Disease finally pays off! ©
Last Saturday I was part of a focus group. I was contacted a few weeks ago by the Immune Deficiency Foundation (IDF), telling me that the manufacturer of the blood product (IgG) that I get wanted to have a focus group of people who are using/receiving this product. It would last 2-3 hours, we’d get snacks while there, a box lunch to go afterwards, mileage and $150. Was I interested?! Hell, you had me at ‘snacks’! Don’t let this out though, or everyone’s gonna be clamoring to find out how they can get CVID and collect these great dividends!
The focus group was held at a company who does focus groups as it’s business, out near the airport. There were 8 (I think) of us all together. While we were waiting to be taken to “the” room, and filling out the requisite paperwork, I asked, “So, is anyone else here CVID?” All but one of us were. The other was the mother of a 7 year old with multiple ID (immune deficiency, not Infectious Diseases for my medical readers) and autoimmune disorders. IF that doesn’t give you perspective that you’ve got to be soulless. Only two of us were male. The other man was a retired teacher, who I would say was in his 60s-70s.
The experience was very good for a variety of reasons: well, obviously extra cash at the holidays is never a bad thing! But also, it brings to mind the ‘ole shoe parable’. You know, the tale that starts outs, “I complained because I had no shoes, then I met a man with no feet…” There are times when I get pissy and whiney—I know, it’s hard to imagine! Meeting others who have a similar experience or life circumstance as you, helps give one perspective. I would guess that 5 of the other 7 have it worse off than I do. One young woman has to travel to two states away every month for her infusions. It had to do with insurance, her medical provider, and where she was on the “IgG list”. She spent most of the summer in the hospital because she couldn’t get her infusions and got too sick. How whacked is that?! We’re in a major city in the U.S. with major players in the medical arena. She’s force to go to BFE every month? Who knew there was a pecking order on the IgG list—even that an IgG list exists?
The focus group was about a new program that if we registered, we would be guaranteed our monthly treatments, regardless of change in medical provider or location. Not a monetary assistance program, but access to the blood.
Another aspect that was really good was meeting others with the disorder. I have a lot of HIV friends. There is a great supportive HIV community. I have the ID that doesn’t have a built in community. This has left me feeling isolated and a feeling of being on the outside—which is a recurrent theme in my life, but that’s whole series of posts in and of itself, which I won’t delve into. I’m the square peg in the round hole, once again. I have an immune deficiency, but not the ‘right one’, I get treatment usually reserved for cancer patients, but I don’t have cancer. It’s like those tests we took as kids, where you are shown a series of objects and have to select the one that doesn’t belong with the others. I’ve always been that one that doesn’t match with the rest.
The focus group reminded me of my stint at the Rehab Institute of Chicago Chronic Pain Center. Most of my ‘pain-mate’ co-horts were in worse shape than me. Or maybe not, but their pains were different, and maybe psychologically I needed to see them as worse than mine. In retrospect, I bet they did the same thing. We were a very motley crew that one would never intentionally put together, and if one did, one would not have expected us to get along. There was me—gay boy from the farm now in the city; blue collar factory worker; upper middle class suburban retired homemaker/mother; and a street wise woman, my age (40 at the time) from the “rough side of the tracks”, who was already a grandma of one with another on the way. Less polite circles would have called here “white trailer trash”. We had a shared/common unpleasant experience—chronic pain. When you’re in absolute agony (no hyperbole here), status, class and social standing don’t mean squat. We supported and held each other up.
I remember the week I went off the last of the narcs. I was a wreck—physically, mentally, emotionally. I was in withdrawal (and didn’t know it at the time that that’s what was going on with me—that’s one thing they failed to tell me). I’d had a sleepless 3 nights in a row, not only sleepless, but totally wired and thinking I was losing my sanity (what was left of it). I walked in that morning after the third night knowing I looked like absolute shit—again—no hyperbole. J (the suburban homemaker) looked at me and said, “I’m not going to ask you how you are today, I can tell my looking at you, you’re not doing well today.” Then she stood up and outstretched her arms to give me a hug.
While loved ones can empathize with what you’re going through, only someone who’s either walked or is walking that same road truly knows the hell you are living, and what an effort it is some days to literally drag your ass out of the bed. Sometimes it’s that mis-fitted ‘motley crew that’s needed to, as Jackson Browne sings it in “Your Bright Baby Blues”, from THE PRETENDER album (one of the all time best rock albums)
: Take my hand and lead me
To the hole in your garden wall
And pull me through
©wtf/rle (with the exception of the Jackson Browne excerpt)