Weathering Grief

by Cheryl Jones

Revolutionary Act

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The past few months, I’ve been struck dumb, collapsed by the weight of what Francis Weller calls the “sorrows of the world.” The best I could do most of the time was share stories other people were writing. I managed a brief comment on Good Grief, my radio show, after 49 people were killed at the Pulse club in Orlando and then silence captured me. What could I say to the unfolding of too many events to absorb, all of them pointing to the tremendous capacity of human beings to go cold and violent?

After the Pulse massacre, I flashed back to the years after I came out as a lesbian. I experienced many scary moments out in the world; verbal attacks on the street, threats to me or the women I was dating, frightening times when national politics centered on an anti-gay hate agenda. But clubs were the place we DIDN’T have to be afraid where, for a few hours, the biggest problem was whether anyone would ask us to dance. And suddenly, that would never be true again. All those young people looking to find a place to discover themselves and have fun and meet people who accept them would forever wonder if it’s safe to go.

THE DEATHS MOUNT

When just a few weeks later, one day after another, Alton Sterling and Philando Castile were shot dead by police officers further opening the gaping wound of too many of these killings to count, I was horrified, struck down, struck silent. They could have been my child, my wife, my friend. (Because I don’t live in a white-only world.) I understood why social media posts implored white people not to be silent, and yet all I could have said at that point was “NOOOOOOOOOOOOO.” Being measured in my speech in general, there was just nothing useful I could add. On my Facebook page, I found myself reposting one impassioned article after another, leaning on an eloquent community outraged by the losses. I was grateful that when I could not speak, others could.

Then in Dallas and Baton Rouge, police officers were gunned down simply because they were police officers. I began to feel hopeless (not a usual thing for me). I started to wonder if things would just keep getting worse until the human community collapsed under its’ own weight.

Then Nice, a place my brother and his family have spent many summers visiting. A place for vacations and fun times, a place of beauty and good food and sun and surf. And now a place of such horrific violence that I have trouble, regardless of quite a good imagination, even picturing it. Families watching a parade, children on shoulders, babies in strollers. What does it take to drive the truck into that crowd, to somehow believe these are your enemies? I am glad I can’t imagine that.

What I knew all along but what has become more and more present for me is that the weight of our collective grief threatens to overcome our capacity as human beings. And perhaps for some, that has already happened. What part does denied grief play in our current political polarization? How many people are looking for someone to kill the bad guy, whoever they think that is, so that there will be no more losses? How does our collective sense of loss factor in to our level of fear and anger, or love and compassion?

MEMORIES TRIGGERED

I was 8 or so when a friend of my father’s, an artist from Germany, came to visit. At the dinner table, they spoke about the Holocaust, which I had never heard about. I had lots of questions when he left, which my parents answered honestly. I remember the horror I felt suddenly knowing there were human beings who had somehow justified killing millions of other human beings. I didn’t know how to put that together with my parents’ consistent message that people are basically good. I was to have more and more questions over the years, as John Kennedy, Malcolm X (who was gunned down a block from where I lived at the time), Martin Luther King, Robert Kennedy were all assassinated. I remember a point where the weight of all that began to turn me cold, make me wonder if maybe we just needed to destroy the world and start over. But I’m glad that the early message, “people are basically good,” won out.

For me, facing up to loss and grief has consistently led to greater compassion for more people, even people whose actions I abhor. If we let ourselves feel another’s pain, can we easily mow them down? If we truly consider another person’s circumstance, can we hate them enough to kill or maim them? We can object, with passion, but we are unlikely to justify murder, I think.

So I choose love, which means I choose a broken heart. I choose to feel every cold hard loss and never go cold to it myself. I choose to cry for no reason and have days where I just can’t get anything done. I choose to find other people to support me when I just can’t cheer myself up. I choose to look for the helpers who come out in tragedy. I choose, in short, to grieve in my own way, following my own timeline, so that I come out the other side with something to say, even if I am mute at first. I choose to transform my anger and sadness and helplessness and disbelief into love so that I have something to offer in the world besides more of the same. And I choose to believe that underneath all the things we do in response to threat and uncertainty, we are, in fact, good people.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host ofGood Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website,http://www.weatheringgrief.com.

Thank you, Stephen Levine

Stephen and Ondrea Levine

Stephen and Ondrea Levine

It was intermission at In The Name of Love, a yearly concert in honor and memory of Dr. Martin Luther King Jr. Each year, Living Jazz gathers incredible musicians to offer musical tribute and this year, they were all singing Nina Simone. My choir, the Oakland Interfaith Gospel Choir always sings and the night has particular meaning to me because my father spent the most vital years of his career as a civil rights worker. He was on the bridge in Selma, he registered voters and, to his great honor, he was near MLK, behind him on the steps, when the I Have a Dream speech was delivered at the March on Washington.

It’s always emotional for me to sing there. Like many people, I feel deeply connected to those times. My parents, both dead now, are intrinsically tied to my experience of the civil rights movement and of the losses we all sustained then. There was John Kennedy, who had given my parents so much hope. Then there was Malcolm X. We lived just a block from the place where he died at the time he was assassinated, in New York for my father to study at Union Theological. Then King, whose death crushed us all and wove itself into my bitterness and anger as a teenager, my sense that things all just needed to be destroyed and we needed to start over. Finally, the grief of my generation deepened (if that were possible) when Robert Kennedy was killed, barely two months after King.

I am always aware of these things when I sing at the event. I press my way backstage, finding a corner to watch the speech they’ve chosen to play, hear the music that is being offered, feel the crowd, the beautiful Oakland crowd, gathered to honor, to remember, to reinforce our commitment to a just and equitable world.

But during the break, the stage doors were closed, and I retreated to the green room. I was feeling unusually quiet and not much into socializing that day, and I sat on a step glancing at my phone, absentmindedly scrolling through Facebook… and then, I saw it, on Stephen and Ondrea Levine’s Facebook page:

Dear Friends,

Stephen passed away at home in his bed this afternoon after a long illness. He was 78 years old. His heart has gone to God. His light is left here with us. Thank you for your blessings and love and friendship. Namaste.                                                    

It only took seconds before I burst into tears, loud sobs heaving my body, completely without my permission (even though I would have given it). I should say here that’s not my usual first reaction to loss. I’ve always envied my oldest child because when bad stuff happens, she purges immediately. It comes right out, full and complete, and then after she has cried her tears, she’s able to go on. Me, it takes awhile. First I get quiet, sit still, go inward and then, only then, do the feelings begin to find their way out of me. I’m also not used to crying in a crowd, although I wouldn’t object to that either. It just doesn’t usually happen. So this was a big surprise event.

Stephen is dead, I thought. It’s unbearable. It made no difference that he had stopped traveling years ago and I had been in touch, but not seen him, or Ondrea, for at least a decade. What did matter was that I was suddenly flooded with everything they had been to me, and all they still are. They had seen me through, and taught me how to handle, my losses. They had been my guides, and that of my first wife, through the horror and the blessings of her long illness. They had taught me how to be with it all, love myself through it, change in ways I needed to, stick up for parts of me I needed to keep that took courage to honor. They had been instrumental in my own transformation through loss, the type of experience I talk about every week on my radio show, Good Grief, and in my blog posts.

All of that was in the background, a forest full of the most beautiful moss and ferns and trees. What was in the foreground was kindness. They were so kind to us. They were so generous. They held our fragile feelings like a loving parent holds a newborn. Their help became so much a part of me that I find myself talking about them often still. As I’ve been asked to be a guest on the shows of others and they ask me what helped me through that time, I am always thinking “Stephen and Ondrea.” And when I begin to describe these things, I hear his poetic and moving and laughing voice. “Let your heart break, and the sooner the better,” “there is no feeling in deep grief we haven’t felt before, it’s just louder,” “forgive yourself” and “underneath all of it is just UNNH, the steady hum that will never die.”

When we adopted a baby, which of course most people thought was completely crazy, they sent a full set of crib bedding, with stars and planets and “Sweet Dreams” embroidered on the corner. When we couldn’t afford to get to a workshop, they let us in at no charge, and several times helped us travel to get there. They held us in their arms, told us what we needed to hear, loved us through.

Eventually, a few of my choir mates timidly approached, “are you ok?” “what’s happened?” and I told them what I could. A deep teacher in my life has died. But that seemed so inadequate. Teacher seems somehow less than what he was to me. Spiritual father or soul healer or guru or… nothing could capture the depth of what he gave us and how that contributed to this beautiful life I live now, the way I love the people I love, the importance I feel in sharing the possibility that, when all seems lost, life sometimes sets a path in front of us. Would I have found my way anyway? Perhaps. But the way I found my way is indelibly etched in all the corners of my being. May he pass to whatever is next the way he imagined it in this poem:

Millennium Blessing

by Stephen Levine

There is a grace approaching
that we shun as much as death,
it is the completion of our birth.

It does not come in time,
but in timelessness
when the mind sinks into the heart
and we remember.

It is an insistent grace that draws us
to the edge and beckons us to surrender
safe territory and enter our enormity.

We know we must pass
beyond knowing
and fear the shedding.

But we are pulled upward
none-the-less
through forgotten ghosts
and unexpected angels,
luminous.

And there is nothing left to say
but we are That.

And that is what we sing about.

 

As I read his words, I make a small contact with that feeling of spacious wonder he so expertly invited me to enter. And I imagine I’m looking in his eyes and saying, thank you, thank you, thank you.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website,http://www.weatheringgrief.com.

 

EMERGENCY 2009: A FATHER FALLS

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It’s getting close to dinner time and I’m in the kitchen, ingredients on the counter and a pan heating up. The phone rings. It’s my mother. It’s not a usual time for her to call, but I don’t think much of it.

“Cheryl, something terrible has happened.”

I have that strange feeling you get when you come home to a house that has been burglarized. Something is not right, but what is it? The evidence is in front of me, but it doesn’t add up to any conclusion. I am suddenly alert.

“What’s happened, Mom?”

“Your dad was out for a walk and didn’t come back. I called 911 to see if I could find him.” I think, “She’s so resourceful. It would take me longer to think of that. He’s only been gone an hour. “

“He’s at John Muir emergency. He fell.”

O.K., now my adrenaline kicks in. “Deb will pick you up. I’ll go right there.”

In the car, my mind races. Will Deb and I have to call off our anniversary trip? We’ve needed some time alone for a while. Is there any way we’ll still be able to go? Maybe it’s not that bad. Why am I thinking about that? I wonder, but then, just because I’m experienced in these things, the answer tumbles into my mind, “You are not ready to deal with what is happening. You are choosing something smaller.”

After they interrogate me about my relationship with the man back in the ICU, they let me in. Is this my father? I always knew he was a huge 6’4”, but he never felt that way. This body, still and empty, does not even remind me of him, the gentle, loving giant. This could be any big guy former football player, aged out of the game.

When Deb arrives, while my mom answers endless insurance questions, I whisper, “Are we sure this is my Dad?” I’m relieved that she isn’t sure either, but we look in the paper bag containing everything they cut off of him and there they are, his familiar clothes. My mother will later regret that they destroyed his favorite jacket.

When my mom comes in, they tell us they can’t tell us anything. HIPAA. Later, there will be too much information.

The connection between his brain and body are severed.

There is no hope of a return yet he is not brain dead.

He could remain in this state indefinitely, hooked up to machines that breath for him, tubes that feed him.

My mother will say, “He would not want this,” but be curiously unclear whether one of us will object to unplugging him.

We will have a family meeting where no one objects. There will be visits from my parents’ pastor and my best friend the chaplain. We will sing endless songs. There will be tears and sadness and acceptance. We will think of all he was, of all he gave to us and to this world. I will regret that I won’t get the chance to take care of him as he declines, while knowing he would have hated that. It is for me that I feel the loss.

The body, refusing to die right away, will take several hours after everything has been removed. I will be there with my wife and kids, and he will wait to die until I fall asleep with my head slumping over on his leg. Deb will wake me; “it’s happening” and I will see him take his last breath.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website,http://www.weatheringgrief.com.

First Christmas Without Mom

December 10, 2014

I’m searching the internet for ways to get through this first festival of lights season without my mother. The articles I read about loss and the holidays offer helpful tips for getting through it. So many helpful suggestions: find meaning in your traditions, ask for help, plan ahead, discover what has most value to you, change it up, keep it the same, leave an empty chair at the table, feel the absence.

This small list hardly scratches the surface. And what I keep thinking is, skip to January!

This is not an option I would actually take, because in some other corner of my being, I want to be with the people I love, I want to watch my grandkids with their eyes lighting up, I want not to lose all the other things I enjoy about celebrating just because I have lost her. I even wish it could be the same as usual, minus my mother, but even in this way, life is not cooperating (and neither is my family). It will be utterly, remarkably and painfully different. There will be no attempt or even option to pretend or assimilate as if she has not died.

How did I manage it when my wife died so many years ago, at almost exactly the same time? I can’t even remember.

So, not knowing exactly what taking care of myself would look like in this moment, I prepare. I ask for everyone’s wish list. I make the house ready and pull the boxes down from the attic (actually, I haven’t done that yet). I try to figure out where we will actually be when. I make lists. And I cry…

Today I pulled up the list from last year, happy for something I don’t have to reinvent, and there, second name from the top, there it was. “Mom.” As it turns out, last year was the last year she will be on my list.

Last year, before her diagnosis, when all she wanted was a family picture. I can’t tell you how glad I am that I drove everyone crazy and begged them to make it happen. There we all are, under the arches at Lake Merritt in our town, Oakland, smiling and happily unaware what the next year would bring.

There are so many things I’m grateful for and I remember them each day. I’m grateful to have a mother I can sincerely mourn. I’m grateful for all the love and support I have in my life, for a wonderful wife, and children, and friends and work I love. But just for today, I’m saying to myself, “Let it stink that your mom died. Don’t make it better. Be grumpy. For one day, don’t try to see the bright side.” Complain a little.

How am I doing?

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website,http://www.weatheringgrief.com.

MOURNING MOTHER

November 25, 2014

Exactly a month after my mother’s death, I’ve boarded a plane for Toronto, Canada to train with the cancer center there in their protocol, CALM (Managing Cancer and Living Meaningfully).

It’s hard to leave home right now. I stick close to my wife and become easily overcome by the many details of living. On the other hand, I’m going somewhere that my grief will be, I assume, accepted, and where I will have space to appreciate that my mother died prepared, facing death squarely with her eyes open, just as this program teaches us to facilitate.

What a gift she gave me. I have no worries that she regretted her death or thought I, or anyone including herself, should have done anything different. There was just the simple fact that the end of her life had come. Maybe there was a strange blessing in such a clear diagnosis, pancreatic cancer, and the 9 months we had together after that. So I’m not really struggling with her death.

Grieving a parent, however, has brought me up short, affected me in ways I couldn’t have predicted. When my father died, I devoted myself to caring for my mother and so, in this time of mourning, they are both sitting on my shoulders, ripping apart the seams of my usual calm. I search for words to describe my new orphan identity which, even at 61 years old, feels profoundly new.

There are the ways my parents enveloped me, sometimes in my awareness and sometimes not. But I find it is the parts of me that pushed against them that suddenly make me feel the ground has been removed. It has been in defining my difference from them that I became myself, my own person. It is in coming to an understanding of each other as whole human beings that I discovered my unique gifts and talents. For all the agreement between us, it is in our disagreements that my life took shape.

I see that this was also true of them with their own parents. They ended up miles form where they began, spiritually, politically, personally, in nearly every way. Their faith remained but what defined that faith changed completely. This is the job of each new generation; to define themselves as “other than” their parents, and ultimately, hopefully, to strengthen the parent-child bond through that exploration. This has been one of the greatest gifts of my life, that my parents were willing to transform themselves to meet the person I became.

But now, that is all over. From here on out, I define myself, I change not in relation to them but in relation to my chosen life. I had no idea that I still referenced them until they were both gone. I now take what they gave me, to make what I will of it.

One of my mother’s caregivers dreamt of her, a week after she died. They were sitting together as they used to, with arms reaching out to each other and one caring for the other. My mother, a look of peace on her face, said, “I am so happy, so very happy,” and they shared together a beautiful moment of connection and contentment. The cares of the world are over for my mother. Now, I feel her as a steady, loving force just out of reach, murmuring to me, “go forward, keep going, continue to follow your own dreams.”! !!

It’s up to me to do that, not for her (or against her) but in her honor.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host ofGood Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website,http://www.weatheringgrief.com.

Wildest Dreams: How We can Learn to Grieve

 September 8, 2014

On the day my wife died, the house was overflowing. In the room with me were our kids, 2 1/2 and 14, and a few friends who had pretty much moved in with us those weeks when we knew it was the end. Out in the living room were people who had supported us through her illness, really supported us! They fed us, took care of our baby and helped our teenager navigate having a parent with life-limiting cancer. They had been there when we cried, and laughed, and napped; even for our difficult conversations. We all learned together to live at death’s door, claiming the word live. My mother would later say that although she had belonged to loving churches all her life, she had never experienced the kind of love she felt in our community of friends.

This was the first remarkable change in me as a result of her cancer and death — after eight years of living next to cancer. I was comfortable conducting my life in front of a crowd. Before cancer, I was shy and, at one point, even agoraphobic. Before cancer I was a one-on-one person, coming to a party when only the host was there and leaving before the guests arrived. Before cancer, I had trouble exposing my deepest feelings. Before cancer, I was anxious and feared abandonment, often fitting myself into what I thought others wanted me to be. Now I was take charge, sure of my own way, telling the truth about myself whether it was popular or not.

That night offers a perfect illustration. About to take a shower when she died, I pulled off my robe afterwards and laid down next to that body that I had loved for so long, holding her in a skin to skin embrace, the first for months that wasn’t inhibited by a fear of hurting her. She was no longer dealing with the pain of broken bones and degenerating nerves and I could bid her farewell with abandon. I realized later I had had no hesitation about nakedness, words of love, songs, whatever I wanted to do to say goodbye to her, disregarding the crush of people in the room, even including (as soon as they could get there) my parents! Where was that shy girl now? Where was my fear of being seen or heard? I had reincarnated somewhere along the way.

This person I had turned into hardly resembled me Before Cancer. I entered grief better able to matter to me. I committed to at least a year of giving myself whatever my grief asked for. Within the boundaries of (now) single parenthood and going back to work, I did that. In the quiet hours when the kids were at school, in between the clients I worked with as a therapist, I played music and dug in the garden and cried and meditated. I ate good food and depended on friends (who were now so much greater in number). Grief, for me, was an extension of the life I had had with her; rich and full and open to possibility. Those eight years of illness had taught me to face, unafraid, whatever I felt in a given moment, to ride the waves of it to my own shore, and to come home to myself in any situation. What could undo that? What could make me truly afraid when I had already lived through her death?

My life today rests on the shoulders of that time. What I discovered then, through deep pain and profound joy, informs everything I do and everything I am. I will never be glad she died, but I will always live in awe of what we learned together; life is a joy, a miracle, and love should not be avoided or wasted. Taking a chance on love is always worth it. I’m grateful for whatever I feel, because emotions remind me, each day, that I am alive.

When I couldn’t imagine how I would live through losing her, I was right. I couldn’t imagine it — not in my wildest dreams.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host ofGood Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website,http://www.weatheringgrief.com.

Running but not Hiding

10381673_10203106224550085_843545988232127550_oWhen my mother was diagnosed with pancreatic cancer a few months ago, I did what many of us do; searched the internet. First, I looked up the doctor my son-in-law recommended. I knew enough about pancreatic cancer to hold off on getting any more details, at least for awhile.

On Dr. Tempero’s website, I was happy to see videos of her. She was obviously smart and informed and confident in her expertise. But that wasn’t the part I liked best. She had participated in a film by the Pancreatic Cancer Action Network (PCAN), a patient advocacy group. Many cancer docs (and I’ve known dozens) don’t interact with those groups, maybe even feeling a subtle criticism if patients want to advocate for themselves. She was not cut of this cloth. She seemed to want to share information and include patients in their own care. This gave me some comfort heading into the experience of cancer with my mom.

I called PCAN and they  sent me a packet of materials about research, diet, living with pancreatic cancer, even a purple bracelet. My mother found it very comforting to have a sense of direction in the shifting sand of her new life. I signed up for their mailing list, knowing that I’d need to decide which information would help her and which would be overload. So it was my email box that received the invitation to run in Purple Stride, a run/walk to benefit PCAN which takes place all over the country.

“Perfect,” I thought, “A convenient antidote to helplessness.”

I’ve learned over the years that even in helpless situations, there’s always something I can do and it helps to do it. Maybe I can imagine whoever is suffering (even myself) in the arms of a great warm protector. Maybe it’s doing laundry or taking a walk. Maybe it’s listening. And perhaps, it’s a run through the San Francisco Presidio.

I didn’t have much time to train. Keeping my own life going and managing my mom’s health was enough! So I set my goal low. Show up. Run the whole 5 K. Don’t stop. Don’t come in last. (My family will tell you I’m allergic to competition, but I’ve been trying to work on that).

I was out of town for many of the last weeks before the run. I even considered not doing it. But then I’d remember my goals. Could I still meet them? I thought I had a chance. I finally went for an actual training run, my wife riding her bike next to me. I got around Lake Merritt, a perfect 5K, and I did walk part of the way, but I made it. (Let’s not talk about two days later, when I could hardly get up from our very low couch).

Anyway, the day arrived. My youngest daughter and my wife drove me to Crissy Field, the beautiful start to the run. We were super early (this is not unusual) and that meant we got a parking place and got a chance to people watch. This was one diverse crowd! There was no real pattern of ages, genders, backgrounds or ethnicities. That made me think there is no true pattern to who gets this terrible illness.

I estimated the crowd at about 1000. The runners and walkers were enthusiastic, laughter and clapping and chatter dominating the tents and grasses, and the tables set up for those who needed to sit down. There was a band playing covers from when I was young, rock and roll and blues, which helped wake me all the way up. There was a zumba class; I was terrible at it, but that was part of the fun. Finally, there were the speakers; encouraging words to send us on our way. Towards the end, the MC called for every pancreatic cancer survivor to come up front. 5. That’s how many there were. 5. I am not ashamed to say I started crying, and I was thinking, “I’m in a crowd of grievers.”

There were strollers with memorial messages on the back, t-shirts with pictures of loved ones who had died, a bulletin board with the pictures and names of so many. The ache in my heart nearly tore me up.

Then it was time to run, and somehow, the biggest impetus was those 5 people, and all the ones who weren’t there that day and, of course, my own mother.  Somehow I was strong that day. I showed up. I ran the whole 5 K. I didn’t stop. I didn’t come in last. And I did leave feeling I had been able to take at least a small step towards something better. The small amount of money I had been able to raise would be put to good use. Yes, taking action, whatever it is, however big or small, helps me. Usually, my actions are much more private; bringing my mom some groceries or calling to see how she is. Emailing someone I know is going through cancer treatment to see how they are, even writing this blog. But always, small actions help me to feel I’m responding, not reacting. Always, if I remember that the actions are a way of perceiving myself as an actor in this world of things beyond my control, I feel more hopeful whether anything has changed or not.

So as I left the city, headed for a full carb breakfast (I’d earned it, right?) I felt good. Bad things were noticed and talked about and experienced, but I felt good. Strong and capable. A little proud of myself (even though I was raised not to brag). And most of all, I felt inspired. People have some pretty terrible experiences in this world, but together, we can do a lot. And what we can’t do, we can see each other through! That’s something to celebrate.

 

 

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website, http://www.weatheringgrief.com.

 

Care for the Caregiver

I’ve been caring for myPrimary-Caregiver mother, who was diagnosed in January with pancreatic cancer, one of the most lethal cancers I know of. Even so, it wasn’t until the other day that I was struck by the thought, “I’m a caregiver again, to someone with a terminal diagnosis.”

I was flooded with memories of the decade I spent caring for my first wife, including all the beauty and wonder, the struggle and the learning. I’ve been remembering how I learned the importance of taking care of myself in a way I had never known before.

Learning that lesson while caregiving often seemed counter-intuitive. No, I needed to take care of her! And of the kids! But it didn’t take long to realize that if I let myself get past a certain point, if I let myself drop, I would be unable to do anything for them.

A particularly stunning example was when I lifted the wheelchair even though my back had been feeling tender, and laid myself up for two weeks. How clear did it have to get? I remember going away for a weekend or two, leaving friends to take care of everything, so I could hit the reset button. I came back ready, willing AND able, renewed for the care I wanted to be giving. I found that my capacity for caregiving was much higher when I attended to my own balance.

So now, I bring all that to the endless appointments, procedures, tests, talks about how my mother wants to die, finances, closet sorting and names on the bottom of furniture, (she’s a planner). I’m also remembering once again how to live with the phrase “terminal diagnosis.” I’m remembering how the constant awareness of death, since I no longer resist it, leads to an appreciation of the love I have for my mother, for this time with her. I was already preparing for the loss of my mother (she’s 84 and I have a low denial quotient) but now I am living that preparation each moment.

I have a friend with ovarian cancer who doesn’t like that term, “terminal diagnosis.” She says, “everyone has one and who made these doctors gods anyway?” But for me, it is not that I now know any more about the time of my mother’s (or anyone’s) death, but that I walk with the awareness of death keeping me awake. I go forward with the knowledge that accepting death makes life more meaningful. For that I’m thankful.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website, http://www.weatheringgrief.com.

 

Graduate level grief


IMG_2067I made a commitment to writing regularly in my blog. I really committed. I thought about what I would say each week over the months, how I would say it, what was meaningful to me, what would be meaningful to the people who read my blog. I made lists, plans, created visions. I was all set… except then I didn’t do it.

Yes, I’m very busy with my radio show, Good Grief, with my family and my work as a grief counselor. Yes, I’m still absolutely committed to time when I’m not working; to singing, creating, and just plain goofing off. But I didn’t think any of that explained why I wasn’t writing. All those things have failed to prevent me from doing many other things these past few months that I didn’t seem to have time for.

I lived with the question for a solid week or two. Why am I not writing my blog? What is in the way? Then I ticked off possible explanations. “I’m procrastinating.” Hmmm… Unlike many other periods in my life, procrastination hardly even qualifies as a part of my personality right now. “I’m uninspired.” Definitely not. I’m inspired beyond my wildest dreams by amazing people I get to meet and talk with every day, by the guests on the radio show and the meaningful conversations I get to have, and by my community and family. “I don’t want to write.” Wrong! I love to write and I’m writing other things all the time with great relish.

When the answer hit me over the head, I almost laughed out loud. I was not writing my grief blog because I was experiencing that time after a new loss when I just don’t want to share. I need time to absorb the new reality, to adjust to the changing picture of what I imagined the future to be. I need time to (wait for it) process.

I had not really written since I found out my mother has pancreatic cancer.

When it finally dawned on me that I was simply practicing what I preach and listening to what my own heart told me I needed, I relaxed. And then, respecting that my mother is busy adjusting too, I asked her if she would be ok with me writing about this newest wrinkle in the fabric of my life. “Everyone knows anyway,” she said, bestowing a blessing on whatever I might say about it. (Thanks mom).

So here’s what I want to say. Cancer stinks. I hate the endless doctors appointments and project management, getting all the pieces to work together. I hate waiting in endless waiting rooms with other people who also don’t have the energy to wait for anything. I hate anticipating losing my mother, who I love, in the very foreseeable future. I hate unexpectedly crying in public when there is nothing at all sad going on. I hate that I know how to do all this so well because I’ve done it before for years at a time without a prayer of changing the eventual outcome. I hate that no one has cured cancer yet, including my brilliant son-in-law, a cancer researcher who I honestly think has a chance of it.

But all of this is really so very small. What I love, even now, is so much bigger. I love my mother, who was clear right away that if they offer her 6 months of chemo for 6 months of time, it’s not worth it. I love the conversations we’re having in which we can share our love for one another in a way that is more immediate, and deeper than it was six months ago. I love that the doctors who are caring for my mother ask her about herself as a person before they talk about treatment and, when they run late for her appointment, apologize. (Thank you, Dr. Tempero and her staff). I love that I have all that experience to offer my mother, to ease her burden and help her feel supported and nourished. I love all the hearts on her Caring Bridge page. I love being so deeply in touch, every day, with my love for her and for everyone else in my life, knowing that having them at all is, at best, fleeting. I love pictures of her with my grandsons. I love that there is nothing in me that wants to shy away from the whole experience.

So, I guess we could call this Continuing Education, having taken what sometimes feels like the graduate level course in grief. Lifelong learning for the griever. Showing up for class. Taking notes. Putting one foot in front of the other and stepping into love, because even the hurt tells me how very much I love. How very very much.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website, http://www.weatheringgrief.com.

The Way Dad Died

DadOn the day my father began his full speed run towards death, he left the condo as usual for his daily walk. He headed down towards the spit, past the house boats, to gaze on one of the things that still gave him pleasure despite nearly constant pain, an unobstructed view of the San Francisco bay.

My mother, who never went with him because she preferred swimming, began a large pot of spaghetti as a surprise. My father would have eaten spaghetti every night if my mother hadn’t been intent on feeding him gourmet meals, still enjoying experiments in cuisine at almost 80.

We’ll never know for sure what happened, but a neighbor later told my mother that she saw him walking back home, looking bad. She was almost crying, telling my mother, “I don’t know why I didn’t stop,” and my mother could not understand why the woman told her, since there was no difference for it to make at that point.

My father never came home.

A few hours later, the phone rang. I was in our kitchen cooking dinner myself, enjoying the flurry I created at dinner time, enjoying a regular, quiet, family day.

“Something terrible has happened,” she said, sounding pinched and almost suffocated. She continued, struggling to get the words out. “Your dad has fallen on the street and he’s in the Emergency Room at John Muir.” The body is slow to register information like that, but a moment later springs to action. “Deb will pick you up. I’ll go straight there.”

When I entered Emergency, guided to his little corner of a back room, divided by curtains and impossibly crowded, all I saw was a large man. I could not honestly tell if this was my father. I asked Deb whether we were in the right place and she couldn’t tell for sure either. I guess I took in, right then, that although the frame I had known for my whole life was lying there, the father I loved was gone. I looked in the paper bag where the EMTs had put his destroyed leisure suit jacket and blue jeans. That was when I believed it was him; I knew the clothes. My mother later regretted they had cut off his favorite jacket and she had to take it home in ruins.

It would be a few days of testing to confirm what my instincts told me; we would have to let him go. Of course, they didn’t tell us that. They told us there was no hope, that his brain stem had disconnected from his body and could no longer tell it what to do. As long as he lived, and on life support there was no reason to think his body wouldn’t survive for quite a while, he would be in a vegetative state. My mother, after making sure none of us would be mad at her, told them we wanted to remove the life support. I was stunned that they seemed surprised, maybe even relieved. They had expected a fight and a long process towards accepting the truth. I couldn’t imagine really wanting my father, or wife, or child, or grandfather or anyone I loved to stay alive like this. The stunned “o.k.” of the medical staff told me that our family was a little unusual, that it’s often very hard for people to accept right away when there is no hope.

But we all agreed (my mother insisted we reach consensus, which took under 5 minutes) that he would not want to survive this, and so we sang to him, we stroked his hands, we surrounded him with love in the slightly less crowded ICU room they’d moved him to, then the medical team pulled the plug.

I recently finished reading Katy Butler’s book, Knocking on Heaven’s Door, about her own father’s protracted death and the medical establishment’s inability to let him die. It was the first time I felt lucky about the way my father died. Until that point, his 2 day hurtle into death was purely a loss. In my wife’s ten years of dying, I savored caring for her. It affected my grief positively to have been able to do for her (with many helpers) the things she needed. I had, however strange it may seem, looked forward to tending to my father in just the same way. I felt robbed of the chance to sit with him while he slept, or sing him a song or read him a book, as he slipped away, gradually. Now, reading how that had really been for Katy Butler’s father and for her family, I was forced to face how truly nightmarish that would have been for my dad. Generally speaking, he hated being tended, feeling himself a burden no matter what anyone said to him about it. And even more, he was not someone who savored attention, even though his brilliant mind and kind heart often brought it to him anyway. He always got out of the limelight as quickly as he could, diverting the spotlight to the people around him. Still, I only had the words before; “he probably preferred dying like this, even if we all hated it.” After reading Katy’s book, I felt the truth of it, deep down.

Thank you, Katy Butler, for helping me to take another step in absorbing this loss! Or maybe just absorbing how it came. The loss itself was, I well knew all along, inevitable. The blessing is simply in all the years I had him.

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cjones2 pic onlyCheryl Jones has been working with people facing loss in their lives for thirty years. She is the host of Good Grief, a weekly radio show on the VoiceAmerica Health and Wellness Channel, about the transformative potential of our losses. You can learn more about her at her website, http://www.weatheringgrief.com.

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