In eight years

For those of you who do not know me, I met a different version of myself eight years ago. In an instant, I felt like a brand-new version of me.

For 44 years, I lived in the confusing and isolating space of the uncertainty of my identity.

Then, one fateful day, I was released from the grips of the unknown and immediately thrust into a space of feeling completely known, by me.

It is mind blowing to me things I have done in the eight years since my diagnosis of Bethlem Myopathy Muscular Dystrophy. A diagnosis that was quite literally achieved through blood, sweat, and tears. A battle tirelessly fought and won.

What was the prize for such a long and hard-fought war dwarfing for my identity?

A new heart, and a new chance at discovering my purpose. A heart that was painstakingly shaped over those 44 years.

The process changed the landscape of my heart. What once felt like a force inside me that relentlessly fought against me, suddenly felt like an army of people, just like me, fighting alongside of me.

I am not the only person who has ever lived through decades of uncertainty. Far from it. That was hard to recognize while living smack dab in the middle of it. Buried alive by my own pain and frustration.

The funny thing is, that I did not necessarily have to dig my way out of that hellscape. For as much time as I spent free falling into that space, getting a diagnosis felt like a gentle nudge through all the muck and mire that had sunk me to the bottom of the pit.

I was catapulted to a fresh start.

All the confusing times of misdiagnosis, bullying, silent pain, and tears, and being left behind did not go away, but they took a backseat to my newfound version of me.

The new me, does not dwell and wonder anymore.

Those scars will always stay with me, but they no longer get a say in how I conduct my life.

I am in this space writing, speaking, and advocating because that is what I chose to do. Nothing is forcing me to do any of this.

Having a disability does not make someone obligated to pour their heart out to strangers’ week after week or volunteer their time endlessly. It is a choice. For a long time, I was not ready to do any of that.

On Sunday, I celebrated my eight-year anniversary of getting my diagnosis of Bethlem Myopathy, a rare form of Muscular Dystrophy. An estimated 1 in 200,000 people live with this disease.

That means, that I do not see people like me on a regular basis, or ever really. That means I must seek out friendships and connection of others who fight my same battle. Who know the nuances of living with this disease.

Each year, I take the time to celebrate this most miraculous and cleansing moment in my life. Sometimes, I celebrate alone, and other times my husband or my sons join me as I light my candle symbolizing my new beginning. Either way, it deserves to be celebrated.

It is a day of reflection and thanksgiving for the unique path that has been my life. I feel honored to have been trusted with such a precious gift.

The gift is that at the end of myself, I got to see that my purpose extended so far beyond me, that it feels endless with possibility and chances to serve, help, and connect with others.

Each diagnosis anniversary I write about how it has changed my life. Each year, I see growth into the new version of myself.

This year, I was inspired by my son Jack who did his first marathon last weekend. I suddenly felt like I wanted to light my celebratory candle at the top of the “big hill” at MacGregor Park.

If you have been around, you know that is a challenge I have been doing for several years now. If you know the “big hill” at MacGregor Park, then you know it’s no small hill.

It was my hardest attempt yet. I doubted myself all the way to the top, but I got there. One small step at a time, with my husband’s encouraging voice driving me to the top.

What a way to celebrate a day of renewal, and a reminder to never give up hope.

Until next time…

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. She is the recipient of The Reporter’s Winter 2025 Ink-Stained Wretch award. You can find her blog at humblycourageous.org and reach her on Instagram @ashinneman.