This is my RARE.

Face of Rare., This is RARE. -

This is my RARE.

I don’t remember much of last year. Most times I have felt like a zombie, but my meds bring me back to life.  Sometimes I feel better in the catatonic state of brain fog, pain, and exhaustion. That way I have no sight of all that I have lost; all the things that had been slowly and softly falling to the floor like a pin dropping.  As I walked painfully through life, I couldn't hear the love for my career, my hobbies, my social life and personality fade. At the time, I knew it was bad, and I was sick, but I assumed this would get better, I would get better,  and I could just turn around and pick up all that has faded away. I couldn't care less what was taken from my bones and body for I had already felt bare to the bone. While I am far from what I thought "well" would feel like, I can now look back and see how far I am from who I was.  As I started to awaken from the brain fog and look back I saw nothing, nothing to pick up, no evidence of the girl that I once was. So here I am, left with a different fog - one of anger because of who I have lost along the way. Every moment of every day I am reminded that I am no longer that girl nor capable of even half of what she was capable of doing.  Every move I make is a fight and yet all I hear others say is, “You seem better.” But little do they know how dead I feel on the inside. Aside from being physically up more hours, this disease is constantly hiding behind my pale Irish skin, freckles, red hair, lop-sided bun, and fake smile. For a long time, this disease had no face and left me to suffer in silence daily.  To the world, there are no good or bad days - they are the same to the naked eye. Therefore, to hear from others how much “better” I am only filled me with more rage as I tried to smile back and act appreciative for their kind words and gestures.

It wasn’t until tonight.  Frustrated once again for needing to take medication to stay awake and struggling to complete things on my to-do list.  I sat in our new guest room, my wife set up a small desk in there to make doing our monthly bills easier for me. As I sifted through the mail, I came across the newest denial from our insurance company.  Fueled again with rage, I FaceTimed my mom. Not entirely sure why I called her, maybe to vent, maybe because I am scared, or maybe just to prove a point, or maybe because she still has hope and fight within her.  Following a pointless discussion that neither gave me hope nor support, I continued to sort the bills and when I reached for the checkbook I noticed a stack of papers. In that stack of papers I found articles, ones that I claimed to have already read.  I don’t know why I started to read them at that moment. There were a million and one things that were more important for me to do and spend my little energy on, but I continued reading. I was expecting to feel angry again, at the insurance company, at my past doctors, at my disease, at those who didn’t understand, but I didn’t feel anger.  The more I read the less angry I felt. It was like whoever wrote that dry medical journal understood a part of me that I didn’t. The medical jargon felt like poetry and I could not consume enough. And just like that, I was done reading, there were no more words for me consume and I was once again alone with my mind.

It was at that moment that I knew I needed more.  I wanted absolutely every book on this disease.  It wasn’t until I wanted to know as much as possible that I was shattered again by the deafening fact that only 29 people have this disease and there is nothing else to read. Floored, I messaged my family saying that we needed to find something, articles, journals, books.  We needed to do all the research we could, gather absolutely everything from personal stories to FB posts. We needed it all and it needed to be specific to my disease. And at that moment, a spark I haven’t felt, thought I would never feel again, went off. If there was nothing, then I needed to write it because no one should suffer alone behind this or any other rare disease. My mother and wife should have told me to take it easy and go to bed, but they didn't.  Their responses were simple and identical...

"Okay, you have arrived... We have been waiting nearly two years for you"


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