This past year has been stressful for Michael and I. Michael began a medical leave of absence in early March of last year. After many months of trying to figure out what was wrong, we learned (the day after I got my meningioma diagnosis) that he has frontotemporal degeneration (FTD), a neurological condition in which parts of the brain becomes progressively more damaged and for which there is no treatment. FTD causes changes first in behavior, social skills and personality, then language and/or motor skills and eventually the patient requires assistance in all areas of life. (A good site for info on FTD is http://www.theaftd.org)
Michael will not be able to return to work. We don’t know how quickly this will progress. A ballpark figure is anywhere from 2 to 8 years. This is not quite the retirement we had planned, but you take what you get, and we will get through this together, as we have everything else in our lives. We plan on moving to Bellingham sometime in the coming months to be closer to Becca, Alex and Eli and in a smaller city environment.
Michael is doing fairly well right now though he struggles with fatigue. He tries to spend a couple of hours a day working on the sci-fi book Joshua handed off to him. We are spending quality time together while we have it.
Sometimes it seems like our family is a neurological mess, what with Joshua having died from a brain tumor, Michael having FTD, and me having a much less aggressive brain tumor (meningioma). Frankly, it feels overwhelming at times. It’s different being the spouse of the patient rather than the mom. Not that I love either Michael or Joshua (or Becca, for that matter) any less, but I found that my maternal instinct provided an extra boost of strength and energy. As a spouse, there isn’t that same reservoir of strength to tap into when I need it.
I will get through this as I have other hard times-with Michael, my family and friends, my faith and just putting one foot in front of the other, one step at a time. I will almost certainly need lots of hugs, help and probably tons of dark chocolate…