The mind is a terrible thing to waste. That is the phrase I woke up thinking this morning. Not for its original context, but because I feel like my mind is actually wasting away, and it’s a horrible, terrible thing. When I first started my Lyme treatment last April, like most patients, I experienced quite a lot of herxing. The newest symptoms of which were cognitive – memory loss, confusion, loss of words ,etc. Eventually those symptoms seemed to dissipate, and I considered myself fortunate for being one of the lucky ones that didn’t have to live like that all the time.
Granted, my memory has never been stellar. My sister’s is so sharp she can tell you what she had for breakfast on this day ten years ago, whereas I can’t even recall what I had last week. But this kind of memory loss is different. With Lyme brain, you can ask me to list off breakfast foods (easy right?) yet my mind draws a complete blank. Last weekend, the hubby and I joined my brother and his girlfriend for a weekend in Leavenworth. It was AMAZING! But of course my days never go without Lyme trials. The pain and usual symptoms were a given. But there was one instant in particular that really got to me. One night we were playing board games in our hotel room and we busted out this one called “Flippin’ Out”. A category is chosen and you have you to think of something that corresponds to one of the letters on the table before time runs out. I mean, even my 7 year old niece could champion this game. But I was out of the game in the first round. I REALLY hate losing, but this was more than that – I was so frustrated and angry with my brain! I’m no genius, but I was at the top of my class all through school, and now I could easily get my butt kicked by a child, in a simple word game. I went through such a mix of emotions in that moment – frustration, anger, sadness, and most of all, embarrassment. I didn’t want to play anymore but even my husband, who is the closest to understanding my symptoms, was pressuring me to continue. So not only do I look like a dummy, but I also give the impression of being a bad sport and a quitter because I lost.
Now thinking back through the course of last year, I had been noticing some subtle cognitive changes. Often times at work, I’d be in the middle of a task and completely forget what I was doing. It used to be that I’d eventually remember and get back into it, but that doesn’t happen anymore. I’ve started doing things like putting the milk away in the cupboard, or completely forgetting whether or not I did something like lock the door, 30 seconds after doing it. Now I know what you’re saying, “I don’t have Lyme and this happens to me all the time!” I really don’t know how to explain it, but this is just different. When it occurs, I feel completely and utterly lost.
Lately, the occurrences have become a little worse. In September, we moved from a condo we had lived for over 2 years. When I was working with Comcast to set up our new service and the rep asked me what our last address was, I couldn’t conjure it up for the life of me. I actually had to look on Google maps to figure it out.
A month later, my husband and I had stopped for groceries on our way to my parents and we decided to meet each other out in the parking lot after. Except when I got out there, I had NO IDEA where the car was. I mean, this happens to me all the time, but this time – this time was different. Usually I have an idea of which side of the lot I’m on, but for some reason I couldn’t recall a thing – it was almost like the process of parking and walking to the store hadn’t even happened. My husband wasn’t answering his phone, so I started walking up and down every aisle, completely panicked. I know this doesn’t seem like a very big deal, but all I could think was, “this is what it feels like to have Alzheimer disease, and I’m on my way there”.
Probably the scariest moment of disconnect thus far was a few years ago, back when we lived in Spokane. Our driveway was built in a way that we had to maneuver to the right when backing out, to avoid hitting the house. Except one day, I didn’t do that. I remember telling the story, and explaining to people that it felt like I was drunk – only it was the middle of the day and all I had had to drink was water. My car still has those war wounds, and every time I see it, I’m reminded of that day – of realizing what I was doing (or not doing for that matter) and how my brain and my body just could not react in time. It was like living in a dream, where you know you are supposed to do something, or you really want to do something, but you just can’t. I know there are a lot of Lyme patients out there who can no longer drive, and I have to think this is why. Two of my biggest fears of getting old is not being able to take care of myself and not being capable of driving myself around. I’m really hoping this doesn’t happen earlier than it’s supposed to.
In “Under Our Skin” they documented the study of Dr. Alan MacDonald. He had been researching Lyme for 30 years and came across an amazing discovery while analyzing brain specimens of Alzheimer’s victims: that 70% of the Alzheimer-riddled brains contained the Lyme bacteria Borrelia. Dr. Dietrich Klinghart, another Lyme specialist, states that he’s never had a single patient with Alzheimers (or ALS, Parkinson’s disease or multiple sclerosis) who did not test positive for Borrelia. The fact that they have yet to find a cause for these diseases really makes you wonder if Lyme is a common denominator.
I’ve always sympathized with Alzheimer’s patients, and the families of those patients. In college, one of my roommates was on the soccer team. She was hit hard enough in one game that she ended up with amnesia for a week or so. I had never seen first hand what this could do to a person – it was unreal how she literally had no idea who any of us were, where her classes were, how to get to the cafeteria, etc. I was constantly by her side – “introducing” her to people and helping her get around campus. I can’t imagine living in such fear and loss for a week, let alone years. I have always hoped that no one in my family would have to suffer through this disease. But the statistics and the reality of what I’m already experiencing at age 33 has me bracing myself for what’s to come. Up to this point in my life, the pain and other physical symptoms have been the worst for me. But losing my mind, that is ultimately the scariest.
