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| 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.
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| 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.
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| 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.
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| Mother-son dance at Evan and Meg's wedding 2018 |
Great advice, Marilyn! Wishing you and your whole family a wonderful Thanksgiving! Give my best to Dana.
ReplyDeleteDeb
wonderful post on so many levels.
ReplyDelete