Let’s begin in the middle: A letter to friends during a new season of life

Hi, friends. It’s been a minute since I’ve written to you.

Some of you are well acquainted with me, while others are just beginning to peek into the window of my life as I put pen to paper. Yes, I know this is a digital age, but my love of vintage things forces my imagination to envision myself pensively writing this to you, with feathered quill and ink pot, from my enchanted cottage in the woods as magical fairies flutter among the sunflowers in my garden. (Do I have access to electricity there to scoot my butt around in my power wheelchair? Why, of course! Even the most nonsensical things flow in perfect sense along the river of our imagination.)

As an Aquarius, I also have a realist streak in the wildflower bouquet of my persona. For my newest readers, I’d love to offer a reintroduction of myself and tell you a story, in my best attempt at brevity, of what’s been evolving in my world as of late.

Here it goes.

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July 22, 2021 Columns by Katie Napiwocki

Inviting People to Sit at the Table of My Disabled Life

I’m Katie, and I really love helping people.

I’m a recreation enthusiast, accessibility advocate, writer, nature admirer, and thriving wildflower. A Wisconsin girl at heart, I strive to paint with my words, illustrating a soulful connection with nature and outdoor adventure. With a background in human development and family studies, I find fulfillment in encouraging others to embrace their distinctive beauty. When not engaging in advocacy or writing, you’ll likely find me hiking an accessible trail, adoring a sunset, or eating a s’more somewhere.

Oh, and of course, I’m beautifully disabled.

During toddlerhood, I was diagnosed with spinal muscular atrophy (specifically, SMA type 2), and I’ve used a wheelchair for freedom and mobility ever since. I grew up in a small town where there were zero people like me.

As I transitioned into adulthood and began to explore the world (not the entire world; mostly the Great Lakes region — but you’d better believe I have a bucket list), I noticed there were a few more people like me out there. I made strong connections with fellow disabled rebels and sweethearts alike, but I realized something very quickly: This world was not built for those of us with SMA or other disabilities, and we travel pretty unique paths as we attempt to propel ourselves beyond societal barriers. Most of the time, we just want to be seen and heard.

And a good ramp is always helpful.

Journeying forward, I’ve learned endless lessons in navigating life with a disability. I’ve recruited many caregivers, became adept at hard discussions, flirted with comfort in the uncomfortable, attempted independent living (which is how I’m living today, so that’s a win), basked in the highs and lows of interabled relationships, found strength and light in the most curious places, planted boundaries, removed boundaries and replanted them, dabbled in self-acceptance, and fell madly in love with adaptive outdoor adventure.

Somewhere between finding my voice and trying to keep my beautiful web of independent living intact each day, I met the love of my life, and I’m on my way to becoming a ramp-mom to his two incredible little humans. In our home, we say ramp-mom instead of stepmom because, well, stairs and steps are menacing players of the other team.

I feel like I’ve lived. Really lived. And there’s still so much more to discover.

Yet I think back on all the moments and days during my adolescent and younger adult years in which I wished upon wish to have someone like myself in my corner. Someone relatable to guide me. Someone who knew what this life is like, even if just a smidge and a pinch. I realized the value in a shared experience of disabled life and the professionals who work in this realm.

So I did something about it. I became an integrative wellness coach, with a collective focus on disability mentorship, inclusive wellness, interabled relationship and intimacy guidance, adaptive recreation, caregiver dynamics, and independent living.

As my courses and training compounded and I learned to coach from a holistic perspective that touches on emotional, mental, physical, and spiritual introspection, I found an unlikely yet desperately yearning student in myself.

In a previous column, I wrote about how living with SMA doesn’t render us immune to myriad hardships and joys that have nothing to do with SMA. Over many recent moons, I’ve closed several lengthy chapters. I’ve started anew more times than I can count. I’ve had to allow myself to be immersed in the wild weeds, the blazing sun, and the rugged trails. I needed to give myself permission to feel all the things before I could really muster the words to tell you my story about all of it.

Thank you, from the bottom of my heart, for continuing to be my audience.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.