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Coming Home to Chronic Town

Posted Nov 19 2009 10:00pm

I have disappeared from this little niche in cyberspace for quite some time. My absence was deliberate. I took a break to think about whether I wanted to keep writing for this blog. In these weeks away, I’ve learned how important this outpost in the wild territory of chronic illness is for me. I’m writing today to say that I’m back. And I’m back to stay.

In my last entry, I explained why writing the way I do here—instead of just posting snippets like most other bloggers do—was an effort I was beginning to question. I was sick and exhausted from both sarcoidosis and the treatments that control the disease. I wondered if I should be using my limited time and energy to write material that had the concrete rewards every author seeks—publication and payment. I had an agent waiting for chapters of my proposed memoir that explores the same terrain as this blog: becoming chronically ill at nearly the same time I became a mother, and then trying to live fully while perched on the cusp of these two divergent worlds—the blossoming life of my now five-year old son, Andrew, and the constant pull towards illness and death from the sarcoidosis. But I wasn’t making much headway on the book because I was getting chemotherapy every other week, and this left me with barely the energy to shuffle into the shower, much less construct a coherent sentence. Given this hard reality, it seemed imprudent to expend my precious resources on something as nebulous as a blog.

Fortunately, I was sensible enough not to shut down the site. Instead, I allowed myself to drift from my blog. I gave myself time to work on the book chapters. They’re still not done, but I made progress. However, I didn’t use the time freed up by not writing for the blog to work more on the memoir. Instead, I slept more, moped more, listened to more books on my ipod, and felt more deeply mired in the brutality of my chemotherapy regimen. I also found myself feeling lonely. I was surprised by this because I have a kind husband, two supportive extended families, and friends both near and far who help Jay and me in ways too numerable to describe. I’m on Facebook so I can have daily connections with friends and family, even on days when I’m too sick to pick up the phone and talk. But still I felt an aloneness that gnawed at me.

After pondering my new loneliness for a while, I understood that it was connected to my absence from my blog. Some background will explain why. You see, I was undone when I was diagnosed with a disease I had never heard of in 2004, and then became sicker and sicker no matter what the doctors did. I had felt like my life was just getting started, and suddenly, I had doctors coldly telling me it might end at any moment. Everything I had planned for my life changed seemingly overnight. I became too sick to work; the prednisone the doctors prescribed to control the sarcoidosis made me so hungry that I ate constantly and gained nearly one hundred pounds. I was too sick to care for my beautiful new son, Andrew, so we had to hire nannies to help. I went from being an athletic, energetic woman with dreams of traveling, writing, and growing our family to a fat, exhausted woman whose only notion of traveling was watching the disease zip from organ to organ in my body. Instead of working, I went to doctors. Instead of hiking with my husband and son, I ate incessantly to quiet the hunger caused by the drugs and my hunger for things to return to how they were.

But I was determined to snatch something positive from all these negative experiences. This blog was my attempt to do just that. I knew I couldn’t be the only person in the world going through the unwanted changes wrought by sarcoidosis. I knew there were dozens of other chronic illnesses and millions of other people who lived with them. I knew I couldn’t be alone in trying to make sense of a new set of circumstances without any kind of guidebook. So when a friend showed me her blog, I had an epiphany. This was how I could make my mark on the enormous chalk board of illness. My goal when I launched the site was to create a community. My hope was that if I wrote about my own experiences with chronic illness, maybe other people would relate and not feel the aloneness that I did. I grasped that being sick too often takes us away from everything familiar. This transformation is so profound it is like moving to a new place, so I named my blog Chronic Town. I envisioned all of us with sarcoidosis, lupus, cancer, multiple sclerosis, or any of the other chronic diseases transported to a strange new city. And it was strange. In Chronic Town, hospital towers loom larger than any other building, and the person you thought you were is a different one altogether. By writing about my experiences, I hoped I could turn a metaphor for a state of being into a true community. I could build a safe house in this frightening world of sickness. However, what I hadn’t understood when I thought I might shut down the blog was how much I relied on the solid walls of this house.

After dealing with sarcoidosis for over five years, I thought I had the lay of this not-so- new land. But I don’t. In Chronic Town, the crooked streets are confusing. Just when I think I know where I am heading, one of these streets will double back and bring me virtually to where I started. I am forever getting lost, and the city has no maps. To get around, I need guidance from others who have stumbled on these same roads. But unless I look carefully, I can’t see the other people walking with me. These people have helped me find my way in the darkest nights. For the years I have written faithfully for this blog, I received a steady stream of comfort and motivation to keep fighting the disease from readers who wrote comments, sent e-mails, or called me. They were kind when I needed kindness. And when I was trapped in self-pity, they told me to get moving. They told me their stories, their ways of picking themselves up when they fell down. But when I stepped back from my blog, I lost this support. Without it, I have come to understand and more fully appreciate how the help from other citizens of Chronic Town is different from the love and kindness I receive from my husband, parents, family, and friends. Even Jay, the person closest to me, can only imagine the level of fatigue I feel, the disappointment that courses through me with a setback, the literal pain in my heart that comes at seeing Andrew’s five-year old version of stoicism when I am carted off to the hospital one more time, or the spark of hope that flares into a bonfire with good medical news. But the other residents of Chronic Town got it because they had felt it too. Knowing them and learning from them was a salve to the feeling of being terribly alone with a terrible disease. When I severed my connection with this community, I lost this balm.

When I was calculating the investment of the time and energy I put into writing for the blog, my equation was inaccurate because I hadn’t accounted for unknown variables. True, I’m not earning big bucks (or any bucks, for that matter) when I compose these essays. But the sense of community I gain is a factor beyond worth. So too is the bridge my writing has built to others without chronic illness. I’m not sure my friends and family would have the empathy and compassion that sustains me if it weren’t for the writing I did here. Because I have a deep fear of whining, I become tongue-tied when it comes to voicing my physical pain, my unending tiredness, my setbacks, the difficulty of chemotherapy, my fear of dying, or my struggle to mother and work when I feel indescribably lousy. Without the blog, I don’t think even the closest people in my life would have a sense of my reality. The other day Jay asked me if I planned ever to work on the blog again. I was surprised when he said, “I miss knowing what’s going on inside you.” Since abandoning the blog, I’ve noticed that while my friends might know the events of my life from phone calls, e-mails, or Facebook updates, it’s hard for them to understand the impact of these happenings. For instance, a recent serious ankle injury—which came just days after I got relatively good news from my sarcoidosis specialist in Cincinnati—derailed me physically and emotionally. When I told people about the ruptured ligament, they were solicitous and offered help. But most friends were puzzled that I was so upset about what to them was just another sarcoidosis-related hurdle. I lack the verbal skills to explain scenarios like this one. But I can write. While I never intended to have my blog be educational about the hardships and happiness of life in Chronic Town for those outside the walled city, it turned out to do just that. Readers e-mailed me that they had shared the site with healthy folks so that they could better understand what it means and how it feels to be chronically ill. I’m glad that the blog served others in the same way it did me.

Another variable I hadn’t grasped was that working on the blog makes my life better. For better or worse, my primary way of understanding and learning is through words. The process of writing helps me truly see the world around me and the one within me. Writing makes me take notice. It is my best avenue into mindfulness. The essays I post have come from my heart, and writing them has healed my heart. In writing about a particular issue—whether it’s explaining something in my life that is snarled because of my illness, or relating something good that has propelled me forward—I force myself to face what is actually going on in my life—good or bad. Without the task of the blog, I have felt like a pale and fleshy mollusk that has crawled into a shell. The sea washes over me. All sounds and sights are muted. I’m safe in the carapace, but I can’t see the beauty that surrounds me; I can’t feel the sea around me.

This tide of events can feel overwhelming when it comes crashing down on me—when my ligament explodes or the chemo makes me sick. But there is also great beauty and mystery in the forces of this sea. Without writing to help me, I can’t make sense of it; I can’t find meaning in the ebb and flow. The process of taking the material of my life and weaving it into an essay compels me to find a structure and meaning—even when I feel hopeless or lost. Without writing about it, I can’t make sense of this illness, can’t see the lessons that sarcoidosis has to teach me. Before I got sick and became a mother, I was an altogether different person. I moved quickly, worked hard, and traveled far. Perhaps I wouldn’t need my blog if I was that person. But the woman I am now after five years of sarcoidosis still needs the discipline of writing to understand the shift in my life. Through writing I can grasp the achievement of being able to read to my son once again, the joy in watching a movie with my husband, and the happiness in having a cup of tea with a friend. Without writing, I see only what I don’t have.

For all these reasons, I am making a commitment to return to my blog, to post entries on a regular basis. I’m not sure what a “regular basis” means—maybe weekly, maybe more, maybe less. I’ll figure that out once I settle into my new chemo schedule and Andrew’s kindergarten routine. But I am pledging to myself to show up for my life, to take notice of all that surrounds me. I want to hear from you and about you. Send me your stories. I am thankful for the great gift of this space, for all the other folks from Chronic Town who found me and helped me find myself, for all the people outside Chronic Town who bless me by understanding. See you soon.

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