Phew. Okay. Here it is.

In very short terms, I have a nasty virus that has royally, and irreversibly, effed up my brain and entire neurological system. 

This virus is called Powassan Virus.

I was actually diagnosed with it prior, but truthfully I never dug into much details, because I was too sick at the time and I was told stem cells would help well, everything and so I had a lot of hope for miracles as I was still early in my stem cell game.

Last week was actually the third doctor that told me I have this virus called Powassan. And finally, on this third time it became very real.

Whether it’s because it was the third time or the fact he is a Canadian practicing medical doctor, or he has researched it a fair amount or maybe that it all just really sunk in so deep I couldn’t live in denial anymore.

Not only is this virus incurable and untreatable, but it’s related to the Zika virus family and like them, whatever neurological damage is done to the body and isn’t repaired repaired in the first two weeks of transmission- remains for life.

For life. I think I choked in the appointment at this moment. I stayed silent I swallowed the lump in my throat.

He went on to tell me that I should exercise and maintain the function that I have left, because it’s important to keep what remains as the damage that’s been done cannot be eradicated.

Further testing is being done for West Nile and to see if my Lyme Disease is still active and if this untreatable virus is now the main culprit of my ailments or Lyme is still a problem as well.

The doctors closing words to me were

“I’d like to tell you you could have the health you did 5 years ago, but at this point, I don’t see it happening.”.

I felt my heart break, literally, it ached and truthfully still does writing this.

I’ve always maintained some amount of hope and still do, but I’m only human and the fear that daily seizures and 100 other symptoms (not exaggerating!)  is my reality AND future has really hit me hard.

I’ve been through so much and I’ve always chosen to get back up, sometimes it takes longer than others to recover (be it emotionally or physically or both) but I always get back up and keep trying. As my doctor and specialist list grows and my symptoms do too, at times I feel so much further from “healthy” and inevitably fear creeps on in. It curls into me at night keeps me up, mind wandering and wondering “just what the hell do I do next?”.

My family and I have talked, I have reflected and grieved a lot, and though there is no conventional treatment or cure, I’d rather spend the rest of my life fighting and trying whatever I can to heal rather than accept my current state as a lifelong reality.

It’s been waves of “Miracles happen” and “I’m scared shitless”, but with great effort and support, I am trying to keep my heart grounded in a place of hope rather than a place of fear.

I hope that whatever challenges you face this year and in your life, you find it in you to do the same.

xox

Lex