Keeping the Wolf at bay
Wednesday June 09th 2010, 11:17 pm
Filed under: Friends

First, a photo to show the difference between needlefelting, like Hilary‘s falcon, and felting; Diana made me the colorful turtle.

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.

10 Comments so far
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About 25 years ago I experienced some retinal damage. and my brain was having difficulty make sense of new pics. (If you look at the sidewalk and one eye tells you the curb is there and the other says it’s over here, where do you put your feet?) I was told that it would take 3 – 6 months for my brain to catch up with my altered vision, and it was suggested that watching tv allowed the brain to learn faster.
It helped to have someone tell me I wasn’t going to always be stuck where I was.
The next thing the woman said to me was, “How are you dealing with the fatigue?” Wow! How did she know? She said that your brain uses a lot of calories while it re-learns, and I needed to learn to be patient and gentle with myself.
There still are a lot of funny moments, like when I can read the first and last letter or two of a street name but not the letters in the middle, and my brain can fill it in with the most outrageous words! Or finding that if I’m looking for a street with a long name and the street sign has a short name, just keep going and don’t worry about reading it — and it works just fine.
I dunno if it’s exactly the same for hearing loss, but I’ll bet there are similarities.
Thank you for going to that group: we were not meant to all have to reinvent the wheel!
Carol in MA

Comment by Carol Telsey 06.10.10 @ 7:14 am

They look like they are getting along JUST fine :-}

Comment by Diana Troldahl 06.10.10 @ 8:33 am

Bless your heart for being so generous of your own experience!

It often is the little gestures that make the biggest impact, isn’t it? 🙂

Comment by Suzanne in Montreal 06.10.10 @ 11:24 am

How I would like to have my daughter meet you. You are such an inspiration to me.

Comment by Sherry in Idaho 06.10.10 @ 7:29 pm

Helping someone else through it makes one’s own work that much more bearable and, can I suggest it, enjoyable?

Comment by twinsetellen 06.10.10 @ 8:39 pm

You give so freely to so many… you are an inspiration.

Comment by Channon 06.11.10 @ 10:48 am

They are very lucky to have you there! It’s not just your experience, it’t the love that you convey it with.

Comment by karin maag-tanchak 06.11.10 @ 8:06 pm

I can only add to the other comments that I think one of your “reasons for being here” (I believe that we all have different ones) is to help and comfort people with new challenges to deal with. Comfort being the main ingredient we all need so badly. Thank you for giving it so freely and always being willing to share so much of yourself with us all.

Comment by Mary 06.14.10 @ 12:15 am

It can make all the difference in the world to have someone to ask who has experienced the condition. I remember standing, bewildered, at the family breakfast held for my aunt before her funeral service. Having had a stillbirth the year before, I was 8 mos. pregnant with my second baby. I had been diagnosed with gestational diabetes two days before and had absolutely no idea of what I should eat, or not eat, or if the order I ate foods was relevant. My uncle, my aunt’s ex-husband, with whom I had probably never exchanged 10 consecutive words, stepped up behind me and gently encouraged me to eat for my baby’s sake. I explained my quandry. He then took my plate and went down the buffet style table at my side, filling my plate and explaining why he was choosing some foods and not others. He then said that he had been a diabetic for many years and that it was not as scary as people made it out to be. I just needed to form a few new eating habits and both the baby and I would be fine. I was so glad that someone was there that day to say exactly those words to a very scared mom-to-be. And that baby, a lovely young lady, just turned 21!

Comment by Shirley 07.07.10 @ 8:45 am

I realized I need to explain the first sentence of my post. My aunt loved to host family meals and brunches and so, rather than holding the meal in her memory, my cousins stated that they were simply hosting her last brunch in her stead!

Comment by Shirley 07.07.10 @ 8:47 am

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