I have mentioned on here that I have what I will call an "old acquaintance" who was a former classmate that I have interacted with but wouldn't say we are "friends" - per-se.
His name is Kelly Leonard. Google him if you care to. He's an interesting guy and I find him to be extremely philosophical.
Kelly and his wife lost their daughter Nora to cancer about 10 moths ago.
https://chicago.suntimes.com/2019/8/1/2 ... nne-libera
Of course it's heartbreaking.
Kelly has been exceptionally candid about the entire experience from the time his daughter Nora was diagnosed up until last night.
I want to share his most recent and what he claims will now be his last "journal" entry.
This is heavy (as have been most if not all of his writings in regards to Nora) but to me it puts a lot of things we are going through right now in to a different perspective.
Saturday 5/23 - Friday 5/29 - This will be the last Caring Bridge entry
Journal entry by Kelly Leonard — 19 hours ago
Saturday 5/23
Blessedly, we had sun and warm weather for the first part of the day. Nick was out of the house at 7am for work while Anne and I sat outside reading in the garden with Benchley for most of the day. At about 3pm, the skies darkened. There’s a tornado watch and severe thunderstorm warnings in the Chicago area. Because, of course there is.
I’m almost done with the Manji book. She has a very interesting section on multiculturalism:
“A society that revels in multiculturalism resembles a room full of folks buzzing around with identity cards stuck to their foreheads. The first thing you see is their labels… Labels can deceive. That’s because they represent groups, not individuals, and groups are where complexity goes to die.”
The book is a call to see complexities in each other; to reach out and across to those we disagree with and to recognize the personal and institutional barriers that we erect and hide behind when we feel aggrieved. When we see ourselves as victims first, it is very hard to create any space for those kinds of conversations.
There is really only one area in my life that I can claim any sort of victim-hood and that’s as a father who lost a child. But “victim” isn’t the word I would use. It’s a tragedy and a trauma. It’s pain is both foundational and unnatural. The fact of it is counter to what should be.
A memory popped up again on Facebook - 14 year old Nora, proudly holding a cup of hot chocolate with a cookie on top. These memories, I’m realizing, are emotional booby traps for me. I went to settings and disabled them from popping up on my Timeline, reminding myself that I do have some control in this area.
“It has been acceptable for some time in America to remain "wound identified" (that is, using one's victim-hood as one's identity, one's ticket to sympathy, and one's excuse for not serving), instead of using the wound to "redeem the world," as we see in Jesus and many people who turn their wounds into sacred wounds that liberate both themselves and others.”
Richard Rohr
After the storms, the sun came roaring back and just as we started to settle in to watch a movie together (The Trip to Greece), thunder shook the house. It’s kind of the perfect metaphor: toggling between serenity and commotion.
I posted a story on Facebook about how a recent study showed that a very high percentage of the tweets pushing for a full re-opening of our country were actually bots. In response, a guy I went to grade school with (in the wealthy enclave of Kenilworth, Illinois) posted that it was all lies and liberal propaganda. My first instinct was to fight him on the point. But I had just finished this book and so, instead, I just posted “it appears we disagree.” And we ended up having a polite exchange. Could it be this simple? Is our pathway out of this tribal mess a call for kindness and inquiry? We know that science says that people deeply desire to be seen. What if we choose to see them; and not just for the boxes we put them in, but for their full messy, contradictory selves, what happens then?
“To learn to see- to accustom the eye to calmness, to patience, and to allow things to come up to it; to defer judgment, and to acquire the habit of approaching and grasping an individual case from all sides. This is the first preparatory schooling of intellectuality. One must not respond immediately to a stimulus; one must acquire a command of the obstructing and isolating instincts.”
Friedrich Nietzsche
Sunday 5/24
Although we had sun today, it was incredibly muggy. I tried writing outside, but had to move inside and put the air conditioning on.
Looking at the swarms of people out and about this Memorial Day weekend makes me feel that by early to mid-June, we may see another nationwide shutdown when new cases of Covid-19 spike in every place where human beings couldn’t show an ounce of restraint and herd mentality took over.
“Two things are infinite: the universe and human stupidity; and I'm not sure about the universe.”
Albert Einstein
We got invited to a physically distanced cocktail hour in the backyard of our neighbor’s and I was even reluctant to attend that, but it’s a very small group and they are setting up chairs that are well spaced so we’re going to go for a drink.
We got a message from a friend who just had a miscarriage. I wish I had been curious and compassionate enough to have made myself more aware of that particular trauma earlier in life. In fact, it wasn’t until after Nora died that a new friend who had gone through that experience showed me (through her incredible grace) the complexity of that grief.
I know why we shy away from other people’s tragedy, but there is a gift to be found in taking the time to see someone’s hurt and sadness. I don’t think you need to linger there and, in fact, that would make a fetish of the experience. But the seeing and the knowing can only make you a more useful human being - to yourself and to others.
Almost 100,000 deaths in the United States alone from this virus as we sit here on Memorial Day Weekend. Nearly 350,000 deaths worldwide. These numbers should shock all of us. Radical steps have been taken and should be taken in response. And yet…
The social scientists tell us it’s easier to connect to one person’s tragic death than it is to mass numbers. How about both?
“The relatively new trouble with mass society is perhaps even more serious, but not because of the masses themselves, but because this society is essentially a consumers’ society where leisure time is used no longer for self-perfection or acquisition of more social status, but for more and more consumption and more and more entertainment…To believe that such a society will become more “cultured” as time goes on and education has done its work, is, I think, a fatal mistake. The point is that a consumers’ society cannot possibly know how to take care of a world and the things which belong exclusively to the space of worldly appearances, because its central attitude toward all objects, the attitude of consumption, spells ruin to everything it touches.”
Hannah Arendt
Monday 5/24
I’m contemplating putting an end to the public journaling.
I know the writing has been a cathartic and clarifying act for me, but something has been changing for a while now. It’s not clear exactly what the change is, but I sense that it has something to do with protecting my internal connection with Nora. That it’s time for she and I to be still with each other, unshared with anyone else. Uncommented upon. Simply felt.
I have no interest in counting the days. It doesn’t help and it just cements the thing that is already hard to the core. The grief journey is complex. There is no ending, only an occasionally competent management of it. I’m fine and I’m not fine. And it’s fully clear that this will be my state moving forward.
“It is perfectly true, as philosophers say, that life must be understood backwards. But they forget the other proposition, that it must be lived forwards.”
Soren Kierkegaard
I taped my podcast with Scott Barry Kaufman and it was great connecting with a friend and talking through all these interesting ideas of self-esteem, connectedness and transcendence. Scott reminded me of a quote in the book from Rabbi Harold Kushner which was in response to losing his son. The rabbi said:
“I am a more sensitive person, a more effective pastor, a more sympathetic counselor because of Aaron’s life and death than I would ever have been without it. And I would give up all of those gains in a second if I could have my son back. If I could choose, I would forgo all of the spiritual growth and depth which has come my way because of our experiences. . . . But I cannot choose.”
And that’s the truth of all of this. It’s not my choice. None of it ever was. Which doesn’t mean I am surrendering my agency. It simply means I can’t control what happened, I can only control how I respond to what happened. I needed so much help, so I asked for it. Proportionately, I am in no way as deserving of the incredible gifts I received - to be so seen and cared for by so many, even complete strangers. If I were to have broken apart completely in light of all that support, the tragedy would have been mine alone.
But I didn’t break, at least not completely.
Tuesday 5/26
Anne and I were able to sit in the garden last night after a dinner of sushi that we had delivered to the house. It’s time. I’ll be doing my last public post on Caring Bridge on Friday. I’ll likely continue writing and posting on Medium when I have thoughts I’d like to share.
Since I changed the memory notification on Facebook on Saturday, a picture of Nora has popped up as a memory every single morning. I went back into the settings this morning and the button is clearly marked that says “None: we won’t notify you of memories.”
I’m taking this as a sign that it’s the right time to stop. Nora’s telling me so.
Anne has a cousin who is dying of Covid-19 in the hospital right now. Alone. And there’s another editorial in the Chicago Tribune decrying the economic toll and why we need to open up our businesses faster. With such low regard for the human toll, I can’t understand what values these people were raised with. And let’s say they just open up everything, do you sincerely believe that people are going to return to it all business as usual?
My friend sent me a note with a study that shows how much happier people are when they cut off social media and the news. It’s very tempting right now.
I’m not depressed, but I honestly don’t have a name for how I have been feeling.
Wrestling with acceptance.
Grief fatigue.
Displaced reckoning.
Vivid remembrance.
Connecting with my loss.
None of those are quite it, but those words all live in the edges of my waking world right now. Maybe it’s because we’re leading into the months when we began to lose her. It feels like summer today and I’m swimming in a kind of peaceful sorrow.
“The first step to the knowledge of the wonder and mystery of life is the recognition of the monstrous nature of the earthly human realm as well as its glory, the realization that this is just how it is and that it cannot and will not be changed. Those who think they know how the universe could have been had they created it, without pain, without sorrow, without time, without death, are unfit for illumination.”
Joseph Campbell
Wednesday 5/27
“A meaningful life can be extremely satisfying even in the midst of hardship, whereas a meaningless life is a terrible ordeal no matter how comfortable it is.”
Yuval Noah Harari
Woke up in a better space today. Another memory came up on Facebook this morning, but it was a picture of Anne and her sister Julie happily sitting in our garden.
I had a handful of really great conversations yesterday. My interview with Irshad Manji was moving for me in a number of ways. It turns out that she’s a long time listener to the podcast, so she was fully aware of my situation. And we just spoke very honestly and openly about the pains we have had and are having. I told her that it felt like I had just made a new friend and she said, “you have!”
It can be very hard to make sense of a world that is so violent and divided on one hand and so filled with breathtakingly beautiful people with amazing minds and full hearts. Harold Ramis used to give the advice to budding comedians that you need to find the funniest person in the room and stand next to them. I think that serves each of us in life: when you need to find your meaning and your purpose, find the person who lights up the room with their well intentioned genius and stand next to them.
I’m not looking for perfect, because perfect doesn’t exist. But I am looking for people who sincerely want what’s best for others and have given it some real thought. It’s not enough to have good intent if you haven’t done the intellectual work to understand how that good intent can be used in the most productive and powerful ways to make our world a better place; or, at least, to improve our interactions with other human beings (which will have the same effect).
For my part, it’s time to truly slow my mind down, listen and breath. I need to find my peace with the spaces between the words. I’ve never been good at sitting still.
“At a certain point, you say to the woods, to the sea, to the mountains, the world, Now I am ready. Now I will stop and be wholly attentive. You empty yourself and wait, listening. After a time you hear it: there is nothing there. There is nothing but those things only, those created objects, discrete, growing or holding, or swaying, being rained on or raining, held, flooding or ebbing, standing, or spread. You feel the world's word as a tension, a hum, a single chorused note everywhere the same. This is it: this hum is the silence. Nature does utter a peep - just this one. The birds and insects, the meadows and swamps and rivers and stones and mountains and clouds: they all do it; they all don't do it. There is a vibrancy to the silence, a suppression, as if someone were gagging the world. But you wait, you give your life's length to listening, and nothing happens. The ice rolls up, the ice rolls back, and still that single note obtains. The tension, or lack of it, is intolerable. The silence is not actually suppression: instead, it is all there is.”
Annie Dillard
Thursday 5/28
“I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value.”
Herman Hesse
In therapy last night, Fred said that ever since I had the dream with Nora she could see that I was on a new path. She asked if I could answer the question, “What meaning can you draw out from all of this?” I said that this entire journey through diagnosis, care, loss and grief - there only seemed to be two choices: a complete unraveling into endless despair or a calling to love, strength and possibility. I remained convinced that Nora never lost her sense of meaning and purpose. I haven’t lost mine.
I went to the Advocate Health Clinic on Clark Street to get my labs done. You pull your car up and a nurse comes out and asks you a bunch of questions and then takes your temperature. I was fine, so she put a red sticker on my shirt and told me to park and come in. They have all the seating set up so people are six feet away from each other. Everyone was wearing masks and the nurse who took my temperature did the same for every staff member who came in as well. I was in and out in 40 minutes and will await the results to then set up a virtual appointment with my heart doctor.
My heart.
Figuratively and literally broken.
And still…
There is so much work to do. So many conversations to be had, so many insights to glean and we have so many messes that need to be cleaned up. We have books to write and dogs to pet and, surely, more pain to endure. Anne’s cousin passed away yesterday from Covid-19. We’ve surpassed 100,000 deaths in this country alone and nearly 360,000 worldwide. One minimizes this global pandemic to their peril. Over 40 million people have lost their jobs in this country. Minneapolis is burning. Clearly, there is no more business as usual.
My heart… is being tended to by nurses and doctors and friends and co-workers and family. We can’t do this alone. None of us can, no matter how brave, how strong or how smart. And it’s hard. So hard.
This all started for Nora and it ended up being for all of us. She would have wanted it that way.
“She discovered with great delight that one does not love one's children just because they are one's children but because of the friendship formed while raising them.”
Gabriel Garcia Marquez
Friday 5/29
Nora,
We miss you so much. Every second, every minute, every hour of every day. We wish we had you bustling and complaining and joking and growing and lovingly here with us, but you had grander things to do. Your universal duties took precedence over your earthly ones. I know I speak for your many fans and friends when I ask if you can help us do things better here in the mortal realm? Can you help us be kinder to one another? Can you help each of us to see that those with whom we disagree are humans too? Can you help us re-imagine the world as it should be, not as it is?
Or maybe that’s asking too much, given how much you’ve already helped us by living a gloriously short and meaningful life.
I kept writing in the journal after you left us and I’ve decided to stop updating it as of today. About 400,000 times people logged in to hear about you, your legacy and, honestly, how hard it has been to be in a world where you aren’t.
The daily public writing will stop, but the daily private love will not. I love you, Bean. And I know you know. It’s the last words I said to you and the last words you said to me.
It was an honor to be your Dad.
You probably know that I cry more than I used to, but you also know that I’m taking care of myself more than I used to. That balances itself out, right? Your Mom and Brother still tell “Nora stories” and Benchley still sits on the couch waiting for you to come back from puppy school. We haven’t touched your room. It’s just too much to bear. But we know we’ll have to at some point. Any advice on that front?
Although we are made worse for not having you in the world with us now, we were made so much better by having you in the world at all. You are a star.
Everytime I look at the moon, I can feel your smile.
Love you. Get some sleep.
Dad
#TeamNoraForever