The earliest communication I can find from Ilene Kaminsky about the MBC Healing Circle was in April of 2021 where she was explaining what a healing circle was, highlighted her training, and invited me to participate. While I’d interacted a bit with Ilene on Twitter at that point, our interactions then were superficial and wholly related to our blogs and her LBBC HMV training. Once I read a little about the methodology and what the purpose of a Healing Circle was, I was cautiously positive about joining — as anyone who knows me knows, something as subjective as a Healing Circle is not usually my cup of tea.
Our MBC Healing Circle consisted of Ilene Kaminsky (host), Lori Burwell, Kristie Konseur, Liesl Phelan, Victoria Goldberg and myself. Of all of these ladies, Victoria was the only one I’d met in person when I traveled to New York to attend Emily Garnett’s Celebration of Life, the rest I only knew online or through the circle. It is an odd thing, getting close to people you only know on one platform, through one window into their lives. We all present a curated version of ourselves on social media; at the same time, I think those of us who use social media to educate about living with MBC often try to give a more realistic version, or at least not so air brushed and perfect.
And so we began to meet every other week in our Healing Circle, where everything we discussed was confidential and private. It took me a while to adjust to the style of sharing, of never responding to the other’s shares and trusting that the person already had the answers to the question. For this “fixer,” that was a heavy lift, at first; also, the prohibition on talking about the issues brought up inside the circle once it was closed.
It wasn’t long before everyone in the Healing Circle began talking about getting together in person. Ilene was the primary instigator and did the vast majority of the research for the trip. Unbeknownst to me, it was discussed among the others that coming to Florida would make my attendance easier because I was the only member of the group with little ones still at home.
And so we met up that first week of October at an AirBnB in Hollywood, missing one of our group, Lori Burwell, who wasn’t well enough to make the trip literally at the last moment. We stayed in touch with her that week (mostly Ilene did) and kept her in the loop as much as she wanted about our activities. At some point, it was too hard for her to hear about the time we were having since she couldn’t come and we did our best to be sensitive to her feelings — we all wanted her to be as “with” us a possible, even from afar.
The pictures show the best parts of the week.
One of the best things about spending time with other women living with MBC or another serious illness is that there are no recriminations when any one of us needed to rest rather than attend a planned outing.
Another highlight of our time together was going to an authentic Russian restaurant, which was hidden away behind a condo community and was right on the water, thanks to Victoria’s parents recommendation. We were serenaded in Russian and got to try a lot of different dishes that I’d never had before, expanding our palates and getting to know one another even more.
During the time we had together, we conducted two in person healing circles in the lovely backyard of the place we stayed.
It was during the second Healing Circle of our time together that we discovered the seriousness of Lori’s health and were able to pass along messages of love and support as she was hospitalized and underwent medical procedures. It was the next day that we learned of Lori’s death due to complications from having had COVID and the earlier damage to her lungs, both of which created overwhelming blood clots. You can read about Lori’s life and her family here.
While the time together was healing and was significant for each of us in different ways, it was harder to regroup after we all returned to “real life” from our time together. I am always thankful for the time I get with people in real life since so much of our lives are online these days; at the same time, those times together in person can make it even harder to return to the limited ways of connection across the internet.
It wasn’t much longer after we left our in person circle before Ilene began to seriously decline and we lost her in November. You can read more about Ilene and the mark she left on the #MBC Community here. On December 5th, we lost Kristie; you can read more about her life and legacy here.
Looking back, I think the signs that both Ilene and Kristie were struggling more than they were letting on were there during our time together. There is a particular affect of a failing liver that affects the personality of a person that are difficult to differentiate from mental health struggles. Our time together was not without it’s conflicts and some sharp words, but at the end of the day, we’d created a small community all our own. A safe space to share about the things we found important, the things we needed to unload, the things we needed to figure out.
Nothing is perfect.
Nothing is free from flies in the ointment.
Intimacy is complicated and messy.
Connection amongst those of us who are struggling to continue to live while we are in the midst of dying is fraught with loss and grief.
Always in the back of our minds is the knowledge that this time, this conversation, this interaction, this touch point, might be the last.
And so the three (3) of us left have decided to continue to meet and connect, not in a formal healing circle, but to continue the legacy of those we’ve lost, to continue to foster connectedness with each other, and to continue to do life together. Whenever we lose amazing people I’ve connected with, I feel the need to take a step backwards as far as building into those in the MBC Community. Sometimes the loss is just too great. And yet, I’m always brought back. It is those deep connections with others that sustains me on those dark days, those who show all of us how to deal with those dark days and to truly LIVE while facing death with clear eyes.
And so I close with a saying from one of my favorite TV shows, Friday Night Lights: “Clear Eyes, Full Hearts, Can’t Lose.”