Maybe someday I’ll post about the man from Mexico who was working on the grounds while the place was being torn down by half at a time and rebuilt.
But anyway. Today was a lupus group meeting at the local community hospital, and I chuckled as I pulled into the exact same parking spot near the door that I have somehow gotten every single time since the new seismically-correct hospital opened.
We meet in a conference room next to the cafeteria in the basement and this time the group decided, hey, let’s have a salad potluck and do lunch together.
There was a new person there, her first time. And that is the main reason I go to these: to show the newer/younger patients that you can have this disease a long time and life still goes on with it and it’s okay: no matter what it may throw at you, you are still you and the rest is just noise.
One of the things she wanted to know was how to know what to expect. The short answer is, you can’t. The long answer is, statistically, how you’re doing at five years out is how you’ll very likely be 20 years out. No organ involvement? Wonderful! She was particularly interested in the cardiac statistics, and someone who is a nurse answered but I didn’t hear what she said, so I didn’t say anything, not wanting to possibly repeat her.
But the percentage of lupus patients who show cardiac disease at autopsy is in the high-90’s percentile. 50% of those will never have known it. (And of course, then there are the occasional patients like the unnamed one a Stanford cardiologist was just shaking his head over to me: he’d had to do a quintuple bypass on her. At age 21.)
There was also one older member there with her first set of hearing aids, and she seemed discouraged with them at two weeks out. I told her it takes about three months for the brain to adjust to sounds it’s not used to hearing, that you get better over time at picking a voice out of background noise, that the pain at the unaccustomed volume–it’s called recruitment–does go away, but no, it’s not perfect and it’s not instantaneous. And that the adjustment time is longer if you’re rarely actually around much in the way of sound.
I asked her if hers had directional mics? She thought so, but didn’t know what that really meant.
It means the aids are picking up the person you’re facing and likely leaving out the people to the side. I explained about the consonants being higher pitched than vowels, making speech sound mumbly due to missing pieces.
I came away feeling like I had actually been able to be helpful, which is always a good thing.
But what struck me was how much sitting at two tables pushed together, everyone facing each other, a bit of food in hand, had made the atmosphere less formal. Had made people more comfortable speaking up about their personal lives, not just the lupus aspects of them. Had made the conversation a back-and-forth, give-and-take rather than the one turn for you, one turn for you, one for you, version of speaking that goes on at the regular meetings, had made it more a meeting of friends than merely patients, and I very much enjoyed today’s.
I gave the newcomer my contact info and blog addy. I wanted to make it clear: we’re all in this life thing together.