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Running but not Hiding by Cheryl Jones

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Health & Wellness

pcanrun

When 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 thePancreatic 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.

CJones-player-wide

Cheryl 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 Weathering Grief.

Care for the Caregiver By Cheryl Jones

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Care for the Caregiver By Cheryl Jones

primary-caregiver

I’ve been caring for my 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.

Cjones

 

Cheryl 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 Weathering Grief  

Weathering Grief By Cheryl Jones

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Weathering Grief By Cheryl Jones
ruby-bridges

Ruby Bridges by Norman Rockwell

Last night my choir, the Oakland Interfaith Gospel Choir, performed a benefit concert for the Ruby Bridges School in Alameda, California. We’ve done that for the past few years and it’s always great. I love our service concerts; prisons, schools, homeless shelters, nursing homes. I sound altruistic, but really, I admit, it’s a little selfish. It feels good when the music touches people down deep and that’s always true when we give it as a pure gift!

Anyway, I was up there in the alto section, robed and ready. The curtain opened and suddenly my heart put two and two together. This “bunch of misfits” (as the director Terrance Kelly likes to call us) would not have been possible, let alone flourishing, without people like Ruby Bridges, Martin Luther King Jr., my dad (he would be so embarrassed to be in the same sentence that way). People showed up, they risked, they walked into enemy territory with no weapon, they went to jail or school or lunch counters and the main point was that we humans needed to be together, not separate.

That’s what Ruby Bridges said last night. Some day, when we are in trouble (and we will be) we will not care what the person looks like who helps us.

That made me think back a few years. My mother was in the intensive care unit for a bleeding ulcer when she hemorrhaged. Blood coming out of everywhere and, through the tiny window in the hall, my wife and I saw person after person rush to her bed. It seemed like the whole staff of the ICU was crowded around that tiny bed (that was very close to the truth, as it turned out). I had just arrived at the hospital and before my wife spoke, I knew things weren’t good. “It’s bad, honey,” she said and moments later, they rushed her out, literally running to the OR. Her nurse, the one we liked the best, came out and gave us the details, betraying his lack of confidence in her chances for survival.

It’s funny what you do at a time like that. I called the section leader from the choir to let her know I wouldn’t be at rehearsal (!) She said, “I can’t believe you’re calling me,” or something like that, and I said, almost as an afterthought, “ask people to pray, please.”

I pray, but in a pretty “equal opportunity” way. “God, whatever you are, whatever is true, please walk with me to the best outcome. Please support me (or whoever I’m praying for) for the greater good.” Stuff like that. Having tried on Christianity, Buddhism, Judaism, Native American practices, and many others ways of looking at the Mystery, I find they all lead to the same place in me, so I don’t discriminate. I knew already that when you ask an interfaith gospel choir to pray, well, you are going to get nearly every kind of prayer known to humankind and that’s part of what I love about the choir. I was immediately glad I had thought to ask.

The days passed and somehow, she lived. Medical personnel found it hard to believe and dropped by her room just to confirm she was still kicking (that was definitely a figure of speech at that point). One told her that he didn’t expect to ever see again in his career someone who lived through what she did. The doctor told us right after surgery that things were a mess and he didn’t even know exactly whether he had succeeded but then, several days in, told her, “well, I guess you’re going to make it.”

All of this was coming back to me up on that stage. I was looking across at Ruby Bridges, who walked, alone, into a river of white kids, the first child, at six, to integrate that southern school and she was surrounded by a sea of at least 50 children, every color, clamoring around the stage and high-fiving our director as they looked up at us, every religion and spiritual tradition, every color too, and a diversity of sexual orientations, reflecting what Ruby Bridge’s courage had helped create.

“Pray for my mom.”

I called the section leader back a few days later to tell her it looked like my mom was going to make it. I told her it was a miracle (I could think of no other word). Then out of my mouth came, “It looks like when we all pray for the same thing, God says, ‘All my people are together; I guess we should give them what they want.”

 

On Good Grief we explore the losses that define our lives. Each week, we talk with people who have transformed themselves through the profound act of grieving. Why settle for surviving? Say yes to the many experiences that embody loss! Grief can teach you where your strengths are, and ignite your courage. It can heighten your awareness of what is important to you and help you let go of what is not.
On Good Grief, we are inspired by people who have made something miraculous out of their deepest heartaches! We listen as they share how they have walked through their own exquisite pain and what they have gained as a result. We come away ready to follow our own dreams to a deeper, more meaningful time on this beautiful earth! Listen for Good Grief, broadcast live every Wednesday at 2 PM Pacific Time on the VoiceAmerica Health and Wellness Channel.

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