Poems, Prayers, Promises, and this Magic Moment

I've been “surviving the night just to get through the day” for a long minute now. 

That's a line from my poem “Hugs from Strangers.” When I write poems and songs they tell stories, like I'm doing here, but sometimes they tell stories of the things I can't say. Sometimes songs and poems tell my emotional stories. The moments that made me feel something deep. 

Like this one that I wrote after reading the medical record of my birth. 

33 Weeks  

 

With a flat head and crossed eyes; 

The brain bleeds, the lungs gasp, and the heart tries 

From the first minute – I shouldn't be alive. 

On the eighth day, how did I survive? 

Life-threatening and I couldn't even see; 

No wonder chaos is where I thrive.

Clap your hands to my surprise. 

The mirror of your truth and your lies. 

Cut me open; ignore my cries. 

Mother, dear, we almost died.

I long to sit by your side.

Father of mine, the jury is out from inside. 

33 weeks until spontaneous combustion;

May the fire burn until the lights go out. 

In life's gratitude and pain's obstruction. 

This close to becoming nothing.

That close to enduring everything. 

The razor's edge between first and last breath.

I'm alive in the shadows of death.

That poem tells you the story of my birth and what I felt reading that personal history in a matter of fact clinical document. I've told parts of that story here and in other ways, but not quite like that. 33 Weeks is my first reaction to knowing that I've fought for my place since minute one. 

It's difficult, even for me, to fathom that I'd go from 3 lbs., 11 oz. to 6’3”, between 190-205 lbs. I'd not only dwell in the shadows of death, but I've thrived in spite of it. My life with Cerebral Palsy and complex trauma isn't sunshine and rainbows, it rarely has been if I'm being truthful, but there's a flame that burns bright inside that knows in the sense of true knowing that life is more meaningful than the baggage and the bullshit. 

There was a time I'd give that credit to God but that time has passed me by. I've uttered thousands of prayers, I know many by heart, and yes sometimes they kept me going through the hard times. One name of the Hebrew God is tattooed on my flesh (literally) and the other on my heart. I did not wake up one day and say I don't believe that's how I survived everything I have anymore. I spent twenty years reimagining my role with the divine presence. My heart made peace with two things, the Church is no longer for me and it made that choice before I did. Also, I'm okay not knowing if God is real, fake, silent, forgotten, selfish, nonexistent, not who I thought they were, and so on and so forth. God has most of the chapters of my story – this one's mine. 

I know the promises of God well enough to teach them because I did for a long time. It's not my intent to trash your expressions of god. It's my intent to own mine while showing how that's evolved with time and context. Arguably, this season is about keeping promises to myself instead of God or others. I've spent a lot of time telling stories that I never used to tell and I'm still figuring that out. I know you want to know how life with CP makes work challenging, how I navigate that, and what it's like to get through the day. I promise I'll get there but so much of this work involves translating vulnerability, subconscious thoughts, and the hidden to the visible. 

The magic moments come when you can feel something from what I share with you. When you can put yourself in my shoes, not necessarily to understand me, but to recognize that you already know how to be an ally to the disabled if you're willing. My experience is mine, but I'm guessing everyone knows what it feels like to have people make assumptions about you that you can't control. How does that feel? Publicly sharing that I'm disabled carries risk. 

•••

In grade school, I had an IEP and I attended special education classes. I did some variation of this from preschool through high school. I had time extensions for tests because my vision isn't great and I don't read quickly. If success is solely determined by how quickly something is done then you'll likely say I'm not fast enough. 

In my undergraduate studies, I had a few time extensions on exams and pushed deadlines for longer papers. Unlike in my primary education, I had to put myself out there with student services and ask for accommodations. I've mentioned this before, but I was told at the age of nine that I had to advocate for myself. Decades of self-advocacy has been a journey of fighting to be seen, heard, respected, and loved. 

I don't like asking for accommodations because I internalized the message that in doing so I was less than. I've spent most of my life jumping the hurdle of that message. Work is all about performance. I've never really felt comfortable asking for disability accommodations at work. 

When I worked in youth ministry, it was difficult enough that I would have to recruit volunteers to drive for events and trips because I don't drive. I became good at asking and most people have been happy to drive for me when asked, but that doesn't mean I like asking for it. 

During my first library directorship, I didn't even tell my board President that I didn't drive until I was about to move on to my next library, but the staff all knew. The Office Manager would deliver the bills to the finance department for me and sometimes I'd ride with them to the Town Hall intentionally to make sure I was having direct interactions with my colleagues in the Town offices. 

I've ridden in so many people's cars, I doubt I could count them all. I don't like asking for rides, but I don't like to hide that I don't drive. Three years ago, I made my first formal work accommodation around driving that changed the location of a routine meeting for me. It took a lot for me to ask for that. In some ways, that job and the interview process for it set the stage for me to start talking about my disability experience. 

•••

This is just a glimpse of why I started telling stories through poems and songs. I've never prayed for my Cerebral Palsy to go away, even though others have. I don't make promises that I don't intend to keep. I promise you I wouldn't be putting my stories out there if I already felt seen in my disability experience or if I was too uncomfortable having radically honest conversation around disability awareness. Being seen, heard, respected, and loved for who I am is a magic moment kind of thing that tends to be a bit scarce in my experience. But, I'm grateful for every person that listens, that comes back for more, who asks genuine questions, who asks what I need, who seeks to be an ally, who feels something from my words, or who feels seen themselves because I used my voice in poems, prayers, promises, and magic moments.