by Amy Shoemaker
My head was on the bottom stair. Glaring at the ceiling, I had an odd sensation of never having viewed my home from that particular angle. In fifteen minutes, I needed to retrieve my children from school. Only two blocks away, they were merely around the corner. Yet, I was helpless. I crawled to the phone.
“Don’t let it define you.”
At a time when I didn’t think I could get any lower, I’ve never been told something more horrifying. Define me? What did that mean? I fought against this statement. Any negative event, unwanted or hated thing, I pushed away into a box labeled, ‘This is not you.’
Eventually I realized, the collection in the box was me. They were the very things that made me who I am. I’d grown as a person from a sequence of misfortunes. Every hardship taught me a valuable lesson. If I left the past in the past and kept moving forward, it didn’t effect me adversely.
My healthy self was a survivor, rather than a victim. In the occasion of reflecting on tribulations, I could explain what I’d been through without being the object of prey, succumb to casualty or be duped the fool. And most importantly, I could forgive myself for not handling every situation perfectly. Even though some adversities took work and time, I made it through the other side. Years gone by, I was confident my autobiography didn’t define me. What I didn’t know then, I know now. Here I am. I had survived.
All fine and dandy, except for one aspect in the box that continually dragged me down. As a teenager, I was diagnosed with a neurological condition. Over an entire lifetime, I battled to accept it as a genetic, very real, irreversible disease with no cure that is debilitating and not my fault. In the early days, I coped with a reasonable amount of effort. As symptoms increased so did the level of managing my illness.
November of 2004 was a game-changer. Over twenty-nine consecutive days in one month, my affliction dominated me. Time to get serious. I went down every road on the map toward getting better. Doctors, lab test, prescription medication, lifestyle changes, holistic and spiritual endeavors all brought me back to the same destination, the same reality. My disease was a monster with permanent residency.
Despite how lonely it seemed, I knew I wasn’t the first person on earth to deal with an affliction. I wasn’t going to let it Break My Stride, cause I Won’t Back Down. Some days the Journey told me, Don’t Stop Believein’ or Let It Be and have confidence there will be an answer.
Sure, I was Staying Alive and I Will Survive. But I was constantly treading water, fighting to stay afloat. I was exhausted and impatient. The rage forming within me felt malignant. It boiled hot in my veins. My life was good and this curse was robbing me of my blessings.
Kansas guitarist Kerry Livgren wrote Carry On Wayward Son at a time when he perceived his goal to be inaccessible. One foot in front of the other, I went with the punches. Each time the illness attacked my body, it was like being in a boxing match. There was no one else I could relate to more than Rocky. Like the Eye of the Tiger, rising up to the challenge, I went one more round when I didn’t think I could.
I eventually came out of the black hole and had a few remarkable years. 2010 was extraordinary. I’d almost forgotten I had an illness. Mistake number one, never let your guard down. When my body started to fail again, the struggle was even greater. When you have an invisible disease, you become a professional at hiding your truth. Internal agony doesn’t look like it feels. Faking a smile and pushing through was a deem-able coping mechanism in my youth. But time was catching up with me and all the bulldozing took its toll. I’d only begun to hit middle age and felt older than my grandmother.
I was drowning fast. In attempts to stay above water, I founded a support group. With great effort and purpose, I exposed my fears and vulnerability. However, the candor came with draw backs. Friends and family that had no idea how sick I was suddenly swooped to the rescue wanting to kindheartedly cure me. I tried to educate anyone and everyone that questioned the existence of my reality. In the whirlwind of tending to my needs, I was constantly in defense. I was on trial with no justification. The guilt, anger, sadness, and disappointment became worse than the physical pain.
This was not how I wanted to be. It’s not the wife I wanted to be, the mother, the grandmother or friend. “This is not the person I want to be!” It was defining me.
In the book of definitions, the verb define is to explain and describe the meaning and exact limits of something.’ Limits? Hit me with a two-by-four. It was definitely defining me big time. I wanted to padlock that stupid box. Restrictions were only a tip of the iceberg. I was divided into two completely different people. Sick and not sick. Pain and no pain. Well and unwell. Either I was me or not me.
In depths of reflection, I determined in fact my disease is me. It is me like the man without a leg walks with a prosthetic. It’s me like a horn makes the unicorn not a horse. It’s me like the third wheel balances a tricycle. It is me like the peel on a banana. Unfortunately, I can’t shed my skin and leave the disorder behind. I am a soldier every minute of every day.
If this is hard for you to understand. Don’t. Stop right there. I can’t. And I won’t. Because unless you’ve sat in the dark depths of your closet for hours, you may not be able to visualize it. Unless you’ve had to take a nap after you took a shower, you might not get it. If you can imagine birthing a calf through your temple, you might comprehend the pain.
No one wants to grieve over a life they’ve lost. The disease part of me limits access to the things I cherish and holds my passions at arms reach. It determines how my day will unfold. I’ve had to learn to give in to what it needs. And welcome it like a long lost friend when it arrives at my front porch or pay the price for rejecting it.
When I took a second look in the dictionary, there was another usage for the word define. To ‘defining a person’ is to identify the essential qualities of an individual. The disease is not all of me. I am so much more. I am an intelligent, artistic, honest, fun-loving silly person. I love life.
Michael J. Fox said, “Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.”
We often hear in self-help memos, ‘learn to say no.’ Take charge of your life and value yourself. This is definitely good advice. So is saying ‘Yes.’ Say yes to yourself. Stay focused on what matters most. You. Yes, I will put myself over the needs of others. Yes, I can eat comfort food when I have a bad day. Yes, I will limit my workload in order to get rest. Yes, I won’t beat myself up for missing the things I love with the people I love. Yes, I will go for a walk today. Yes, I will do nothing and not feel guilty.
“Don’t let pain define you, let it refine you.” -Tim Fargo
Australian comedian, Tim Minchin said, define yourself by what you LOVE. I love who I am for exactly who I am, wrapped up with a shiny bow.
Define me? Open the lid. Inside my giftbox is an illness that has taught me courage, integrity, appreciation, patience, perseverance and most importantly love. To love myself, because I’m worth it.
Yes, I have a disability. Yes, I am a migraineur, a brave and fierce migraine warrior… and so much more.
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