Seized and Desist

All puns aside, I’ve started four different blog posts about my health in the past two months and been unable to post them. But here we are. And the time has really come to talk about it.

Alison, who if you didn’t already know, is the site coordinator of the Tucson Borderlands YAV site, pointed out to me in our one on one meeting that at some point in the last couple months, my language had shifted to referring to myself as chronically ill. I don’t think I realized it or thought of it consciously, but that admission to myself and stating of it has power. Not in the sense of giving the disease I have power over me, but in the sense that it is okay. It is okay to say that in two months I will turn thirty and I have an illness that has no cure. That I am neuro-atypical and therefore this is a way I am part of a borderlands people and have realized in many ways that society is ableist in a way I can’t properly describe. That as someone who appears fully young an able-bodied when I sit at the front of the bus I have to ride people glare at me and demand I get up sometimes. That I get hate for “no please don’t touch him, his vest signals that he is a service dog and that distracts him from focusing”. “well but it’s not like he’s guiding you what is he even doing” And because Epilepsy spends so much time in the shadows and I’m that weirdo who will talk I tell them. And watch their face change from anger to mortification and get some sick satisfaction out of their self loathing rising up in their eyes as they realize what they’ve done. “Maybe next time just don’t pet a strange dog or make assumptions.”

But that’s not why I’m writing this. That’s part of what lead me here. For the last three months my medication wasn’t working. I realized that not only was I having around three to four seizures a night, the clonic-tonic (formerly grand mal) that people think of when they hear seizures, but that for the past ten years I’ve been having what are called focal aware seizures. They used to be called complex partial seizures. That the deja vu, disconnected with reality feeling that lead up to my panic attacks, which don’t happen any more thanks to a great doctor (the panic attacks that is) are seizures. Have always been seizures, not just dissociation. That the weird eye movements are in fact, seizures. So for three months I’ve been having between 10 and 20 seizures a week. While on medication for seizures.

And so Alison and I tried to figure out what was best. And I think really in my heart of hearts I knew that I needed to do what was finally decided, but the relationships and care I had for the people and the reality that I needed to be here for the doctors and have health insurance and housing and income, it just…it overwhelmed and stressed me out more. Which I knew would make it worse. Because stress does make my seizures worse. And it just got worse until I had my first tonic clonic during the day for a year. Goliath woke me up and I had lost time. I was in a different room than I remembered being in. It was a mess.

So we’re here and after discernment with the board of the site, the national office and Alison, I will be leaving the program as of April 30. I’m not leaving immediately, because really, if my health hadn’t gotten worse, I would stay. I couldn’t decide. There is so much here that is good. Time to discern. Stability. Community. Chances to build these deep lasting relationships. This program has changed my life in ways I can never fully repay. I am forever grateful. I will tell people about this forever. But I also have to recognize that right now I have to take care of an exhaustible, finite resource, my health.

The end date of April 30th is so all ducks can be put in a row. Housing, job, health insurance, etc. Because in this great capitalist country (#sarcasm) health insurance is a privilege, not a right. Because if I can’t afford to pay for it, the idea is I should simply be more at risk for SUDEP.

Because the one piece I didn’t talk about last year, that I couldn’t talk about last year when I was diagnosed with epilepsy is that. If you are epileptic you are always at risk for this. Sudden Unexpected Death in Epilepsy. It has no known cause, it’s not drowning or traumatically related, so it’s not because you had a seizure. It accounts for 7.5-17% of all epilepsy related deaths in those with managed epilepsy (in otherwords, you’re not having seizures) and 50% of deaths for those with refractory epilepsy (seizures are not controlled by any medication). 1 in 1,000 adults suffer from this every year. While that may not seem lot statistically it is still something you have to come to grips with and for me, when the seizure activity increased, it certainly played a big part in my concern.

I want people to know not because I want them to feel scared for me or anything. But because Epilepsy is not discussed. Because I walk into a building with Goliath and hear “I wish i could have a service dog”. Because it takes me days to recover after a tonic clonic. Because I don’t know why this happened. Because Jesus cast demons out of a boy with this disease and that makes me angry, even though tomorrow I will celebrate that he died for me and rose again. And it makes me angry because I am not possessed and yet there are people who believe that it’s a thing that is true. And in other cultures people with seizures are considered to have great powers and be capable of healing disease. And all I want is to be able to ride a bike or drive a car and not be afraid that I won’t hurt myself or others. To not worry that if I use the stove or a knife in a house by myself that I’ll cause serious bodily harm.

So I’m discerning the path forward. Mourning that I will be leaving something that has been so wonderful for me, but rejoicing in the peace I feel that this is what is best. I will still use this blog. I will probably use this blog to write my thoughts as I go along in the discernment process of finding the next steps.

 

Peace and Love

Rachel

 

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