Coming Home to Chronic Town

October 24, 2009 at 3:19 pm (Uncategorized)

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.

15 Comments

  1. Sharon said,

    thank you for coming back to the blog. I’ve missed reading your words, hearing your story, sharing your thoughts. Thank you for letting me be a resident of Chronic Town. I have CVID (immune deficiency), Lupus, Adrenal Insufficiency (probably Adisson’s disease), diabetes type ll.

    Sharon

    • Rebecca Stanfel said,

      Dear Sharon,

      Thanks for welcoming me back. I can’t imagine the number of issues you must deal with–given the long list of complicated diseases you must struggle through. If you ever want to write something about life with CVID and lupus and all–and want to post it here, I would be happy to do that. Know that my thoughts are with you.

      Rebecca

  2. Andrea said,

    Thank you! What you’ve said about keeping the ‘outsiders’ connected to life inside Chronic Town is true. Your writing is beautiful and insightful and not only helps me to more fully understand you and others living with chronic illness, but also to gain insights into myself, life itself, and the world around me. You really have a gift in writing and I appreciate your sharing so much.
    Andrea

    • Rebecca Stanfel said,

      Dear Andrea,

      I really appreciate all the nice things you had to say! And I’m glad that I can help keep you connected to me and to us because we really miss you. Know that we talk and think about you nearly every day.

      Rebecca

  3. Patricia said,

    Yay – you’re back to CT! You’ve nailed it again. For me so often the loneliness is the last straw, in a way; it’s what creates suffering out of pain. For some reason our design makes communication a salve, community a partial but very effective solution, even in the worst of times. It’s just as true for emotional illness as for for physical illness. Thanks for reminding us of that!

  4. Rebecca Stanfel said,

    Dear Patricia,

    I am honored that you take the time to read here. You are right– we are designed to find consolation and hope among others. It is a lesson I learn and re-learn and re-learn again, about fifty times a month. One of these days, it will stick, but until then, I’ll just keep learning it. I hope things are well with you. You’ve been in my thoughts a lot lately.

    Rebecca

  5. Cheryl said,

    Rebecca,
    I’ve checked on this blog at least once a week since your last blog. Glad to see you’re back!

    I too have sarcoidosis and was diagnosed when my son was 8 mos old. It was a punch in the gut after struggling most of my 31 years and dealing with tragedy after tragedy.

    I am on a different route. I have refused Remicade and the others deciding to take my chances with “alternative” therapy. Like your struggles with traditional treatment, I struggle with “What if I’m making a mistake?!” not listening to my doctors…. who knows.

    This is a lonely disease and very misunderstood, I’ve stopped telling people the name and just say “I have and autoimmune disorder like Lupus…”.. I also would like to smack most doctors who act like it’s nothing.

    Glad to see you’re back and I look forward to reading more.

    • Rebecca Stanfel said,

      Dear Cheryl,

      Thanks for writing. We have a lot in common, in terms of our disease process. I also got diagnosed when my son was a baby (in my case, he was 3 months old when I was diagnosed). I’ve been told there’s some interesting research about the connection between sarcoidosis and pregnancy. I was also in my early thirties when I had my baby. And I also had a few challenges earlier in my life, and was just starting to feel as if I had gotten through the worst of things when I got really sick.

      I completely respect your decision to use “alternative” therapy. In fact, I’ve thought about choosing your treatment path (or, at least, a treatment path not deemed “acceptable” by the conventional medical authorities). Sometimes, after a chemo infusion, I am filled with doubt about the decision I made. But, I was so very sick when I chose to follow advice to get cytoxan (the chemo agent), remicade, and thalidomide (which I’m now off), that I was open to extreme suggestions. The disease had moved into my brain, and I was unable to get out of bed most days because the sarcoid had caused inflammation of the cranial nerves that control balance. I am a lot better, but I often ask myself if this improvement is from the toxic cocktail of drugs or just the passage of time. I think if I relapse significantly, I might rethink treatments. I know there are other theories about the disease– that it’s not auto-immune, but actually an infection. I’m sure you know all this and more. I guess I’m just using too many words to say I understand doubts about treatment and I understand choosing something besides what conventional medical authorities recommend. I think you are very brave.

      I also understand the loneliness. I too always say that my disease is a lot like lupus, right after I give the name. It won’t be long before I too get too frustrated to keep speaking of sarcoidosis, and then seeing the blank expression and then trying to explain. Speaking of smacking someone, I’d really like to whallop people who tell me after they’ve heard my spiel, “But you don’t look sick.” And yes, why does the average internist or family doctor think that just because many cases of saroidosis resolve without treatment and stay in the lungs that ALL cases are that way?

      I hope you feel better soon, that you won’t need to explain the damn disease to anyone for much longer. I still believe we can go into remission. As I told Sharon, if you ever want to write about your experiences with a chronic illness and would like other people to read it, I would be happy to make the space here available. I know you probably don’t have the energy to write, but if you feel better and want to tell us what it’s like to live in chronic town while getting alternative treatment, just let me know.

      Thanks for writing a comment. Hang in there. You are in my thoughts.

      Rebecca

      • Cheryl said,

        Rebecca,
        I would love to write about my experiences.

        I lost my mother at 31 (when I was 13) and being diagnosed with this 2 weeks shy of my 31st birthday was like a cruel, heartless joke. I know all to well how it is to grown up without a mother.

        I have to say, your blog, even in your darkest moments has helped me tremendously. Reading your journals make me feel less isolated. It’s hard for people to truly understand what it’s like to walk this path (or stumble).

        I stay away from the sarcoidosis boards now. I avoid them like the plague. People are very negative and I do understand, really I do, I’ve been there time and time again. But I could not handle it anymore. I had to stop reading, crying, reading crying…. I had to find my own way. I found your blog by accident through a wellness site.

        You are right, we do have a lot in common. I also have cranial nerve involvement but mine fancies good ol’ cranial nerve 7. I’ve had palsy twice. I also have small fiber neuropathy, or so they say-negative biopsy. I am so sick of “The test is negative but that does not mean you don’t have it”… really? Than leave me ALONE!!! Sigh.

        I am on Prednisone- weaning AGAIN (5mgs per day). I also took the plunge and got pregnant over the summer but I relapsed in my 10th week with palsy. So much for those pregger hormones! I am praying to make it through and it does not help when my OB makes me feel like a freak show.

        There is a lot of “bacteria” research. The MP for me is not practical with a near 2-year-old so when I have this little boy (God willing), I will try an alternate therapy called LDN. I am overseen by the Cleveland Clinic and am very honest with them about things I want to try first and I get the over-the-phone pause and probable eye roll from my neurologist… LOL!!!

        I am on Facebook. Would love to keep in touch with your progress! .

        Hope your balance issues are getting better and that smart little boy of yours is enjoying Kindergarten!

        Best to you and yours,
        Cheryl

  6. Patricia B. said,

    Hi Rebecca,
    I’m so glad you’ve found your way back to the blog. You write with such honesty and you give so much to your readers. And it’s great to know that this work sustains you as well.

    I like being able to read here and get more than just a glimpse into your life.

    • Rebecca Stanfel said,

      Thanks for reading, Patricia. It means a lot to me that you do.

      Rebecca

  7. Nancy said,

    Glad to see you stepping out – the whirling tumble of Sarc life can be such a huge eraser. Between the disease, it’s destruction, and life, I too had become invisible to myself…again. Your words and insights have been new lenses in my glasses more times then I can count – Thanks Nan

  8. Rebecca Stanfel said,

    Hi Nancy,

    It is great to hear from you again. I’m sorry that I wasn’t able to correspond with you as much as I have wanted to during the past months. I know the sarcoid was taking a heavy toll and wanted to be able to, at the very least, listen. But I was caught in my own spiral of negativity and fear and being genuinely damn sick from the damn chemo. But I am feeling better now, and am happy that my writing helps things for you just a little. Your comments and e-mails to me have given me comfort, and also gotten me to stop feeling sorry for myself. I’ll send you something longer through e-mail. In the meantime, please know that I have thought (and worried) about you often, and am delighted to hear your voice.

    Rebecca

  9. Rebecca Stanfel said,

    Hi Cheryl,

    I’m so sorry to hear about everything you have to deal with. I’m excited for you to have a second child, even though the hormones are making the disease worse. I’ve heard that pregnancy can provide a temporary remission or rouse the sarcoid monster. Too bad you got the latter symptoms. And hearing about how your damn OB treats you makes me mad. I’d like to try for kiddo number 2, but I have to seriously clean out my system of all these poisons. Even then, it’s not likely I’ll be able to conceive because cytoxan often causes infertility. But there’s always adoption, right?

    I’ve never heard of LDN, but will do some google research when I have some spare time. I’ve heard the Cleveland Clinic is good for sarcoid treatment, but the neurologists’ “verbal” eye rolls are a familiar phenomenon for me. I’m beginning to wonder if all neurologists are just weird and grouchy. That’s certainly been my experience with them at medical facilities all across the country.

    I’ll look for you on Facebook. And I’ll post something here in a couple of days, if I don’t completely collapse after the chemo I got today.

    In the meantime, hang in there. I’ll be delighted to post something of yours.

    Rebecca

  10. Barb said,

    Rebecca,
    Wow
    Glad you can write
    I had to read this twice.
    First time through, my focus went to my fascination and admiration of your word weaving magic.
    Second time was slower, taking in what you can’t express verbally. I am so grateful to “listen” to you here too.
    Thank you for taking care of yourself (and others) via CT.

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