Back in Chronic Town

May 18, 2020 at 3:11 pm (Uncategorized)

It’s been nearly three years since I’ve posted something here.

There are a few reasons I stopped posting.  Looking back now, I can see that I felt like I ran out of things to say about my chosen blog topic—trying to live, love and parent as fully as possible with a chronic illness.  My life during the first year of my silence online would seem familiar to anyone who was a loyal reader.  Pain, sickness, time in the hospital, time out of the hospital, time back in the hospital.  Sometimes I struggled to feel at home within my family, feeling like my illness was an impassable boundary that kept my husband, Jay, and my son, Andrew, from ever fully reaching me.  Sometimes I was able to put these fears aside and enjoy a funny story at the dinner table, a cup of tea with a good friend, an evening watching TV with Jay.  I’d written about all this before, and every time the cycle of my health and my emotions turned over, I started to feel like a failure.  Back in 935 BCE, the writer of Ecclesiastes got it right. “What has been will be again, what has been done will be done again; there is nothing new under the sun.”  I couldn’t bear it anymore.  Writing about it made it extra oppressive.

I hit one of my lowest lows in the summer of 2018.  I spent another three months in the hospital.  Instead of the usual vertigo and head-splitting pain that had characterized my neurosarcoidosis for years, I began to have debilitating gastrointestinal issues.  To be blunt, I puked all the time.  I couldn’t even keep pills down.  Maybe because I was more aware of this hospitalization (because I didn’t need high-dose narcotics to manage the pain in my head); maybe because my local doctors were overwhelmed at having me back in the hospital with more inexplicable symptoms they couldn’t help me with and my insurance company breathing down their necks to fix me and stop spending so much money on me; maybe the cumulative toll of fourteen years of serious illness hit me in one giant wave.  Maybe it was all of these or none of these, but I simply could not cope with thinking about sickness—much less writing about it—anymore.  I found new doctors who worked with old doctors who helped figure out what was happening to me.  The disease was attacking the nerves that controlled my digestive tract.  I was also diagnosed with medical PTSD.  I decided to put all of my thoughts and energy into my family and getting as well as I could.  I would only think about sarcoidosis when sarcoidosis made me think about it.  I stopped writing for the blog and set aside my goal of writing a book-length memoir version of it.  I was officially sick of being sick and decided never to write about being sick again.  When I was sick, I would deal with it; when I was feeling less sick, I would put it out of my mind.

Something miraculous happened after that last hospitalization.  I don’t like to write about it or talk about it, for fear that I will somehow jinx myself.  (I just knocked on my old wooden teacher’s desk.)  Here it is in a nutshell: I’ve gotten a lot better.  I am not well.  I still operate with about 60 percent of my old energy on my best days.  I still need handfuls of pills, needles filled with medications, and monthly infusions of other people’s immunoglobulin to keep me going.  I still have days when I have to retreat to bed.  But no hospitalizations, no periods of illness that stretch indefinitely into the future.

All of that puking started me on a path of weight loss.  I continue to struggle with nausea, and that, combined with feeling well enough to exercise some days, has helped me lose 105 LB.  I went from a size 24 to a 12.  Even better, I’ve been able to go hiking with Jay and Andrew.  The other day on a walk, Andrew said, “You’re going kind of fast, Mom.”  This is from the 16-year old who usually strides ahead of me a few feet.  My greatest joy in feeling better, though, has nothing to do with the clothes I can wear or the possibility of seeing an abdominal muscle.  I have been able to be in my son’s life in ways I had always hoped and planned to be, but never could be in any consistent way.  He is a teenager, so it’s not like we’re spending all our time together.  I see his closed bedroom door more than his lovely face, which I know is as it should be.  But I have noticed that he laughs more with me, that he gets mad at me again, instead of tiptoeing around me.  He relies on me when Jay travels for work, and gets annoyed when I don’t live up to his expectations.  This is thrilling.  My relationship with Jay has changed too.  He in no longer primarily my caregiver.  His work life has blossomed, in part because he can count on me to run things when he is gone.

I continue to work through the trauma that so many years of hospitalizations, surgeries, rounds of chemo, invasive tests, and gruff doctors who told me things like “You could drop dead at any moment” created.  I am more anxious that I used to be.  Perhaps this is partly physiological.  I am off so many of the narcotics that numbed me emotionally, as well as helped with pain.  But, as anyone with a chronic illness knows, I also live with an acute awareness that the other shoe could drop at any time.  In years past, I had better times too, and they always ended without fanfare and delivered me right back into a narrow hospital bed.  One time, I went literally from being on a hiking trail with a friend to the hospital the next morning.  I try very hard to live in the moment I have and not worry about tomorrow.  But this does not come easily to me.  I think this is my life’s work—to accept who and how I am now.

Like the rest of you, my life took a sudden turn with the arrival of the coronavirus.  I doubt I would be writing this if it weren’t for the pandemic.  I have been concerned about my health.  I am both immunocompromised and have an underlying chronic respiratory disease.  My sarcoidosis specialist has been clear that I would likely have a “bad outcome” should I get Covid-19.  I’ve been reading and thinking a lot about this pandemic and realized that, along with everyone else in Chronic Town, I have a unique perspective on this chaotic time.  Years ago, I learned to do what we now call sheltering in place.  All the immunosuppressants thrown at my sarcoidosis made me too vulnerable to venture out into the world.  I’ve watched on Facebook as people chafe or accept realities that seemed normal to me years ago.  On a deeper level, though, I think my time in Chronic Town has prepared me to accept that all of the “givens” we humans rely on to be able to sleep at night—that our work will be there in the morning, that our lungs won’t dissolve because of a virus, that our children are gliding towards an acceptable future—are illusions that can vanish in a moment.  I look back on my sixteen years in Chronic Town and see the losses tailing behind me like a boat’s wake: my work, my health, my relationships, my future, my independence, my physical strength, my dignity.  I see many Americans quite rightly struggling with similar losses now.  I also understand their desperate flailing, almost a petulance, that they deserve their “normal” back right freaking now.  No more lockdowns.  No masks that remind them of their fragility.  No extra measures.  I’ve been there in my own ways before, sticking my head so deeply in the sand to maintain an illusion of a reality that is gone.  This doesn’t mean these flippant virus-deniers don’t make me angry enough that I can’t breathe sometimes.  Their insistence that it’s all about what they want in this moment make my life and the lives of anyone with an underlying health condition exponentially harder.  I want them to grasp that all of these losses need to be grieved, and that eventually we can rebuild.

Using the lens that chronic illness has given me to think about our new Covid world, has prompted me to start writing again about health issues.  I’ve been trying to use my personal story as an entrance into broader topics that affect us all.  I have a couple of essays that I’ve submitted to different national publications.  But they had the audacity to turn them down!  Rather than let them collect metaphorical dust on my hard drive, I have decided to post them here, and to take up musing in this space again.  Maybe having the New York Times repeatedly reject everything I produce is a new opportunity–to rebuild community, to circulate some old ideas in new ways that could be helpful to others.

Perhaps there is something new under the sun. Or, at least, a new way to think about the same old stuff.

Be well.

5 Comments

  1. Ish said,

    I am so glad you decided to get back to blogging again. You have captured everything about how you feel and what these trying times are doing to us all so beautifully. Keep writing !

    • Rebecca Stanfel said,

      Thank you Ish!

  2. Sandra Ahten said,

    Oh Yay!!! You are experiencing a recovery. I am so deeply happy for you. And excited that you are writing again. Do what you can to keep us posted. I can’t wait to read your submissions!

  3. K.Norane Appling-Freistadt said,

    What a great piece of writing, Rebecca! Mostly I am so very happy to know you have escaped any other episodes since we have spoken—what seems like ages ago, but I know it was not that long before the shutdown. With such a trying health history, it is wonderful that you are doing well now. So very thankful for you in my life, and wish for a time when we can see each other more. I am working halftime at a new job, still seems like more than I want to do, but at least there is time for some other parts of life other than working!

    • Rebecca Stanfel said,

      Thanks, Norane…hope you and yours are well

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