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.