experience, reflection

To Build (and Re-Build) a Home

I’ve been living with my diagnosis for just over four months now, and I’m continually surprised at how my experience of the news has evolved. I recognize within myself the changing landscape of emotions day to day, minute by minute. Now that I’m not purely on survival mode, this diagnosis has settled into the fabric of my identity. It’s not who I am, but it’s certainly a large part of my human experience.

Being diagnosed with cancer didn’t just change my relationship with myself, it changed my relationships. The way I interact with my coworkers, family, and friends has shifted in ways both subtle and dramatic.

If you’ll allow me, I’d like to explain what I mean using the analogy of a house fire. I chose this because it’s ostensibly imaginable and involves a lot of help. (Well, okay, the other reason being I’ve been watching a lot of This Is Us recently. ) It’s not a perfect analogy, but it communicates my point well enough.

Catching Fire

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When a house catches fire, hopefully someone alerts the authorities early enough and firefighters show up. My uncle was a volunteer firefighter, and I have fond memories of hanging out with him in the firehouse when I was younger. Here’s what I know: firefighters are unfathomably brave. They walk into blistering heat knowing their hat might melt to their scalp and they may leave needing medical care of their own. Without firefighters, buildings would burn right to the ground and leave so many without a place to call home.

Eventually, when their job is done, the firefighters leave. After an appraisal, some guidance, and lots of complicated insurance steps I don’t understand, contractors and workers come in to help re-build the house. Anyone who has ever had remodeling or construction work completed can tell you: it takes a long time. Deadlines are set and then pushed back. Calendars are changed. Plywood frames seem to stand bare in the cold, unchanging and without progress. But construction workers are undeterred. They’re hardworking, show up day after day regardless of the working conditions, and stick it out so that someday, somebody can move back in.

There’s another group, too. It contains a wide range of people who aren’t as apparent at first. As the house is burning, there are some who aren’t quite sure what to do in an emergency, or they don’t think it right to intervene, since it appears everything is being taken care of. Maybe some people feel it’s best to stay out of the way and say some prayers that everyone gets out safely and or that rebuilding goes according to plan. Fires are pretty terrifying, so it’s understandable it strikes a chord of fear in some and they don’t want to get too close. Or maybe one of the pipes just burst in a neighboring home, and that person needs to get on it before their basement floods and their possessions are lost. And I’m fairly certain there are some people who are just staring at the moment, still shocked at the fire happening just down the block, on their very own street.

The Afterglow

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Image courtesy of deviantart (psychonoir)

In case you haven’t caught on by now… I’m the house. And the homeowner. (I warned you this wasn’t a perfect analogy.)

When I was diagnosed, I was astonished at the number of people who rushed to help through their words, gestures, and thoughts. I received flowers, cards, text messages, and food. People offered me excursions to distract me from my circumstance, a place to stay in the city, their beautiful stories, their platelets: you name it, I received the offer. It was absolutely critical so soon after my diagnosis. If I didn’t have this outpouring of support during the first few days, I probably would have melted down completely. I’m so lucky to have these first-responders in my life.

In the weeks since, I’ve received less of the “emergency” response and moved into the builder experience. There’s not as many daily offers of help now that the smoke has died down, but a committed group shows up to check in and make sure things are on track. They’re the ones sending a text once a week, just to say hi. They’re the ones messaging me funny memes. Let it be known: these people are just as important the firefighters. They recognize that I’m not in a dire circumstance, but they can see that I’m currently down to the studs, and at times, in need of an extra pair of hands. I’m so lucky to have these foundation-layers in my life.

The third group is tough to describe at times because it’s less of a vocal and visible role. (I myself am not sure who’s entirely in it.) It could be that someone doesn’t feel it’s their place to reach out, or they’re more comfortable stepping back and sending some good thoughts my way. For many, there’s a good chance I haven’t heard that someone I’m otherwise close to is experiencing recent hardship or emotional trauma, and by all means, I WANT you to take care of yourself so you can be all that the world needs you to be. Just as I am lucky to have the firefighters and the contractors, I’m lucky to have the quiet support from people who want the best for me: I swear they are knitting and re-knitting the invisible wings I reach for and strap on my back on the hardest of days.

Truth Telling

What pains me most to admit is that there are people in my life who I expected to show up, and they haven’t. I don’t know why they aren’t able to be around (at least not yet). It’s embarrassing to admit because the number of these individuals pales in comparison to those in the other categories. But to omit this fact from an honest recording of my cancer experience would mean I’m not telling my full truth.

It doesn’t in any way detract from the volume of love, support, and good thoughts I’ve received from others. It’s just as though I expected someone to help me with a task, then something happened and they couldn’t make it, and I never got word. “Well, okay,” I think, and I try to make peace with it and not to take it personally. Because here’s the thing: despite them not being there when I expected them to arrive, I’m lucky to have them, too. Each of them had a role to play in my life in some way. I wouldn’t be who I am without their influence. Besides, who’s to say they won’t show up later?

I try to operate on the hypothesis that everyone is doing the best they can. It may sound spiritually enlightened… but it’s also just an easier way of getting through life without dramatizing too much. I believe deeply that it’s best to leave room for grace and generosity. I fully support giving people the benefit of the doubt. And regardless of whether or not they’re around now, no one is more worthy of that generosity then the incredible people who are part of my life.

A Housewarming: All Are Welcome

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I’ll take any excuse I can to share a Fixer Upper dining room photo.

Here’s what I want you to know: very, very few people can be both a first responder and a foundation-layer, and that’s the way it is supposed to be. Your true, authentic response, whatever it may be, is perfect, valid, and absolutely necessary. There is no need to change who you are or how you respond.

Stop trying to be a builder if you’re a first responder: if you didn’t send me that text that first week after I was diagnosed, I may have not gotten through my first week of living with cancer.

Don’t guilt yourself because you weren’t a first responder and you’re here to build: your support now, in the quieter moments, is so, so needed.

And I promise you, it’s okay to sit this one out, my friend: you may need to be an observer in my experience so you can be the first responder or builder in someone else’s life. Go. I’ve got this. And they need you.

There are very few individuals who have the emotional bandwidth and stamina to show up day after day after day for my needs. I myself get exhausted with my own drama at times. I consider myself inordinately blessed to have more firefighter/builders than I can count on one hand, and I hold them close and try to tell them every day just how much I love them and appreciate them.

There’s a great passage in Elizabeth Gilbert’s book Eat, Pray, Love where Elizabeth describes the difference between her sister and herself through a short anecdote, which I’ll attempt to capture accurately here for you. When her family received the news that another family experienced a tragedy, Elizabeth’s first thought was “my goodness, that family needs such grace right now.” Her own sister responded,”that family needs casseroles,”

Whoever you are, no matter what you bring to the table (grace, casserole, or company), thank you for being part of my journey. I’m lucky to have you here.

reflection

Living Out Ultreia

A Memory

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Savoring guava juice and a peach at a stop along the Camino.

Once upon a time, when I thought the lump by my collarbone was a lipoma, I walked 500 miles from France to Spain.

I have to be honest with you, most days I forget it happened. That speaks so much to the human condition, doesn’t it? You accomplish a dream, you finally get the material object you want, you finally end up in that happy relationship that you want – and its meaning slips away. You begin to wonder what’s next.

For several years, that 500 mile journey called the Camino de Santiago was my dream. Then I did it, my life radically a few months later, and now it seems like a part of another person’s life. It was not even a year ago when I set off from St. Jean Pied-de-Port with one of my dearest friends and embarked on over a month of walking. There are days when I do not recognize that strong, healthy woman smiling, sunburnt and dust-covered in those photos. It was hard, but despite being only partially aware at the time, I was experiencing the vibrant fullness of being human.

I read recently that the experiences of our elders, our generations past, live in our DNA. Isn’t that wild? Somewhere, encoded in the basic scientific cells that make up our bodies, live the heartache, the loss, the beauty, and the striving of our ancestors. It puts in mind another amazing phenomenon: when individuals with Alzheimer’s and dementia are played music from their past, and suddenly, though this person may not have even spoken coherently in years, lyrics start to ascend from lips to the heavens.

We know, deep down, who we are. The world will try to tell us otherwise, but if we try hard enough, we can remember.

Forgetting

I’m fairly certain social media is a black hole that launches us into forgetfulness. It’s a vortex that pulls you through and flips you inside out until you forget what time it is as you look at pictures of better meals than the ones you make, someone better looking than you are, adventures that are better than those you’ve had. It’s not all bad: Instagram and Facebook have been a lifeline for me in the wake of my diagnosis. I’ve made “friends” with desmoid patients from all over the world, despite never having met a one in person. But the negative force of the vortex is strong.

After the news that my tumor had not grown, I was shocked at how quickly I fell into that pit of jealousy. Comparison is the thief of joy, and I was bereft of any excitement in less than 24 hours. I sat bitterly staring at this tiny phone screen, watching as friends and peers and people I’ve lost touch with share that they were cast in shows, starting families, or doing ordinary things like going on a run. These people had done nothing to offend; they were simply living their lives. Still, I found myself filling with resentment and seething with jealousy.

I’m aware I project a pretty positive attitude in public. It’s no less real or valid or “me,” but it’s only half the story. I am grieving in some way every single day. Some days, it’s the flinching recognition that my yoga mat is collecting dust in a corner. Others, my restless thoughts spin inside my head. How did I pull the short straw? Why do I need to focus on just living when others are thriving? My life was once that easy too. What the hell did I do to end up here?

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A self-portrait: two weeks after being told it was a sarcoma, two days prior to my official diagnosis.

Remembering

One day before our final walk to Santiago, I was sick – really, really sick. Other pilgrims walking the Camino had been walking in and out of the room until well after midnight, and when they finally slept, it was a symphony of snoring. I had oily spinach and eggs the night before, poor fuel for a vegetarian completing a day of waking in August heat. A fever was brewing that would rage on well into the next day. I was determined to get into Santiago, even if it meant crawling on my hands and knees, but I seriously doubted that I had the strength to do it.

There’s a rush of pilgrims, or as they’re called in Spanish, peregrinos, who join the Camino only for the last 100 km. While everyone has a right to their own Camino experience, those of us who had already been walking for four weeks could get annoyed at these “tour-ogrinos” pretty quickly. Many of these latecomers were inclined towards drinking heavily, talking loudly, treating this religious pilgrimage as a holiday.

Around 10 AM, my walking partner and I stopped at a bar to get a Coke and hopefully a tortilla, a hearty Spanish frittata, to fuel the rest of our day. The bar was crowded, and judging by the cleanliness of most of their boots, they hadn’t been on the trail for long. I was feeling awful and the expression on my face warned anyone within several yards to stay far, far away. So naturally, one man who had just ordered a round of shots for himself and his friends came up to us at our table. He lunged his head forward, alcohol and smoke on his breath. He smiled and piled on the bravado, announcing, “You see, my friends and I, we will smoke and drink all day, and we will still get to Santiago before you!”

When I spoke, it was without pause, with a voice I did not recognize. It was thunderous in tone, yet restrained. This was the voice of a fierce warrior, one who pulled no punches and took no prisoners. This was the voice of someone who had nothing to prove. I stared him down, my nausea and fear cast aside, and responded unwaveringly.

“Yes, you may. But I walked here from France.

I can’t remember what his reaction was. I believe it was something akin to a half-sneer, half-smile, perhaps a smug chuckle as he sauntered back to get his drink. It doesn’t matter what his reaction was. What mattered was that I found this new, steady voice that I didn’t know I had within me.

I arrived in Santiago two days later.

A Reckoning

This recollection surfaced at just the right time, as I was neck deep in my present-day social media binge. I stumbled upon the honest reflection of a fellow peregrina who had arrived in Santiago on a Camino facebook group. The post was translated from German courtesy of an auto-translator, but the words ring true in any language.

I don’t know how many steps I’ve gone physically, mentally and psychologically on my way. However, in the last few years I have learned so incredibly much about me, living, incredible, wonderful, sad and fulfilling stories and experiences, which fills me with deep gratitude.

The Camino never ends in Santiago – the actual journey takes place to a large part in the interior and begins afterwards. My truth, my experience. Don’t believe me a word, feel it, take something for you and leave the rest. Trust yourself and the way. It’s all there. Always.

To all the people who have supported me for the last few years, all camino angels and also all the ass angels who have often made me mad. Thank you, because through these experiences I grow. And I’m here for that. I don’t cry tears of grief.
I shine. I’m happy. I am.

— @wild_one_walking

It took reading this post to remind myself that it’s all there. Always.

I am no longer in Spain. Hell, I am not able to lift a full Brita pitcher without two hands and take off a tshirt without getting caught in it, let alone audition for shows or run a 5k or walk across a country. Most days I make myself a smoothie and then drive in traffic, trying to get to work on time. I give my students as much heart as I can muster, then come home to walk my dog, make dinner, do dishes, and maybe watch Netflix. It’s not the existence I am accustomed to or one I’m particularly proud of.

But I am still here. And though I forget the significance of that very fact as I trudge through this new normal, after a while a voice inside fiercely whispers the truth. The words cut through the anger, fear, rage, bitterness welling up and spilling over: I walked here from France. I walked here from Spain. I walked here after being told it’s a soft tissue sarcoma, from a conversation about taking out bones and muscles and tissue and sinews, and from a discussion of how I would be stitched up and pieced back together like a jigsaw puzzle. I walked here on chemo. I am walking through hell and some days I feel transcendent, one of those spiritual firewalkers, and others the embers burn my feet so badly I cannot imagine going forward one more step.

And yet, here I am. Isn’t that something.

The word “ultreia” is seen often on the Camino. It’s an old, old word, mentioned in the 12th century Pilgrim’s guide called the Codex Calixtinus. It’s something pilgrims would say to one another in greeting, meaning “keep going” or “beyond,” encouragement to head onwards to Santiago, or perhaps, further.

When I said this word on the Camino, my eyes were on Santiago. Now, my destination is unclear, a blurry spot on the horizon or even somewhere past. But I must keep going and go beyond. It will not be easy. I am bruised and battered and broken. I can’t do the things I once took for granted. But here I am, continuing onward and beyond.

Ultreia.

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