A day in the life of Lyme brain

It’s ironic I’m writing this on a day when my Lyme brain has taken a semi-vacation. Meaning, I’m writing about Lyme brain on a day when my brain is thus far functioning fairy well. But it’s a topic I wanted to highlight, if for no other reason than to let my non-Lyme family and friends know that there is a reason I don’t always have an easy time communicating. Also, I think fellow Lymies may be able to identify with–and hopefully discover the humor that sometimes accompanies–the cognitive mishaps and mayhem I describe!

A brief note for those of you who are unaware: Chronic Lyme Disease more often than not manifests itself in a person’s neurological system just as significantly–if not more significantly–than it does in physical symptoms like joint pain, rashes, etc. The reason neurological symptoms are often more troubling, even though they don’t necessarily bring about physical pain like other symptoms, is simple:

I’ve yet to meet a Lyme sufferer who was not formerly a high-functioning individual. And the majority of Lyme sufferers with whom I’ve talked are very much like myself–type AAA personalities. When we are dealing with physical pain, our diminished capabilities seem more justifiable. After all, when your throat is so sore you can’t talk and your joints are so painful and stuff you can’t walk and your neck won’t move it’s “easy” to pinpoint these areas and say “Okay, there’s something I/others can physically see/feel/grasp as real that is causing me to not be able to function today. I’m not saying physical symptoms are easy to deal with–because we all know they aren’t–but accepting them as real (or particularly having others accept them as real) is easier because they are, in effect, tangible.

However, neurological dysfunction is a completely different ball game. Think about this:

My favorite thing in the world to do is public speaking. And at the risk of sounding self-assured, I’m pretty good at it. Or at least I was before Lyme stole my brain. I even identified myself as a future-professional-public-speaker. I loved it! I thrived on being in front of a group and sharing my presentations and personal story while also getting the group to interact with me as I did so. (The key concept here is “identity”)

The reason neurological issues are so daggone hard to deal with is because they make you feel like you’ve lost who you are as opposed to just what you do. Yes, it’s devastatingly heartbreaking that I can’t go figure skating right now (my other favorite thing ever), but that is an action I do, and while it is something that defines me in that sense, as an activity, it is a somewhat tangible entity I can latch onto and say “Okay, one day I will be able to do that again.”

It’s much more distressing to feel like I’ve lost who I am in a lot of ways–I’m no longer well-spoken (thankfully I can still sometimes write well, though!), I struggle with constructing and speaking simple sentences, and I have an increasingly hard time with word recall and correct context/meaning. If you’re having trouble picturing this phenomenon, here’s an easy-to-grasp, mild example from an average day:

Say it’s a Monday and the day before, on Sunday, I had attended church, and someone (on Monday) is asking a question about my weekend. I reply thusly:

“It was a decent weekend. I’ll tell you that I absolutely loved the sermon at church tomorrow!”

Obviously the correct word to use would be “yesterday” instead of “tomorrow” but more often than not I will find I’ve spoken the exact opposite of what I meant to say…and don’t even realize it! Other times I’ll reply with a sentence that my mind thinks is accurate but that actually had no relation to whatever topic is at hand. And this doesn’t even touch on the number of times I can’t finish a sentence due to either a.) severe word-stumbling/stuttering type problems or b.) inability to think of a word to say at all.

I haven’t even gotten into the severe issues Lyme causes when I’m just trying to think to myself (which are just as debilitating and annoying as trying to speak to others), but rest assured they exist–and they make up just one more rung on the ladder of “neurological issues caused by Lyme that make me feel like I am no longer the person I used to be.”

I do believe, though, that God can (and WILL) deliver us from all of this, Lymies. I’m claiming eventual healing and restoration not only for myself but for all of us who suffer. He’s done so much in my life already, I’d be naive to doubt Him now!

After all, I do get glimpses that show there must be something of my old brain left, because I can still recite/write the opening lines of the Canterbury Tales in Middle English (although I’m sure my spelling isn’t 100% accurate), a feat I had to undertake in college. Want proof? Okay, here goes nothing!

Whan that Aprille with his shoures soote
The droghte of March hath perced to the roote
And bathed evry veyne in his licour
Of which vertu engendred is the flour

And that’s that!

-xo-

Becca