For as long as I can remember, I have gone out of my way to make myself feel small. I have shrugged things off around others that are tearing my insides apart. I have tried to make myself appear less disabled than I am, often causing immense internal stress.
It was a way I could help ease the stress of those around me. My needs often make things feel chaotic.
It has not been that long since I have allowed a true depiction of myself to emerge.
I never want my needs to disrupt others. That is one of the things I despise most about my disability. Especially because it is the last thing I want but is a big part of my reality.
Society often views disabilities as an inconvenience or a disruption to the “normal” flow. This is not speculative, but rather a lived observation. For some, that will sound dramatic. If you have lived a similar experience to mine, or been with someone who has, you get it.
Today felt heavy. Today the lights were out. Thinking all these thoughts caused me to spiral. It is so easy to be swept up in the negative merry-go-round of thoughts, thinking about how I did it all wrong, and knowing there are no do overs.
Beating myself up for still struggling to show my true colors at times, continuing to make myself small in certain environments.
When the lights go out and darkness takes over, I am never sure how long darkness will linger. I have had periods of darkness that have lasted for years. Thinking of those times terrifies me.
An unspoken fear is that the lights will never come back on.
That thought pins me down by my throat. I am breathless at the thought of forever darkness. In times like these, I cannot pray or reach out to anyone. Forced into silence by the darkness.
It is so true that the world marches on when the lights are out for some. I think of someone having their best day on one of my worst. I feel guilty for doing the exact same thing on my better days.
Life is never in perfect balance.
I try all the mind tricks I have learned over the years to cope. Tools to keep me calm when my mind is hijacked with worry of my future. The coping skills are not coping today.
Like my disease, darkness is unpredictable.
There is a golden key that can unlock the dungeon of darkness. When plunged into darkness, I forget the key even exists.
In my many years of therapy, I was repeatedly told to make a gratitude list. I was not even able to pick up my pen, how could I write the list? When I envisioned my gratitude list, it was blank.
Writing this column is one of the greatest joys of my life. In many ways, it has healed broken parts of me that I did not know existed.
As I told my Word Warriors group last Friday at our monthly get together, the hardest part of writing about my disability is walking that oh so fine line of speaking my truth without it reading as a plea for pity. I fear my truth will become distorted.
Today, I was able to get my hands on that golden key by the end of the day. And that gratitude list? It is not blank anymore.
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.com and reach her on Instagram @ashinneman.