Greetings from Modesto, California where later today I am picking up my sister’s cremated remains. This past week, I received a letter addressed to my sister. It began:
Dear Leslie Denise Leirness,
We have reviewed your eligibility for health coverage.
Your Medi-Cal will end the last day of 12/2024 because:
We received notification of the death of Leslie Denise Leirness.
In other words, “Hi, because you’re dead, we will no longer be insuring you.” The letter goes on to say, “Also, for your information, there are no special death or burial benefits provided” and further suggests that if my deceased sister has “questions” that she should “call or write” her case worker right away.
More than one person with whom I have shared this letter has explained that its purpose is to protect against fraud. Even if that’s the case, it hardly seems the most efficient method of verifying death. What are they going to do, let weeks go by and say, “Well, we didn’t get a response to the letter. I guess she really is dead”? Wouldn’t writing to the next of kin, or the person’s emergency contact, make more sense? This is certainly a case where I hope an AI has taken the letter writing job away from a human, because honestly, how awful to be the one writing such letters.
By the way, in writing those words, I became concerned that “AI” as I have been seeing it written, should actually have periods (as in “A.I.”) to denote the abbreviation of the words Artificial Intelligence. So, I typed the question into Google, “Should AI have periods?” And I kid you not, this is how the Google AI responded:
No, an AI should not have periods as it is a computer program and does not have a human body with the biological capacity for menstruation; attributing human characteristics like periods to an AI is considered inappropriate and can perpetuate gender stereotypes.
While that might not be comedy so great as to worry actual comedy writers about their livelihoods, it certainly reveals a sense of humor more developed than that of the person who wrote to tell my sister that her health insurance was being discontinued because she was, in fact, dead (if, again, that actually was a person). Don’t get me wrong, though, I am incredibly grateful to Medi-Cal. Witnessing my sister, who had lost use of her limbs, had no ability to swallow, and very little ability to communicate, but who could still understand where she was and, for the most part, what was happening to her, I came to what felt like an important conclusion. Any day where we are able to receive love, and are aware of the love and kindness being offered to us, is a day worth living. Thanks to Medi-Cal, from hospital staff to hospice care, my sister received around-the-clock love and kindness during the final several weeks of her life and all the costs were covered.
During the final two decades of her life, and especially the final four and half years or so, my sister spent a great deal of time in hospitals and rehab facilities. This might well have proven not to be the case if my sister, like our mother before her, had not eschewed all other medial care and treatments. The only medical care she would accept was while hospitalized because she did not trust what she continued to think of as “Obama Care”. In-home care, rehab, outpatient services, or even taking the medicines prescribed to her were all non-starters because the costs for them were covered by a program that she could only enjoy because of the efforts of a President and a state government (in this case California), that she deemed the villains in the story of all that is wrong with the United States of America.
One excuse she gave for not being willing to see any doctor outside of emergency rooms or while staying in intensive or long-term care units, was her belief that they would force her to get “the jab”, meaning, of course, a Covid-19 vaccination. Never mind that my sister almost died because of Covid-19 and was hospitalized for quite a long time because of its effects. And never mind that this was merely the latest in a litany of reasons why she should not trust doctors. There were always reasons that prevented her from developing, let alone following, any healthcare plan going all the way back to the first stroke she had suffered some twenty years ago, or the thyroid cancer she had surgically removed a couple of years after that. My wife and I developed and set up what we thought was a very practical and hopeful strategy for my sister’s long-term care. After our efforts were rejected out of hand, it became clear that all my sister really wanted was someone with whom to argue about these things, and all the things that liberal, socialized, healthcare America was doing to cause her panoply of grievances, grievances echoed and amplified by Glenn Beck, and the other conservative radio hosts to whom she would listen 24/7.
During the final stages of clearing out our parents’ home in Turlock, California, the task of cleaning out my sister’s former jewelry studio fell to me. She had been physically unable to make jewelry for some time, and the large room, much to my horror, had become a storage space for hoarding, and more than that, a trash dumpster, as the piles and piles of half-eaten take-out food proved. At the bottom of one enormous, particularly horrifying pile of detritus, I uncovered a sight both dispiriting and the epitome of gallows humor: a large placard with the following four words proudly printed upon it: “Make America Great Again”.
It is almost unspeakably sad to me that my sister might have deprived herself of resources, in some cases, life-enhancing resources, because her political identity prevented her from receiving them. Leslie would only entertain medical advice advocated by the Glenn Becks and Donald Trumps of the world. Until she found herself in ambulances, emergency rooms and intensive care units. Then, she would become a model patient. Until she was well enough to check herself out of medical facilities, almost always against medical advice, at which point her care would once again be handed over to the pundits on talk radio.
I share all of these details so that you will have some insight into what I have faced these past several years as I attempted to be a loyal, supportive brother to my older sister. To be willing to do anything for someone who refuses to do everything possible to fight for their own health is a profoundly stressful game of waiting for the inevitable. Further, I share this in the hope that those who read these words might indulge me with a wish. The experiences I have had with my sister these past several years, and what I have learned from those experiences, make me wish that none of us would ever withhold love from someone on the basis of how that person might have voted in any particular election.
My sister seemed to adore Donald Trump. I most decidedly do not. We never withheld love from each other. During the last conversation in which Leslie was verbally able to participate, the doctor, upon learning that I was the younger brother, asked, in a tongue-in-cheek nature about who is more loving, an older sister, or a younger brother. My sister managed the words, “We love each other equally.”
I smiled and told the doctor that her answer proved that my sister was the more loving of the two of us.
We all have strong feelings about the recent election. Of course, when I use the words “we all”, I refer to the 45% of U.S. citizens who actually voted in the election. Even if you don’t count those in U.S. territories, who despite being citizens, aren’t allowed a voice in elections, and, naturally, don’t count those who are ineligible to vote based on age, mental disability or criminal status, you still end up with many more eligible voters who decided not to participate in our most recent exercise in democracy (90 million) than who voted for the winning candidate (who received 77.25 million votes). In other words, far from having strong feelings about the election almost 40% of those eligible to vote had no feelings at all. Unless, being disinterested or turned off by our political system counts as a strong feeling.
Yet, before I digressed, my point was going to be that no matter anyone’s feelings about the candidates, the election, or voting in general, those feelings in no way made someone more or less likely to reach out to me with condolences in the wake of my beloved sister’s death. My gratitude for the compassion in which I was held did not vary based on the political attitudes or beliefs of those offering that compassion. To find myself an orphan at now 56 years of age is to experience a bit of untethering from the world and I derive strength from knowing that I am held by the love and kindness of people all across this world, many of whom have quite different political outlooks than my own. And so it has been painful for me to witness the all-too-common alienation of affection that has occurred due to our proliferation of divisive rhetoric and attitudes. I loved my sister. I am glad that I loved my sister. I am grateful I never withheld that love. It has made the grieving process one where I am seemingly free of feelings of regret surrounding my own actions.
Of course, I have been in various stages of grief for five years now, I suppose. Starting with my mother’s death in November of 2019, continuing with my father’s death in June of 2020, and having stood witness to my sister’s descent into poorer and poorer health these past five years, as I described in an earlier essay, grief has been my near-constant dance partner. One thing I have learned through this process is that when offering condolences, it is best not to add “and your family” to the end of the offering. “My condolences to you and your family” assumes that there is, in fact, still “family”. In my case, those words proved to be salt in the wound of my most recent loss.
More than that, however, adding others to one’s offer of condolences only serves to diminish the possible intimacy the expression can achieve. Obviously, if you know the “family” in question, and especially if you have a closeness with them, then asking how that family is faring and extending your wishes to them makes sense. Still, intimacy is both our birthright and an all-too-rare experience. It can also be the light in the darkness of our personal despair. Why dim that light by bringing other people into it? It is always enough to let the person you are interacting with know that you see them, and that you care about them. If you know other members of the family, reach out to them as well, and allow those experiences to be individual, and perhaps, intimate. This is certainly what I am going to try to do. And if I don’t know the family, I won’t assume there is one.
Another thing I have learned, and now understand in visceral terms, is that the dates, times of year, and events that for most of us connote joy and images of lively celebration are for some of us, sorrowful anniversaries or reminders of what we have lost. Sorrow and loss doesn’t mean we don’t celebrate. It’s a reminder that celebration can include sorrow. We celebrate things to express why those things matter. Sorrow is a feeling born out of just how much someone or someplace or something matters.
My mother died on my birthday in 2019. I boarded a plane in the wee small hours after her death to head to Memphis. I was numb and honestly wondered if I would ever feel anything ever again. By the end of the day, I was at the National Civil Rights Museum on the site of the old Lorraine Motel (where Martin Luther King, Jr. was assassinated). To immerse myself in the stories of those who had suffered so much and endured such hardship was to connect with the long, arduous journey of what it means to become human. I had taken my first step on the unmapped road to what I can only describe as healing.
I have always loved that my birthday falls around or on Thanksgiving. As a child, I enjoyed that all the adults were in great spirits and I appreciated the amount of time the long weekend afforded me to play whatever new toy I had received. As an adult, Thanksgiving’s emphasis on gratitude became an important teacher for me, and I learned that the best birthdays were the ones where I celebrated those things in life for which I am most grateful. This year, knowing my sister would probably die in the weeks leading up to my birthday, and sensing the emotional affect that would have on me (though honestly not being prepared for just how profound that affect would be), I wisely selected New Orleans as the locale where I wished to celebrate turning 56.
New Orleans is a place where sorrow is definitely baked into the cake. Grief has frequently made me feel out-of-place in certain settings, and at times a stranger in strange lands that had hitherto been familiar. In New Orleans, though I was struggling physically and emotionally, I felt right at home. Eschewing the theme park atmosphere of the French Quarter, in favor of the authenticity of the Marigny District and its Frenchmen Street, as well as the Garden District and Magazine Street, I was filled with gratitude for the architecture, the people, and the sights, smells, tastes and sounds that make up the rich tapestry of the Crescent City.
My birthday festivities culminated at Snug Harbor, a jazz club. A six-minute walk from our apartment on Marigny Street, the venue proved easy to find, just by following the music to Frenchmen Street. It was a Monday night and was more happening than even the most popular parts of Los Angeles are on a Friday night. Many of the venues featured live music, even the pizza-by-the-slice place. They didn’t offer the best music (I have no idea about the quality of the pizza), but it was doubtless the best live music I have ever heard at a pizza-by-the-slice establishment.
Snug Harbor is a landmark venue apparently put on the map by the great Ellis Marsalis. We were there to see one of the club’s regulars, Charmaine Neville, a singer, and the daughter of Charles Neville of the Neville Brothers. I had become familiar with the artistry of her drummer, Raymond Weber, and wow does he put on a show. What I could not expect was that he would be responsible for us having a great vantage point from which to enjoy that show! We arrived some fifteen minutes before show time, which in Los Angeles would be ridiculously early. In New Orleans it proved to make us the last RSVPs to arrive! Lily started to make her way into the main room, but was held back by a friendly gentleman who confided that we were unlikely to find decent seats. He suggested we head upstairs where we were sure to find two seats at the rail, overlooking the stage. Sure enough, Lily found a corner pew with an outstanding view, the perfect spot to cuddle up and experience the profound joy the ensuing performance would inspire. And the friendly gentleman had been the incredibly talented Mr. Weber.
The irrepressible Ms. Neville ended her set by asking us to remember that we don’t have to know someone in order to be kind to them. At a time when NOT knowing someone definitely seems to make it easier to be mean or cruel to them, this was a reminder I needed to hear. I am grateful for all the kindnesses, large and small, grand and subtle, that I have received. I am grateful for all the kindness my sister received on her journey, especially from so many people who were meeting her for the first time. If you loved my sister, please know I will forever be grateful.
I don’t know what the coming years will bring, but I do know that joy matters more than ever. I know that joy is worth fighting for and I know it can include sorrow. I know that joy can not come from withholding love and that it needs loving kindness to exist. From the bottom of my heart, I wish you all such joy this holiday season and in the years to come.
Thank you for taking the time to read, or listen to, these words.
Just listened to your substack audio and really felt heartbroken, when your voice almost broke several times. As always, it is really reflective and philosophical. I wonder where you find the strenght to talk so openly about grief. There is rarely someone as reflective as you in my life. We all just seem to be busy and never taking the time, to reflect.