Reclaiming memories

Sprinting through the Dallas airport to make a connection yesterday, I was reminded of another run through this airport 33 years ago.

It was the summer of 1986 and J, her sister, nephew and I were going to west Texas to visit her aunts. That was how I found myself urging them on as we dashed from Terminal A to Terminal D and barely made the flight.

It was a memorable visit. The flat straight-arrow road from Midland-Odessa to Pecos. The warmth of J’s family. The chiles rellenos so good that we brought home as many as we could carry. And, of course, the rodeo which, other than family, is the only reason to ever visit Pecos.

J’s aunts are long gone, J’s sister died four years ago, and now J too is gone. But as I was told when we were going through J’s decline from Alzheimer’s disease, the good memories are now more accessible. Like flying through an airport in anticipation of time together and a new adventure.

Happy birthday, J

24 days into Sheloshim, the first 30 days after burial, and the day after J’s birthday. Yesterday was hard: checking in with our children and her brother, remembering birthdays past, deeply knowing there will be no birthdays future. This notwithstanding that J hadn’t been home for her birthday in a number of years.

J had lived in the memory care unit of a continuing care retirement community for the last two-plus years, so we have gone through the first birthday, anniversary, Hanukkah, New Year’s, Pesach, etc. without her at home. Now we do it again, with a whole new level of intensity. It’s not just that she is not physically at home, a home, by the way, that no longer exists because I sold the house where we raised our children and celebrated countless holidays and simchas. Nor is it just that Alzheimer’s disease peeled away layer after layer of her J-ness. Now she no longer walks the Earth. There is a finality that is undeniable.

Through the stages of Alzheimer’s disease, J was transformed. Through death, she continues to transform for me. And so do I.

In all my sadness I recognize that she is and will be with us in every step we take. This will allow me, at the appropriate time, to go on living the life I want for myself, which is ultimately what she would have wanted for me.

The Starmaker Machinery

More than halfway through the first 30 days after J’s burial, and the myth is growing. J and I were together for 33 years. We were among the first same-sex couples to have children through artificial insemination and to take the necessary steps to legally make them ours.

And so, now that J is gone, others need to mythologize our relationship. From the outside, we were role models.  I can’t say how many telephone calls and cards I’ve gotten that say we showed others how to sustain a long marriage.  It did not always feel that way from the inside.  Indeed, for the last 10 years, likely through no fault of her own, J did not/could not fulfill the wifely duties she had taken on when we wrote our ketubah, the Jewish marriage contract.

Alzheimer’s joined our family in the mid-2000s, although we didn’t know it until later. J was not formally diagnosed until 2011, but with the help of the retrospectoscope I can see signs as early as 2005 or 6. J stopped covering her mouth when she sneezed. A committed environmentalist, she stopped cleaning up her cigarette butts. More painful for me, she stopped asking me about my life with any degree of interest.

The years before J’s diagnosis were less than ideal. J stopped wanting to travel or try anything new. She totally ignored my 50th birthday. She denied that our very old dog was routinely soiling our living room floor.

Publicly, we remained the ideal couple, feted and celebrated, and yet I sometimes fantasized about leaving.

We got the Alzheimer’s diagnosis and of course I stayed. I am glad I did. I learned so many lessons about love during the last 10 years.  That does not mean, however, that we should be placed on a pedestal.

Under Jewish law, mourners are supposed to tell the truth about the deceased and not exaggerate their praise.

Much about J was praise-worthy.  It is an exaggeration, however, to hold us up as a wildly successful partnership for all our 30-plus years.  I wish that outsiders could see the fullness of the relationship. There were hurts and losses and misunderstandings as well as joys and triumphs. J was wonderfully human, and our relationship was complicated, and ravaged by Alzheimer’s disease.  During our years together and now, it was sometimes tinged with pain and always filled with love.  At this stage of mourning, that is my truth.

Scenes of the first days without

The last three days have been a blur. The funeral. The first night of shiva. The interment. The second night of shiva.

And then the heartbreak of cleaning out J’s room yesterday. What to keep? What to discard? They are only things, but will they bring comfort later?

The stories bring comfort. J as a teacher, a neighbor, a friend. Her students loved her. They were not the only ones.

Then there was the dream on the first night. Our children and I and the extended family were in a meadow. J was a large yellow and black butterfly, fluttering among us. Has she completed her metamorphosis?

She is still with us. Last night lighting shabbas candles, I felt her there.

There is finally comfort in knowing that she is always with us — not the J at the end, but the one who made her grandmother’s yeast rolls with our son, wrote funny letters to our daughter at summer camp, and danced in the kitchen with me.

A Good Death

My last-living uncle died last month at 92. He exemplified the Greatest Generation. Drafted at age 19, he fought in the Battle of the Bulge. After the war, he finished his college degree and returned to the small town where he grew up to run the family hardware store. He was a large part of the glue that held his community together, and his family and town returned his devotion with love.

Most relevant to this blog, he died a good death, lucid to the end.

I don’t begrudge him this. And I am happy that my mother, his sister, also possessed a clear mind to her final day, even requesting her last cup of coffee from my son.

Part of me, though, deeply regrets that my father was not accorded that dignity, and that J is long past the point where she will die as the same person who lived.

One of the most awful aspects of Alzheimer’s disease is that it robs the family of the afflicted person long after that person has any awareness of who she was.

Spending time with my extended family after my uncle’s death leaves me praying for good deaths for everyone close to me. It also reminds me that while many of us have little to no control over how we die (although that is changing), we have almost complete control over how we live.

I have been studying a Jewish mystical text, the Zohar, with a friend of mine for the last few years. We have no idea what we’re doing. We don’t read Hebrew and can’t begin to unpack the dense readings. But the teachings often still resonate. I recently read about Abraham’s kindness and generosity. The commentary concluded: “The spiritual principle here is that each time we do for others and those in need, we actually do it for ourselves. It’s a gift to be able to help others….”

My uncle lived this principle. I hope to take that gift from him and do my best to live a good life, hoping it will lead to a good death — many years from now.