Thursday, November 10, 2016

If you can read this, that's a pretty big deal...

Life With Neuro Lyme

The process of recovering from Neurological Lyme disease kind of feels like having a light switch controlling your brain. When the lights are on, you can actually accomplish stuff. However, at any given moment the lights can flicker, dim, or simply be turned off. You never know when that switch will be flipped off or when/if it'll be flipped back on. It's a constant state of uncertainty, unpredictability. The thing about recovering is that you take a minute to be frustrated here & there, then get back to appreciating every glimmer of light you receive, whether it be bright, so very dimmed, or a flickering mess. Because when it comes down to it, any of those options are better than the dark.
The human brain is an extraordinary, peculiar mystery. Every time that light dims for me, as I'm sitting there wondering when or if it'll return again, I have to remind myself how unbelievably lucky I am to have come this far since beginning my treatment journey 6 years ago. Life with neuro Lyme makes for a lot of things: fear, unpredictability, and continuous obstacles, but most of all: an intense gratitude for the little things.
If you were able to read this without any thought of a metaphorical switch turning off your "lights" at any moment, take a moment to appreciate your brain, your health. While you work on that, I'll take an extra deep breath and get back to writing my school assignment, with a very dimmed, uncontrollably flickering light of a brain. 
-Onward & Upward-


Monday, October 31, 2016

A stranger harassed me for using my disabled parking permit- here's my response

Some studies say that up to 96% of chronic illness is "invisible." With 19% of America's population having some form of disability, taking a minute to educate yourself can make a world of difference. 

Click the link below to watch my new video: 

Monday, March 21, 2016

Tomorrow is a new day

A peak inside my lyme-filled, neurologically impaired, frustrated brain:

Pain. Unbearable pain. Like a pack of wolves is ripping your legs to shreds, piece by piece. Like someone took a thousand hammers to them, smashing away the ligaments and muscles. A type of pain you cannot see from the eye. You look normal. Healthy. We chronic pain patients become a pro at hiding pain, to blend in. It's just part of the job.

Then there's the lungs. Every labored breath feels like a 40 pound bag of flour is sitting on your chest. Worst of all is the brain. As a former athlete, I spent 4 years needing a wheelchair and was often bed-bound. Trapped, like a prison cell. But the bars are invisible, and to the naked eye it looks like nothing's wrong.

The physical symptoms aren't nearly the worst though. It's the neurological stuff. I can handle pain, but when your brain is under attack, infested with millions of spirochetes spiraling their way into every crevice of your tissue, cells, muscles. When your brain is in a battle, you're not you. You lose your personality. In a matter of a week your reading capacity drops grade levels. Your IQ drops and if you're lucky maybe some of it will come back one day. I cannot put into words the feeling when you can't remember how to pick up a pencil & write. You can sit there for hours and hours, simply staring at it. But nothing changes. You're no longer you.

This is the reality of advanced neurological Lyme disease. I've come a long way. A hell of a long way. There's a light at the end of the tunnel, that I'm sure of. But some days, those days where you're alive but not really living, subsisting off pain narcotics just to get through the night, those days feel like that light is an oncoming train. That said, there's tomorrows for a reason. Tonight might be one of those nights, but I know without a doubt, there'll always be better days to come. So you take your treatment, distract yourself from the pain, & live to fight another day.

This is my life as an advanced tick-borne disease victim. And sometimes the only relief available is to say to yourself "tomorrow is a new day."

Onward & Upward,

Friday, March 18, 2016

"Don't waste a single second, promise."

The other day I was moving around the furniture in my room, when out of nowhere flew out a piece of paper. It was a letter that I must have written to myself years ago. I'm not sure where I was at in treatment at that point that lead me to write this, but it's clearly a message I wanted myself to remember and I found it on a day when I truly needed it! Sometimes it's hard to see out of the fog past where you are at this time and place, but the universe always seems to nudge you in the right direction.