Lyme Files: First Year Out

First Year Out
You have to understand, when the world drops out from under you and scrambles your brain so you don’t know. . stuff. .  it takes a long, long time to not think that is going to happen again. I would say this haunts me more than I let on. It's gotten a lot better - but it's always just right there. I can see it sitting in my field of vision.

Each spot is where 5 inches of need went in

It happened to me five times - mostly on Babesiosis.

This "first year out" was the first year that didn't end in a relapse and going back on medications.

Five times before this, I had to go back on IV, no PICC this time, just three IVs a week. My veins were hiding and scarred from all the blood draws and IVs Dr. Burke tried to get a port in me - it didn't work.

For a while, everything that happened to me was relapse.

Everything was fear. I got the flu at some point - my mind said: "You had a year. One year and now you need to go back."

For a while I thought this was some cruel trick for me wishing I was sick again rather than dealing with how to live without being sick. But it was worse because I carried a citizenship in both places and they were incompatible with each other.

Speaking
One of the first things I had to get use to and maybe that I first realized was that I had opinions. When people were talking ideas would come into my head and this time I had the energy to express them. The problem was, the disconnect between thinking and speaking due to brain damage.

I would be listening to people talking and want to say: "We should go to the conference room" and send the signal to my mouth to say this and I would hear myself say, "Workout." Or I would want to type, "Good luck" and I would type, "Food."

(Both of these are total true stories, by the way).

Even in these moments, people would say "We all forget a word" or have a "Freudian slip." I think it was to make me feel better but it's actually pretty terrifying and also totally destroys your credibility when you hear yourself saying words you are saying.

To this day, sometimes odd words or the wrong words come out of my mouth. It's far more rare since I think at this point I have said all the words I know. But the first time out of the gate with my vocab - I would just shake my head because I couldn't correct myself. I would just say the same wrong word.

Memories Flooding Back
I remembered things.

You have to understand, my brain was totally not functioning. At one point, I forgot what my Mom looked like. So, my memory was inaccessible in huge chunks. It's not like in the movies when someone has amnesia. Your brain stashes stuff all over the place.

I couldn't remember a lot of stuff before 1996 but I had a couple memories of my childhood. I didn't remember how to close a drawer but I knew where my room was. I'm not really sure how the brain works but it tries to work even when it's not working.

Since I had hallucinations with strange people walking around or talking to me - I wasn't really rattled by this stuff. Somehow I remembered that, too.

Me remembering tadpoles

Now that the infection was going away, my brain was healing (yes, it heals!) and these connections I had lost were coming back.

Things were blocked. Not lost.

They didn't come back in some beautiful way - they came crashing back in total living color. I literally relived things that had happened to me.

That's kind of brutal if you think about the worst thing that never happened to you suddenly happening but it happened years ago. You don't have many people you can talk to about this stuff.

I was driving this one time, and I saw the squiggly "slipper when wet" sign and my brain exploded with everything I had ever learned about tadpoles becoming frogs. WTF? Right?

Boom.

Didn't know I didn't know that but now I know I forgot it and now I remember it.

It was like in the Matrix when Neo is hooked up to the pluggy-in-thing and goes, "I know Kung Fu." That's how it was. Just with potentially more tears and snot.

I couldn't go into grocery stores for very  long because all the colors and of the items on the shelves was overwhelming and caused panic attacks because of the amount of stimulation. When I got over this, craft stores did it.

Holy. Moly.

I also had a lot of other stuff I had to catch up on - I bought this book Stuff You Should Have Learned at School by by Michael Powell. I had been reading a lot of those random fact books and books like The Book of Lists because it was easier on my short-term memory - which also was coming back with far less drama. And, you know, Wikipedia.

Once, I left my coffee mug in the sink at work - a giant oversight- and the cleaning crew washed it and put it in the cabinet . I literally could not function because I couldn't find it. I couldn't remember what I had done with it. Probably today if I walked to the kitchen and saw my mug gone, I would open the cabinet and look for it. At that time - I thought it was all over again. I couldn't remember or maybe someone was playing a trick on me. I was on the verge of tears until a normal person opened the cabinet where the mug were and pulled it out.

So, I was playing a lot of catch up.

Balance and Fear
I found I was afraid of a lot of things normal people were not afraid of as my brain began to clear up in those final years.

I was afraid of stairs (balance), elevators (bothered my fragile perception) and escalators (what the god damn Hell?!). Everything in my brain and soul screamed not to go near these things because they are terrifying when you have no coordination or balance.

Before, I would just not use them. Now, I had to use them. I knew I use to run down stairs taking two at a time. I'm still working on that. I have no idea how I did that. I must have been some kind of super-kid.

I had to re-find my place in the world. It was the same concept as really big people who lose a lot of weight and need to have their brain readjust to how much space they take up. Or vice versa, I suppose. Maybe women who are pregnant? I'm not sure.

Missing Arm Neurology

My first year out, I lost track of my left arm. It was really weird. I didn't know where it was. 

I still lose track of where my left arm is sometimes. When I am cuddled up and curled around my blankets and pillows, I can spend hours trying to figure out where my arm is until I touch it. I have no concept of where it is most of the time until I see it or touch it with my other hand. It's a weird mental disconnect. 

Bugger arm could be ANYWHERE. 

Tired. . .Less Than Normal
I remember the first night I stayed out until 11pm. I had to take a four hour nap before, but, I was up and walking around until 11pm! I mean, I was wrecked - but, I got out!

Today
Thinking and writing about it right now, my brain tells me it's been four years and I haven't been vigilant enough. It could be gone tomorrow.

It’s cool, I’m back. It's been four years of nothing. Four years of my brain allowing me to calm down.

Phew!

Honestly, there is never a time I don’t live with relapse. Relapse with no reliable testing and no Dr. Burke. I am alone in my terror as I was alone in my sickness.

But I'm not alone on this earth. And if something really bad happens - I just need to wait for the next heartbeat.

It's been four years now and I have met no horror so great I couldn't manage.

Now, the horror is when other people tell me their stories. When I watched other people start the journey into everything I have gone through.

And They Still Tell Me
To my face they say:

• I never knew anyone with Lyme.
• I don't like the smell of Deet, so, I don't wear it when I'm outside.
• If this was a problem, a real problem, wouldn't more people be sick?
• This can't happen, someone would have stopped it by now.

Image Credits:
Thanks memegenerator.net for the pic