A small brown bird with disproportionately long, thin legs runs hurry-scurry across the pebbled pavement. Music deemed too loud by my watch pounds against my eardrums. 

And I walk.

This morning, the clouds hang low, kissing the earth, and I walk in a fog that matches the chaos in my soul, joy in one hand and anger in the other.

I frown at the memory of the twins Fear and Anxiety, who sometimes come to visit me at night, sitting perched on the side of the bed, their presence carrying the stench of boundaryless dread, which curls its fingers around my ribcage. I push them away and keep walking. 

I walk over my tumbled thoughts to feel something other than pain. I walk through prayers and tears to find gratitude and joy, and I walk until I find the words that I can stitch together into a quilt that tells my story.

I walk so that I will not stop walking. But my mind wanders.

When I was small, I imagined a future with a big purple barn full of horses. I would be a cowgirl and take care of a big property with finesse—strong and independent. 

When faced with challenges, future Sarah would use her muscled arms to deftly hoist prickly bales of life’s dusty hay and, with stoic grace, overcome.

Later, my visions jumped from one thing to another, never landing securely on any one alluring existence that would be both exciting and fulfilling, but I always saw myself alone. 

Logic, grit, and a hard-headed willingness to keep moving even when the sand got deep would get me through whatever silly hardships distant Me would face. 

Multiple moves and different high schools left me the outsider, a sort of lone wolf longing for a pack, an ugly duckling who couldn’t understand why she was so different from everyone else, but I always threw it off with a familiar shrug. 

The eventualities that I envisioned were clouded with uncertainty, and a profound longing for belonging hung about my neck. I was desperate to be known and seen. But there was a lingering sense that I should not always feel unmoored.

I breathe in the smell of decaying leaves. I’m transported back to a day of dazzling beauty; the trees adorned with their crisp golden feathers quietly whisper of their coming dormancy when they will shake off the Old Man, fertilize the future spring, and incubate the pollinators that give rise to their more applauded brothers that we give as tokens of love and loss.

I allow the tears to sit on my eyelashes as my playlist moves to a poppier tune, the transition jarring, my heart heavy from the weight of my reality. 

Lifting my chin, my thoughts turn to the tasks for the week; my cap tucked low to shield my eyes from the rising sun, my thumb scrolls through my calendar. 

I pre-check into a few upcoming appointments and roll my eyes at pain scale questions. How DOES one map pain that never leaves? I tick off the mundane but necessary elements of medical self-care. 

I read up on the latest news regarding government funding for healthcare research, hoping that wise conclusions have been made, and I curiously skim a lay abstract, earmarking it for a deeper read later. 

I keep walking, glancing up at my sleepy street to make sure a collision with man or machine is not imminent.

I check in on multiple friends going through their own challenges, from the life-altering to the mildly annoying. Dear friends I consider sisters and brothers, branded with extra spicy chromosomes that have rendered us often feeling or looking broken but rewarded with a sense of humor that simply cannot be understood if you aren’t from this neighborhood. 

With this gallows humor comes sonder, the realization that everyone you meet or pass by carries a story as tangled and rich as your own, even though you only glimpse a tiny thread of it. We’re all lonely wolves in one way or another. 

I try to remember this as a neighbor catches me on my peaceful and solitary walk. Hoping for a little one-on-one with my Maker, I instead brace myself for human conversation. When she shares a deeply challenging hardship, my soul softens and compassion takes over as I consider how I can genuinely encourage this dear lady. 

The morning fog has lifted, and I enter my peaceful home. 

I greet my sons, who are getting ready for their university commute. I miss the mornings we spent huddled on the couch. The early days when they were learning to sound out words, soft bellies and cheeky little grins giggling with delight when they finally remembered the tricky words that refused to follow phonetic rules. I miss the stories I read with adopted accents to keep their attention and make learning fun. 

Now they are young men. Striding through life with purpose to leave the world a little better than how they found it.  My heart beams with pride. 

My husband gathers keys, ID badge, and wallet and tenderly places his hand on my hip. We share a brief but sacred moment, a kiss, a check to see if we can do anything to make the other’s day better, and our ritual inside joke. This man, who says he knew he was in love with me the day I told him about NF, has never wavered in his commitment to me; he is a constant in my storm, a steady pillar to which I can hold on, and I have soaked his shoulder with tears more times than I can count. 

But every morning, there he is—keys, ID badge, wallet, tender hand, silly joke, “How can I make your day better?” 

We have different tasks, these men in my life and I, but we also have a shared purpose: to love our neighbors. 

The family leaves, and except for three red dogs, the house is mine alone.

I start a load of laundry, run the vacuum, and get ready for a video call regarding an advocacy project I am working on.

Suddenly, a tweak to the children’s book I am writing occurs to me, and before it flits away, I pull up my document, tap away at the keyboard, and send a text to my friend, the book’s illustrator. 

Our shared delight at crafting a colorful little world where we can take a big idea and a complex condition and explain it to little minds while also encouraging grown-up hearts excites us both, and I bob my head with a twinge of guilt knowing that my message will redirect my friend from her intended work to the more enticing land of our imaginary friend.

We vow to set up a video chat with another mutual, but very real friend, debating which platform provides the best closed captioning. We may have different misspelled genes, but we are still NF sisters. I am thankful for technology that allows us to connect across time zones and communicate with laughter, tears, and subtitles. 

My advocacy call wraps up, and I jot down some follow-up thoughts that I do not want to forget. 

Next I must message my doctor’s office with a question and set up an imaging appointment. This reminds me that I promised to share my dedicated MRI music playlist with a friend who has an upcoming scan of her own. It is like the story of the mouse who is given a cookie…each task leading to another, a trail of crumbs along my path. 

I consider what I might create for dinner. I pull out bright jars of smoky garam masala, hot Kashmiri chili, and powerful cumin seeds, spooning each into a bowl. I chop chilies and onions (this time it is the allinase that makes me cry). I make piles of spinach, mint, cilantro, and firm paneer.  Mise en place—everything in its place. I love the control that this process brings, and I amp up the Scovilles to challenge my pain tolerance, looking forward to the sting of pepper on my lips.

We sit down to enjoy bowls bright, warm, and satisfying with mounds of fragrant rice, each grain perfect and glistening with ghee. 

Then, to the shock of any guests, we discuss, like tough food critics, the parts that we might change in the future. This is a game we all enjoy, and it does not hurt my feelings. This table is a safe place where we come together and share about our days—the good, the bad, the hard, the joyful… Each success is celebrated, and each challenge is heard. 

Love is always served here. 

After dinner,  I step outside, my shadow tall behind me. The sun is setting, and the sky is showing off her array of emotions; magenta, orange creamsicle, and fading lavender paint the expanse.  

I am reminded to treasure the shape a raindrop makes on a dry leaf; to observe the wayside and pluck the weeds that want to bloom and wither unseen, notice tiny flowers we would sooner mow down, tie them with a string, and create a splendid bouquet; to know I am beautifully adorned with the scars I try to cover; and see the rainbow made from light obscured by the prism of tears.

With the sky darkening behind me, I walk back inside to my family.