In 2014, arriving in Portland and settling into our new house while Ron worked, I found myself alone most of the time. My solitude gave me time to take stock of my life: my two careers, writing and ecology; my new home, my relationship, and my health. Each realm of life seemed to be in flux. I struggled with all the uncertainty, and I wrestled with myself.
My journal entries from the fall of 2014 are full of tears. It took me months to understand that these tears were not about individual incidents–in one entry, I appear to sob over the fact that I’d be alone in unloading our moving pods–but about a general sense of overwhelm and fear that had to do with my illness. By now I had been sick far longer than ever before in my life. Would I ever again be well?
Last night I sobbed, finally, on Ron’s shoulder in Mom’s kitchen. I’d gotten this awful sadness in my sternum, pressing into me, a short while after he dashed off for his job interview–the high school had called him at the last minute. Then he returned to say he was all but offered the job, and I realized we wouldn’t get to do the move-in together, and also that Ron might have the car all week so I’d be trapped. I put my hand under my ribs and sat with Kili on the bed for several minutes, breathing and trying to let it sink in. All evening I tried to be happy for him without also being sad for me, but still felt sad.
When we were alone in the kitchen after Mom went upstairs I cried. “I just love you so much. I don’t want us to be separate for nine hours every day for the rest of our lives. I’m worried that this is the beginning of thirty years of hardly seeing each other, then when we finally get to be around each other a lot we’re old and tired.”
“That’s the sweetest thing I’ve ever heard,” Ron said with a smile.
For now, it sounds like I just need to square my shoulders and buck up. Ron and I have been spoiled. There’s a story in Kitchen Table Wisdom about learning to appreciate the unexpected gifts we’ve been given–we want an apple and God puts something else in our hand, and we’re so busy mourning the lost apple that we don’t realize God has given us a pomegranate.
It’s later. The light is graying outside my old bedroom window and the crows have been cawing; some peeping bird calls periodically. Bear just wandered in after mewing around the house downstairs; he’s in the litter box across the room. Kili is breathing beside me, partly awake, just sitting in the way cats do without seeming to get bored.
I just broke down in another big cry for 15 minutes, clutching at my chest, sobbing prayers into my hands. I’d picked up Kitchen Table Wisdom, trying to nurture myself like I want to be doing, and the story happened to be about a woman processing the death of her husband. I would read a sentence, cry and take off my glasses, think I was done crying, then glimpse the next sentence and be unable to finish it through the blur of my tears.
Losing Ron is my worst fear. I’m not sure which I fear more, dying or losing him. But the dying fear has to do with losing each other, too. Fear of abandoning him, of how he would cope. Of leaving him before I’ve learned to be as loving to him as he deserves. I still feel, since having the thought a few years ago, that the thing I want most is to live a long and happy life with Ron. More than that–kids, travel, even good health–is secondary.
This must have a lot to do with why I’m clinging to sharing the move. I’m so afraid of Ron dying early that I feel desperately urgent to soak up life together. It’s as if this could be our last move, or one of our last years together. And there’s also the fear that this is the beginning of the end of our many long hours together, our endless time in Peace Corps, our shared classes and work in Madison, even our long evenings this last year as he’s been working. Somehow this one instance of inconvenient job timing is all wrapped up in my existential crisis about losing Ron.
How silly. There’s no sign that either of us will die anytime soon. For heaven’s sake, all that’s happening is that we don’t get to unload the pods together for a few days. Normal people would not break down crying about this. Am I depressed–from the lack of daylight in Portland (already, at least compared to Madison) or the year of illness, or my slow disconnection from all my friends?
But is there really anything so wrong with being so in love with your husband that you’re heartbroken (a bit) over losing most of the hours in the day with him? “Normal” humans, in many societies, wouldn’t have lives that require 9 hours a day of work, with exercise separated out because work is so stationary. It’s not “normal” to be this busy. If we were lucky enough to be loving, in-love spouses in some less-modern society like my Peace Corps village, then we could farm together. I think of Mr. Mgeni and his wife, the day I caught them making love in the afternoon when I stopped by their home. Mama Day said those two loved each other sana–very much.
And also, I should have some compassion for myself. Of course I’m afraid of Ron dying: The first best friend I ever had died, suddenly, when I was in college. I was always worried about that affecting me; of course it has. And Dad died two years ago. Both of those people are connected in my mind to Ron.
Ron and I have been homeowners a little over a month, and today was his first day of teaching at another new, semi-permanent job, Clackamas High School. Last weekend Beth visited from LA, our first houseguest in our halfway-set-up house. On Friday night she and I picked him up from CHS, where he’d just had his first look-around at his new school. There was a football game and the parking lot was busy in a cheerful drizzle, and the marching band was playing nearby. I felt a pang–more than a pang, a wallop–of envy. Ron will now have a thriving, bursting-at-the-seams community of staff and students, and I’ll have…the house. Errands. My illness.
We drove to the Black Keys concert and I stood in the flashing lights and the waves of noise, trying to keep from showing that I was crying whenever the lights flashed our way. Beth and Ron saw anyway. I felt so full of love for Ron, and so desperately sad at this new apartness. I don’t want to spend the prime of our lives apart like this, with so little time that we can’t hope to keep each other abreast of everything that happens to each of us, like we’ve always been able to do until now.
Portland feels so big.
Then there’s my health. I feel trapped in a limbo. My hair falls out in big clumps; my poop is yellow or green; who knows what I weigh–110 at my last doctor’s appointment, four months ago in Madison. If I eat anything other than whole grain brown rice, tofu, steamed veggies, tahini, and miso, I get stomachaches and bloody stools.
Yet, despite applying in mid-July to get Oregon health care, I still can’t see a gastroenterologist. My first appointment’s not till late November. Recently, after finally getting accepted to the low-income Oregon Health Plan, we got kicked back off it because our monthly income went up slightly after Ron got paid from his first teaching job. I hadn’t wanted to be on the OHP in the first place; but now, just as I feared, we’ll have to start over again. To complicate things further, Ron technically “has benefits” through his new job at CHS…but only for $600 a month. Does that mean that we can’t get the Obamacare tax breaks anymore? Will we need to start paying $600 a month? And when will I ever be able to find a doctor?
My illness is such rotten timing. Right at the tail end of when I wanted to try for kids, and yet, despite that urgency, also at a time of upheaval where it’s impossible for me to form a relationship with a qualified doctor. It’s like all of 2014 is a limbo period, health-wise. And a critical one: I just turned 36. Now, at the very earliest, I’ll be 37 when I have a baby, if I can at all.
I feel like I still don’t know who I am, like I’m still in search of role models on TV and in movies who I can be like. I can’t picture who I am. Just these other, idealized women who I hope to become. Why is that? It’s this adrift feeling. Floating in this big house, often alone, in a new-but-old city, grasping at strands of my family web, I can’t quite see who I will become.
A day of phone calls and logistics–to health care, to Home Depot about cat doors, etc. Then, for the first time since moving in, a real evening off: Ron at Spanish, me home alone and determined not to work. I went for a long, satisfying walk in the after-rain, glistening night, keeping going just one more block till I reached an unexpected dead end loop at the top of a hill. I could see Mom’s hill, the full moon, and the valley lights below off toward the West. Magical. Strange that we’re back in Portland but our house doesn’t feel like home. Walking these streets did, more–something I used to do, in similar places nearby, when I was younger, alone.
Today was gorgeous: crisp, clear blue sky, beautiful sunlight, 60s. The mountain, over the hill, stood out in 3-D. Yet by evening I was curled sobbing on the couch in the sunroom, alone. I’m still sick. My cold/cough came back yesterday, enough for a throat tickle and fatigue, and was accompanied by 4 BMs and lots of bright red blood–symptoms I used to have, though still not as bad as back then. But the worst since I started my macrobiotic diet.
Today we were supposed to go tidepooling with Tara and her lab, something we’ve been excited about for months. If not that, we could have gone to Rebekah’s concert, Mom’s gig, Eleanor’s 4th birthday party, or volunteering with UU and Habitat For Humanity. But I couldn’t do any of it. I reluctantly stayed home.
I did go out for a little while, after resting with Ron all morning. I dropped off our defunct printer before the electronics recycling place closed, and picked up the new one at Best Buy before the sale ended, did a couple more semi-urgent errands. When I returned I napped. Mom called and we talked briefly and I told her how frustrated I am with being sick, and started crying. She had to go get ready for her gig and apologetically got off the phone, and I sobbed on the couch for a while.
It’s been a year. A year since I excitedly realized that my grieving for Dad was ending, that I was finally ready to do things again. Then my symptoms started, and I have spent yet another year cooped up, trapped by illness: first Dad’s illness, then my grief for him, and now my own. Three years since I’ve really been free to be myself, to enjoy life and revel in activities and friendships and busy myself with things I want to spend time on, like being a good friend and family member, and learning things, and traveling, and going outside. Instead of all this sitting and lying: reading, watching things, getting things done on the computer, declining invitations with feigned ironic cheerfulness.
Reading the Paulo Coelho article in O! Magazine made me remember how I used to feel so chosen, so capable of anything, like I was following my dream. Coelho’s strong belief gave me a taste of that again. If I just find the right mindset about my illness, I can still feel that way. Look at Darwin. Look at Rachel Remen.
When I started crying it felt good, so much more honest than I usually am this year. What I really feel underneath my optimism is afraid, and angry, and wounded, and vulnerable. What will I lose; what have I already lost; can I possibly have the life I want with this disease? How, now, could I ever go live in Africa, or even France, or have children? I sobbed into the pillow and imagined myself a Muslim, supplicating, surrendering to God’s mysterious plan. I hope there is still a plan for me.
Last night Ron and I fought then finally made up. He got home at 7 or 7:30 and we talked things out, him apologizing, me reiterating things, us finally wearily being nice again. We watched “Captain Phillips” and read Harry Potter 7 till around 1 am; I slept in till after 10.
Before the movie started, Ron was cleaning the kitchen and I disappeared into the living room while he finished and I wept silently into my hands. He came out to find me wiping my eyes and I tried to explain my tears to him, and started crying again, and ended up crying for another 20 minutes or so while he rubbed my back. It felt cathartic.
One major thought I said was, “I’ve been wondering if I should come out about my illness on the Internet.” I’ve been feeling called to write about what I’m going through. The words are starting to come. I’m “out” already to friends and family, but not to Facebook and not to my main writing website.
“I think you should,” he said thoughtfully. “What’s the difference?”
I just feel inauthentic, divided, lately. It goes back further than my illness. It has to do with my lack of a permanent job. Ever since grad school, I’ve had this part of my brain that’s always calculating my actions’ employability. It affects whether I go to social events and how I dress for them, who I talk to, what I say, and how I present myself online. I’m always so careful to come across as capable, strong, bright, positive. It has worked–I’ve come close to or been offered most of the few jobs I’ve applied to in recent years, turning a few down. But I’ve lost something: my vulnerability. I knew I had lost something, but I didn’t pinpoint it till now. I thought it had to do with becoming a scientist–such a masculine, a-spiritual field–and with being in Madison, a place full of cheerful, reserved people. (Madisonians are anything but vulnerable. Vulnerability is much more common in Portland.) I didn’t realize till now that it was also about my placing myself below others, my sense of scarcity, my secret fear of joblessness.
I used to cry more often. I probably smiled less often, too, wasn’t afraid to look serious and thoughtful. I used to decide how to be based on how I was feeling deep inside, and that was closely related to my sense of God and my connection to him or her throughout the day. I miss that.
Yesterday, in the midst of my surrender, I felt myself breaking open in the good way that Parker Palmer describes. My tears felt so honest, and therefore cleansing. So much was uncertain about my future and my health, but here was a certainty: that I was at least being true to myself.
I think I didn’t give myself enough time to grieve, this year. I let myself grieve when I was first diagnosed, just after we returned from Spain, but then at least outwardly I tried to be cheerful. I didn’t often succeed, or not as often as I thought I should. But the point is that even when I wasn’t cheerful I was trying to be, wasn’t fully allowing myself to feel what I was really feeling, which was desperate, and claustrophobic, and angry, and afraid. And it makes sense that I was still feeling these things, because I was losing bits and pieces of my life on an ongoing basis–it hadn’t all ended back in April. I was still losing things: losing canoeing with Ron when it got sunny; losing Bike the Drive; losing camping; losing being a good friend my last summer in Madison; losing Arabic; losing a carefree road trip across the country and pesto on my birthday.
Paradoxically, last night, admitting to myself that I was doubting God’s plan for me, I felt closer to God than I had felt in months. I felt a light shining down on me through the dark night air, through the roof and ceiling.
The man from Sevilla popped into my head as I cried. Pero el Dios vivo, he said: But God is alive. He conversado mucho con el: I have spoken with him many times. I had felt almost envious of this broken, decrepit, toothless, homeless man who talks to God regularly, who feels this light on him so often. Now, crying and broken myself, I felt that same light and remembered the man and felt kinship with him. When I met him I had no idea that when I arrived home I would learn of a disease that could steal so much of my life from me. I was still my former self. But now, I am so much humbler, so much less certain of things, and I see that man anew. When I encountered him I wanted to learn from him and follow him somehow, and that must be one gift this year has given me: I have gotten closer.
I went to church this morning. “I need to go to church,” I said to Ron at the end of my tears last night. “I need a spiritual place; spiritual guidance. I need help.”
“Then you should,” he said gently, still rubbing my back.
In church I let my face be long, my shoulders be hunched, my brow furrowed. I let myself look tired, let my struggle show. It feels like the most important thing, right now, is authenticity. Listening to my deeper self, learning again to be true to her.
I hope it will be a blessing not to have gotten the job I almost got, recently, with the Soil and Water Conservation District. I came so close–the director told me I was second. It’s like the Aquatic Invasive Species job a few years ago. Maybe not getting this job will lead me along some different path, to something deeper and more important.