feeling like a vic chesnutt song when i’d rather listen to sleater-kinney

I am just going to put this here because I need to get it out of my system but don’t know where to put it and also don’t really want anyone to read it but kind of do.  I don’t know.  There’s enough out there that’s very well presented and designed and thought out to attract attention and readers that I almost feel like public blogging is at least as private as a diary.  People you live with won’t look for it here and people you don’t live with probably don’t care.

That said, I was told my Child-Pugh scores a few months ago and didn’t ask or look into what they meant or even think that much about it.  The doctor who brought it up told me it was just a measure of surgical risk and I took her at her word until another doctor mentioned it in the context of “and this is why I don’t think you can handle having your gallbladder out, even if it is causing problems.”  And the context for that was “because your liver hasn’t started decompensating yet but it is going to and I don’t want to be the surgeon performing the operation that starts that process.”  No one questions even for a minute that my liver will get worse.  The question is when it will happen.  I do appreciate doctors who don’t want to speed it up, but I wish someone had sat down with me at some point and explained what a Child-Pugh score means.

I got curious and googled it a few weeks ago and I think it may have started my emotional state to decompensate.  The boxes and walls and coping strategies and carefully constructed layers of denial started to bulge and bend and look like they might burst open.  My ability to get through the day without thinking too much about dying went away.  Every project or plan started to shift and contort and ask me whether it could be completed in the two year window I may have.

I have great odds of making it a year: 81%.  I will probably make it two years.  At least I have a 57% chance.  MELD scores don’t work well for people with primary sclerosing cholangitis, so maybe Child-Pugh scores don’t either.  I don’t know.  With MELD, we are often sicker than our scores indicate, though, and I don’t want to be sicker than my Child-Pugh scores indicate.  That is too close.  That is not enough time.

Meanwhile, on the days I leave the house (I plan and strategize obsessively because I know being out of bed too long or too often between my three classes could make it impossible to pick up my kids from school or eat or attend those classes) I am often told that I don’t look sick.  Usually the person saying it never saw me before I started getting sicker faster, so I can try to remember they mean it as a compliment and move on, but I know I look sick because I remember what I looked like before cirrhosis.  Also, I know that I spent every available bit of energy getting myself not to look sick, because on the days when I don’t have to leave the house, I definitely do not have the energy to get dressed or shower or brush my hair.  Not looking sick two days a week wipes me out.  I spend most of the rest of the week in pajamas.

Knowing I may not have long has informed every decision I have made for years.  I have tried not to say anything to relatives who repeatedly create chaos in my life because I am afraid if I don’t let it go I will risk leaving that with them forever if we don’t reconcile and honestly, I don’t have the energy to deal with apologies from people who are just going to drop their crises on me again in a few months.  I try never to turn down invitations from friends because if I am physically able to see them and don’t, I don’t want to think that I cheated them out of a last memory.  I am trying desperately to finish the degree I promised my grandmother I would finish.  The last time I saw her she told me she knew I could, and I do not want to let her down.  I want her to tell me she knew I could the next time I see her.  So many things are more urgent when you know you don’t have time to procrastinate and so many other things are not worth the effort.

Today I had to give a family member bad news and that family member was handling it inappropriately and I just broke and let her know I was done and she needed to find other family members to maintain those connections so she could stay informed in the future.  I may not have time to repair that conversation but I know that I also don’t have energy and maybe if I hadn’t been framing the situation with her that way in my head I would have set better boundaries years ago.  I know that I will hear about it again or all our relatives will hear about it for years to come but one way or another, it won’t be over.  I didn’t want that for her, for them, for me, but I am starting to realize how little control I have over which loose ends are left untied.  I try to make sure that I leave no one unforgiven.  It’s really hard and I fail way too often.  I think the person I need most to forgive right now is myself.  I am not going to finish the list.  I can only finish the things that I prioritize each day.  I didn’t choose this and if it interferes with achieving what I want to in the life I have left, I have to let that go.

 

 

#SoInspired

A funny thing happened this weekend as I was lying awake worrying about needing to appeal an application for SSDI/Medicaid (due mostly to an error my interviewer made because she had never heard of primary sclerosing cholangitis and mistakenly filled out the form as if it were a type of cancer): a hashtag riot broke out.

Disabled people are well aware of the ways we are used as inspiration porn when not being told by abled people that we are handling our illnesses and other disabilities wrong (pray more! go vegan! go organic! go paleo! suck it up! yoga! positive thinking! laws of attraction!!?!?!?<-that one almost seems to demand a whole separate essay on entitlement and assumptions about others’ oppression and misfortune, but I’ll move on for the sake of length).  That the #SoInspired outbreak took place around the anniversary of Stella Young’s death seems like a fitting tribute to her work to dispel the myth that disabled people exist to be inspirational and our other work and accomplishments either don’t exist or serve as a side note to our real purpose, i.e. making abled people feel better about their own lives and opportunities.

For those who haven’t heard of Stella Young or the pain caused to disabled people by inspiration porn, here is an excellent introduction:

After the stress and aggravation of reading that my medical care is still not covered despite being far beyond my or my family’s ability to afford, reading how far from alone I am in wading through unsolicited and usually bad advice, thoughtlessly unkind comments, and being forced to deal with institutions like hospitals and government bureaucracies that often seem to be designed more to prevent me from accessing necessary care than to provide it was both heartbreaking and comforting.

I needed to hear from so many others that I am not the problem.  My disease is not the problem.  The way our society handles people like me and diseases like mine creates problems.  This (to respond to the frequent unknowingly insensitive remark “I don’t know how you stay positive!”) is how I do it.  Remembering that the problem is a society that disables people like me and the many, many others who took over the hashtag #SoInspired this weekend gives me hope because a society can be changed if the people who create and live in it choose to do so, which leads me to a secondary hashtag, #ActuallyInspired, which was simultaneously used to give credit to disabled people who really do inspire us.  People like Stella Young, Dominick Evans, and the many, many others who do not use our lives and difficulties to make abled people feel better about their own lives, but instead use their voices to bring awareness and hope to the disabled community.  It’s okay to be inspired by disabled people, but ask yourself next time you see a meme using someone’s disability to make a point or inspire you to make the most of your life, ‘Am I inspired by this person as a person or as a symbol for hardship?’  It’s flattering to actually inspire someone because of something one has done well, but to be told that getting out of bed and not committing suicide every morning is an inspiration is pretty insulting.

rare but not alone

One of the things that encourages me a lot while I deal with having a rare disease is the online community of people who have the same rare disease.  I wouldn’t wish it on anyone, but when even doctors have to google your diagnosis the first few times they see you, it’s nice to find anyone who can relate.  Another PSCer shared this the other day and I love that he got his liver and that he has used both of his leases on life to better others’ lives.  Mr. Bilikopf is a minion hero for sure.

Of Prisoners and Miracles

It’s oh so quiet. (Shhh, shhh.)

One of my teen idols has turned fifty recently, so I figured it was a good time to share some of her advice about poets:

Also, my older children are visiting their father’s family, my husband has been called in for yet another graveyard shift, and the baby is snoring peacefully on my side of the bed, so it feels wrong to waste all this quiet sleeping!

But I have already turned in the assignment I had due tonight and have at least an hour or two to procrastinate the rest of the work I want to do this weekend (like a true English major), so I figured I would share the song that always gets stuck in my head when the house sounds like this:

You can tell she had kids when she wrote this.  Silence is never so terrifying as in a house full of children.

I hope you have the good kind of quiet this week and all the blessings you can imagine.

(I am about to take a terrible mystery novel into my only quiet room with a ton of bath bombs and a cup of tea and I’m not coming out until my toes look like raisins, which will make me more thankful than any turkey ever did!)

thankful anyway

This year we can’t afford to cook and I’ve been sick too much anyway and need the time to catch up as much as possible, so the big kids are going to other relatives and I am going to be hanging with the baby, hopefully writing like a maniac (a very, very eloquent maniac), which is a little weird and frightening since I have made Thanksgiving dinner every year as long as I can remember and certainly since leaving the big kids’ dad.  That year, we had turkey in our pajamas and watched Les Miserables on the couch.  It was a hit and movies in pjs became the way we spent every Thanksgiving.  I have never felt comfortable celebrating a holiday that commemorated a lie told to hide genocide with gluttony and my kids can tell you many ways that the day and its “traditions” are wrong, but giving it up has been harder than I would have expected.

This year, my husband will be working 12 hour overnight shifts before and after the day and there will only be three of our usual five and really, we can’t afford the gluttony, so I have no plan, which is such a rarity in my life.

There are so many things I might do:

I could take the baby to the park,

blow off homework (unlikely but still possible) to work on editing the poetry that has been accumulating in my top drawer,

read poetry and be thankful for Li-Young Lee and Mary Oliver, Anna Akhmatova and audre lorde,

write thank you letters to forget to send, like the other thank you letters I have forgotten to send

paint pictures with the baby,

watch squirrels outside my bedroom window.

I am thankful for so many possibilities, for my second/third/fourth/endless attempts at finishing a degree, for the quiet before everyone wakes up and the noise after, the chance every morning to try harder to live by my principles, and people who encourage me when I do and don’t judge me too harshly when I don’t.  I am thankful for the food we do have and my husband’s willingness to go to a crappy job to make sure we keep having it.  I am thankful for the kids I miss when they are gone and thankful that they will have more than I can give them in a house full of people who love them.

I am thankful for you.

One essay everyone should read, regardless of gender.

I absolutely love this article, and not only because it has the tag “the canon is shaped like a dick” at the bottom.  It is hard to narrow the discussion of what is wrong with Esquire‘s list of 80 books men should read down to one quote, but to lure you in to reading the essay, here’s a great example of what is right about this rebuttal of Esquire‘s list:

There are good and great books on the Esquire list, though even Moby-Dick, which I love, reminds me that a book without women is often said to be about humanity but a book with women in the foreground is a woman’s book. And that list would have you learn about women from James M. Cain and Philip Roth, who just aren’t the experts you should go to, not when the great oeuvres of Doris Lessing and Louise Erdrich and Elena Ferrante exist. I look over at my hero shelf and see Philip Levine, Rainer Maria Rilke, Virginia Woolf, Shunryu Suzuki, Adrienne Rich, Pablo Neruda, Subcomandante Marcos, Eduardo Galeano, Li Young Lee, Gary Snyder, James Baldwin, Annie Dillard, Barry Lopez. These books are, if they are instructions at all, instructions in extending our identities out into the world, human and nonhuman, in imagination as a great act of empathy that lifts you out of yourself, not locks you down into your gender.

I literally laughed out loud several times while reading it, which is nice, because a lot of the truth Rebecca Solnit tells would make me want to cry or scream otherwise.

(And while I fangirl over Rebecca Solnit, let me recommend another essay every person should read, just in case you haven’t. . .)