Creating a book manuscript, What to Do When the Lights Go Out, Managing the Holidays (with a chronic illness)

Creating a new book manuscript

I’ve been working on a new book for the last year or two, sort of intermittently, but in the last few weeks, started give serious attention to organization, sectioning, working with different titles, and figuring out things like theme and length.
I used a Word cloud of my manuscript to help me brainstorm ideas for a title. I’ve had at least three over the last six months, which means I probably don’t have “the one” yet. I’ve just exchanged manuscripts with a friend at a similar place with her book and I am so grateful because you can only look at your own book for so long before your eyes crossed. I do all the things with her MS I do with my own – print it out, read it through to see what themes pop out at me and for possible titles, mess around with it on the floor to figure out alternate organization – it all requires real paper, I think. I am very lucky to have friends who are willing to trade manuscripts with me at this point in my life. And I’m trying to do my best – since I was too sick to do much writing or submitting and lost some time this year – to get the poems from this book out into the world. I’ve included a picture of my word cloud below! I have freelance work I could be doing, but it felt like I needed to spend some time in the rainy month of November doing some creative work that helps recharge me.

What to do when the lights go out

October was beautiful this year – we saw sunshine and the turning leaves, and often we don’t get much of a fall here in the northwest – but November has kind of been a jerk. The last ten days I’ve had three power outages, one of them ten hours long – long enough to ruin the food in the fridge, get the house cold, and generally make Glenn and I cranky. November in Seattle can often be a difficult month – SAD sinks in, the weather makes it unpleasant to even walk outside briefly (even more so in a wheelchair, which manages to get your whole body way wetter than walking,) and you need to do things to cheer yourself up if you’re going to remain sane.
Here are some pics of my deer and hummingbird visitors, a vivid November sunrise, our maple leaves before they were all swept to the ground in the most recent sudden rainstorm. Following the advice of longtime northwesterners, we’ve ordered a generator and a battery-powered lantern – my Kindle never works when our internet goes out, and I couldn’t read worth a darn with a candle or the led flashlights we had. This will help us survive the next power outage when it comes. But it brings me to the metaphor – what do you do to help light your life when the darkness seems oppressive?
Lately, my dabbling in art and my writing and reading has not quite been enough to keep from feeling tense and blue. The frequent doctor appointments and more dentists in my near future (I broke another tooth) – may not be adding to the usual November depression. Glenn took me out to see “Murder on the Orient Express,” the first movie we’d been out to in a while, and we also did some clowning around with some fake “southwest” scenery to warm us up at our local store, Molbak’s, during their art and wine night (which was so rainy and windy we could barely get through the doorway without being blown away). It’s hard sometimes when you’re not feeling your best and the weather’s unpleasant to push yourself into going out, seeing people, trying new activities – but it seems really important to maintaining sanity! I’m trying to get over a two-week cold so I can go socialize with some friends, too – another important aspect to keeping your cheer in the face of 4 PM darkness and time-change-and-power-outage-related crappy nights of sleep. I’m hoping to be well enough to get to some poetry readings soon, something to look forward to in between doctor’s and dentist’s offices and even more MRIs. Also, I need to remind myself the darkness in temporary – and the solstice is coming soon, and the days will start getting longer again.

Handling the Holidays When you have a chronic illness

It can be hard to make the holidays fun when you have a chronic illness or have a loved one with a chronic illness. If, like me, you have a weak immune system and manage to get pneumonia every time you fly, it means you might not be celebrating with your out-of-town family. It can also be hard to force cheer when dealing with your body’s little and big failures. I ordered holiday cards and was joking with Glenn about writing a holiday letter that captured my admittedly pretty crappy last year – “Hey, friends and family, the good news is I’m not dying of cancer. The bad news is, I’ve got multiple sclerosis. Happy holidays!”  Just kidding, of course. Fake cheer is not good for the soul, but neither do you want to be a major bummer to your friends and family.

I think the key is, to moderate your expectations – maybe fewer activities, but doing the things that bring you the most joy – scheduling in visits with friends and family that make you feel happy, maybe including the rituals that are meaningful (putting up holiday lights, going to the holiday light shows – lights are a big thing for me!), but ditching others (Glenn and I will probably skip a fancy Thanksgiving dinner this year). One thing I wanted to do this year was show gratitude for the people who really showed up for me in my last year of health crises, friends who sent me flowers and cards and came to sit with me as I was recovering from my terrible MS episode in August and was stuck at home, barely able to move or eat. So I’m going to try to figure out a way to express love and gratitude this holiday season for the unexpected and generous actions from so many. I want to try to enjoy the season even if my body isn’t able to go out and do as much as I’d like or I have to give up on the notions of having picture-perfect holidays during a year where my doctors keep telling me how lucky I am to be walking on a cane four months after my severe flare. I’m encouraging Glenn to use some of his vacation days to do nothing related to holiday “chores,” just relaxing the way we want – no pressure. The days when we’re together with nothing scheduled can end up being the best days, a real luxury.