Friday, June 8, 2018
This picture of me and Rayya was taken one year ago today.
This picture was taken on the morning of our commitment ceremony — a day on which we bound our hearts to each other forever, in front of a small circle of friends.
What does "forever" mean, when one of the lovers has terminal cancer?
That's simple: It means FOREVER.
Six months ago this week, Rayya died.
People keep asking me how I'm doing, and I'm not always sure how to answer that. It depends on the day. It depends on the minute. Right this moment, I'm OK. Yesterday, not so good. Tomorrow, we'll see.
Here is what I have learned about Grief, though.
I have learned that Grief is a force of energy that cannot be controlled or predicted. It comes and goes on its own schedule. Grief does not obey your plans, or your wishes. Grief will do whatever it wants to you, whenever it wants to. In that regard, Grief has a lot in common with Love.
The only way that I can "handle" Grief, then, is the same way that I "handle" Love — by not "handling" it. By bowing down before its power, in complete humility.
When Grief comes to visit me, it's like being visited by a tsunami. I am given just enough warning to say, "Oh my god, this is happening RIGHT NOW," and then I drop to the floor on my knees and let it rock me. It's a full-body experience. To resist it is to be brutalized by it. You just bow down — that's all you CAN do — and you let this thing roll through your heart and body and mind, in all its vehemence.
How do you survive the tsunami of Grief?
By being willing to experience it, without resistance. By being willing to feel everything. By being willing to accept the unacceptable.
The conversation of Grief, then, is one of prayer-and-response.
Grief says to me: "You will never love anyone the way you loved Rayya."
And I reply: "I am willing for that to be true."
Grief says: "She's gone, and she's never coming back."
I reply: "I am willing for that to be true."
Grief says: "You will never see her walk in the door again."
I say: "I am willing."
Grief says: "You will never have access to her wisdom again."
I say: "I am willing."
Grief says: "You will never hear that laugh again."
I say: "I am willing."
Grief says, "You will never smell her skin again."
I get down on the floor on my fucking knees, and — and through my sheets of tears — I say, "I AM WILLING."
I am beginning to understand that Grief is not the same thing as Depression. Depression is unwilling. Grief is a MOVEMENT — catastrophic and mighty — that you ALLOW to rock you and spin you. Depression is refusal to feel. Depression is a refusal to move, or to be moved. Depression is resistance, and resistance is futile.
I am not depressed, in the wake of Rayya's death. I am DESTROYED, but I am not depressed — but that's only because I am willing to be destroyed.
I will live on, because I am WILLING. I am willing to take this life on God's terms, not mine.
Love's terms, not mine.
Grief's terms, not mine.
I am willing to surrender to the reality that I will never understand any of this. I am even willing to accept that I may not ever fully heal from the loss of Rayya.
Grief says: "You may never recover from this"
And I say: "I am willing."
This is the job of the living — to be willing to bow down before EVERYTHING that is bigger than you. And nearly everything in this world is bigger than you. Let your willingness be the only big thing about you.
My friend Martha Beck officiated the commitment ceremony last year for me and Rayya. I will never forget what she said on that day: "True love always liberates the beloved."
Six months ago, I had to let Rayya go. It wasn't up to me. It was brutal, and I was willing. I bowed down and wept. God's will, not mine. But Rayya belonged to God before she belonged to me. She NEVER belonged to me, actually; I just loved her. And true love always liberates the beloved.
I am willing.
Two days ago — on the six month anniversary of Rayya's death — Martha wrote me a letter. She said, "The spark of absolutely unique, inimitable energy that showed up as Rayya is no longer in form. I can't wrap my head around it. What is she doing now? What is she BEING now? Death is every bit as common as life, and both utterly baffle me."
Me, too. I am completely fucking baffled. I don't understand Life any more than I understand Love or Death or Grief.
But I am willing to be here for the duration of the mystery. I am willing to be rocked by every last tsunami.
I don't know what Rayya is doing or being now. That is not for me to know. I only know that I will love her forever. And I know what I am doing and what I am being:
I am willing.
Thursday, April 12, 2018
Wednesday, April 4, 2018
"So what do you need a system for? You need it for chores. The stuff you don't want to do, but you need to. The stuff which is easy put off but will hurt in due time. Stuff like paying bills and calling customer service."
Monday, April 2, 2018
"That we are in this together — not just, not words. The truth is at some level when you hurt, when your children hurt, I hurt. I hurt. And when my kids hurt, you hurt. And it's very easy to turn our backs on kids who are hungry, or veterans who are sleeping out on the street, and we can develop a psyche, a psychology which is 'I don't have to worry about them; all I'm gonna worry about is myself; I need to make another 5 billion dollars.' But I believe that what human nature is about is that everybody in this room impacts everybody else in all kinds of ways that we can't even understand. It's beyond intellect. It's a spiritual, emotional thing. So I believe that when we do the right thing, when we try to treat people with respect and dignity, when we say that that child who is hungry is my child … I think we are more human when we do that, than when we say 'hey, this whole world , I need more and more, I don't care about anyone else.' That's my religion. That's what I believe in. And I think most people around the world, whatever their religion, their color — share that belief. That we are in it together as human beings. And it becomes more and more practical. If we destroy the planet because we don't deal with climate change … Trust me, we are all in it together, and … That is my spirituality." Bernie Sanders
Friday, March 9, 2018
Wednesday, February 14, 2018
Thursday, January 11, 2018
|Photo by Marjan Lavarevski|
This advice for caregivers of Alzheimer's patients comes from my good friend Michele Macomber. She gave me permission to post this in the hopes it reaches those who need it.
. . .I was hunting for a good basic dementia information site to share – they are legion; pick one - and I was struck by this meme from The Alzheimers Reading Room:
Around one half of respondents agreed:Since my dad died almost four years ago, our attention has turned to caring for my mom, and this statement has proven heartbreakingly true.
As soon as someone is diagnosed with dementia,
they are no longer treated like a thinking human being.
I have been lucky enough to have a family member who is trained in teaching children, families and professional caregivers about the social needs of dementia patients to clue me in. She has been able to explain what's going on with our mother's mind, and what she can and can not do with it. Details have been quite specific about what kind of support my mother needs from her caregivers, family and community.
While these needs and how to meet them seem obvious once explained, I notice again and again how even the most dedicated and compassionate doctors, caregivers and friends are unaware of how to be with, and support or assist patients and loved ones living with dementia.
This dismaying gap in public awareness of how to accommodate what is essentially a common disability – one in six women and one in ten men over the age of 55 will get it – needs to be closed.
Over the last three decades, as our society developed an awareness that Americans with disabilities have a right to be accommodated, we moved to install ramps, handrails, wider doorways, and beeping crosswalk signals, provide telephone and on-line services for vision- and hearing-impaired individuals, and pass laws guaranteeing access to public places for service animals.
We have also figured out that when we see our fellows who once were kept hidden from society - persons with developmental delays or intellectual disabilities - that we see them as people, treat them with respect, make the allowances they require and value them for their contributions and membership in our society.
Over the last three years I have taken my mother to many doctor's appointments, sat with her during three emergency room intakes and two hospital stays, and seen her in the care of countless “memory care” caregivers. (Quotes because in the UK “memory care” refers to a pretty complex understanding of how to effectively engage with someone with dementia, whereas in the US it more often refers to a locked-down facility for Alzheimers patients, with at best only a passing nod to dementia-appropriate activities.)
It took us a couple of years to figure this out, unfortunately. What often happens is a doctor or nurse walks in, talking fast, firing questions or telling us what they are about to do. Sometimes they address my mom, sometimes they don't, assuming it's pointless.
Either way she is confused by what is going on and she can not understand what they are saying.
It's disrespectful to her, and frightening for her.
I break in at this point and tactfully offer them a one minute crash course in communicating with dementia patients.
I explain, while demonstrating, that if you take my mother's hands in yours, look her in the eye, and speak clearly and distinctly, that she can actually understand everything.
She usually proves my point at this moment by responding with a reasonable and intelligent reply. The looks of surprise (It speaks!) are gratifying. The neurological ward nurses were delighted with this trick. Despite having hundreds of elderly patients with dementia in their care, this one little essential thing had never been included in any of their training.
One's identity is what makes a person herself.
Think about what makes you yourself for a moment: your memories, your community, the creative work you do, being needed and useful, your home, what music you love, your faith.
Caring about someone who has dementia is heartbreaking and infuriating as the stuff you like doing together and your usual ways of relating to them stop working well.
Your friend has become a different person.
But for your friend, they have not ceased to be themselves inside.
For them, these changes are terrifying and profoundly depressing as bits of identity blink on and off and eventually don't blink back on again.
They have a disability that makes it hard for them to go where they want, do what they want, organize, make phone calls, use electronics, remember names or words, separate past from present, ask for help, hear, see.
Their essential self is still in there, but they can no longer make the first move.
What they need most is help staying connected to their identity; they can no longer reach out, so we must reach in and help them.
This is when they need their community to stand by them and show them they are still wanted, needed, useful, interesting, loved, a valued member.
This is what needs to enter the public awareness.
If you have had someone close to you with dementia, you already know.
If you realize that you have a friend who is getting dementia, help them stay connected to their community and to themselves because their increasing difficulty doing this for themselves is a disability that needs its own kind of access ramp.
We need to spread the word.
My mother's mind is still in there, it's just ensnared in the plaques and tangles.
If she seems muddled and I miss my mom, I only have to tell her my troubles and there she is, offering sympathy and comfort. If she is confused in the modern world, I read her James Herriot stories, full of 1930s English farms and countryside, and she becomes oriented within a world that makes sense. If she complains that the caregivers are being beastly to her, I ask her if she means the nuns at St. Audrie's, and she says, “Yes!”, as though I wasn't keeping up and have asked a silly question.
Please help spread the word so we can increase awareness and compassion. No one is ever too far gone to be treated with grace and humanity.
Tuesday, January 2, 2018
Saturday, December 30, 2017
You might think that you don't matter in this world, but because of you someone has a favorite mug to drink their tea out of that you bought them. Someone hears a song on the radio and it reminds them of you. Someone has read a book you recommended to them and gotten lost in its pages. Someone's remembered a joke you told them and smiled to themselves on the bus.
Never think you don't have an impact. Your fingerprints can't be wiped away from the little marks of kindness that you've left behind.
Saturday, December 16, 2017
Nobody tells this to people who are beginners. I wish someone had told me. All of us who do creative work, we get into it because we have good taste. But there is this gap. For the first couple years, you make stuff, it's just not all that good. It's trying to be good, it has potential, but it's not. But your taste, the thing that got you into the game, is still killer. And your taste is why your work disappoints you. A lot of people never get past this phase; they quit. Most people I know who do interesting, creative work went through years of this. We know our work doesn't have this special thing that we want it to have. We all go through this. And if you are just starting out or you are still in this phase, you gotta know that it's normal and the most important thing you can do is do a lot of work. Put yourself on a deadline so that every week you finish one piece. It's only by going through a volume of work that you will close that gap, and your work will be as good as your ambitions. And I took longer to figure this out than anyone I've ever met. It's gonna take a while. It's normal to take awhile. You just gotta fight your way through.
Saturday, November 25, 2017
Top 5 Regrets of the Dying:
- I wish I'd had the courage to live a life true to myself, not the life others expected of me.
- I wish I hadn't worked so hard.
- I wish I'd had the courage to express my feelings.
- I wish I'd stayed in touch with my friends.
- I wish that I had let myself be happier.
Saturday, October 21, 2017
"A lot of times with grief, it's not that you can plan what to avoid and what to go to. Memories can ambush you. And you get used to that. The plans and contingencies I make don't matter. This thing is going to have its way with me one way or another."
(Sent from my phone)
(Sent from my phone)
Thursday, October 12, 2017
"My friend just died. I don't know what to do."
A lot of people responded. Then there's one old guy's incredible comment that stood out from the rest that might just change the way we approach life and death.
"Alright, here goes. I'm old. What that means is that I've survived (so far) and a lot of people I've known and loved did not. I've lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can't imagine the pain it must be to lose a child. But here's my two cents.
"I wish I could say you get used to people dying. I never did. I don't want to. It tears a hole through me whenever someone I love dies, no matter the circumstances. But I don't want it to "not matter." I don't want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can't see.
"As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.
"In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything... and the waves come crashing. But in between waves, there is life.
"Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of wreckage, but you'll come out.
"Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks."
Tuesday, October 3, 2017
People remember kindness and sweetness and generosity and compassion. How you made them feel. That they always felt welcome in your presence, that they felt loved and appreciated. They notice positivity and how you never said negative things about other people. That you walked through life with love and an open heart.
So many or the things we place value on in this life don't really matter in the end.
Do not worry about bad hair days or "extra weight" or pimples or wrinkles or any of the other things people scrutinize when they look at themselves in mirrors. You be you, and know you are loved.