I ventured tonight to my very first brain tumor support group at UWMC, after a previous failed attempt. Amy and Steph met me there, and I was pretty nervous. I've been afraid that going to this support group, full of patients/survivors and family (or "caregivers" as they say), would freak me out. I feel like I'm settling into a decent little reality that does include my tumor but definitely does NOT focus on it, and I love the freedom in my thoughts and emotions of not thinking about my tumor and, frankly, being lucky enough to really not have to "deal" with it right now. (Knock on wood.) I don't want that to get sidetracked by scary stories and situations.
So tonight they open with mentioning that a certain regular attendee to the meetings won't make it tonight, as he just entered hospice. Not a good start. Then I introduced myself, along with 2 other 1st time attendees, and we got to our guest speaker. Apparently sometimes they have guest speakers, they talk for 30 minutes (of the alloted 2 hours), and they're on a topic that is relevant and that the group wants to hear about. Tonight's guest speaker talked about near-death experiences for the ENTIRE 2 hours. A lots of things death-related. And how she's not afraid to die. And what it will be like, based on her near-death experience. And how great my book is, it has won awards, would you like to buy it, I got a 6-figure advance from my publisher, etc.
While I thought the near-death topic was somewhat interesting and it didn't offend me, I was still a little uneasy/emotional. She then said some things to the tune of "we're all going to die, face it, blah blah blah blah, brain tumors or you could get hit by a bus, we're all dying, etc." and I couldn't handle it. I just started bawling. And instead of her doing whatever WOULD have been an appropriate reaction, she thought that I was crying due to some sort of "breakthrough" that I had related to her topic. No, lady, I was crying because you started shoving death in my face, like it's no big deal. Then it started this debate in the room (that probably had 25-30 people in it) about whether the topic she was discussing was appropriate, and whether she was being insensitive, and had things gone too far. She came by and was holding my hand, apologizing (sort of) in front of the group, which was quite embarrassing and not helpful at all. The post-discussion, which essentially started when I began crying, lasted probably 10 minutes, at least. And now I feel like I've disrupted their whole meeting and am embarrassed for crying in front of a room full of strangers (when nobody else was, especially).
After that, I was glad to hear that others in the room were uncomfortable and it wasn't just me. In fact one lady got up and left in the middle of it, saying "I want to leave" but very politely and subtly. And all of the regulars were saying that meetings aren't usually like this, speakers usually only talk for 30 minutes, the topics aren't like this, we usually laugh a lot, and they all seemed genuinely concerned about my well-being and comfort and want me to come back to future meetings. They all reiterated that the first year is the toughest and that it will get easier. I got hugs and phone numbers and emails.
I really think that I picked the worst possible meeting to start out at. But really, I didn't know if I was ready for this stuff, and I'm still not sure if I am. They warned me that next month's speaker is about some morbid topic, so it might be better to come back in December for their annual holiday party meeting. But I just don't know at this point. Tonight was tough. :(
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