I don’t think people realize chronic illnesses can kill just as readily as the terminal ones. Their quality of life just gets so bad they suicide.
So, yeah, I nearly died this past year (pro tip: “When you are going through hell, keep going.” ~ Churchill). The biggest tragedy is when strong, emotionally competent people fall, it doesn’t look the same. Because I was calmly telling people I wasn’t coping, they didn’t get it was the same level of distress as if they had found me in a gas station bathroom slitting my wrists. And I know, for the most part, people are not heartless bastards; the gaps I fell through were ones formed by ignorance, not a lack of caring. But that ignorance nearly killed me, so Imma gonna talk straight about some serious shit, yo.
It isn’t something I have talk about much, especially on here, though it has infused a lot of my writing, but not talking about it left me hanging in a crisis (so, yeah that was dumb) . Ergo I am coming out of the closet. The illness closet, the depression closet, the suicide closet, the grief closet, and the holy fuck it saved my life lovely lovely weed closet.
The background: I got mono in high school, and it broke something in my system, I never really got well after that. it took me two extra years to finish high school, and the the rest of my adult life revolved around taking care of myself. At my best I could do a bit (5-10hrs) of part time work or school, but mostly I wasn’t at my best. It put me on a different path, a life separate (and often separated) from my peers. A life where my identity had to be formed from who I was not what I did (because what I did was insomnia-watch Ron Popeil at 4am). There are decided advantages as far as resiliency and self esteem goes, but it is a hard life and a tough battle to try and find joy and meaning in your small tired world full of pain, while your friends go out dancing and get jobs and travel and marry and all kinds of shit I just don’t have access to.
But I learned a lot about managing my illness, which bought me a bit more freedom (a cautious freedom that could be snatched away from a bad choice or even bad luck), and within that freedom I build a life I loved, with meaning, and moments of joy (all the more poignant because of the rarity). It was mostly shit, but it was my shit and I did awesome things with it. Then things started to fall apart. I had a series of really bad relapses the last 5-6 years for a variety of reasons, I just started to destabilize. And that made me vulnerable. at the worst possible time.
Three years ago I was just coming out of another rough summer of relapse, I was at the Wahoo that shit is over I can pick up my life phase when my mom’s health started to decline alarmingly. Long story short, whatever energy I had was then spent on my mom, and the two months I spent by her side in hospital before she died took the last of the energy I had. And that is when everything blew to hell.
For any of you who have been through it, you know grief is exhausting. Grief when you are already chronically exhausted is pretty fucking brutal. But what nearly killed me was the implosion of my remaining family. I guess grief hits everybody differently, but how it hit them prevented their ability to cope with a seriously ill me, and that loss of support when I was ill and grieving and floundering snowballed my health into a hell I still struggle to put to words (pausing to enjoy irony of snowballing to hell..).
Losing my mom sucked, but what I lost in my mom was my advocate, my prime explainer, justifier, and slap upside the head hey help the girl out-er. In the middle of all this mess (’cause I was really frickin angry and shouty and there was much discord) people would say, ” Oh Valerie what would your mom say?” And what she would have said was “Ohforchristsake, Valerie can’t handle that.” But she wasn’t there to say that, and as per that competent people crashing thing, no one else understood I was in peril.
Not everyone failed me, I am still alive after all. But it was a scary time I nearly didn’t survive, and I think sometimes, about all the people who quietly just didn’t make it. And for them, and for the people to come, now that the words are coming (and please be patient with my poor broken brain, it is so hard to gather and hold a thought, plus there is some weird assed processing shit going on with typos, homonym transpositions, and I jump tense all over the place) I need to speak up. About what I needed, what failed, and my guesses as to why things failed. This crisis had revealed to me not just the social and structural flaws in caring for people with chronic illness, but all sorts of mental health issues, especially how men are equipped to deal with crisis and how we as a society support them. And grief, and suffering — we got some wack responses to that shit as a culture too yo.
So, I am gonna do the only thing I know how to do faced with all that. Write. And more than ever before lay my guts out on the page. Because it is too important. We need to get better at this, we need to do a better job of taking care of ourselves and others. My weird sense of privacy and the comfort of being able to pass for normal (when I’m not napping) aren’t worth it, if it means even one person can avoid a tragedy like mine.
That, and if zombie movies have taught me anything, folks love to see someone’s guts laid out.
So first up, I am going to spend a week(ish) live tweeting my illness. Follow @vlrny for a ride-along on a life you have never seen. Voyeurism and metaphorical entrails, what else were you gonna do this week that was half as much fun?