Fighting Through Flares, Support

The Scary Way Brain Fog Steals Your Life

Your greatest gift usually hides behind your greatest fear.  The problem is that you have to get past your fear to find it.

Until recently, my greatest fears were relatively normal.  They didn’t involve ideas like losing cognitive function or not being able to control my autonomic nervous system.

Incurable, progressive illness has a way of changing what you fear.

My entire life I was clever.  It was an ingrained trait.  I never realized just how brilliant I was.  I had a knack for being extremely articulate and witty.  I had a way of verbalizing things with such skill that it became obvious to me and everyone around me that my greatest gift must be teaching.  I love to learn and wanted to share that passion.

I instinctively knew how to command a classroom and engage minds.  My ability to think quickly on my feet maintained my students interest and kept the classroom buzzing with an alert readiness to learn.

Until slowly, methodically, and all it once it stopped.

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I really just thought I was tired, and I guess I was, but my gut instinct kept sending me messages my conscious brain didn’t want to hear.

There was something wrong with me.  

I began to feel foggy, like when you wake up without enough sleep.  Then I found myself struggling with simple tasks, things I have always done almost mindlessly.  I would be driving to school and suddenly not remember where I was going or which way I was suppose to turn.  I couldn’t get the words I had painstakingly collected over the years out of my brain through my mouth.  I knew they were up there floating around in my mind but I just couldn’t seem to connect to them and bring them out.  A student would ask a question and I couldn’t comprehend what was being asked.  This was a completely bizarre phenomenon.

I rationalized the facts.  I had two young children.  All moms are exhausted.  I will snap out of this.

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A few days later, I saw the brake lights.

My brain registered that the red plastic bookends behind the car I was staring at had lit up. I just couldn’t get that registered information to cross into comprehension and reaction. My brain refused to allow me to process it and I slammed right into those shiny lights.

Thankfully, I wasn’t going fast.  There was no irreparable damage or injuries.  There were, however, two scared little boys in my backseat and one terrified, guilt-ridden, mother with a sinking feeling of reality in the pit of her stomach.  There was something wrong with me.

Not long after, I sat on a bed coverd in crinkly paper, holding a list of symptoms in my doctors office.  The list was long.  My eyes and mouth had been dry.  I had a few unexplained fainting episodes.  I always felt like I was coming down with a cold.

Encouraged by family members in the medical profession, I had written down any and every odd thing I had experienced in the last several months.  

I was nervous.  I was nervous that maybe it was just all in my head.  I was nervous that maybe it wasn’t.  

My mind ran over a million different scenarios that all scared me in some form or another.

Finally, I worried my doctor wouldn’t listen to this alarming instinct that something was wrong,the way I had.

As I said, being diagnosed with a rare disease or a chronic illness changes your fears.  It also makes you face those new found terrors.  

If I had always identified with myself as being clever, articulate, and a quick thinker, who was I now that inflammation and a lack of oxygen to the brain seemed to take that away? That was what I had seen as the best part of me and now it wasn’t there anymore.

To make matters worse, people around me didn’t understand what was going on.  People I didn’t know would observe my moments of inaptitude and make snap judgements about my abilities.  I found myself time after time wanting to cry out, “No!  You don’t understand, I am smart!  I am capable!  That is not me!“, but in my head I could hear how desperate and hallow it sounded which only made me realize my frailty all the more.

 

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I wallowed in this struggle for quite awhile.  I felt lost, I felt alone, I felt scared.  The funny part is, the cognitive issues my autoimmune disease causes are not even the biggest physical challenge I have.

They are a small part of a whole physical problem but they had the biggest impact on me because they were the most tightly tied up with my expectations for myself and what I have to offer the world.

Chronic illness forces us to face out fears.  It is a pivotal moments that shapes our entire future.  We get a choice.  Do we turn and run again or do we try to see if our greatest gift is actually there, behind it?

For me, that meant trying to be articulate.  It meant actually speaking and seeing if it was worth saying.  That is why I started writing.  It is the birthplace of AutoimmuneMess.com. It is where I tentatively uttered a few words into the chasm of cyberspace and waited to see if they sounded okay.

Writing poured over my soul like a healing balm, soothing and comforting me.  I found a way to gather those fleeting thoughts and words that I needed to express who I was.  It didn’t take long to realize that for as lost, alone, and scared that I was, there were many others facing the same things in their diagnosis.  Words were our support, comfort, and bond.

 

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When your  greatest fear changes, so does your greatest gift.  My greatest gift is no longer what I thought it was.  In fact, I no longer even teach due to my illness.

My greatest gift at the moment, is sharing my journey with people like you.

People who remind me I am not alone.  People who are quick to remind me that my crazy struggles are actually fairly normal within this chronic disease community.  People who show me how to handle it better and how to be grateful that I don’t have to handle as much as them at times.  People who inspire me and make me think deeper and differently about my challenges.

My greatest gift is being one small part of the voice of the bravest, most tenacious community that ever existed.

 

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