Just When You Start to Believe…

You would think that after everything Jenna and I have been through with this Lyme-colored nightmare, there wouldn’t be much that could shake us. Last night proved both of us wrong. Last night, we were both more scared; Jenna says more than she’s ever been — for me, I was more scared than I’ve been for a long time, but for very different reasons.

It takes an awful lot to scare Jenna…new IV med? Okay. Changing oral meds again? No Problem. Need another five vials of blood? Which arm? Need another picc line? When? Unpredictable, painful symptoms? It’s all good. She’s one tough cookie, even though many people don’t know that she has a soft, gooey filling. Jenna has been receiving IV treatment for over a year now (already four months longer than we anticipated) and we expect that it will go on for at least a couple more months before she switches to an all oral medication protocol that could last years. We had hoped that she would be finished with the IV treatments by now, but the Lyme disease has damaged her brain so deeply, that her seizures are worsening and becoming even more unpredictable and having longer lasting effects.

Over the last couple weeks it’s become increasingly difficult for Jenna and I to go places on our own. I’ve handled the seizures and narcolepsy-like attacks okay up until now, but recently, when she comes out of the fog, it’s not just the loss of speech and amnesia she feels, it’s terror. Terror that she’s in a car with a complete stranger and she has no idea where she’s going; terror that takes over and has her trying to escape by opening the car door while we’re still moving, terror that has her thinking about running away and makes her fight against anyone trying to help her. It’s that kind of terror I see in my daughter’s eyes that breaks my heart and leaves me feeling helpless and completely incompetent. Sometimes it only lasts for a few minutes and doesn’t earn any space in her memory. I thank God for those times she has no memory of an episode.

Last night her post-seizure terror lasted over an hour and I honestly believe that today she was having some post-traumatic stress…almost as if she was in shock. She didn’t say much to me when she first got up this morning, but as the hours passed, she relaxed and relived the episode for me, from her point of view. She remembered everything, because she said it kept replaying in her head all night and then continued to flashback throughout the day. I’ve caught her several times today, upset over remembering how she felt last night.

Imagine waking up from a quick doze and finding that you have no idea where you are, who any of the people are around you, and no way of communicating. Then the strangers, who keep talking to you in a language you can’t process, firmly take your hands and lead you away from where you’re sitting outside, into the dark night, and help you into a car. One of the strangers continues talking to you and touching your face and hands and you feel helpless to do anything about it. Then the stranger drives you away and won’t let go of your hand. You’re frightened and confused, frustrated and upset and so many other feelings that just keep rushing in. Imagine the trauma of being kidnapped by strangers and not being able to communicate…that was Jenna’s experience.

My fears from the experience were different, of course. I had the Mom worries: How can I get her to wake up out of this nightmare? How can I get her to recognize and trust me? How am I going to get her home safely? Did I do/not do something that triggered this? What if, what if, what if…

So, we have Lyme (and it’s buddies, Babs and Bart) to thank for yet another unforgettable experience. One of these days we’ll probably look back and say, “Wow, we really did make it through!” but right now I’m beginning to think that just when you start to believe things can’t get worse, the universe proves to you that it can.


1 Response so far »

  1. 1

    Karen Stout said,

    I am familiar with how you feel, and I think I can understand how a person feels being the one that doesn’t know anything. At least I could for my mother. I started early on using aroma and sound therapy to help ease the terrible fears that my mother experienced. The aides I had were instructed in the kind of atmosphere we were to create during these times……not only for my mom but for them as well.

    Possibly when Jenna does not “know anything” her primitive instincts take over.

    Now the test is “what smells,sounds,feels safe. đŸ™‚

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