Climbing Mount Hope

October 4, 2011 at 9:20 pm (Uncategorized)

Pardon my long absence. I took a break—from blogging, from working, from everyday life. I got to go on a vacation from Chronic Town.

For those of you who are new to this blog—or new to chronic illness—I came up with the idea of Chronic Town as a way to explain what it’s like to live with a chronic or a serious illness. Sometime between when I got diagnosed with sarcoidosis in my heart and sarcoidosis in my brain, I realized that illness had changed just about everything. I couldn’t work. I couldn’t mother my child as I wanted. My body changed as I gained 100 pounds on all the prednisone I had to take to stay alive. My relationship with my husband, my friends, and my family changed too. Chronic Town was the best handle I could come up with to explain all of this to myself and everyone else. I was forced out of my old world—the land of the healthy—and displaced to this new land of Chronic Town.

For my first couple of years in Chronic Town, I was intent on getting back to my old life. I was convinced that if I was a good patient and did everything the doctors told me (even if it just about killed me, like getting nearly two years’ of a nasty chemotherapy drug infused into me twice a month), I could find my way back to who I was and how I was. I tracked down the best specialists; I saw alternative practitioners; I visualized health; I worried; I berated myself for not trying hard enough.

Somewhere along the way, I lost hope. No matter what I did—and how zealously I did it—I kept getting sicker…and sicker. All those months of chemo seemed to do nothing. The sarcoidosis in my brain got worse. I went from having horrible vertigo and headaches to having horrible headaches, vertigo, and periods of complete vision loss. (I’ve never written about just how scary it is to be blind.) At the same time my neurological symptoms worsened, and the sarcoidosis moved into new organs. Osteo-sarcoidosis caused my foot bones to fracture; cardiac sarcoidosis required me to get a defibrillator implanted; subcutaneous sarcoidosis riddled my arms with tumor-like lumps; gastrointestinal sarcoidosis landed me in the hospital for weeks at a time while I got fluids to replace the constant diarrhea and the doctors scratched their heads to find a solution.

I was 38 years old. My only child, a brilliant and beautiful boy who was only three months old when I was first diagnosed, was 5. My husband of 12 years began to distance himself. My family was sad and tired. There was nothing the doctors could do, nothing my friends or family could do, nothing I could do. I tried to scratch out routines between hospitalizations. I tried to show up for the life I had, but it was hard to function while on high doses of narcotic pain medicine that really didn’t knock out the awful neurological pain. It was hard to do much of anything except wait for another terrible thing to happen to my body.

I got in the habit of not thinking—not thinking about everything I had lost, not thinking about the yawning distance I felt opening between Jay and me, not thinking about how much I hurt, not thinking about what would happen if my vision didn’t come back after one of my blind spells. I also stopped planning, dreaming, or envisioning much beyond the minute I was in. Like a stray dog that had been kicked too many times for just existing, I didn’t dare to think about the future and what I hoped and wanted from it. I had been hurt and disappointed countless times by making plans or articulating goals, starting to work towards them, and then watching helplessly as everything ground to a halt or fell apart because I got sicker, got hospitalized, or started new treatments. Better to just deal with the few things I could barely manage on a daily basis than to reach for more. Here’s an example. I decided to try and write and publish a book version of my blog. I got the interest of an agent. I made it through the first round with him. He liked the 70-page narrative proposal and writing samples I sent him, and then asked for a chapter from the book. But I got hospitalized with meningitis, which turned out to be the opening salvo of my neurosarcoidosis—and the beginning of the headaches, vertigo, and blind spells that made writing and reading nearly impossible. It took me 2 years—and several more hospitalizations, dozens of weeks lost to pain, and very little momentum—to write that chapter. By then, the agent had moved on to other projects. In the meantime, I stopped caring about writing a book and opted to write the odd blog entry when I had the energy to work at all. “I don’t care,” I told myself.

Dwelling in the eternal present and resolutely not caring about anything else is a perfectly legitimate strategy for managing a crisis. Put one foot in front of the other, and don’t look ahead became my unarticulated creed. Get through the headache, get through the treatment, get through the day of medical testing; get through the day. Don’t look too closely; don’t look up; just get through it.

This is no way to live. But it was the only way I could live. The problem with chronic diseases is that they’re chronic. We are hardwired with coping mechanisms that serve acute problems. Our ancestors had to cope with charging buffalos, broken legs, and occasional famine. I’m not saying sarcoidosis is worse than any of these catastrophes, just that it’s a different kind of catastrophe. Imagine the buffalo appearing every morning—better yet, on random mornings—and charging some of the time, or even most of the time, but without any discernable pattern. Your cave-mates tell you that it doesn’t look like a buffalo is charging with you. The shaman informs you that he’s never seen such a big buffalo or one that charges around-the-clock and suggest you should get poked with needles 20 percent of the time—while the buffalo is charging—to see if that helps make things better. How do you deal with charging buffalos for years on head? I thought I knew the solution. Live quietly with as little movement as possible.

Imagine, then, what would happen if I woke up a few mornings in a row, and there was no snorting and stomping, huge-headed beast lunging at me. Was I surprised? Was I happy? Did I stop living meekly and fearfully when the buffalo didn’t arrive? Did I start to hope the buffalo had been killed, or that the shaman’s needles had done their trick and somehow disempowered the buffalo? No, no, no, no, and no.

That’s quite enough with the buffalo.

I started to feel better on a regular basis about a year ago. The turning point came six months before that. The neurological problems that had been making my life hellish had escalated to make my life unlivable. I was experiencing total blindness at least several times an hour; the vertigo became so intense that I couldn’t walk without falling over; and the pain that I’d been trying to manage at home with narcotic pain medicine exploded to a new level. The doctors thought I might be having seizures. It turned out that the inflammation caused by the sarcoidosis on my cranial nerves and brain stem had expanded, wreaking havoc on my optic nerve and balance center. For what felt like the hundredth time I was hospitalized, hooked up to a morphine pump, pumped full of ungodly doses of IV prednisone, scanned and tested, poked and prodded. The doctor who manages my care at home couldn’t think of anything more to do.

I was wholly hopeless. Whatever residual faith I retained that I’d some day get out of Chronic Town evaporated, like the dregs of a puddle succumbing to the midday sun. I was numbed by the morphine, but still in a lot of pain. This is what is left, I thought, as I lay as motionless as I could on the narrow hospital bed. It sounds terribly melodramatic to write what I thought. I had lost all perspective. I spiraled down the mine shaft of loss and fear. This is going to kill me—and soon. Andrew will never remember me. Jay is already letting me go. I will shuttle between the hospital and my bedroom a few more times, and that will be it. No more writing, no more traveling, no more drawing with Andrew, no more curling up next to Jay, no more reading, no more dreaming, no more making to-do lists, no more watching the seasons unfold, no more feeling the crunch of the ground under my feet, no more bike rides, no more coffee dates with friends, no more life, the end—and I hadn’t even really gotten started.

But it wasn’t the end—or the beginning of the end. The sarcoidosis specialist called the local doctor and recommended they try a drug called Rituxan on me. It’s a chemotherapy agent used to treat lymphoma—and more recently rheumatoid arthritis—so it was a long shot. They thought it might help with sarcoidosis, but there was very little data to back up their hunch. (Shockingly, my insurance company didn’t balk at covering it.) A few months after I started the Rituxan, I started to feel better. It didn’t happen all at once. But slowly and surely I became healthier. My vertigo, blindness, and pain decreased, so that I was able to taper off the narcotic pain medicine. I was able to work for a couple of hours most days. I regained the ability to drive. I volunteered in Andrew’s classroom.

Even though I was feeling consistently better, I was still living like the disease was at its worst and the end was near. I resolutely would not look up. Hopes or ideas would flit up, and I would crush them down. I would not allow myself to imagine what I might be able to do with my writing if I worked steadily on a project for a few weeks. I wouldn’t commit to volunteering on a regular basis at Andrew’s school. I wouldn’t start exercising again. If I could have articulated the swirl of unconscious darkness and sadness that dominated my mind, my thoughts would have sounded like this: I’ve been on this street before. Give into that hope and the bottom will fall out again. That hope will burn you when you’re back in the hospital, back in chronic town, back in hell. Once you start caring again, the disease will roar back and curdle that caring into bile that you’ll have to swallow every morning until you learn again not to hope. It was the pessimistic magical thinking—some rough equation along the lines of “if I think I’m better, I will get sicker and it will be harder to be sick because I’ll have come alive again and will have to squash down all that life.”

But then a whole different kind of magic happened and claimed me.

Jay surprised me in June with two tickets for two weeks in Scotland to honor my upcoming 40th birthday. He had already made arrangement for Andrew to have his own vacation—a week on my parents’ ranch and a week at Andrew’s beloved cousins’ in Denver. He had a car rented. All I needed to do was to help plan an itinerary to explore a country I have yearned to visit for years.

This is one of the nicest single gifts I have ever received—up there with the surprise wedding and baby showers my sister and mom engineered. By making the trip—and the childless aspect of it—happen without first consulting me, he protected me from weeks of worrying. Was I worth such an extravagant trip? What if I had a relapse and couldn’t travel? Would we ruin Andrew by leaving him for 15 days? What if my neurosarcoidosis roared back to life? What if I broke another bone? What if my defibrillator malfunctioned?

Jay was nice but firm. Andrew would be fine. If I had a medical crisis we would deal with it. If I felt poorly over there, we could have a very mellow trip and spend our days hanging out in cafes and pubs. Worse things have happened.

I stopped fretting out loud, and even managed to silence most of inner Greek chorus prophesying doom and destruction. But I resolutely refused to help plan the trip. Every time I opened the guide book, my heart would start hammering, my stomach would lurch, and I couldn’t breathe. It wasn’t that I was worried about the logistics. I was deeply terrified to start caring and hoping for the trip. In the twisted back alleys of my mind, I was still indulging in dark magical thinking: if I start to want the trip, I will lose the trip, and then I’ll feel unbearable grief, and I can’t take anymore grief, so I won’t want the trip.

Time did what it’s so good at—it rolled by without pity or cease—and suddenly it was time to scramble and find some kind of lodging for our first nights in Edinburgh (because The Festival—a huge city-wide theater and music extravaganza that draws global acts and thousands of visitors—would be starting soon after we arrived). Jay found a guest house not too far from Old Town and encouraged me to spend some time with Lonely Planet Scotland so that we could plot out a rough route. Somehow I was able to articulate to him—just as I was making sense of my dour inner mood to myself—that if I constructed a travel route through the Highlands or the islands or Cairngorms National Park or the castle-rich historic trail and then I wasn’t able to follow it, I would be disappointed and feel like I was letting us down. I also talked it through with my friends Jan and Didi—who are globetrotters with kids—and they reminded me that even before chronic illness, I chose to travel without carefully crafted itineraries. Jay and I have always preferred to make things up as we go along in New Zealand, Australia, Thailand, Palau, Vietnam, Cambodia, Iceland, and road trips around the U.S. Why try to force myself into an uncomfortable schedule that has never enhanced my traveling experience?

We dropped Andrew off at my parents’ on July 30. I was excited, but watching him wave good-bye caused my stomach to quaver. He looked small even before distance diminished and then erased him. We spent a night in Denver, flew to Newark the next day, and then on to Edinburgh.

Being me, I couldn’t hold onto positive thoughts—Andrew will be fine; he’ll be empowered to have his own vacation; my health has been improving; I will take good care of myself on this trip, so there’s no reason to expect a physical meltdown; worrying about a crisis won’t prevent it from happening; the purpose of this trip isn’t to log maximum miles and check sites off some diabolical “to do” list for striving travelers; the point is to have time with Jay, see a place I’ve dreamed of, and have fun. Instead, I imagined every possible horrible event that might happen to my son, my relationship with Jay, and my body—and then tried to stop imagining them mid-thought.

Although I couldn’t articulate it to myself at the time, I now know that much of the sturm und drang raging on the surface of my mind was really masking a deeper fear that was too frightening to name about my marriage. Jay and I were coming through a dark time. The details aren’t important. What mattered to me is that we were doing so much better that I trusted his love again (most of the time), and I desperately wanted this trip to be a sort of victory lap for love. We had climbed back into the light and now we could relax into one another’s presence with no distractions or obligations. Even though I knew in the quietest part of my heart that “things” were better between us, I couldn’t stop the Greek Chorus from reminding me of everything that could go wrong, that might be wrong, that was wrong.

Traveling was something Jay and I had loved doing together before I got sick. Traveling brought us closer and made us feel more alive. We spent 16 months living in Palau—a country of tropical islands swimming in the cerulean Pacific Ocean between Guam and the Philippines—before Andrew was born and I got sarcoidosis. We spent weeks in Asia and had planned to return to the Pacific and live in Cambodia or China for another year or so when Andrew was in school. We had somehow managed to make two big trips with Andrew even after my sarcoidosis had become quite serious—but none with just the two of us.

What if Jay and I couldn’t relate to one another anymore, without Andrew there as a sort of glue to our relationship? What if I wasn’t well enough to travel up to Jay’s expectations? What if I got really sick again and couldn’t get out of a strange bed in a Scottish hotel?

Underlying the chatter of worries was really just one fundamental dilemma. I was comfortable living small and living sick under the shadow of the charging buffalo. Taking this trip to Scotland felt akin to dressing myself in red, grabbing a toy sword, and thinking I could play matador to the sarcoidosis monster that would surely come lunging, snarling, heaving, and huffing at me if I caught its attention.

I was wrong—about all my worries. The monster stayed in its cave. Jay and I got along swimmingly. I realized that I actually liked this guy. I had only one “sick” day in Scotland. I turned out to be stronger and healthier than I could have ever dreamed of being. We spent 13 very busy days in a magnificent country. I’m not going to bore you with a travelogue. But let me tell you that I was able to do more, see more, and appreciate more that anyone—including, and perhaps especially, myself—thought possible. I was able to hike, walk on beaches, drink beer in pubs, and (drum roll please), I climbed a mountain. It just sort of happened. Jay and I had been doing some mellow hikes. Our route one day took us by Ben Hope—a 3040 foot peak. “Let’s just walk a little way on this trail,” we said as we laced up our hiking boots. But the climb was so spectacular, and it felt so good to push my body in the way I once had, that we just kept climbing—past one “false” summit, then another, until we reached the top and were privileged with jaw-dropping views of rugged mountains, wide open green glens, and the sea crashing in at the horizon’s edge. It took us 6 hours (much longer to get down because of my crappy knees), and at times I was walking so slowly it probably looked like I was at a standstill. I sounded like a badly-tuned locomotive, and I couldn’t bend my legs the next days. But, damn it, I got to the top. I was alive and full of life. I was at the top of the world, with the wind whipping the sky above us. I held onto Jay’s hand and wept because it was so beautiful and I was standing there holding my beloved’s hand.

It was magical. I can think of no better word to describe Scotland and our time there. We had Neolithic standing stones (very much like Stonehenge) to ourselves. We wandered alone on white sand beaches next to water that was so azure and clear we could have been on the Caribbean (until we dipped our toes in and got a quick reminder this was the North Atlantic). We climbed up to—and then around—the ruins of a medieval castle in my ancestral homeland (MacKay country—in the Northwest corner of Scotland). I felt so grateful to be there, to be there—in love—with Jay, to be well enough to explore, to be alive. I had thought my time was done, that I had nothing ahead of me but pain, medicine and death, but instead I climbed my way to the top of Hope. No shortage of symbolism there. Standing at Ben Hope’s summit or clambering across the giant, smooth cylindrical rocks at Oldshoremore Beach, or cracking open fresh crab in a tucked-away sea-side village, or driving through wide-open valleys with Jay cracked me open again. I had been hiding under a rock. And Scotland lifted it from me with one effortless toss.

I missed the hell out of Andrew by the trip’s end, but otherwise, I didn’t want to come home. I didn’t want to get wedged under the rock again. I didn’t want to go back to living small, living in fear, and living without hope. I was also worried that there really was something innately magical about Scotland and that the wondrous spell of healthiness and possibility it had woven over me would disintegrate and I would go back to being sick, tired, and hopeless.

But it didn’t. I was able to help Andrew start school. I got involved with a volunteer organization that supports Montessori classrooms in our public school system. I cooked dinner. I dug our dining room out from under a summer’s worth of Andrew’s projects. I signed up to send myself to a writer’s conference. I spent some time working on an article for High Country News.

And then I got sick. I caught a cold from Andrew which turned into a nagging and disruptive sinus infection. The sinus problems set off the “bells and whistles” of neurological problems. My monthly dose of Rituxan made me violently ill. I had a terrifying reaction during the infusion—my tongue swelled and my throat closed so that I couldn’t breathe or speak. The Rituxan also left me nauseous an exhausted.

But something strange happened. I had a long afternoon when I let the Greek Chorus get going. “Oh no! This is the beginning of terrible times.” Yet, ultimately, I didn’t give in to despair. I felt physically rotten, but I didn’t let it infect my spirit. I held onto the magic of Scotland and to an awareness of gratitude. I had to stay in bed until I felt better, but then I got up and around as much as I could. I’m not well enough to summit any small mountains right now. But I’m writing this, organizing a major fundraiser for a school organization, and even teaching a reading group twice a week in Andrew’s classroom. It might not be a long hike, but it’s summitting another kind of mountain altogether—daily, happy life.

This is the life I have. I am often sick. I have a chronic disease. I live in Chronic Town. But that doesn’t mean that I’m not alive, that I don’t have projects and plans to look forward to. I am not giving up on it again, if I can help it. I am not going to scratch out a small life because I’m afraid of disappointing myself or letting myself (or others) down. I’m not going to live in the dark shadow of what might fall apart, fall down, or fall on me. I’m going to live. I’m going to live in Chronic Town, and I am going to keep my foothold on the summit of Hope.

14 Comments

  1. Marianne Hansen Rencher said,

    My friend heard David McCulloch speak. He said one thing he has learned researching history is that most people just make it through every day doing the best they can. It’s at the end that others see the contribution. George Washington just did the best he could every day and then ended up on two pieces of currency!

  2. Marianne Hansen Rencher said,

    Let’s try David McCullough

  3. Martha Kohl said,

    Definitely worth the wait.

  4. Amy Pridemore said,

    You words fill me with sadness for all that you have been through and yet inspire me for where you are going. I can’t wait to see!

  5. Paul said,

    It is so great to hear – I hope this turning the corner is permanent.

    • Rebecca Stanfel said,

      Thanks, Paul, Me too. And if not, I hope I can keep trying not to live small.

      How the heck are you? Hoping you are doing really well.

      xo
      rebecca

  6. Drew dixon said,

    Best story I’ve heard in months.

    • Rebecca Stanfel said,

      Thanks, Drew!

      Jay send his best and hopes you are doing well.

      I really appreciate your reading and taking the time to comment.

      Best,
      Rebecca

  7. Patricia said,

    Wonderful piece, Rebecca–just beautiful.

    Knowing that the monster is still there, I myself sometimes stuck in expectation of its return even when it has left the room for days on end. Waiting for the other shoe to drop leaves me afraid to even admit out loud when things are good or just neutral (“in case the gods hear and decide to squish me sooner than they would have otherwise”). The flip side of this is trying to control one’s life (and thereby avoid one’s life) in an effort to dodge the monster altogether.

    The monster will return in one form or another, that much is certain. Even if we beat our current monster, others await us all. Knowing this can be a relief from the effort of living in or ducking its shadow…there’s no appeasing the monster, either by doing everything right or by seeing monster in everything. The monster will return, so I can forget it and focus instead on all that is Not Monster. The monster becomes less important, sometimes almost a surd.

    What’s hard for me to lose is the desire to be prepared for the worst. It’s such a bigger part of my hard drive than being prepared for the best (who would even think of that?). I’ve spent an embarrassing amount of time imagining the worst in order to prepare for it.

    I also resist the “What you feed will grow” belief because it can be dangerous in the face of chronic illness if it becomes one more source of responsibility for our own suffering. But maybe it can be helpful if it means that lessening the monster-focus can release us from being blocked into being opened, if it means that good moments are just as real, just as true, as bad, and if feeding gratitude in turn feeds joy which in turn helps get us through the next monster-trampling.

    Thanks for everything–this is one place where I can sit and think for a minute about this stuff!

    PS: Let’s catch up soon–maybe on fb?

    • Rebecca Stanfel said,

      Thank you so much Patricia for these nice comments. It always means a lot to me when I hear from you that my words have resonated with you because you just get it when it comes to struggling to live well in Chronic Town.

      Funny that you mention gratitude. I think being able to recognize the thousands of blessings I have each day is the best way to stave off worries about the monster. But it’s hard to cultivate this mind-set. A friend recommended that I try keeping a gratitude journal, in which I record 3 things to be grateful for each day. I am going to give it a try.

      I would love to catch up. I will look for you on FB. And if you ever get a lull in the madness of motherhood/managing life/working give me a jingle. My cell number is the same old one. Haven’t ditched my Sacto prefix.

      Take care of yourself,
      Rebecca

  8. Wendy Barron said,

    You are remarkable. And so is this piece.

    I think you and I must have been in Edinburgh around the same time, because we were there during Festival, too! Madness, it was. Especially in Old Town. And I also loved Scotland. Oh how I loved Scotland. It felt like coming home, like reconnecting with a part of myself I’d always identified (“I’m Scottish”) but that I didn’t really feel until my feet touched Caledonian soil.

    • Rebecca Stanfel said,

      Thanks, Wendy! I so hear you about the unexpected feeling of coming home. My Dad was adopted and he recently found out that his birth father was a Scottish American named Mackay. We happened to spend some time in Mackay Country on our trip and it was bizarre and oddly comforting to be among people who looked like me. It was the genetic equivalent to the sense of “Wow, I’m among my people” that I felt at SiWC.

      We missed most of the Festival because we headed out of Edinburgh just as it was starting. But we had a small sense of the chaotic wonder of it because we were there during the opening of the Fringe. Wow! I want to go back and dive into the Festival next time.

      We’ll have to swap Scotland stories next year. I really appreciate your reading and commenting on my blog.

      Cheers,
      Rebecca

  9. Trichelle Marshall said,

    This was so beautifully written. I was diagnosed with pulmonary sarcoidosis in October of 2011. I am single with 3 teenagers and was basically bed-ridden for 10 months before my diagnosis. I now work and walk a mile to and from work. Work is my “Scotland”. For a few hours a day, I connect with strangers, admire their treasures (I work in a very nice second-hand store) and get nostalgic when I see something as simple as a Tupperware bowl that reminds me of my Dad making pancakes on weekend mornings.

    • Rebecca Stanfel said,

      Hi Trichelle,

      Sorry for my delay in writing back to you. Thanks for the kind words. I’m so glad my writing resonated with you. Being able to work–after being bed-ridden for so long–is such a triumph (and to walk there too). This is inspirational for me. My work life is erratic after getting sarcoidosis. There are some days I just can’t get out of bed. But it gives me hope to know that you were able to turn things around so dramatically. I love how you describe your work.

      Please stay in touch. I try to post somewhat regularly, and I’m in the process of opening up a forum section of this blog–for all of us to be able to chat about what’s important to us. It will take a few weeks to get up and running, but I think it will be wonderful.

      In the meantime, thanks so much for reading and taking the time to comment.

      Keeping enjoying the treasures that come your way!

      Rebecca

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