Lyme Files: Aftermath 2

I find a common question or concept - some thread of sameness - is the question of "what has this taught you?" or "how has this changed your outlook on life?"

I don't personally get this question because. .if you haven't picked up on it yet, I was in complete and total hiding during my sickness and mute about it. Plus, there is no awareness unless these horrible illnesses have taken someone you love.

In reconnecting with the world, I have noticed my outlook is different.

So Courageous, So Brave
I despise being told I'm brave or courageous or whatever. I actually hate it for anyone who has any illness. I will never call someone "brave" just because they won the crap-lottery and got sick.

I feel calling people who are sick these things cheapens the words for people who really act bravely and courageously.

Bravery and courage come from choice. Bravery is standing up for someone when you have the choice to be quite. Bravery is being those who help others even when it doesn't not benefit them. Courage is a choice to reject fear and do something.

I didn't have a choice. I didn't choose this. No one chooses to be this sick. No one who gets any terminal, chronic or acute illness is defaulted to a status of brave.

If I am brave - then I am also brave because I have brown hair. Or I am courageous for having ten fingers. I didn't choose these things, either. They happened to me.

What I am is a survivor. I survived. I was a warrior, I went to war to fight for this body and I killed a lot of junk - both realistically and metaphorically. If you are in treatment, if you are battling for your own life - then you are a warrior. You might not win, but you will fight.

And within that fight - you will give up. That's ok. I gave up a lot. I know what it means to say, "This is enough, I'm done being a warrior."

People who I think are brave and courageous are the doctors who put everything on the line to find treatments and treat. The ones who do everything they can to help when all the politics and accepted guidelines fail. I think it's courageous to stand up and help those who have these illnesses.

The Lyme Letters
I sent about four letters out to doctors I saw when I was about two years into treatment explaining what was actually wrong with me. I doubt it made any difference or mattered - they would have put my file away and destroyed it after record retention was over.

I got one letter back from Dr. Pierre Minerva who sent back a lot of information on how long-term antibiotics was harmful and I needed to be informed. I appreciated the gesture but it felt a lot like someone who was diagnosed with cancer and a doctor letting them know chemo and radiation were harmful to the body.

Of course it's harmful. We're at war here, people.

I never got much information from anyone else. In the back of my mind, I hope maybe one of those words I wrote did something for the next person sitting across from these doctors. I really encourage anyone who had an illness that was not found by a doctor to reach out in a non-aggressive way to let the doctor know.

I don't know how doctors would feel about this. I also think the doctors just tossed my letters and never thought about it again because. . .they were wrong. And being wrong is tough on the ego when you are the "top doc" of your practice.

I just hope maybe one of those letters did something.

Thoughts of the Future
I went to school with a lot of very smart people who moved into smart professions like doctors and lawyers and whatnot. I always wanted to sit down with some of them, show them the start of my story and ask what they think.

How would they respond if I was a patient in their practice sitting before them.

I do see a great deal of change in the way tick-borne illnesses are being handled, though. It has been about 9 years (2007-2016) since my first diagnosis and it seems as if now I hear more stories of people telling doctors they might have Lyme and getting antibiotics and not having a lot of issues after.

Testing remains the same. The guidelines remain the same, though.

Other tick-borne illnesses are emerging even though they have been infecting the population for years. Awareness seems to be growing as more and more people and children are being sharply ill for no reason. There are many people who will not stand for, "IDK, your kid is just going to be a wheelchair, I don't know why.  Maybe it's an attitude problem?" from doctors.

The Silence
To this day, I am still angry. I don't visit it often - it's this matted ball of pain and hate and lost time. Like, my angry should be less now because it's been so long. My anger should be less because people can casually say, "Do you have any linger effects?" or "My dog had Lyme."

I still can't quite say: Sit down there, buddy. Let me tell you what this is like.

I am still just a collection of my symptoms that annoy those around me, I am never the product of my struggle.

People still send me off-colored jokes about tick-borne illnesses or ticks not understanding the true cost. And it's cost that will one day hit them. The jokes about Lyme are funny only when you are in the club, because we understand. This one time, a Lymie was saying something and in the middle of the statement forgot and I said, "I just say: sorry, the train just left the station when that happens." And we laughed and laughed and then forgot why were were laughing.

Because it's terrifying.

I read once this article that I can't find where the author says something like:

Author: When my brain is gone, will you understand.
Family: *laughs* I don't know if we will understand you, ever.
Author: Well, as long as you love me then.

I rarely joke about Lyme outside the club because that's what I feels like. You know you will shortly lose everything in your head and your heart and you look to the people around you just hoping in that one moment of clarity that love will be enough to get you through it.

And as stated in Scenes From American Life by A.R. Gurney - "And loves mean nothing."

When I reach into this ball in my chest - I am angry and hurt and frustrated and on the verge of tears all over again. All I can do is move forward, even if it seems backwards; all I do it let go or hold on, but always moving forward.

You see, the one thing Lyme teaches you very, very well is to hide everything. Your pain, your struggles, your thoughts, your emotions.

It couldn't have been that bad.

To see the full story, check out the Lyme Files.