Hurricane Sandy (aka Frankenstorm)

Exactly one year ago we lost power in an October snow storm.  We had not lost power for more than a couple of hours in the 18 years we’ve been in this house, but were without power for 5 days.  Hurricane Sandy hit Sunday night and we’ve been without power for 72 hours and counting, and a second consecutive Halloween.  The blessing behind this one, besides the generator I bought this summer (finally wised up) is the amount of time the four of us have been spending together.  I don’t want to sound old (but if the shoe fits…), but not having TV, computer, Xbox and electricity, we’ve spent time doing things more common a generation ago.  Things like jigsaw puzzles, Mad Libs, and …… talking.  It’s been great, and amazingly initiated by our teen and pre-teen children.  But talking is a challenge.  Marcia can’t participate and when she does attempt to speak, it’s become hard work for all of us to understand her.

Marcia and I have always been blessed with how well our kids get along and how they really enjoy being with each other.  It’s been a joy to watch for as long as I can remember.  During the storm, Marcia didn’t miss any of this family time and she participated where she felt comfortable.  And I have enjoyed her laughter.  But for the most part, she slept/napped a lot and basically just watched and listened.

While I enjoyed her company, and the walk we took around the neighborhood to see the damage from the winds of the hurricane, I miss her.  I’ve written about this in previous blogs, but she used to be the initiator, the instigator of “fun”.  She was proactive about everything, a master planner, and the center of our family activity.  Now she’s an observer.  A welcome one, but so far from her pre-AD self.  She tries to do as much as she can, but she’s just not the same.  She washes dishes, but many need to be rewashed.  Her myoclonus reactions are more frequent, but she calmly cleans up the things she drops or spills.  And where she used to be intuitive and proactive, she requires more than one explanation or request.  But if she’s down or depressed, I’m hard pressed to see it.

I realize how reliant she is on me, and our kids.  Last night we went to our friend’s house for a short visit.  Christine and Steven Walker got their power back earlier in the day and we all wanted to reminisce about electricity.  Ryan got a short fix of Xbox with the Walker’s son, Tre, and Marcia, Riley and I talked with Christine and Steven.  While Marcia talked often, she often talked TO me and Riley, knowing we could help her communicate.  I feel like taking care of her is what I’m meant to do.  After all, she’s taken care of us for so many years, and in many ways she still does.  While it takes much longer to understand what she’s trying to communicate, all three of us seem to be pretty good at translating what she’s saying.  And Riley and Ryan amaze me at how well they do this, and how patient they are with her.

While I miss the vibrant Marcia, I appreciate the current Marcia.  She’s sweet and thoughtful and not at all withdrawn from being around people. She takes every opportunity to get out of the house, regardless of the purpose or destination.  She’s just so much more comfortable being in the background than I would have thought she could ever be.  I’ve also gotten comfortable with a completely silent ride if that’s what she wants.

I’ll close this entry with some recent events at the YMCA.  Two weeks ago, her supervisor asked if I could come by to see him.  I had planned a day off anyway, so I went in to see him the next day.  The Y had to cut back on several classes, and two of Marcia’s classes were cancelled immediately.  While other instructors were also impacted, I was concerned about how she would take the news, but more concerned about how to fill the time.  She said she understood the decision and wanted to keep going to the Y on those scheduled days anyway.  If she was upset, it was hard for me to tell, as she doesn’t appear to get upset about anything. 

Last Friday, I took the day off (it was my birthday) and I went to the Y while Marcia taught her only remaining course.  As we were about to leave the Y, her supervisor asked if we could talk.  They decided to add back her Monday course!  It seems her “regulars” weren’t happy about the cancellation and made that known.  This is what hasn’t changed about Marcia.  She’s always had such an overwhelmingly positive impact on those that attend her classes, and this group of ladies wasn’t ready to give up her class.

In so many ways, Marcia is different.  And in so many ways she’s the same.  Even as her AD progresses, she still is able to be such a positive influence on others.  While this influence is evident with those who attend her classes, I think no one is affected by her positive influence more than me.