The Space Between

It took two minutes for the pediatric oncologist to shatter our high. The large tumor found in my daughter was benign and we’d just begun to process our relief and decompress from many nights in the hospital. He stopped us cold. The tumor has a 50/50 chance of recurring, of showing up in other organs, and has a chance of metastisizing as malignant. She had to go through more diagnostic testing. And here I sit, mere hours away from this doctor telling us the results of the latest PET scan. The space between knowing and not knowing.

canstockphoto0912560There have been a lot of spaces like this over the last few weeks. Before this medical drama, I’d been pondering spaces between, mostly from a creative perspective. I’d had trouble settling down to write, often wandering out into the garden to pull weeds or getting distracted by a lit journal. In the past, I’d chide myself for being a typical amateur writer, easily dissuaded from doing the thing which I needed to do in order to be what I wanted to be. Until recently, the spaces between were called procrastination and dilettantism. But I am my own spin master. The space between would hold value.

I decided to lean into it. What was happening between writing sessions? What was happening when my brain unraveled a bit, let down its guard, daydreamed? The answer is obvious to me now – I was writing the next story. Not everything is about writing, but at this particular point in my life, I want it to be. It’s something that keeps me afloat with hope for who I can still become. Or at least it was.

canstockphoto50379204Now the space between is a barren land. Gripped by the worst fear I’ve ever experienced in my life, my brain dare not relax. Daydreams are now nightmares about will readings and empty rooms. There is no inherent value except to keep me at the edge of the cliff. It’s an unsustainable state without there being damage.

I read articles about post-traumatic stress experienced by parents who go through a medical crisis with their child. I know I’m experiencing it. Reliving the moment when the ER doctor said there is a mass in her midsection. Reliving the moment when the surgeon said that there was a 95% chance it was malignant. Unable to sleep well, needing to be in constant motion, waiting for the other shoe to drop. Hyper-vigilance, alert to the slightest sound, standing over her at 2:30am to see if she is breathing, much like I did the first time she slept through the night as a baby.

There are several bird nests in our yard. We watched, as one by one, fluffy robins began canstockphoto49843428to fall out of the nest in their first attempts at flight. The mother robin was nearby interrupting her coaxing chirrs with sharp chirps of warning. The father swooping past to ward off predators. We watched baby cardinals being fed in turn by mom and then dad. They built their nest in a bush at eye level alongside our driveway. Despite all the activity, the sound of the garage door, the yard work, the mother forced herself to sit on those eggs, alert but motionless. The space between laying eggs and hatching them and sending fledglings off in the world is one of constant vigilance.

I read about post-traumatic stress not because I wish to avoid it, cure it, tamp it down. I only want to be aware of what is happening to me. I’m a fairly unshakeable sort who is now shaken. I feel a fundamental shift in my mental state and I know, at some point, I’ll need to make choices about who I become because of this shift. It’s early yet, but the future seems more uncertain than ever. Can I find value in this space? If I can’t, it will take years off my life, feeding the fear that has dogged me the older I get – that I will waste time.

When we returned home, after many nights hearing the beeping of monitors, the changing of shifts, the weak moans from the bed, it was apparent that nothing else mattered. And it might not again. It’s hard to care about weeds or workouts or washing. My husband and I have become mother hens, constantly milling about, checking up, never out of earshot. We have whispered conversations about meds and pain and temperature checks, even as our daughter has regained her color, her appetite, and her teenage eye rolls.

canstockphoto9520842I called up friends, went out for walks, even managed to get in a few workouts. But these posts are the extent of my writing. Somehow, I have to get back to writing fiction. A friend from my writing group said that she was sure that this time would prove valuable to my writing and she couldn’t wait to see what I would do. This might seem a mercenary perspective, but it was something that I needed to hear – to be reminded that regardless of outcomes, there will be value in this space between. I just have to be willing to look for it.

Update: The scans came back negative, so onto a monitoring plan. Thanks for the kind wishes and bearing with me as I posted my anxieties. Hopefully, I can get back to writing my usual rambling posts.

40 Comments on “The Space Between

  1. My heart goes out to you, Michelle. I am not a fiction writer but it would seem that your fictional characters are not so different in their response to crisis than you. I would guess that the writing you do on your blog and in journals will, in the future, give you material for writing how your characters respond. You are putting words to universal emotions in real time, and doing it very artfully.

    Liked by 1 person

    • Thanks, Pat. The scans came back negative, so we’re in the clear for now. Usually, I don’t write “in real time”. I tend to wait until I’ve processed whatever I’m writing about. It helped me get through it, but I also feel a little chagrined at being so emotionally raw when the outcome was good.

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      • Boy do I understand, but when I read that they were negative I never thought that you had overreacted. They could have also been positive. But I know the feeling of being so exposed when in the middle of the crisis and the feeling of … guilt? when it all turns out well. Sometimes I feel like I failed the test when I am the sick one. Ya, crazy. 🙂 Writing in the moment makes me feel very exposed and vulnerable.

        Liked by 1 person

  2. I’m sorry isn’t enough…never really is, even though it’s a heartfelt emotion.
    You write beautifully and with such emotion and clarity. Keep it up. I think it’s a way to set your soul free and keep the PTSD at bay and it makes the experience of life, good and bad, meaningful to others. It is a gift you have to others.

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  3. Heartfelt commiserations. The space between is a hard hard place, outside life’s usual continuum, and only you and your husband know what it’s like in there. But there is big hope too in those teenage eye rolls. More power to her recovery.

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    • Thanks, Fransi. The scans came back negative, so we just have a regular monitoring plan now. We’re all exhausted, but it looks like she’ll come out of the other side of this with the best possible outcome. Thanks for your kind wishes. Now to breathe again…

      Liked by 1 person

  4. We’ve had a taste if that fear too this year, the uncanny fragility of things and the real ness of shock that comes with it. Sending warmth thoughts, thinking of your family Michelle.

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    • Of all my life experiences thus far, nothing could have prepared me or my family for this. Fortunately, her latest scans came back negative for any more tumors. Now we have to breathe and eventually make time move again. Hoping your family is doing well now, Bill.

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  5. I write about music and musicians, but I love all kinds of writing. Please keep going. Don’t undervalue blog posts. They are literature, too, and you’re doing an extraordinary job. I recall how I wrote an essay about Haitian folk music and dance while my mom was in a coma, on her way out of this world. The editor offered me an extension, but I needed to do it. And this will sound like a clichĂ©, but it’s what mom would have wanted. Your daughter likely has the same desire. It’s good to hear that she’s recovered her “teenage eye roll.” (I love that one.) Gotta be a good sign. My best to you and your family.

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    • Thanks, Lois, for your thoughtful comment. We’re fortunate, my daughter’s scans came back negative, so now we get to move on a bit.

      As to blog posts, I sometimes get chided for not valuing them more as writing, but I have some ambitions offline now (in some part, thanks to blogging). In that context, I have to push myself to not confine my writing to blogging. It is less about the value of blogging than it is about the work I need to do to achieve a personal goal.

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  6. Words seem so puny. My meager offering is a reminder of what you clearly know: the space between is not a vacant or empty place. It’s where things are happening that form us, and that we will only recognize later, when they/we are prepared to connect. My thoughts are with you and your family, Michelle.

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    • Thanks, Donna. Fortunately, I can now go back to pondering the space between in theory, instead of crisis. My daughter’s scans came back negative for any more tumors. Time to breathe and process and integrate these experiences. Thanks for your kind wishes.

      Liked by 1 person

  7. Time is never wasted, Michelle. Everything you do now, being beside your daughter, noticing the birds with fledglings – we can’t be in control of time – it is there, regardless – if you don’t do one thing with it, something else is happening with it. I’m glad the writing is still there for you, even if you’re not overtly seeing to it just now – it is what you have done for years – it is a strong part of you. This is what I say – I hope it resonates with you somewhere. All the best for your daughter.

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    • Sometimes I think anxiety is a time-eater, with little bang for one’s emotional investment. Still, we had positive news yesterday and can finally decompress. The scans came back negative with just a need for future monitoring. Thanks for your kind words, Joan.

      Liked by 1 person

  8. Your new “normal” is a tall order, friend. You’re thick in the shadow side of modern medicine, which creates so much more anxiety than lives lived without its screenings and predictions. The psychological suction into that black hole is enormous, and one can scarcely opt out when one’s child is involved. I wish you courage and patience and as much curiosity as you can muster beside the lesser sensations that will want to crowd it out. There IS value in liminal spaces, though it may take longer to become evident than you wish, and may take surprising forms. But it will serve you as a writer no less a human, those qualities being so entwined in you. In an older, less eloquent vernacular: Hang in there! 🙂

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    • I always forget that word “liminal” – such a reservoir to explore. We got positive news yesterday, Cate, so now I can go back to less agitated navel-gazing. We were very fortunate to have things happen the way they did, or more misery would have ensued. That scary bit of randomness, along with having assurances knocked out from under us will take some time to process. That is, I suppose, where the value will lie.

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  9. Writing, an unshakable tether, is surely one strong antidote for lightening all the darker shades of the space between — and, indeed, you do it beautifully. Science doesn’t and cannot know everything about everyone; prognosis is not diagnosis, and growing bodies can do wild and wonderful things. Your daughter has already beaten some enormous odds. There’s every reason to flat out rejoice and go on rejoicing unless and until a new threat clearly rears its stupid head. For whatever it’s worth, you two are in my prayers a lot. All of your family, really, but especially you two.

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    • Thank you so much for your kind words. We got positive news, so now it’s just a monitoring program. I feel pretty grateful to science, while acknowledging it is not the singular path to healing. Having such a rare tumor did make the diagnostic path a little rockier, but we’re so grateful for the outcome, that we forgive the dire prognosticators (even as they scared the bejeezus out of us). And you’re right about bodies doing surprising things.

      Liked by 1 person

  10. I mean this kindly. I’m sorry if you don’t want to hear this but GO TO THE MAYO CLINIC. Any Minnesotan can go there as they get MN money. They are cheaper than local doctors. They have saved me and Gary from surgeries and worries. We have had things go wrong. But they site studies and tell the chances. Anyone in our family who gets pronouncements like these are worth a second opinion at Mayo. If I were you and I’m not and I understand you do not want advice, I would run not walk to Mayo. Carolyn

    [image: photo] *Carolyn Wilhelm* Curriculum Writer and Author, Wise Owl Factory LLC

    cwilhelm@thewiseowlfactory.com

    The Wise Owl Factory

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    • Hi Carolyn. It sounds like you have had positive experiences with Mayo. They actually did the final pathology on the tumor and came back with a benign diagnosis. The scans came back negative for further issues, so we’re on a monitoring program. The fact that the tumor is the rare kind diagnosed in less than one in one million people, made the diagnostic journey scarier, but not wrong and I’m very grateful that our journey took place at Children’s in Minneapolis. Thanks for your kind words and support.

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    • Thanks, Ellen – we got good news. No evidence of any other tumors, so now just a monitoring program. I am going to learn how to breathe again. My daughter gets to go on to other life-threatening, but joyful teenage activities (driver’s ed and summer camp). We’ve been very, very lucky.

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  11. Michelle,
    What is there to say that would be helpful or uplifting? Is there any value in medical prognosis? While I’ve never had to go through anything like what you’re experiencing, I can say it’s all space between, with nothing ever certain.

    Glad you’re home from the hospital, at least. I suspect it will be healthy for all of you. The writing will come in time, because you are compelled to write. It may not come on your schedule, and it may not come out like you want it, but the words must out, one way or another.

    Thanks for sharing this intimate insight into your life. Best wishes to your daughter, whose teenage eye-rolls must be a relief to her mother just now.

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    • Thanks Katherine. We got good news yesterday, so I feel a little bit embarrassed about rolling out all my anxieties in public. However, it did help me keep a grip on my sanity. Now for the decompressing and healing and back to writing about my usual petty things. And the eye-rolling teenager can get on with her summer (after a little more healing).

      Liked by 1 person

    • Thanks Alison. I always feel like I have to work a little harder to get something out of the time I waste – or at least rationalize and justify it! I suspect it might be a very American thing, with all the nattering on about productivity.

      Liked by 1 person

      • Oh Brits/Aussies/Canadians get the same nattering. It’s taken me until my late 60’s to realize I really don’t need to listen to it. It’s doesn’t mean I don’t, just that I listen a lot less than I used to.

        Liked by 1 person

  12. My thoughts and prayers are with you and your family.May your eye-rolling teenage daughter grow up to be a healthy young woman.

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