So, 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.
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! ❤
Wow! I have had you in my heart and my thoughts all summer and certainly for the last week, but didn’t want to “intrude”. I hate that they are thinking of “minimally invasive brain surgery” – but am filled with hope that it will help. You are beyond special and fill the world with love, creativity and wisdom. My prayers and hopes and love are with you.
The head wear is quite stunning, Missy ! Thanks for filling us all in. This way you have control over the information. You are in great hands and are surrounded by loads of love. Keep the faith, my friend
Lots of positive energy is being channeled your way. May you find peace and comfort in that. I am praying that the impending surgery goes well and fixes what needs to be fixed. If you need help with Jake and soccer (or other), please let me know.
Love reading your posts. And now, can see your stuff on FB again! Love this comment you made: It’s surely a lesson in living in the moment and not getting agitated about uncertainty. Think I should post that above my computer!
Kristine, lots of positive energy coming to you from the Wortheys….your posts are inspiring..love to you and family (and Senor)..Let us know if you need any cat sitting…:) Diane and Guy
I appreciate your posts so very much. Nancy CW and I are planning to sit with you at a distance in meditation on the day of your surgery, so you will be accompanied by family near and friends from afar. Steve sends his love as well, and we are so grateful to be able to follow your journey this way. Big love, Patti and Steve