Letters From Cancerland: Groups

I don’t do book clubs.

Don’t get me wrong. I like the idea of book clubs. But I am a terrible member. The last book club I belonged to was made up of five to six women whom I knew, all bright, articulate, avid readers. A match made in heaven, or so it would seem.

The very first meeting I attended, when we sat down together to discuss a wildly popular, best selling novel that I loathed, the discussion went something like this:

Member 1: “Loved it.”

Member 2: “Great characters.”

Member 3: “Well-developed plot.”

Member 4: “I couldn’t put it down.”

April: “I thought it was anti-Semitic, racist, and poorly written.”

Deep silence.

I lasted one more meeting before coming up with an excuse to drop out. I don’t think they missed me.

So what has this got to do with myeloma?

It’s the group thing. In this case, support groups.

Many people with myeloma have great support groups. I know this because I’ve heard about them. Good times, good friends, good conversations, and good camaraderie abound.

We have a multiple myeloma support group in the central Ohio region. It is the result of lots of effort and passion by a myeloma patient who took the group from proposal to reality in a few short months. The group is now three or four years old.

I don’t do support groups.

I don’t do support groups for the same reason I don’t do book clubs. I am a terrible member.

I was unable to join the support group for the first few years because the meeting date conflicted with our local free legal clinic, at which I volunteer. But in the start of this year, when I took a temporary medical leave from the clinic, I was free to attend the meeting.

It is undoubtedly a good support group. There are certainly wonderful reasons to attend it, starting with the other members and including the wide range of speakers they have. I was welcomed and made to feel part of the group right away.

So what was the problem?

The problem was I was once again the one at the table who wanted to kick her chair over with a clatter.

The night I went was a “let’s share our stories” night. That would have been great except for the two older men who sat there stolidly, arms folded, serving as Greek chorus. Someone would share his or her per­son­al medical journey with myeloma, and the chorus would bark out judgments. “You need to take XXX” or “You need to call XXX Medical Center as soon as you get home.” When the newly diagnosed patient sitting next to me expressed his fears and concerns about the disease, they both turned on him and snapped “you need to fire your doctor immediately.”

Ouch.

I told my husband when I got home that night that I had very mixed feelings. On the one hand, I appreciated that for the first time ever I was in a room full of people who all have multiple myeloma. We all spoke the same language. That was a revelation.

On the other hand, I was uncomfortable throughout the meeting. It took me the 45-minute drive home and rehashing the meeting with my husband before I could pinpoint what had so bothered me.

I was uncomfortable because of the Greek chorus’s lack of listening, truly listening, to the stories. Maybe because of my legal background, maybe because of years of volunteer work where listening is a huge part of the service, maybe because of my current job as a mediator, I disliked intensely that personal stories, sometimes painfully revealed, were so quickly dismissed. In my world, that is disrespect of the highest order and is so foreign to my personal style that it overrode the common bond of being in a room with a group of people who spoke the language of myeloma.

I attempted group one more time.  The Greek chorus was absent this time, but I also noticed something else. The newly diagnosed patient who had spoke of his fears was not there either.

He could have had a conflict. He could have been in the hospital or out of town.

Or he could have chosen not to go back after the reception he received the first time.

So I don’t do group. At least not that way. But that doesn’t mean I am without a support group.

I began this column in January of this year. My first one ran the very same day that my initial support group foray took place. Over the last 11 months, I have come to know and feel in print the friendship and support our Beacon community lends one another. Whether I am following Pat’s adventures with testosterone cream (admit it, we all read that one!) or reading a particularly poignant and heartfelt comment on my or another’s column, I am part of this connected, supportive myeloma community.

You’re my group. Like the support group I no longer attend, we too speak the same language, face the same issues, live in the same subdivision in Cancerland.

The difference is that when I read your comments, be it on my column or another, when I read my fellow columnists’ contributions, or when I respond to another column, I feel we are listening to one another. In our listening, we in turn honor each other’s journey with myeloma. That honor is what I did not find in the local support group, but find every time in this one.

Thanksgiving is almost upon us in the United States. For many, that means reflecting upon what one is thankful for. That’s easy: I’m thankful for the best support group ever, the one group in which I always feel welcome.