I love the Decemberists, but that’s kind of non-sequitur.
The past week has been so full of terror and pain and rage for so many people on so many levels.
My cousin’s son died. He was a beautiful boy and I never really got to know him because he’s sort of a distant relative and I generally let kids have some distance because their world is private and beautiful and, in most cases, none of the business of boring adult relatives, but I was always happy to see him running past with the other kids at family gatherings and he was so alive and friendly and everything kids are supposed to be until he wasn’t and then he went so fast. I feel like I know him better from the eulogies than from life, but I know his father in that same distant but warm-feeling way. We played together as children. He was older and preferred to play with older children but I sometimes got lucky and was included in the big kid imaginary world, and he was very much the same kind of bright, strong, charismatic leader, and I have just been struck by how he never could have known then what he would endure now, and seeing someone you have loved, even in that cousin at holidays way, experiencing that loss of hope and promise, and that destruction of a whole world and way of being in the world, as a parent with years left to be a parent, is unimaginable. There is nothing I can do but I know a sinkhole just opened up in his whole existence and there is no telling how much will fall into it or how deep it is until it is too late. It exposes the tininess of any pain I have ever experienced. I can only pray, but I hope to get his address and write too, because nothing I say will matter, but being remembered and loved is important when a loss is too huge to communicate or bear.
And this kind of reminds me of the fact that so many people are experiencing similar or even greater losses right now. Last week, I was chugging along, following the updates about the terroristic threats against students in Missouri after apathetic leaders stepped down and I was full of indignation and anger at stupid American politics and the fact that so few people I know seemed concerned or even aware of what was going on, and then out of nowhere, more terror, but in another country, and then politicians saying they won’t allow refugees fleeing the same terrorists come to various states and people fighting and fighting and fighting about that. It is so much. It is more than one planet seems able to hold, and every death is as profound as the one that my kids and I cried over all weekend, and so many of the refugees have lost children, parents, siblings, as well as home, but are now blamed for someone else’s loss, and what about the terror in the U.S. that never makes the news because the perpetrator looks too much like the newscasters and politicians who are busy pointing fingers somewhere else?
I have been taking two classes this semester that deal with privilege and oppression and it is hard to say whether I am seeing it everywhere because I am becoming more able to see it now or whether this is an increase.
In the middle of it all, Deuteronomy 10:19 keeps popping up on my social media feeds, and I am usually skeptical about people quoting scripture in the midst of a crisis because I saw it misused a lot growing up, but every time the reminder to love the stranger is another person’s response to all this fear and hate, I feel a little less hopeless.
It is easy to mourn the loss of someone I identify with and to care about the suffering of a childhood playmate, but every person I will ever meet or know about is someone’s childhood playmate and someone’s daughter or son. Even the people who shoot or threaten students just trying to go to school. Even the politicians who want to turn away shell-shocked preschoolers. I am lucky to have people in my world who remind me of this.
I am blessed every moment by the words and actions of so many people I know and so many people I don’t know. I hope I can do a better job of remembering this and being one of the people whose intentions and actions create more hope, and less anger.
The calendar on my wall has the Grace Paley quote “Let us go forth with fear and courage and rage to save the world,” on the page for this month. It’s a good quote, but let us go forth with love, and food, and an offer of a place to sleep, too.
I’m having a hard time keeping writing right now, in part because I get weak a lot when I am upright, so I mostly do my schoolwork lying down with my computer on my chest, and I don’t type as well that way. Also, I fall asleep a lot more that way. Sometimes I just have to accept that I am not going to do the kind of work I could do if I was in better health. It may not seem like it would matter that much, since reading and writing are easy to do while lying down, but I also spend a lot more energy on things like walking to a classroom from a parking lot (that can wear me out for the entire rest of the day), and sometimes really strenuous things, like having a conversation while driving, or buying groceries – huge feats of strength there – can make me so tired that I need to sleep a few hours to recuperate.
Last night I fell asleep while trying to finish an online assignment, which led to my computer dying and a whole lot of words disappearing from Blackboard. It sucked, but there’s only a month or so left before the end of the semester, so I get to do fun reading so soon!
A friend sent me Don’t Suck, Don’t Die when I was in the hospital in September and I have been aching to read it but know I can’t handle extra reading until the winter break. I also get to reread some Bronte novels to get ready for the spring semester and that is going to be great. During dinner tonight, my youngest spilled water on her clothes and decided to strip (problem solved!) which reminded my teens of a story from Hyperbole and a Half, which got me thinking: sick people write a lot of great books!
So instead of getting discouraged about falling asleep while writing in bed or the difficulties of balancing a reading list with strenuous tasks like taking a shower and driving across town, I am going to be grateful this month for the fact that not doing other things really does open up a lot of time in my schedule for reading in bed, and the fact that every week I get through is one week closer to a wild bed reading marathon with my partners in (true) crime (and mystery novels), aka, my kids.
And now that I am awake again, I better try to rewrite what I was trying to write last night.
If you live in a state that has so far refused to expand Medicaid, your insurance rates could double — or more — this year. Don’t blame Obama; blame the anti-lifers you elected to your state legislatures and governors’ mansions. They have the care they need and always will, but they deny it to others.
I have been hesitant to post anything that could be political on here because it is going to be graded, but health care access is political, so being sick is political. My lack of access to the care I have needed over the years has been the result of politics and if I die because I could not afford the care I need, that will be a political act, although not by choice. I am waiting now for my application for benefits to be processed since I am unable to work enough to afford healthcare even with exchange coverage, but we don’t live in a state that expanded Medicaid to cover families like mine, which make too little for subsidies but too much for the old limits on income for Medicaid.
This protest has needed to happen and I hope that, if my liver fails before we have found a solution to this mess, my family will make sure my service is open casket. It is important for people to be aware of what lack of medical care looks like. I want people to know, when they consider how to vote, that people like me will die with jaundice, ascites, raw patches from pruritis, wasting, hair loss, and every other visible symptom of untreated or undertreated chronic illness. The reality of our national and state politics is that those most affected by these policies are too weakened by them to protest effectively, but death has eloquence.
I am grateful to people who share stories like this one, so that their tragedy can help inform communities about the effects of politics on the lives and bodies of the chronically ill.
If you’ve never heard of it, that’s ok; a lot of medical professionals haven’t either. Primary sclerosing cholangitis is a rare disease that attacks and scars the biliary tree (the tubes that bile passes through in and around the liver and bile ducts). Eventually, the scarring causes cirrhosis of the liver, necessitating transplant. In some patients, it also causes cholangiocarcinoma, or bile duct cancer. There is no effective treatment yet except transplant, although there are some new and exciting drugs in trials. Most people with PSC also suffer from Crohn’s disease or ulcerative colitis, although no one really knows what the link is yet.
The most common symptoms of PSC are severe itching, fatigue, right upper quadrant pain, night sweats, and fevers, but as the disease progresses, more symptoms like malnutrition, ascites, jaundice, insomnia, edema, hepatic encephalopathy, and other fun stuff can occur. Some patients never progress that far and others experience liver failure soon after the onset of symptoms.
I’m pretty lucky in that I have made it almost twenty years since diagnosis and only had cirrhosis for a few years. Right now I am trying to get listed for transplant, which involves lots and lots of testing, and regular screening for cholangiocarcinoma. It’s both terrifying and exciting because it’s been so many years since I actually felt good and I have heard that life after transplant is amazing, but actually getting the transplant is not guaranteed and can take a long time.
A lot has changed in how this disease is treated over the last twenty years, though. When I was first diagnosed, I was told people with PSC weren’t good transplant candidates, and now we know that people with PSC have a great success rate with transplants. My first ob/gyn told me I had to abort my daughter or risk killing both of us, but I changed to a high risk specialist and it turned out that my symptoms actually improved during pregnancy. There’s no way to know what will come next but I can keep hoping.
Old friends used to make jokes about me being incurable. At the time, I was young, I had just been diagnosed, and although I had dropped out of school to have lots of surgery and try to recover, I still had the optimism required to see the humor in it. I had been told I wouldn’t live much past thirty if I made it that long, so I took up smoking and reading full-time, since I loved both and didn’t expect lung cancer to be an issue.
Going back to school seemed ludicrous, since it was unlikely I’d ever be well enough to work outside of the house and even graduating didn’t seem like that realistic of a goal – my last semester I watched my grades fall as I stopped to puke in the bushes nearer my apartment each time I tried to walk to school. There was no amount of accommodations that made my GPA seem salvageable, and the situation seemed so absurd that I didn’t even protest when my first husband enlisted in the army and asked for Germany as a first duty station. If I was going to devote the rest of my life to trying to raise my daughter, puking in bushes, and chain-smoking, I couldn’t think of a better place to do it than Europe. Primary sclerosing cholangitis was relatively unheard of, so when we were asked during in-processing if it would require me to be in the exceptional family member program, I crossed my fingers and said no. There was no treatment anyway, so I could be incurable and untreatable at least as happily while seeing the world as I could in Houston.
A decade and a half has passed since then, and while I have developed many strategies for avoiding random acts of yard sabotage, there is still no cure for primary sclerosing cholangitis. There is still no treatment, although there are some in trials that look promising, and to borrow a line from Monty Python, I’m not dead yet,
so I have gone back to school (and given up smoking).
Hopefully, at some point I can trade in being a professional student for some sort of writing or editing work that can also be toted around in a backpack and worked on from any bed I happen to be making a desk, whether it is mine or in a hospital, or on the other side of the world. Alternately, I’d settle for a cure, a liver transplant, or a miracle.
Friends look nervous these days when I refer to myself as incurable, although I usually mean my sense of humor, or optimism, or some other impractical habit. But the optimism seems to be as accurate as any prognosis I have ever been given, so I’m going to ignore the ending of his story to close this introduction with one of my favorite heroes of impossible situations: