Friday, November 22, 2019

Advice to myself: Keep your heart open...

Marilyn and Franny Kasen (Stein) "Dogs Forever" is our motto--friends since 1955!

“Keep your heart open for as long as you can, as wide as you can, for others and especially for yourself. Be generous, decent, and welcoming.” Morrie Schwartz, 1996, “In His Own Words”

            In a week family members from many parts of the United States will be converging on Mariposa California for the Thanksgiving holiday. As I grow more dependent on others for all of my physical needs, I’ve also developed a greater need to be in the company of the people that I love and care about. My 92-year old mother is getting on an airplane with my best friend since the age of 3 (Fran Kasen) and flying First Class to San Francisco International Airport. They will be joined within a few hours of arriving by my nephew Mike, his wife Sheri, and their one-year old son, Travis. They’ll drive across the state in time for a gala Thanksgiving meal. I’ve not seen any of them for over year—and have never met Travis—since my sister’s funeral in New Jersey in October 2018.
My mom, Florence, baby Travis, Michael

            Of course, I’m worried how the flights will be for my mother and young Travis. How will the new parents handle a potentially screaming infant? How will my friend Franny deal with my mother, who experiences memory loss on a regular basis? They’ve accepted the challenge to make their way out west. I can’t begin to describe how important this is for me.
            The Wednesday before Thanksgiving, Chris’s family arrives for their biannual Thanksgiving celebration, a tradition started in 2005. This will be the second time we’ve hosted the event and most likely my last. Son Evan, his wife Meghan, and daughter Dana will roll in Monday or Tuesday. We’ve planned a shopping trip to Costco on Monday afternoon. My food shopping days are nearly over, because it takes three people to go to the grocery store—one to push the cart and the other to push me. While I might have griped about food shopping all those years, I miss it. Buying food to prepare for the people I love is something I’m very much looking forward to.
            We normally eat a fairly traditional meal—turkey, stuffing, mashed potatoes, gravy, green bean casserole, cranberry sauces, and pies for dessert. We’ll have it all this year as well. But will be missing a few members of the family who aren’t able to travel at this time. Each and every one of those will be missed. As my time on earth grows shorter, the connections I make are more important and more relevant then ever before. I hope that Thanksgiving and the Friday after will be filled with conversation, expressions of feelings, and general good humor. We welcome all!
            The quote at the start of the blog today comes from Morrie Schwartz who was stricken with ALS in 1994 and passed away in 1995. He didn’t have long to live after his diagnosis, but in the time he had left he wrote a short book titled  “In His Own Words.” He offers practical advice to people like me, also afflicted with the same disease. In reading it today, I see we have many feelings in common. 

“Your need to feel connected to other people is as vital to human survival as food, water, and shelter.” Morrie Schwartz, 1996, “In His Own Words”

            Being in Mariposa nearly full time now, Chris and I have a fairly quiet life. I jump onto computer-based “conference calls” several times a week to keep my work life going and see the faces of people important to me. Living alone and not going into campus every day has been an adjustment, but one that I needed to make as physically moving around is more difficult. This past week, I was on Skype with my sister-in-law discussing, first of all, types of socks that fit my feet and that I can pull on myself. All of my socks with birds, moose, and planets on them no longer feel good. The smart wool socks I loved for years are too tight. Come Thanksgiving, sister-in-law Judy will bring out a couple of 6-packs of inexpensive (cheap) socks from Walgreens, which should fit my needs. I described my shoe quandary-too stiff, too slippery, too narrow, can’t tie bows, too ugly. By the end of the conversation, she knew what I needed. Within an hour, she sent a link to what I hope will work out for me. The call was an hour and twenty minutes that zipped by. She probably doesn’t realize how good that made me feel.
            Last Saturday, we drove 2.5 hours to a favorite winery to pick up a couple of cases of local red wine that we’ll serve over the next week. We had dinner on Sunday at the home of friends Carolin and Dave, former UC Merced colleagues, who introduced us to her Swedish parents. Although it's a challenge to get in and out of the car, sit on my wheelchair for several hours, the visits made a big difference. Seeing different faces, cracking jokes, sipping delicious wine makes all the difference. I’m pretty sure that people felt the importance of the visit, maybe not as much as I did, but I could be wrong.
            Morrie makes a point of writing about a sense of community. Once we’re adults our community changes. Most of us don’t have family readily nearby. Once people retire and no longer go to work every day, the day-to-day interaction with people diminishes. For many people, that might not be a bad thing. For me, I’ve cherished most of the people I work with and have worked with in the past. So, Chris and I are developing our own sense of community here. It takes time and some work. 

“Talk openly about your illness with those who’ll listen. It will help them cope with their own vulnerabilities as well as your own.” Morrie Schwartz, 1996, “In His Own Words”

            Early on, I adopted the attitude that I was open to revealing my medical situation. As I wrote earlier, it pained me that people thought I was lazy and not taking care of myself. People view you differently when you’re in a wheelchair. After my annual ALS checkup two weeks ago, I posted a summary of my condition on Facebook. Many people gave “likes” and “loves”. I didn’t realize I knew so many people. After 41 months since diagnosis, my breathing capacity is at 67%--almost the same as it was a year ago, in fact slightly better. This means that the most pernicious of symptoms, not being able to breathe, isn’t taking me out yet. My weight is within one pound of where it was in 2016, meaning that I’m still able to chew, swallow, and digest an adequate number of calories to keep me in good shape, even though that shape is on the flabby side. Once an ALS person loses weight, they are staring down the possibility of a feeding tube, an invasive procedure to say the least. Last, my major complaint is having to “run” to the bathroom more times than I’d like during the day. Since I no longer “run”, this is literally a big pain in the ass. But eventually, together with medical advice, I’ll deal with it.
They'll be there! Evan, Meghan, Faith & Jim Kneale, Chris--Riverside 2019
            Given this news, I think I’ll be around for a while yet. When you only have yourself to judge your condition, there is the tendency, at least for me, to think your situation is worse than it might be. The good news of Facebook made some others feel good themselves. In a world with frequent bad news, any good news makes a day brighter. 

“Know your friends and family may see you as less incapacitated than you are because they want you to be “better.” They have this need because they care about you.” Morrie Schwartz, 1996, “In His Own Words”

            When people see me or speak to me, and don’t see me creeping along on the walker or struggling to stand up, they say, “You look great!” I appreciate that but also, it’s important for me that people know just what Chris and I are facing. When Evan made his movie about me, he—and I—wanted it to reflect the challenges, not sugarcoated stories of how “fortunate” we were. I am fortunate, indeed, but not because of the illness. It’s difficult, I know, to have people understand. It took me time to realize that their hope that I am “better” didn’t mean they weren’t paying attention. They were just being human.
“Let others’ affection, love, concern, interest, admiration, and respect be enough to keep you composed.” Morrie Schwartz, 1996, “In His Own Words”

            A few times a week, I am overcome with sadness and produce a flood of tears. I’ve learned to let them flow and when they flow no more, to move on ahead with the day. A good scrambled egg and a crisp piece of bacon (yeah, real bacon!) can wipe out the blues. An email from someone who wants something or needs something springs me into action to try and help. A visit and a hug from friends make our day.
            After Thanksgiving on Saturday, Chris and I are holding a wedding renewal ceremony for a few friends and the family who’ve come for Thanksgiving. Back in early spring, as I anticipated the move to Mariposa, the winnowing down of my career, I discussed with Chris about making plans for something special in fall to keep our minds and hearts in a forward place. Although many of our invitees can’t make the trek to rural California, there are enough who will venture up for what we hope will be a gala event and a time I’ll cherish always. We're hoping for good weather, of course. November in California is one of the best months here with warm days and cool nights. The rains haven’t come yet, so we hope to hold an outdoor ceremony on our 7-acre property overlooking some spectacular granite rocks. If it rains or is too cold, I’m getting comfortable with “who cares! We’ll have a great time anyway.” Which I think we will. We’ll be looking out on a sea of faces we’ve known for 60+ years, since early adulthood, when we started our careers, among others, flanked by our children!
            We’ll be surrounded by love, affection, and good cheer. It will be enough to keep me going for a long time.
Mother-son dance at Evan and Meg's wedding 2018


  1. Great advice, Marilyn! Wishing you and your whole family a wonderful Thanksgiving! Give my best to Dana.


  2. wonderful post on so many levels.


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