Almost one year later . . .

In about a week and a bit, I get to have another birthday celebration. Oct. 8th will be the one year anniversary of my brain surgery, which quite literally gave me my life back. I’ve been asked by some if I would blog a bit more about the past year of recovery, particularly by others living with epilepsy and some thinking about having surgery to deal with their epilepsy. Writing in the blog was one of the first things I did once I could move and stay awake while I was still in the hospital. It was the first sign my neurological team had that I was still able to read (or, at least I had a good time randomly typing — I’m not sure they knew which was the truth!). It kind of feels wonderful to be going back to Boston, very shortly, and being able to look all of those doctors and researchers in the eye and say “Thank you.” It’s not everyday you have the opportunity to say thank you to a creative, innovative, and compassionate group of doctors and scientists who, quite literally, saved my life. More later, but just thanks and grace, right now.

PS — And don’t worry.  I’ll get Dr. Sunshine to add his two bits worth!

 

Brain scans galore!

20130911_171535So, you may wonder, what does it look like when you spend a week getting multiple types of brain scans?  Here’s a couple from my trip to the Martinos Center in Charlestown, Massachusetts, last week.  The Martinos Center, a research facility connected with Massachusetts General Hospital, Harvard, and MIT  has an amazing  staff of people who were incredibly kind to Jonthan and myself as I went through several days of non-stop testing.  It’s a lot of time to be very still inside of a variety of tubes (for those of you who like details, I had an FMRI, 2 types of MRIs, a PET scan, an MEG, and a Connectome scan).  One interesting part of the process was being the first “patient” in the United States to be scanned as a part of the Human Connectome Study, which is the cornerstone of the initiative to study the brain developed by the Obama Administration.  I’m glad my abnormal brain can be of value to the advancement of science!  The many tests they did gave them much more detailed information that is helping them decide how to proceed.

So, what’s next?  There is a team of doctors and researchers that are “conferencing”  my situation.  At the moment, I am scheduled to have surgery in Boston in early October.  However, they still have to take a look at some information that came from a test I had done in January in Spokane in order to determine exactly how they want to approach the surgery.  The procedure they are hoping to do is one that Jonathan likes to describe as “minimally invasive brain surgery.”  However, there are still some concerns about if that will, indeed, stop my seizures, and they continue to have some concerns related to the language center in my brain and the point of origin of the seizures that could lead to yet another test (or two) prior to surgery.  So, while the surgery is currently scheduled, the date still might shift again in the next couple of weeks.  It’s surely a lesson in living in the moment and not getting agitated about uncertainty.

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On a different note, I really will try and be a “better” blogger than I have been, and I will also let Jonathan do some blogging, since he is great at it.  Turns out I love to write, but I really don’t enjoy writing about myself a lot!  However, I have had much to reflect upon and I would like to share some of it with you.  Epilepsy and impending brain surgery have proven to be excellent reminders of why the supportive, loving community I have around me of family, friends, church members, and yoga and Nia students are a gift that I am not taking for granted.  I’ve also been reminded of why having an ongoing spiritual practice is so critical to engage during the times when nothing “big” is happening, so that it is there and strong during times like these (especially if you have to lie in a tube, being really still, for multiple hours, multiple days).  Thanks to all of you who have been with me on this journey.  I promise I will write more soon!  ❤

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The cap for the MEG . . . Jonathan calls it “your granny’s swimming cap.”