Preface

January 11, 2021

I didn’t write with an audience or end result in mind. I didn’t sit down to write a book or a blog; I didn’t envision anyone on the other side of the page. I simply wrote because I had to.

In 2014, when I was nineteen years old, I was diagnosed with a Chiari 1 Malformation and Syringomyellia after I suddenly lost the use of my right arm. Six days later, I had brain surgery to remove part of my skull and a vertebra to resolve the syrinx and treat the symptoms. Ten days later, I was hospitalized with a complication, chemical meningitis on the brain. After four days of suffering at home and four more days in the hospital, it resolved itself. Six months later, I was diagnosed with Vascular Thoracic Outlet Syndrome and had my first right rib removed. Soon after that, I was diagnosed with hyperventilation-induced syncope. Then, several months later, while driving home from school, my legs stopped working. After intervention by the paramedics and a night in the ER, it was determined I had pernicious anemia and I started monthly B12 injections. I had a couple of years off, then I was diagnosed with an adrenal tumor. No intervention has been recommended at this time. A year later I was found to have an arachnoid cyst as a result of my brain surgery and arthritis in my neck. All of this in the span of five and a half years was a lot for me.

I have a hard time understanding what I’m feeling at times. Usually, I’ll feel a build of emotion, an intensifying churning inside my mind that I can’t identify. It confounds and frustrates me. I can focus on little else. Then, after days or even weeks, an opening line will pop in my head or a situation gives me a little bit of insight and I know how to start. So I pull out my laptop, open my OmmWriter app, snag my headphones, press play on my moody “writing” playlist, and type out my opening line or scenario. From there, I pick my way through the entry, pouring out what has been churning inside me until it’s spilling out on the page. I pause and search for the words to explain, testing out different phrases and sentences until it feels like an accurate representation, and reread to reflect on what’s been listed and listen for what’s niggling inside of me that’s missing from the page.

After an hour or two, I feel calm inside once again. The storming emotions that I couldn’t name are neatly organized and expressed on my computer screen and I feel quiet. Most times, I surprise myself with what I feel and what was tied together and contributing to the feeling and what’s written out. All the time, I feel better. I feel more centered; I know myself a little better.

And then it happens again! I’ll go days, weeks, even months in-between writing something, but I know I’ll always write again. You’d think I’d catch on quicker to the building storm of emotions and start writing sooner, but no. I always push it off and procrastinate until I feel worse and then all I can do is write. It’s a little terrifying diving deep into your own heart. I don’t always like what I find. 

So I didn’t intend for anyone to read this.

This isn’t a story, it’s not comprehensive. It’s a compilation of entries, each one dealing with a component of chronic or serious illness. It’s my way of understanding and my way of expressing, my way of healing. This is written over years and isn’t complete. Over the course of the entries, you’ll find my perspective or attitudes have changed, and sometimes they still haven’t changed yet. This isn’t written from a completely healed position, but from in the process of healing, and I don’t expect I’ll ever be completely, absolutely healed. My therapist tells me healing is like an onion, you peel back some layers to find more exist, but every layer you peel back means there are fewer and fewer layers to be peeled in order to reach the heart.

Some might read these entries and say, “Madison, this is nothing, my medical stuff is way worse.”  Conversely, some might read this and say, “I only have headaches or migraines occasionally, there’s nothing here for me, my stuff isn’t that bad.” But we don’t determine the validity of our experiences by measuring them against another’s. Regardless of the severity or the tolerability, everyone’s pain is valid. This is mine. Any form of chronic illness that disrupts your life still impacts you, and it’s okay to acknowledge that and make space for that. And even a person with an incredibly serious illness is still a person apart from their illness and isn’t limited to their diagnoses. Pain isn’t a competition, and when we treat it like one, we lose out on the opportunity for connection, we forfeit the joy found in loving and being loved.

This wasn’t written to help another person through anything, but maybe by sharing our pain and perseverance we can also share in our hope.

I don’t think I have anything left to cover in our preface here. So it looks like it’s time to turn the page and begin. Because,

This Might Be How You Feel.

To hear this entry read aloud, click here.
To watch this entry in American Sign Language, click here. (Coming Soon)