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Learning to live in the messy middle

I went to a restorative yoga class the other night as it has been a particularly difficult few weeks and I needed to give myself some permission to spend time in an intentional and calming space. After the class was over an older woman came up to me to tell me how much she liked my haircut.

“It really highlights your eyes!” she said.

I thanked her with a slight cringe inside, as I always do, as my short cut obviously signifies more than just a style choice.

“How brave did you have to be to cut it all off?” she followed up with.

So I took the deep breath I take when I’m about to possibly make a stranger uncomfortable.

“Oh, actually,” I said hesitantly, “I have breast cancer, so it fell off two years ago when I started chemo and I just kept it short when it grew back.”

She got a familiar pained look on her face and reassured me that I looked great and I reminisced about the time I walked around bald for months on end.

Not knowing what else to say she exclaimed, “So you’re a survivor!”

I cringed again inside as I smiled and said, “I’m hanging in there.”

You see, I never know what to say to the label “survivor.” Survivor feels very fundamentally like a word that places pain in the past tense. Like the survivors of the Titanic or of a car accident. They may have scars but the bad thing happened in the past. I still have cancer. While I am fiercely hopeful I have no guarantee that I will ever not have cancer. Even if everyone tells me the cancer is gone I’m not sure if I’ll ever feel like survivor is the right word.

This is not to start a conversation about semantics. It’s to talk about what it feels like to be stuck in this messy middle space, like the bad thing is not necessarily behind us, and not just in the state of my cancer, but more so in my emotional state. You see, while it’s been clear since the very beginning that my life would never “go back” to the way it was before cancer, I did feel like there had to be some stable place I would eventually land on, some life in which I at least had some control back.

Take this year for example. I spent the first few months of 2015 convinced it would be a long shot to survive until 2017. I was in emergency mode at every moment. For weeks I barely slept or ate. I lost 20 pounds mostly from pure anxiety. I took Xanax to get through the day and Ativan to get through the night. I started meditating for an hour every day. I went on a week-long silent retreat. I joined a Unitarian church and sought spiritual guidance. Besides to go to doctors, healers or church I also almost never left the house and found it near impossible to carry on a casual conversation with anyone. I was in a desperate search to save my own life while also trying to come to terms with the possibility of a fairly swift and painful demise. Triple negative breast cancer is not slow growing and its progression is not kind. I was in the depths of some pretty serious suffering to say the least.

And then, as the result of coincidences and miracles and amazing friends, I finally found some hope. I found treatments that seemed like they might help and scan after scan slowly but surely I started to feel safer and safer. Month after month I chipped away at the overwhelming fear. I went back to work part time. I ventured back out into my social circles. I started to find joy again. I was pulled back down for a time while I dealt with three different deaths in rapid succession but I hung on and was able to focus on the new life Andrew and I were starting in Frederick, Maryland, his new job, our new house. It was a welcome distraction.

I finally started to feel settled, to feel stable, to not feel afraid of food, to not beat myself up for missing a dose of meds. I started to feel happy and hopeful and excited about my work, my life, my friendships.

And then one day, in mid-September the temperature dipped. I could feel a completely inexplicable anxiety welling up in me almost immediately. I started crying every morning even though rationally I felt fine and even happy and excited. I started having panic attacks. Some primal part of my brain started to take over my rational thought and to push me into a place of pain, fear and worthlessness.

The thing about cancer is that it is a trauma and I would argue that the vast majority of cancer patients suffer from PTSD. September is the month that I was diagnosed in. October is the month I started chemotherapy. It was cold when I found my recurrence. As much as I want my life to move forward my traumatized brain doesn’t forget. It holds on to these triggers and desperately tries to protect itself by rushing my body with the feeling that I need to run or fight. The cold weather is one of those triggers. Merely driving down the road Georgetown Hospital, where I got chemo, is on, makes me sick to my stomach. The smell of a hospital makes me physically feel like running as far as I can in the opposite direction.

These trauma responses are overwhelming even when I can put a name to them. I went through a week of break downs and random explosions as I slowly realized I was nowhere close to “over” my cancer traumas. In the same week my young adult cancer community lost the fourth young person to cancer this year. She had just started her oncology residency in California and she had been posting happy vacation photos on Facebook days before her death. While we weren’t very close her death was a reminder of how easily this life takes really incredible people in just a blink.

So here’s what I’ve had to come to terms with: I naturally feel uncomfortable with the word survivor because it feels like some ending that I will never come to. I need to learn to feel comfortable with the grief and the trauma that my life now holds as well because it is also unlikely to ever come to some final end. Even if all the trauma suddenly disappears I will still continue to lose people I care about. My friends with cancer have become some of the most important people in my life and we text about who will take care of our pets, what to include at our memorials and how we manage our fear of our death on a daily basis as casually as I’m sure some people text about their favorite TV shows or their weekend plans.

As humans we like simple stories. We like narrative arcs with clear endings. My story, thankfully, just like my life, goes on, and there is no simple end to my cancer journey. There is no grand conclusion that would allow me to label myself a survivor or that would allow me to completely let go of the grief and trauma cancer brought with it. I am in the messy middle, the second act of my story and it’s possible I always will be. I don’t need a happy ending to be happy though. My only alternative is to push the pain down as far as I can which is what I’ve been doing and it resulted in a wild and uncontrolled explosion. Embracing the pain and the dark feels powerful. Owning them, making them mine, and making them ok means I am not broken. I am just human and suffering like so many of us have and I am as worthy as we all are of love and acceptance. So I’m learning, slowly and hesitantly to let grief and trauma sit in close proximity and trying to embrace the lessons they have to teach me. In an effort to come to acceptance with this choice I ventured away from prose the other day and wrote the poem below. It’s my ode to grief.

While I was hesitant to write all of this down and to share this poem I also want to make sure that everyone who has been through trauma has the permission they need to forgive their brains and to remember that they are deeply worthy, scars and all. Owning my pain is really the only path I’ve found so far to freedom. My heart is with you all.

Sending love and hugs,

Katie


Grief lives here now

It snuck in the back door while I was busy entertaining anxiety and fear

It sat quietly in the corner, waiting for the storm to pass, watching my every move

It fidgeted as the lightning and thunder tore through the house

Watched as I bailed myself out, bucket after bucket

When the house at last grew quiet it sat down beside me

Reached out and held on tightly

And it hasn’t let go

When they pumped my lifelines full of poison rendering my reflection unrecognizable

Grief clawed at my face trying to find the person who was there before

When they cut out my middle, amputated my center, destroyed my demon

Grief screamed out in anticipation of itself and then found solace in soft persistent sobbing

When a year’s worth of slashing and burning finally came to an end

Grief wept silently into the night, bemoaning the casualties of war

When one after another of my fellow comrades fell, like impossibly bright lights being wiped from the night sky

Grief tugged at my fringes like a toddler incessantly asking why

When the storms returned and it seemed clear that the house would no longer last

I threw down my buckets and instead built an arc

When I went sailing high on top of the surging waters

Grief piled loss on top of loss and climbed its way to the surface to find me once again

The storm is now subsiding, the waters are calm and grief is still here beside me

Someone once said something kind, “during this time of grief,” they told me

But grief cannot be bound by time

It is a historian at heart and an expert in making old wounds new

Grief is but one of many visitors, however, each with their own space, each with their own lessons

So I set out the welcome mat and accept that grief lives here now