An Update as of 11/18/12

Today is the day that the Lord has made; I will rejoice and be glad in it!

This is also the day that the Lord made ME, and I am having the very best birthday present I could imagine – having Bob “alive, alert, and aware!” Bob is continuing to make progress every day and we continue to be hopeful that he will make a full recovery. Bob’s basic personality is intact. As predicted by the MRI he had while he was still in a coma, he has difficulty with memory and he is very emotional. But he is very much himself.

Bob is very sweet and helpful, and is getting back to his amazing problem solving prowess. In trying to prod a recalcitrant answering machine back into service, we had just about given up and decided to go out and buy a new one. Then Bob thought that maybe we should at least try changing the battery, a 9volt battery that required a tiny screwdriver to open the casing. That’s when it happened – Bob remembered, he could actually picture, a small red case of tiny screwdrivers that he used to have! It didn’t matter that he couldn’t actually find that case when he went looking, he was just delighted to have pictured something that he hadn’t rehearsed. He did find another little screwdriver, and sure enough, with a new battery installed the answering machine sparked back to life.

Yesterday, we were trying to open a combination lock down on our dock and we couldn’t be sure that either of us remembered the combination. We tried what we thought it was again and again and it wouldn’t budge. Then we tried every other combination we could think of. We were just about to give up, when Bob suddenly thought that maybe the problem was that the lock was rusted shut and that what we needed was lock lubricant. He went and found it on the workbench, and voila, the lock slid open!

We are also rejoicing in the compound blessing of Bob’s healing. Our friend Amy who visited last weekend made such a strong empathic connection with Bob because of her own struggle with mysterious seizures over the past decade and a half. Bob was Amy’s boss when her seizures began and extended his characteristic care for her during those scary times, and they have continued a sense of connection in the intervening years. And although Bob does not remember any of Amy’s medical struggles, it was very meaningful to him to be with someone who had experienced something so similar to what he has been going through.

On Wednesday of this week, a new book came out, called Brain on Fire: My Month of Madness by Suzanne Cahalan, about her experience with autoimmune encephalitis. In the interviews and media attention around the release of this book, Amy began to connect with particulars of Suzanne’s experience that awakened curiosity about her own medical mystery. In consultation with Bryn, she discovered other seemingly unrelated aspects of her medical history that fit with the particular variation of this disease and have given her hope that the underlying condition that was causing her symptoms has been addressed and that she no longer has to live in fear of a relapse.

Because the research on this class of encephalitis only began five years ago and is in its very early stages, we have wondered what happened to people who had this condition before doctors had any clues to guide the course of their treatment. Now we know, because Amy is one of them.

Here we go, rejoicing! 

-Megan