An artist piece, showing a woman with a decorative dress and butterflies floating above her hand.

How My Chronic Illness Transformed Me Into a Butterfly


In 2014, I was still stubborn. Burning that damn candle always at both ends. Racing out the door in morning, nodding at the kids and hubs while the family prattled about their day. I wasn’t present. I was panicked, my thoughts a mile, 20 miles ahead. I had anxiety attacks all the time. Ungodly metabolism like a pat of butter in a searing frying pan and fighting the grip of a ravenous eating disorder that was so severe my body feasted on my muscles.

Have you ever had your muscle gasses measured in your urine? Good times.

When I got sick I mourned the lost me. In perfect hindsight, it wasn’t ever ideal. I fought against myself every single day. Every moment. I shone outwardly, had studied the art of polish and I could pull off a dazzling smile and nod like a bobblehead, but I was a veneer. My body coated with a thin gloss that could crack with a wrong look. I overanalyzed and examined other people’s opinions ceaselessly. Constantly seeking approval that was never enough…and was never found in me.

Still, I grieved when the ground was replaced with a listing ship plank. I grieved what I thought I was losing. The person who was able to travel and seize every opportunity. Except I hadn’t done that. I lived in the grind of someone else’s dream. That was reality. I was not confident in my core, reaction-parented and waited for the end of my relationship. I didn’t believe in me.

So, who was I really grieving?

The dream of the person I know I can be, and the one I am shooting for “if only I weren’t sick.”

It’s not real.

I lie to myself.

Start to rip the dusty carpet off the stairs, get two minutes in and call to my hubs who has to take on the job with as much grace as he can. Sometimes I think he’s a better person than me! I lie to myself, a puppy will not exhaust me. I lie to myself that I can keep up with the sick grind of the superstars.

Because I am afraid business will dry up if people know the truth.

I had a breakthrough yesterday. Spoke with a coach like one I had never met before. I hope to work with him one day.

But he asked me, “Do you think the butterfly would ever want to go back to being a caterpillar?”

Of course, we know the answer. No.

So,, in the interest of full transparency, I am going to share with you. I am a butterfly who can accomplish different things than that caterpillar, and there are some things the caterpillar did that I will not be able to do anymore. For the first time since I got ill on April Fool’s Day (worst joke ever!) I am going to tell you… it’s hard.

It’s hard, but it doesn’t mean I don’t do it.

It doesn’t mean I haven’t had to innovate new ways of working. If I have to take a nap or drop, guess what the decision is? It’s hard and sometimes I can’t stand the dizziness. I can’t stand the natural curiosity when I just want to shop (occasionally, from a chair).

“Oh, did you hurt yourself?”

“No,” I say, not caring about awkwardness and wanting to get on with whatever I am doing. “I have a disease.”

It’s hard, but I have slowed life down and expanded my work hours so it’s manageable. It’s hard and I thought I would lose everything. But instead, life got deeper and richer.

Life is a crazy mofo.

I don’t want you to see the facade. It is really hard to be in this body every day, but I do it, endlessly thankful for a passion that pushes me and sometimes drags me! I am humbled and excited and then discouraged all in the same five minutes.

I know some peeps are not so lucky. I am a naturally optimistic person and that makes it so much easier.

So, butterfly me can’t go to regular yoga without needing assistance to walk to my car afterward.

Butterfly me can go for 20 minutes maximum, or sometimes not at all.

Butterfly me can use the mental trap in my head to latch onto ideas and inspirations. Caterpillar me would turn those ideas over and chastise imperfect action.

Butterfly me traded one sick body for another, but in a way, I am healthier. I am definitely happier.

I needed to break to get there.

Butterfly me knows there is a reason for this illness; it is to help others reach their own dreams despite the perception of their own limitations.

So, I say goodbye to the lofty hope that I will ever be physically and “normally” functional again. After more than three years, I can finally open my arms to butterfly me and tell her I’ve been waiting to hug her tight for all her efforts and I am overjoyed to accept her just as she is. She is a pretty great little cookie.

I haven’t been very nice to myself. Unforgiving. Harsh. Judgmental. Ashamed. Angry. Disappointed. Maybe you can relate?

That bullshit ends today. We all have our stories and our things.

I love my life, but it’s not a sanitized Facebook post. It is hard. I cry. I rage. I slump.

But then…I rise. Like we all can.

Weirdly, I wouldn’t trade out my transverse myelitis and suspected multiple sclerosis. Because I became whole as I crumbled.

Maybe my disease even saved me?

What is waiting to save you that you are denying
?

Are you being kind to yourself? Are you respecting all of who you are and who you are not? Why?

What are you fearful of losing if you get honest?

One more tie cut to the old me. I am better for it today. And tomorrow. I accept this new chapter and everything it will bring.

I hope you will, too.

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Thinkstock Image By: artant

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