So the thing about having a chronic illness is that you still get sick. In the last 25 years you’ve gone through all the special treatment regimens and all the relapse prevention workshops. So why do you still relapse? Because your illness is chronic, and you can’t control all the factors that lead to relapse.
So what if you manage it so well that you live a rich and fulfilling life most of the time? If you’re really managing it all that well, then you shouldn’t relapse at all. I did all the right things. I still got sick.
They say it’s like a spiral staircase; each time you have another bout, it’s the same but different. I haven’t been on this ride since 2014, but the whole thing is nauseatingly familiar: ER trip, inpatient hospitalization, outpatient treatment, FMLA paperwork, short-term disability paperwork, doctor’s appointments and follow-up visits, holistic therapy, yoga, meditation, slow re-entry to work. Yadda yadda yadda.
The slow re-entry to work is reminding me of the biggest factor outside of my control: the current crazy project that’s causing me current crazy stress. Add to that the doubled commute to my office’s new location and a change of personnel on my treatment team, and you’ve got a recipe for another floor on the same damn staircase. On the days when I’m not in the office, things go pretty well. On the days when I’m working, I limp to the end of the day, and sometimes I have to leave early.
So that happened. Which is why I haven’t updated this website since May. And why the spambots are now bombarding my comments with almost-legible suggestions that I visit their questionable links to learn more about how to increase traffic to my website.
To those of you who are still with me, I thank you.
waking and trembling
trying to write anyway
nothing is easy
- My father-in-law is dying of cancer. He is dying at home with round-the-clock care, surrounded by his extended family. My father died in a public men’s room of an overdose. The contrast in details is pretty stark, but the feelings are much the same. And in the end, they’ll both pass through that gateway alone. Grief doesn’t live in a line, but a labyrinth. I’m surprised every time I turn a corner to find it there.
- I have a pile of review copies in my office. Interviews with a couple of poets are in process, but none are ready for publication yet.
- I’ve completed applications to three low-residency MFA programs. Yes, Emily Dickinson and Jane Austen didn’t need MFAs to become successful writers. But I’m not living in the 19th century. Who knows what will happen during or after my course of study? It still seems important to try.
- I’ve spent three days out of the past two weeks in bed. Having an “invisible” chronic illness is especially frustrating at times like these. Yes, it’s exacerbated by stress, but it’s not exactly like I can keep my life from being stressful. And it’s true that certain preventative measures can keep the symptoms down, but it’s not very helpful to beat myself up about not taking them (or being able to take them) after the fact.
- We have a brief respite from February’s slings and arrows. I’m going to take advantage of it right now and go for a walk before the winter weather returns with a vengeance.
Photo courtesy of Akif Mert via Flickr, CC2.0
Beautiful things can happen when you give yourself permission to let them. But usually it involves digging through a few layers of distraction. It took two pages of maundering before I settled down to make this drawing. Just before I did, I wrote “Never let someone take away your own agency as an artist. You don’t have to give that up — ever.”
Regular readers of this blog know that I’ve been living with a chronic illness for 25 years. Stress and complications with bronchitis caused a flare-up in early October. I spent about a week in hospital, and have been convalescing since then — I plan to return to work on a reduced schedule in the next week or so.
Writing has always been a major tool for me in making sense of (and peace with) these episodes. This past year though, in the depth of the illness I’ve found myself relying on right-brain visual self-expression. Words just haven’t seemed sufficient. Entering a pre-verbal space seems to get to the roots of my troubles in a deeper way and to allow healing to happen at a more fundamental level.
My family was highly creative, however we had an unspoken territorial agreement about who practiced what kind of art form. My father and mother were musicians, my brother was the visual artist, and I was the writer. While I had some early training in the visual arts, I chose to focus on writing partly out of respect for my brother’s “domain” and partly because writing was something that came very naturally to me. Visual art has continued to play a part in my life, though. I’ve kept this work private for the most part. But I think it’s time to send some of it out into the world.
I’ll be posting some of the images and artwork I’ve been creating since early October. Some readers may be more interested in the written word — and the name of the site certainly implies that that’s my primary focus. I like to think of creativity as being all of a piece, though.
Things that make me cranky:
- waking up feeling worse than when I went to bed
- trading one set of medication side effects for another
- feeling my body getting heavier and older
- expecting to be able to exercise the way I used to when I was 25 and at the peak of training
- days when the only thing I seem fit to do is putter around the house and take in a matinee
- Boston’s schizophrenic spring weather
- focusing on my own needs and the ways they’re not being met
- getting away from support systems that help me feel connected
- pollyanna-ish spiritual literature that tells me to just focus on the positive! and everything will be fine!
- focusing on the things that make me cranky, especially when they’re things I can’t control
Things that make me happy:
- posting cranky status updates on Facebook (and the one or two people who say they can identify)
- comparing the treatments available today to what people used to endure 50-60 years ago
- considering advances in genetic research that may make it easier for doctors to pinpoint which kinds of medication will be most effective for individuals with my illness
- friends and mentors who can say the sorts of things that snap me out of negative thinking and help me focus on what will work
- reconnecting with support systems that remind me I am part of beloved community
- focusing on how I can be of service instead of on what I can get — or what I think I SHOULD be getting
- remembering that work is a wonderful opportunity to be of service
- making moderate progress while conserving energy — sometimes this is better than exhausting myself by FIXING ALL THE THINGS
- identifying small, achievable tasks toward a larger goal — and checking them off a task list
- putting stickers next to completed items on my task lists
- remembering that all things pass — even the line in the Post Office on a Saturday afternoon
- moderate exercise
- intense exercise (in moderation)
- dancing at weddings
- professional massages
- hot tubs and steam rooms
- inexpensive (and free) self-care, like a spa day at home
- vanilla-scented bubble bath
- taking myself on an artist date
- reading 101 artist date ideas
- the unwinding feeling that comes with relaxation — in all kinds of ways, expected and unexpected. Sometimes in meditation, sometimes when I’m laying in a big bed all by myself, sometimes when I’m in a field of grass in warm weather, sometimes when I’m sitting with a cup of tea and looking at the trees as the sky fades from blue to darker blue.
- the first time in 2014 that I smell rain on unfrozen soil
Gratitude doesn’t always come easy. Sometimes it’s a discipline, a practice. Sometimes I go through the motions without feeling inspired about it. But I do the motions anyway. Today’s gratitude list:
- daily reprieve from a chronic and deadly disease
- access to health care providers who assist when the other chronic and deadly disease rears its ugly head –I mean symptoms
- sunshine — albeit October sunshine, harsh and in short supply, still sunshine
- more clothes than I know what to do with
- fuzzy kitties who love me whether I go out or stay in
- a job that trusts me to do the right thing without breathing over my shoulder
- friends and family who call, text, and email
- a man who puts the kettle on for me every morning
My father’s legacy: chronic illness, sorrow, trauma, SSDI survivor’s benefits that helped pay for college, nonconformist leanings, love for the music of the 60s and 70s, pretty good rhythm for a white girl, and a deep and abiding understanding of the importance of creative expression.
I can’t say I’m always grateful, but I am aware of the way he shaped me — intentionally or not. Wherever you are now Dad, I hope you’ve found the peace and happiness that so eluded you in life.