Our Sunday morning schedule starts with me waking Ryan at least twice. Our whole family then goes to 9:00 Sunday school, followed by a 10:00 church service. So far, this Sunday was playing out like every other Sunday. While Riley and Ryan go to Sunday school, Marcia and I attend Adult Education. Most of those that attend Adult Ed are engaged and share different perspectives every week. While I am on the quiet side, I’ll bet it’s been at least two years since Marcia has spoken in class. Today’s discussion was from the New Testament, from the book of Luke. The topic was “peace on earth and goodwill towards men” and our facilitator asked what we thought is meant by both peace and goodwill. The “goodwill” conversation had a heavy perspective around helping others. Some brought up memories of how communities thrived through the expectation that people helped each other, and relied less on government involvement. Others shared stories of people who selflessly helped others in need with little fanfare or publicity.
Then the normal turned abnormal. Marcia raised her hand to speak and to me, time slowed down dramatically and the room got completely silent. As her speech has deteriorated, anytime she speaks I find I need to be totally focused on her, because she will look to me to help her, and sometimes I really don’t know what she’s trying to say. And the last thing I want is for her to feel embarrassed or frustrated. All eyes were on Marcia as she tried to say “I have Alzheimer’s and I’m grateful for Mike and how he’s taking care of me” (or something like that). But she only got the first three words out…. sort of. If you didn’t know Marcia had AD, or didn’t know her at all, you would have had no idea what she was saying, but everyone there already knew she has Alzheimer’s and I suspect they were a little surprised she wanted to say anything (I know I was). Two things happened: first, she wasn’t able to say what she wanted to say. As she was saying those three words, she was patting my knee with her hand. That was the best she could do to communicate how grateful she was for me and what I’m doing to help her. The second thing that happened is that the intended discussion about goodwill stopped.
What wasn’t surprising to me were the things that people said to Marcia. From the grace she has shown always, to the courage and inspiration she demonstrates every day. One older gentleman through his own tears told her how much he’s wanted to talk to her, but he shared how hard it was for him. I don’t know if everyone was crying our not, but I know I wasn’t the only one.
This has been a particularly sad month for me. Christmas preparation for the kids has always been handled by Marcia. Marcia’s sister, Cindy, was here a few weeks ago and she did so much in this area while she was here, and with occasional text message reminders to me to complete the preparation, I was ready. But I clearly felt the last minute stress a procrastinator feels this time of year, and clearly less joy than previous years. And the massacre in Newton, CT hit me particularly hard for the same reasons it hit everyone else who has young children. While I can’t make sense of this, I think for me, this goes deeper than just what happened that day. I also see things like this now through the lens of a survivor. Those families in Newton need help (goodwill??) and the world is providing support through prayer, notes, donations, and so much more. My family has been the beneficiaries of help and support too. We’ve needed it. Neither situation can be handled without help. I know our situation is not the same as Newton. It’s not as emotionally charged or shocking, and it’s not played out 24/7 in the media. Marcia is still here, though not with the abilities she once had. But we are experiencing a dramatic change, as those families in Newton are. Life won’t be the same for the families who lost a son/daughter, brother/sister or a mother. Marcia too is a daughter, a sister and a mom, and we’ve lost part of her in a way that could not have been prevented and can’t be explained. While I mourn for those kids and heroic teachers, I think about those that lost someone and have to go on. And I hope they continue to get the level of support my family has been given after the media leaves town.
Back to Sunday… Marcia wasn’t trying to announce to the group she has Alzheimer’s, but that is the message that seemed to get through. She wanted to say that I have been there for her in the spirit that goodwill was being discussed. I’ve always known how much Marcia has appreciated what I’m doing for her, she just can’t communicate it very well, nor does she do so very often. Sometimes I wonder how much she is aware how her illness is affecting me and the kids. What it took for her to speak up awes me, even days after it happened. I told her how proud I was of her, but she just said “you”. She is not as cognitively sharp as she was even a few months ago, but she was completely in tune with the conversation and felt strongly enough to share her appreciation. And I think I needed to hear her say it.
There are clearly times that dealing with Marcia’s illness is stressful. And then moments like this happen that strengthen my resolve to see this through as best I can. In spite of her disabilities, Marcia can still inspire me, and make me a better, stronger, more aware husband, father, friend and citizen. And ensure goodwill will live on in my life.
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