This is Me

Oh heyyyyy friends! It’s been a hot minute or two, or ten.

I’ve had so much to talk about, but the words didn’t come. So many thoughts just stuck in their holding pen. Much like standing in front of the open refrigerator and expecting the perfect snack to just magically appear in your hands, turns out you actually have to write to get the words from your head to your hands. Who knew?

And then it finally happened. And the words came.

For Christmas, my mom gave me a page-a-day calendar of inspiring women. 365 days of quotes, tidbits and fascinating knowledge about women, women and only women. 

Needless to say, it’s wonderful.

When I stumble into my office at 5:30 in the morning, I am greeted by the day’s nugget of knowledge. A few weeks ago, the page stopped me in my tracks.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it.” Brene Brown, “The Power of Vulnerability” (TED talk)

In fairness, all things Brene generally stop me in my tracks. If you aren’t familiar, do yourself a favor and pull her up on YouTube STAT. But this one really resonated and I’ve been noodling this quote ever since, mulling it over in my mind ad nauseam, trying to decide why it struck such a deep chord.

I have shared my story openly and willingly, using writing as a way to process and heal through the thickest of plot twists. And yet there has always been something missing. Not the nitty-gritty details or the overall narrative. Not the emotional roller coaster of a life spent in medical limbo. 

I think while I have shared my story with others, along the way I somehow lost contact with sharing it with myself. I’ve spent so much energy trying to normalize myself to fit into a mold that doesn’t even exist anymore and running from this harsh reality. Facing it was far too large a pill to swallow.

And yet, here we are.

I have both accepted and absolutely not accepted that the way my life is now is the way it will be forever. I strive every day to defy the odds and I plan to continue to hike my own path, but there is also that place deep down in the dark recesses of my brain that quietly whispers - is this really it? Forever?

I desperately want to travel and see the world. I itch endlessly for adventure. Yet so much of how we immerse ourselves in a culture starts with food. It demands endurance and a functioning immune system and a brain that sends signals everywhere it needs to. I want to bike through Tuscany and stand under the Eiffel Tower in Paris. I want to meet my giraffe relatives on a safari in Africa and spend time with the tortoises in the Galapagos. I want to go to Ireland with my husband to find his relatives and see the sparkling blue water in Vancouver. But how can I enjoy a fresh scoop of gelato in Rome or a bite of spanakopita in Greece, if an accidental milk mishap at a coffee shop recently had me running to the bathroom for days? How can I hike through Switzerland (“Sound of Music” style, of course) if some days I get dizzy walking up my own stairs?

Will I continue to sit at my dining room table and type words into a machine, while the rest of the world keeps turning, for the rest of my life? Is this really…it?

I have images in my head that are equal parts sobering and hilarious of me hobbling down the halls of a retirement community to meet my friends for mah jong, and toting my trusty lunchbox because the dining room doesn’t offer a baked sweet potato and avocado. 

50 years from now, will I still order a tea just so I’ve ordered something?

These questions have always been there, but somehow I was able to keep them penned in a safe, pad-locked box in my mind. Acknowledging their existence but not giving them the power to speak above a whisper. But then things changed.

10 months ago I had a daughter. She is the very best thing I have ever done with my life, and I still marvel each and every day that she is actually mine. Despite the fact that I grew her and pushed her out into the world, I still don’t at all believe it. (Possibly because the first few hours after her birth are a total and utter medical haze mystery…regardless, I got nothing). I could talk about her for weeks and it wouldn’t even begin to tell the world everything I want to say about her. How her smile lights up every cell in my body. How after she goes to bed, I look through pictures from the day because I miss her.

For 9 years I’ve been in and out of hospitals, sliced and diced so many times that I run out of spaces on medical forms that ask for a surgical history. Each time falling into a drug induced slumber and waking up disoriented and in pain. Each time leaving with a laundry list of post op instructions, drains, stitches and empty spaces where organs once lived. 

Do you know what I left with this time?

A duffel bag of mesh underwear, a sitz bath, and my daughter. 

That’s all you really need to know.

I detest the phrase “everything happens for a reason” with pretty much every fiber of my being, but I do think life has a way of handing us what we need, when we need it, IF we are available to see it. 

After moving heaven and earth to avoid passing along my genetic mutations, my daughter came into this world with a gastrointestinal condition from the other side of her genetics. Hilarious, universe, soooo hilarious. 

She will grow out of it, and is perfectly healthy and happy with the proper management and changes to both of our diets, but had my life not turned out the way it has, I’m not sure I would have been mentally prepared to look a server in the eye and ask for a gluten-dairy-soy-egg-oat-tree nut-peanut-fish-legume-free, low residue, vegetarian meal and expect a straight face. I don’t think I would have known how to navigate physical therapy and feeding therapy and specialist appointments and insurance coverage.

Life has a certain way of rewriting your story.

But while I am exceptionally grateful for the wisdom of life experiences, how will I explain…me, someday? What will I tell her when I have to get a new pacemaker when she is 7. And 17. And 27. And, God willing, so on and so forth?

What will she think of the web of scars that cover my body? 

Will she care about my past at all? Will I be…a burden?

I’ve been out of the classroom for 8 years and still miss it every single day. Every. Single. Day. Which somehow seems embarrassing to me, like I should magically just get over the expectation hangover that the career I always planned on is no longer mine and more than likely never will be. It’s been long enough that people no longer identify me as a teacher, and I wish that didn’t sting, but it does. I’m an ambivert through and through, who needs time alone to charge my battery, but also time with people to charge my soul. Working two jobs from home with a 10 month old and a furry mascot has its perks, but sanity and community are not on that list. Loneliness and exhaustion are not hats I wear well in tandem, the combination leaving me with far too much time alone with my once restrained thoughts. I’m learning, in this new season of life, to find peace with those thoughts, and learning takes time.

My story is messy and unexpected and complicated, and yet has taken me places I never would have imagined and introduced me to people I never would have met. My daughter is a product of that story and a chapter I cannot imagine my life without. I can no longer run from my story, if she is in it, and truth be told - I don’t want to.

It is uncomfortable to let these questions wash over me in waves. It’s painful and scary to be reminded that my life has not played out like I planned, and my future is a big fat question mark. In this season of life, I am both blissfully happy and desperately lonely, and that needs to be ok. Some days the waves nearly topple me over, and others they just lap gently at my feet. I can fight it, or I can surrender to the best of my ability and ride the tides as they change. 

Owning my story is hard. Owning my fears and uncertainties and scariest questions is impossibly difficult, but it's time for me to rise up and make peace with the relentless current. After all, sometimes deep within the waves, you find the most precious, perfect pearl.