Letters From Cancerland: Mediating With Myeloma

For a little over two years now, I have been a staff mediator at our local Juvenile Court.
Our court established a mediation department over a decade ago to try a different approach to settling cases. Most of them involve unmarried parents trying to resolve custody and visitation issues. My role is to help the parties communicate with one another and try to reach agreement on arrangements that are best for the children.
I am not a judge or magistrate; I have no authority to order anyone to agree to anything. Much of what I do is listen carefully and then help the parties hear what is being said (as opposed to hearing what they think is being said). How I do that is I “reframe” the statement for both the speaker and the listener. So a statement like, “he never knows when the baby is hungry or has a dirty diaper,” may become “so I hear you saying you have concerns about his parenting skills and would like to see them improve. Am I hearing you right?”
Recently it occurred to me that I would like to mediate with Multiple Myeloma. (A little anthropomorphism never hurt anyone.)
I have been on a Velcade (bortezomib) vacation for almost two months now. I have little reason to think the vacation will not continue after I see my oncologist in late June.
In a mediation setting, the Velcade vacation is not a disputed issue. It may be in the future, but for now we can take it off the table.
But there are other issues. In a mediation, the mediator would ask me to voice those issues so that Myeloma and I could try to resolve them.
I recently finished a course of antibiotics for an infection that latched onto me in late May. The infection and the treatment left me tired and with even less energy than usual. I have tried to take a positive outlook: I am feeling better. I suspect I should stop right there and be grateful.
But no, I want to look at Myeloma across the mediation table and blurt out, “I’m tired of getting sick at the drop of a hat! Would you stop messing with my life?” (Probably my voice would be raised and there would be more than a little heat in it.)
A skilled mediator would say, in a calm and placid tone, “What I hear you saying, April, is you do not want any more opportunistic infections. Is that right?” I nod. The mediator continues. “Myeloma, how do you feel about that?”
I strongly suspect that Myeloma, like more than a few parties at mediation, may be tapping its foot impatiently, wondering how long this is going to take. In response to the mediator’s gentle inquiry, Myeloma shrugs its shoulders.
“I don’t know. I don’t control that kind of thing. It’s not my fault she gets sick. Her immune system is full of holes and that’s not my fault. Well, maybe some of it is, but sheesh, two stem cell transplants, tons of steroids, six months of Velcade. I mean, what does she expect?”
The mediator turns to me with an expectant look on her face. Am I intending to reply? No, I raise a different issue.
“Fine, fine,” I mutter. “Don’t take responsibility. Okay, though, I’m sick and tired of being exhausted all the time. Weasel out of that one, Myeloma.”
Okay, my voice definitely came out on the ascending scale that time.
The mediator starts to reframe my statement, “I hear April saying she would like to have more energy and…” Myeloma holds up its hand and cuts her off.
“Look, what can I say? It’s the same thing. I can’t give April what she wants. I’m a cancer, not a miracle worker. Fatigue is a very common symptom. And besides, I shouldn’t be getting all the blame. Let’s talk about all of the side effects of the treatment, including peripheral neuropathy. I notice she isn’t mentioning any of those. And her age too! I mean, it has been almost nine years.”
Myeloma’s voice is low, tired itself now that I listen to it. I look down, uncomfortably flexing my neuropathic toes in their shoes. Myeloma is right. I am trying to mediate for a better “now” and the cancer isn’t the only factor. Medications, my age, my own biology—all of these are players in how the disease impacts my personal life.
The mediator lets the silence fill the room for a minute, and then asks if there is anything else either of us wants to bring up while we are here.
No, not really.
Sometimes in mediation, you bring everyone to the table, have a meaningful discussion, and still walk away with no resolution. Sometimes the most you can get out of mediation is an opportunity to voice your grievances or anger or sorrow.
And sometimes, if you are fortunate, you get the opportunity to open your hands and let those feelings, the frustration and the sadness and the resentment, go. It is not a resolution, but it is a way forward.
Often at the end of a parenting mediation, I have the parties leave separately. Emotions run high, and the elevators are a little close at a time when some space is best for everyone. Other times, even after an emotionally charged mediation, the parties may look at one another sympathetically and walk out together, reminding each other of the ball practice or the birthday party.
If I were at the mediation table with Myeloma, we’d probably walk out together. We have known each other for so long and have such a history together. Maybe there’d be a quick hug and a soft “take care” before we went our separate ways. We know we’ll see each other again.
And that’s okay.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
APRIL SAID:"If I were at the mediation table with Myeloma, we’d probably walk out together. We have known each other for so long and have such a history together. Maybe there’d be a quick hug and a soft “take care” before we went our separate ways. We know we’ll see each other again."
So what I hear you saying, April, is that you accept and embrace MM as your life-long partner, for better or worse....is that right?
Hmmmm....I see...interesting.
Well, speaking only for myself of course, I say pat MM on the back as it leaves the room...then as you follow it out the door, repeatedly plunge and twist a dagger in its back!!!
But hey, that's just me, not going gently into that good night
Best,
Steve
This is an especially thoughtful piece.
I understand Steve's desire to wield a "dagger," but I'm afraid that's not an option. "Mediation without resolution" is more likely, I think. Or maybe "dancing with an unattractive partner"?! It appears April has been dancing nine years; I've been dancing seven; these days we're lucky that the music can play longer and longer.
Bob
I second Bob. April, your column was amazing! It made me look at the disease from a fresh perspective. Well done to you!
Fiona.
Hi April...I really hope that you can negotiate a longer holiday from that awful adversary. In fact, I hope you can get a restraining order against MM and show it the door for once and for all! Best wishes to you...what an imaginative column...you are so talented!
April - It was a nice piece of writing. However, I am with Steve on this one. No hugs and kisses for MM. No negotiations or compromise. No trying to understand it's side of the story. It is an enemy that only has one purpose - to destroy us. Hit it hard, hit it fast and don't look back!
April, thanks for the mediation image. I would much rather take part in a mediation than a war. Hostility takes a terrible toll, both emotionally and physically. I would rather use my energy to care for myself than be in constant conflict.
I laughed at the dagger image at the door. I have participated in family mediations where I was glad we were in a courthouse with a weapons checkpoint!
Trust me, I am not cozying up with myeloma once we leave the mediation room. But it is what it is. It has made profound changes in my life and health. It's not going away. I'm the one who needs to remember to keep moving forward (because the myeloma will do what it wants without any reminders from me)!
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