MISS Foundation Conference 2010... Day 2, 3, 4, 5 Review
by Kara L.C. Jones
Being at the MISS Conference is intense and life-changing. I don't think most people understand this. From the outside, they think, "Ew, why would you attend a conference all about death?" But they didn't bother to read the materials about the conference that clearly stated this was about learning how the HEART BREAKS OPEN!
Even by Day 2, I can't tell you how many professionals came up to me and said some version of this: "I thought I was coming to this conference for my work. I did not realize I was coming here to get into my own heart. Thank you." WOW. Imagine if all caregivers could work from this experience, could take that heart into their work as they encounter bereaved parents? Eleven years ago, when our Dakota died, the social worker assigned to us refused to facilitate ways we changed our minds, she stuck to protocol, and said things like, "Sorry, you can't do that now because you signed the paperwork." Imagine if she'd been in her heart and able to see US instead of seeing paperwork. I suspect it would have been a very different experience for all of us.
The start of Day 2 at conference was with Dr. Joanne Cacciatore calling for a Bereavement Revolution. Between looking at her empirical, research evidence one moment AND then translating that to HEART and what it means on an emotional level, she showed all the room that: CLEARLY THE SYSTEM IN PLACE IS NOT WORKING! She went on to suggest that the agents of this revolution will be the bereaved people themselves. It is very difficult to learn to advocate for ourselves, but as we do this -- and model for other newly bereaved people -- we all learn to change the system by DEMANDING something different. We have to do this. Because no one inside the system can or wants to do it for us. We can learn to do it and go inside the system ourselves to try and change within -- OR we can protest on the outside to raise awareness. But however we decide to do it, we ourselves are the agents of this revolution.
We see more and more professional settings, drawing up these check lists of "protocol" on how to deal with bereaved parents, DO this, DO that, etc. But auto check lists are NOT the answer. Rather the human RESPONSE-ABILITY is the answer. This means caregivers MUST learn to BE with patients rather than DO for them. Dr. Jo suggested that there is GREAT FREEDOM in this approach for caregivers -- because you no longer need to memorize lists and protocols, but rather you get to JUST SHOW UP and be present. But being present is the key.
Dr. Jo shared many quotes and evidence from other writers and researchers to prove her points. For example, from Lynch she talked about how using platitudes "manipulates the mourner into silence...thereby losing the authentic" experience of being with the mourner in the moment. If you reach out to your patients with things like:
- It was meant to be.
- These things happen for a reason.
- You are young, you can try again.
- This rarely happens.
...chances are you will find the mourning person in front of you shuts down. They are hit in the gut with the reality that you, as their caregiver, are NOT able to be present with them. You are trying to manipulate them into being okay, to rationalize the unrational. You are not willing to sit with the black hole of grief, you are not able to be with whatever the TRUTH is for that patient, but have instead imposed your platitude upon them. NOT COOL AT ALL. And often very damaging in the long run as the bereaved person will have to work through your inability to BE with them. You've set a tone for their grief to not be okay. Instead of just BEing with them, you've imposed upon them. This is revolutionary stuff. If we as caregivers don't delve deep and work on this stuff ourselves, to be better available to others, how in the world can you expect your patients to trust you?!
Dr. Jo ended by sharing excerpt with us from Rebecca Solnit's book "A Paradise Built in Hell" all about how extraordinary community can come out of disaster experiences, again illustrating how the heart has the capacity to break open:
"Disasters are cracks in the walls that normally hem us in..."
This has been true for so many bereaved families I've known and worked with along the way. If we can just stop treating these events as pathology, something to be fixed, or to get over or to heal our patients from them?! If we could just let the events crack open the walls that naturally crack open with any loss -- and BEEEEEE BE BE with people during this process, how much of a different world we'd live in today?!
As bereaved parents ourselves, in TS Elliot's words, "We shall not cease exploring..." our options for becoming advocates to ourselves and others to force these changes if we have to. But I would like to encourage caregivers to consider joining the revolution, too. As many professionals said: They thought they were coming to this conference for their work, but really they were there to change their own lives!
Then in the evening of Day 2, I made a very RIGHT ON choice to go to Suzanne Pullen's session and performance of "He Was Still Born." Now I had no idea what I was in for when I walked in the door to her session. She's written amazing articles for the San Francisco Chronicle about stillbirth and care for the bereaved. She's written chapters for the "They Were Still Born" book coming out this fall. I expected to see some presentation about her experiences and work in this world. But I had no idea she was about to take me into a collaborative experience.
So upon entering the room, some of us were asked if we'd read a line when our number was indicated during Suzanne's presentation. Hmmm? Okay. I took a piece of paper that had a scene number and highlighted line of dialogue on it. I thought, "Well, okay, maybe this is more of a performance than presentation session." So then Suzanne comes out and a slide is projected over head with statistics from her research. Hmmm? Okay, well, empirical evidence AND performance, Okay, I'm rolling with it. And then Suzanne starts to perform, taking us into the heart of her story. Sure enough, the slide changes, another fact offered, and a number comes up -- out of the audience the voice of another member attending speaks out, reading the highlighted line she has on her paper. It is part of the story of a parent who participated in Suzanne's research. WOW!
So this is heart-FULL performance of Suzanne's own story, the stories of many other bereaved parents, all backed up by empirical evidence gathered in research, and the audience is fully participating by becoming part of the script. Talked about an integrative experience!!! I was so impressed at how Suzanne, like Dr. Cacciatore, took the details of research and infused them with emotional meaning. Suzanne's flier descriptions reads:
"This performance incorporates mixed methods research to explore the interactions between healthcare providers and stillbirth patients. It investigates ways performance ethnography can provide unique opportunities to improve understanding, communication and patient-centered care."
Kudos to you, Suzanne! Hope to see this kind of experience brought to caregivers all over the U.S.!!
By the time we reached Day 3, Hawk and I were gearing up for a full day of presenting and teaching our own stuff so there wasn't much time or energy for us to attend sessions this day. Not that there weren't a plethora of offering!! But Hawk and I got into our Hero's Journey mode and pretty much stayed there all day on that Saturday.
Anyway, we were lucky enough to hear back from multiple participants about how much they enjoyed their experiences. Nina Bennett, a bereaved grandma shared the following with us about how meaningful one of the portions of the Journey was for her:
"I took one of Kara and Hawk's Hero Journey workshops. It included a great deal of guided imagery and visualization. In one of meditative images, Hawk encouraged us to see our hero coming toward us. Even though I had not previously identified my deceased granddaughter as my hero, in this scene I clearly saw a little girl, soft with blurred edges, wearing a sundress and running across a meadow. This is the first time I've ever visualized Maddy alive and it's been 7 years..."
And Nina went on with a bit more feedback that I think reflects our own feelings of how the segmented Journey doesn't work:
"I would love to do the full Hero Journey. Kara and Hawk did an amazing job of condensing the information into 90 minute segments, but I need more time to do the meditation and visualization. It takes me a while to get into it. I need longer quiet time to get inside myself. HOWEVER-it was an incredible workshop!"
Other participants shared much the same. They had moving experiences in the TOUCH of Hero's Journey they got, but they wanted more. One person told me it felt like she got a slice of the cake, but she was really hungry and wanted to dive into eat the entire cake! So grateful for the feedback. Helps us much, much, much to know what format works and what doesn't. And how to shape the offerings we pitch out in the future.
If any of you reading this were participants, too, and have feedback to add, please feel free to be in touch with me. And, yes, we will be offering more full day and/or 3 day Hero's Journey events in the future. If you are interested in knowing about those, please do subscribe to our KOTA eNews -- we'll always make announcements there first!
I was very sad to miss Dr. Peter Barr's screening of "Some Babies Die" on that Saturday. I know that Peter is huge proponent of looking at what protocol works with one family and sharing that with other caregivers -- BUT then being willing to drop all that to be PRESENT with the next family, to trust whatever the next family feels is right for them. The key to Peter's work though is to present as many options as possible, to repeat options as many times as possible, to allow families to change their minds as they move through the early days of grief. Simply to BE with them, facilitate whatever they want, to leave our caregiver-agendas behind, and allow the experience to unfold for each individual family.
All that said, I am thrilled to now have my very own dvd copy of "Some Babies Die" and to tell you that via our MISS Foundation work, we are allowed to screen the film for groups of caregivers and other bereaved families who are interested in learning more about compassionate care-giving or for exploring our own stories of grief. Please be in touch if you are interested!
The closing event for the full, main conference happened on the evening of Day 3, and that was the Memorial Service. Several parents shared their stories in the form of poems, songs, sharing narratives. At one point in the event, a slide show of beautiful images and music begins -- each slide contains the name or names of the children being remembered at this year's conference. That would be 20 minutes of slides, 20 full minutes of names flashing. I always lose it at this point and leave. It is too much. Overwhelming. I'm always glad to know our two dead sons are being remembered -- see the image at the top of this entry -- but I am overcome by seeing the 20 minutes of names all together.
This year, I tried very hard to stay because after the memorials, my friend and long time MISS volunteer Sarah Bain was going to be speaking. I didn't get to see her present in person, but I'm so appreciative that she took the time to post her talk online for all of us to see later. Click here to see Sarah's words, and here's a clip of my favorite part of her presentation:
"I want to tell you that this is our opportunity to show the world that the paradigm is indeed shifting, that we are not okay with the way that they think our grief will look. That instead we will teach them about our messy, sticky, unpredictable grief, and that we will survive this because in this room, what we know for certain is that our grief is love.
And our love will be spilled out into the world for everyone to experience whether or not they want to be a part of it.
Because every person in this room is love, and love is the only thing that can ever truly save us."
Amen, Awomen, Apeople!
Agents of the Revolt Unite!
Let your grief-love spill out on the streets and come out of the closet with your truth!
The Sunday of conference was really just a MISS volunteers training and debrief day. It was wonderful to have time with all the other volunteers to hear about sessions they each got to attend, sessions I missed, and to hear how the conference proved to be alchemy for them, too. It was also a time to look at where we are as an organization, to review policy, and to look to how the future might unfold for us.
Of course, as with many non-profits -- especially those doing grief outreach -- funding is always an issue. But I have to tell you I was ALARMED to hear how indifferent the grant-giving and funding source world has been to our efforts. Out of many many many grants written, we've had 1 or 2 come through in all these years. More alarming was hearing what some of the follow up has been from those who rejected our efforts. Had nothing to do with grant writing skill, but rather to do with the particular revulsion of funders to the topic of death. Reality check is that we have actually had the following things given to us as feedback:
We don't understand the need for your service because the kids are already dead.
We are not able to make your cause "sexy." With special olympics and such, we can take photos of happy, smiling kids at the finish line and sell it. But we don't know what to do with your cause.
OMG, ARE YOU FREAKING SERIOUS?
This is where our culture shows the fraying of the "5 stages" of grief. The first funder actually believes that the kids are already dead, so what is there to do now. They actually believe there is nothing to do, no need in the population of the living left behind after the child is dead. They actually believe that the living will be best served to find CLOSURE and move on. BUT closure was prescribed for those who were terminally ill. Closure came because the terminally ill person was facing their own mortality and real closure comes with their actual death. But there is NO CLOSURE for those left living. Those left living, face a lifetime of trying to integrate what it means to live without the person who died. Prescribing closure onto those left behind is WRONG. These funders are the ones with ISSUES. They are the ones who do not want to face their own mortality, do not want to look at what it is really like to live in the face of death. What can you do for us when our kids are already dead? LOOK AT THE FALLOUT! See how death of a child affects financial stability, ability to work and care for living children, restructuring of priorities, health issues, state of mind, ability to re-engage with the world at large. You actually think it is okay to leave this population flailing out here because their kids are already dead? They should be fine? Move on? OMG AGENTS OF THE REVOLUTION UNITE AND EDUCATE THESE POORLY MISGUIDED FUNDERS!
And as to the "Sexy" bit. You must be kidding me. Okay, fine. You want happy, smiling kids at the finish line -- take a look at the photos of all our bereaved siblings at Kids Kamp! Hello, you seriously think these kids are less worthy than the kids in your "sexy" causes? These kids will grow up to run the world. Do you really want to leave them dangling out here to "move on already" because their siblings are already dead?? You want "sexy"? Have you seen any of the tattoos our bereaved parents get on their bodies after their children die -- there are some seriously sexy body shots in there if you want them -- if you were NOT AFRAID of the fact that the tats depict the actual footprints of the child who died. Come on. These "sexy" issue funders can also kiss my behind. WAKE UP AND SMELL THE ROSES PEOPLE! Are you really going to leave this whole segment of society out on a limb?
I left just totally disgusted. Well, on the one hand encouraged that we were all talking about it and trying to come up with options. Encouraged that many of us signed up for a fund raising committee. More passionate than ever that THIS IS EXACTLY WHERE I AM SUPPOSED TO BE because there are still too many blind people on this planet who are not seeing my reality and the reality of hundreds of thousands of newly bereaved parents every single stinking year. But also disgusted that after well over a decade of this work, we are still struggling with the primal issues like funding and getting world recognition for what really happens in our work.
The freaking revolution begins today.
And if you want to donate today to be part of the solution, please do so by clicking here!
And this last day was really just a decompression day for me and Hawk. But there was something funny that happened at our hotel that seemed to be a metaphor for all that we experienced here. See photo below:
...click image to see full size...
|There is no spoon!|
These seemed to stay put during our whole stay. The room cleaning staff seeming to think these were the kitchen's problem?? It was not until after I took photographs of them that they vanished. Seemed a good metaphor for our conference experience:
Just like these utensils, the bereaved are in plain, everyday site, but no one wants to see them, no one wants to take responsibility for the reality they live. But as soon as someone comes along taking pictures like I did -- ie, the MISS Foundation shining light on death and grief -- then and only then will there be a hope of them being picked up, taken care of, etc. I'd rather not shame the world into doing what's right, but if I have to, I will. I'll take explicit photos and splash them where you can't ignore them.
Agents of the Revolution Unite!
And that, my friends, has been my 2010 MISS Foundation Conference experience.
Hope you'll join us in 2012! See you there!