Filed under: Knit
I’ve gone to lupus support group meetings for nearly 17 years now. At first, it was because I was newly diagnosed with a disease that scared the bejabors out of me; gradually, it became because I wanted to comfort the newly diagnosed who were having the bejabors scared out of them, and to help them find the information they needed that I’d already sought out. You can handle anything if you know what it is, if you know others who have already dealt with it, and if they’re willing to be there for you. If you know you’re not alone.
Over the years, the membership has been fairly fluid, with a few old hands like me that keep coming. A number of others–well, it’s not very supportive to die off on us, you know? Stop it! And then there was the woman who came to one meeting (and thankfully one only) armed with glossy brochures with herbal remedies to sell us that she guaranteed would cure us. Cure us! She had lupus, so she knew what we were going through, she said. But if we placed sprigs of this particular expensively concocted green leafy thing with its pretty picture on this page, right between this particular toe and that toe for so many days, just so…
It was all I could do not to guffaw out loud, “And how many times has it cured *you*, lady!?” When the sales pitch got high pressured–where none of us had expected to be subjected to one at all in the first place–I simply changed the subject on her and told her that I cope with my illness by spinning and knitting for others. I quoted Norman Cousins about needing a creative outlet. There’s nothing like anticipating making someone happy, followed by the absolute high when they’re thrilled at finding out that you thought they were worth that effort of your time and thoughts and skills. And wow, look at this! (Scarf, sweater, hat, etc.) Cool!
Today’s was the first regular meeting I’d gotten to go to since my hospitalization in October. The tales I had to tell, to an audience that would appreciate it! The one young doctor who had decided I didn’t have lupus, that that part was all in my head. What the–Goodness, sir! Here, (I thought but didn’t say), let me teach you how to boot up a computer so you can access my longstanding records on the subject. There is a standard set of 11 criteria, of which having four can land you a positive diagnosis; I’ve had nine, ten depending on how you count it. After all these years, to still have a doctor doubt not only me but every doctor who’s seen me these last 17 years…
So. The meeting was about to start, and someone I didn’t quite recognize walked in and exclaimed, “Hi, Alison!” Pam?!! Her face changed by steroids, I hadn’t recognized my former neighbor.
We listened to a dentist who’d volunteered his time to talk to the group on dental issues. A good man. He finished, he left, and it was time for each of us to tell how we’d been doing. My chance was coming.
Pam had a lot to talk about; her lupus was new and a very raw experience in her life. She reminded us old hands of ourselves, back in the day; I do think we were able to help her a lot. Good. Then an Asian woman talked about her reliance on Chinese medicine and how important her herbs were to her…and yet I felt strongly that she was really asking permission or even for pressure to try Western medicine now, maybe to counteract pressure she was feeling from her family to keep with what they knew. Afterwards, out of her earshot, two of us were shaking our heads, with me going, that sounds like me when I had congestive heart failure! The friend I was talking to said, She sounded like me when I had kidney failure! We worried about her. We hoped she’d felt a good enough sense of connection to feel comfortable calling for support. I do believe we need to learn more about what her culture has to offer; I also believe in the Scientific Method, in studying and tracking results, and that when you need a doctor, go to the doctor!
I never did get my time to kvetch. I’m so glad; what earthly good would it have done? I’d arrived forgetting the whole point of my being there: to listen. To comfort. Not to badmouth overworked residents. To help and hope others get the care they need, without making them feel they’d failed along the way. (So, no, I didn’t criticize those Chinese herbs.)
I cast on this scarf at the beginning of the meeting, and got this far along before it ended. As most knitters will relate to, I kept up the eye contact with the speakers, asked more pertinent questions, stayed more engaged, as my hands kept busy instead of my getting antsy sitting there so long…
As for the glossy-brochure lady: after that one meeting, she learned how to spin and she joined my old spinning guild. Not only that, but she immediately ran for president of the guild, which nobody else wanted to be, so, hey! Be our guest, the members told her. While I was going, she took my advice about taking up a creative hobby? Really?!? MY hobby??!!!
Totally nonpsychodegradeable. Good for her. I still ain’t buyin’ no stinkin’ green sprigs for my toes.
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