Let go or be dragged

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What it feels like sometimes to have a chronic illness.

This blog has always been a place of healing for me. You, dear readers, have contributed to creating this safe sanctuary with your comments and stories, sharing your hearts, your struggles and your fears. Vulnerability breeds vulnerability. But for these past few months, hitting the publish button on WordPress has been a terrifying idea for me. To share what has really been going on in my life comes with risk, mostly the fear that I will invite in pity and that no one would understand.

What has pushed me to finally tell my story here is my frustration over the last few months of the lack of personal stories around chronic illness, particularly young adults living with chronic illness. In other words, stories like mine.

As a lover of non-fiction and memoir, I have listened to, watched and read accounts of people’s chronic illness experiences, mostly about those who are living with and/or survived cancer. I turned to others’ stories of sickness to try to understand mine. I longed to find stories that helped me connect with someone else who might be going through/or have experienced similar challenges. I found some nuggets of comfort in their stories, points of relating, but I have since come to realize that every person’s story is unique, and so is mine, and it is one worth telling.

During this past summer, my health was relatively stable, and I started to feel like I was getting my life back and getting ME back. I was running again for the first time in years and I cannot tell you how good it felt to reclaim that. I felt normal again–hopeful. I ran 4.8 miles in a relay race and signed up for my first 10K. I spent the rest of my summer training for my 10K in September—the 10K that never happened.

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Me over the summer when I was back to running and feeling strong and on top of the world. 

For the past month, my chronic illness has flared because of a virus that I contracted. Over these past few weeks, I’ve been re-experiencing what it’s like to have a chronic illness rob me of big things like my identity and little things like cooking dinner. Anger and frustration have been building inside of me. I feel like I have control over nothing and it scares the hell out of me. While these emotions don’t always feel good, they’re fueling me to feel more empowered in this mess and not be afraid to use my voice to share my story and also advocate for myself in a healthcare system that downright just sucks.

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Chronic illness can be a lonely journey. Throughout mine, I have often felt that no one could understand what I was experiencing, and so I isolated myself. Beyond my immediate family, only a handful of my close friends know about my illness. I coped by not talking about it. When you say things out loud it feels too real. I no longer want to stay silent.

Over the summer, I finished reading Natalie Goldberg’s latest memoir about her journey with cancer: “Let the Whole Thundering World Come Home.” In the preface, she writes “a writer has a second chance to digest experience.” For me, writing has always helped me make sense of the world, process what feels unexplainable and painful. But for the last nine months or so, I have been so immersed in my health that I no longer had the energy to digest my experience. It was easier to shut down and numb out. All my strength was poured into grad school, doctor’s appointments and medication changes. I fell into my default mode of pushing through. During that time, the pages of my writing notebook and journal sat mostly blank, except for some random entries about doctor’s visits or quotes that moved me. It wasn’t until May that I cracked open my notebook again while lounging on the beach listening to the constant calm of the sea and trying to make sense of the past year. It felt equally freeing and scary to put words to paper and face those difficult emotions.

The thing I wanted to write about, the thing that had become a constant presence in my life since August, I have been most afraid to write about. To write about anything else would have felt false, inauthentic, which is why you haven’t heard much from me in the last year on this blog.

There is a Zen proverb “let go or be dragged.” Writing about my illness has been part of my grieving process and has helped me accept what is and let go of what was. And yet I’m constantly being reminded that the grieving process is never linear, and I find myself these days revisiting the stages of grief that I thought I was done visiting.

Holding on to the past keeps me stuck in my suffering. Writing has always been my therapeutic release. Lately, I have been writing just for me, but now I feel called to share it because I hope my story may help others in their chronic illness journey, but also because selfishly I need to share it for my own healing.

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This is the first picture I took of the regimen of pills I was first prescribed bc I’m weird like that and like to document things. :p This photo was taken in Sept. 2017. Since then, my medication has morphed into four different medications totaling close to 3,000 mg a day. 

Every new diagnosis comes with grief—a loss of health, a loss of normalcy, frustration, anger, fear, anxiety, sadness. Just when my health reaches a period of stability, it seems something else is positioned in the wings, waiting to reveal itself. Chronic illness has the worst timing.

Barely a few weeks into my first year of grad school, I was diagnosed with Mycobacterium avium intracellulare, or MAI, a rare and serious lung infection. MAI is an atypical nontuberculosis germ that lives in the environment. It is not contagious. However, it is difficult to treat because the bacteria is slow-growing and thus it takes longer to eradicate. Treatment is further complicated if the infection has formed in the cavity of the lung, making it difficult for the medicine to reach the infection, and putting a patient at higher risk of permanent lung damage. It is a lifetime disease with a 40 percent reinfection rate, which is a high and sobering statistic. I, unfortunately, contracted the cavitary type. This also means that for the past year, I’ve been on a regimen of nearly 3,000 mg of antibiotics daily—three different oral medications and one inhaled. In addition, I take eight different supplements daily to counteract the effects of my drugs and my disease.

My MAI diagnosis in September 2017 marked my fourth confirmed lung disease at age 37. Living with this disease in addition to three previously diagnosed lung diseases, one of which is in remission, has been an exhausting and tumultuous journey that has turned my life and my family’s life upside down. Having lung disease often feels like having the flu—you lose your appetite, your muscle aches, your body feels weak and tired. And one of the most frustrating parts is that you never know when it’s going to strike, and you have to spend the weekend in bed.

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Nurse Molly at the ready when I am not feeling well. 

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My health history is like a domino effect. Nothing lives in isolation. One disease breeds another disease breeds another disease. Between 2011 and 2017, I had a few periods where my health felt stable. But every day I lived in constant fear that I’d have a flare up or some new and rare illness would surface. That anxiety has never left me.

“You can feel the pain, but suffering is when you want it to be different, when you want to be a horse instead of a donkey, an éclair instead of a slice of bread. Suffering is when you want the pain to stop,” writes Natalie Goldberg in “Old Friend From Far Away,” a beloved book I often find myself returning to. …

I want to be the horse. …

I want to be the éclair. …

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Hibernation: Winter is here

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I am in full hibernation mode. Winter does this to me. It’s a time to retreat, reflect and restore. A time to sleep in and draw the covers tighter to your chin, linger over cups of coffee and tea, read a book on the couch by the warmth of a fire.

I’ve grown fonder of winter over the last few years. I loved it as a kid. Hot chocolate with pillows of whipped cream, scarves and boots, sledding and snowsuits, mom’s creamy casserole, snowflakes and blankets, hours of movies and mid-afternoon naps, early dismissal and snow days.

Winter makes me feel alive—its crisp, cold air fills my lungs and wakes up my body. I like walking in the woods this time of year, where it’s quieter than other seasons. Just me, my dog, the creak of the pine trees and the crunch of layers of frozen leaves under my boots.

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Since December 1, my last official day of the semester, I have pretty much done nothing, at least it feels like nothing. This “doing nothing” is difficult for me to do. I struggle with being still, not producing, not in motion. Doing. Doing. Doing. Before December, I spent four months just “doing”, more accurately, overdoing. I stretched and squeezed in as many tasks, errands, emails, pages in a book, dinners, and coffee dates. This is what grad school looks like: eat, sleep, read, study, go to class, go to work, repeat. (Notice how showering wasn’t part of that cycle.) This is what grad school looks like in a counseling program: eat, sleep, read, study, go to work, go to class, cry, reflect, cry some more, feel, feel, feel, cry some more, think, think, think, cry, grow, grow, grow, cry, reflect, repeat.

December 1 arrived and I slipped into my December coma. I haven’t felt like writing. I haven’t felt much like doing anything really. My counselor says I am in recovery from this year. This is human. … This year and all of its challenges, surprises, turbulence, and layer upon layer of traumas. On my first official day of my semester break, I stayed in bed and watched movies. All. Day. Long. Flannel jammies, tea, muffins, naps, white twinkle string lights. Repeat.

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Day of Nothing. Otherwise known as best day ever.

 

I have been out of it since the middle of December and don’t feel like going back to work.

I overhear someone say this to a friend in the tea shop where I often come to write. I haven’t written here since August, but this place still feels like home and it’s where I tend to do my best writing. I warm my hands wrapped around my cup of spiced orange tea. It was five degrees earlier. I think it’s 15 now. Progress. The South cannot cope with cold. Me? I am leaning into it. Wool socks, boots, plaid scarf layered around my neck, my favorite grey, bulky, wool sweater. In the afternoon I’ll go for a walk in the woods with my four-legged companion and then we’ll take a nap on the couch. This is what you’re supposed to do in winter. Isn’t it?

It doesn’t feel like a new year. On Sunday, I lit every candle in the house, made a special dinner of lobster tail and clam chowder for my husband and me, and we watched movies until midnight approached. I held my flute of Prosecco in my hands as my husband and I cuddled under blankets and watched the ball drop in Times Square. As the countdown to 2018 began, I felt nothing. No excitement. No pang of hope. No giddiness of anticipation. It just was. We clinked glasses, kissed, and I took a sip of my bubbles. I poured the rest down the drain and stumbled sleepy-eyed into bed.

Have no expectations and you won’t be disappointed, I keep telling myself.

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A book of Jane Kenyon poems and Rumi are near me today. Before you know kindness, you must lose things. Isn’t that what Jane Kenyon said? I keep re-reading Rumi’s “The Guest House.”

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

As an unexpected visitor.

2017 was a year of unexpected visitors—literally and figuratively. Chronic illness, a diagnosis, and then another and another. A car accident that almost took my life. Trips to the ER. A fatigue that entered my body and settled there for months. A fall and back surgery. And then there were the visitors I welcomed. My acceptance letter to grad school. My job working with assault survivors. Claiming and declaring my identity as a survivor. Marching with my best friend and 5 million others around the world. The summer, the beach, the bliss before I knew what fall would bring. My mother flying 2,000 miles and showing up at my door to take care of me. Our late-night talk, the tears, the understanding, the forgiveness, and the ice cream sundaes we made after. A home-cooked meal from a dear friend, hand-delivered with gooey, fudge brownies. The community I found among my classmates, a balm during the toughest months of this year. My family. My husband. My village. My sweet, comforting dog. And love, love, love. … Always love. This is the joy. This is the pain.

meet them at the door laughing,

and invite them in.

Be grateful for whoever comes,

because each has been sent

as a guide from beyond.

Unexpected visitors are just that: visitors, temporary passersby. All things must pass.  The good, the bad, the bittersweet, I am thankful for it all. They cannot exist without each other. They are both needed, necessary for living. There lie the lessons.

This year I learned I am resilient. I learned I am a workaholic and what stress can do to the mind, body and spirit. I learned that a mother’s love is like no other—unconditional, unwavering, steady, reliable, constant, whole. I learned to ask for help, to stop trying to prove to myself and to others that I can do this alone. This. What is the this? All of it. I learned that community can be cultivated in the most unexpected places, and how that community will help hold you up when you collapse into tears in the public restroom, deliver homemade meals to your door, send you loving texts and snippets of videos declaring how much they miss you.

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Equipped by pain.

I heard someone say this recently and how they feel their painful experiences have equipped them to step into the New Year, maybe like wearing their pain like a suit of armor or a scarlet letter, as if to say, I’ve been through some shit. Approach carefully. Tread lightly.

I used to look forward to each New Year, but now there is a part of me that fears it, the unknown, whatever is lurking around the corner, the next unexpected visitor. But I am equipped by pain, this pain, like a familiar highway. I know each way it bends and curves, where it ends, where it begins, the stops in between. It’s taught me how to navigate this life. I remember my counselor asking me in 2016: How will you carry your grief? It took me a year before I learned that to carry it, I needed to accept it.

Why do you stay in prison when the door is so wide open?

Rumi, again.

On New Year’s Eve, I read aloud the moments I scribbled on slips of paper and kept in a jar marked “Good Things.” The idea was to capture the bright spots throughout the year, the simple moments of daily gratitude. I vowed to fill up the jar, but only made it halfway. Maybe this year.

Always look for the beauty; that’s me. But I slipped up quite a few times this year and lost sight of it. Pain can do that. Still, when I look back on 2017, love outshines the pain. During this difficult year, love was present; I felt it in my chest, expanding and stretching, taking up space. It never left me. It was there the whole time. And it’s love that what will carry me into the new year. Steady, unconditional, constant.

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