assisted Living due to my ‘unscheduled care needs’ (Think they mean my seizures), but apparently not too sick to continue living alone in a partially off grid cabin with no flushing toilet, in a place with no hospital, pharmacy or bank. No transportation, or even street lights. Many days I don’t have enough energy to chop wood for heat, or cook and prepare healthy food for myself, or if I do push myself into the ground doing all the chores that need doing, I have a massive ‘crash’ caused by the exertion, making my symptoms 100 times worse, and spending days or weeks in bed recovering. (I kid you not!).
It’s pretty messed up. Last week I had a seizure so powerful it broke 3/4 of one of my back molars off, and another day I fell and hit my ear and head on an oil radiator. But apparently, it’s safer for me to stay living like this than in an Assisted Living apartment with food, personal supports and home-care provided as needed! So instead, we will wait until something really bad happens. It’s such an asinine way of approaching healthcare, and support for disabled people, but the longer I am sick and disabled, the more I realize the services we need are so under-resourced, that these kinds of decisions are not personal, and are made as a way of removing vast swathes of people from the potential of Assisted Living because demand is so high, and supply so woefully low.
Many people I meet are more worried about keeping their personal taxes low, instead of raising them slightly to cover more investment into housing and health support services for the disabled and chronically ill in their own communities, and who can blame them? They probably don’t realize that what happened to me could happen to them at any moment. I surely never thought that at 51 I would be so consistently unwell, and disabled, that I’m unable to fully manage and take care of myself in a 240 sq ft cabin!
I’m know I’m fortunate to have my little home, even if I can’t manage living the lifestyle that goes with it anymore. At least I have this sanctuary, and in absolute paradise too. Just wish I was able to make it work, and wasn’t so limited in what I can do and where I can go. The post office and home, is a big trek for me these days, and a day in town for medical appointments usually takes me a week to recover.
I DO worry about the future though, and not the far away future, but the future of tomorrow or the day after, or the next time I have an episode, and I’m unable to speak or control my bodily movements. Will I fall and really hurt myself next time? Will I fall outside, and be unable to get up or reach my phone or will I fall and burn myself on the wood-stove? Let’s hope not, eh! And not to worry because according to VIHA, I’m too unwell and my health is too unstable for me to move into an Assisted Living place, with the supports I need, but I’m perfectly fine living on my own in a Tiny House on a Tiny Island with only minimal support.