The joy of a shared experience

My wife Nina (aka the Supermodel) had a fun time Saturday.

How she had a fun time … well, that was different from what you might expect.  She didn’t lounge all day in bed or spend it at a day spa.  She didn’t go shopping.  She didn’t hit the local 36-flavors ice cream parlor and eat herself into a sugar coma.  She didn’t spend a single cent, unless you count grabbing dinner at a burger joint (and I ran my ATM card for that).  She didn’t do any of the typical “fun” things that middle-class (or lower) Americans do when they want to have fun.

Nope, Nina went to a support group.

No joke.  The Charcot-Marie-Tooth Association (CMTA) has local or semi-local support groups that meet locally.  Nina has suffered from CMT, a genetic condition where the nerve endings in her extremities slowly degenerate, since she was a child, though it wasn’t correctly diagnosed until a couple of years ago.  Since then, she’s studied up on the disease, and joined an online support group through Yahoo.  But there were no in-person support groups meeting anywhere closer to Stockton than San Mateo, about 100 miles (160 km) away.

Until early this year.  The San Mateo group had gotten big enough, and had people coming from far away enough, that they decided to split in three — the original San Mateo chapter (covering from San Francisco to San Jose), an East Bay (Oakland/Pleasanton/Fremont) group, and a Sacramento group to reach the Sacramento/San Joaquin Valley.  Sacramento is half the distance from Stockton that San Mateo is, and they were only planning to meet quarterly, so it was doable for us, and I knew I could find something in the area to occupy myself and the kids.  Nina contacted the group organizer, a young man named Rashid, who said the first meeting would be in March and he expected about 20 people.

He got about 60.  Needless to say, CMTA had found their market.

Last Saturday was the second meeting, which doubled as a potluck, so Nina made a triple batch of her zucchini quiche (trust me, it tastes better than it sounds).  Attendance was down to 25 this time, as it’s late June and a lot of people were on vacation (plus a heat wave had hit — people with CMT tend to be more sensitive to extreme temperatures, so I can’t blame anyone who decided to stay home and suck down the air-conditioning).  The guest speaker was from one of the big orthotics companies — a good choice for a group with a heavy investment in braces, walkers and the like.  He also did some free inspections, which paid off for Nina when he took a look at her ankle-foot orthotics (AFOs) and discovered that the plastic in them was quickly delaminating.  She’s going to request a prescription for a new (and hopefully sturdier) pair when she visits her neurologist on Thursday.

But neither the potluck, nor the speaker, nor the inspection, was the real highlight for her.  No, the best part was the people.

Remember, she had waited over 30 years before someone was finally able to pin the correct diagnosis on her problem.  Imagine how lonely that can be, with no idea what’s causing your suffering and no knowledge of anyone else in your situation.  Now not only get a label to slap on it, but one that links you to thousands of people who have been in the exact same situation you’re in (and are willing to share what they’ve learned, or hear what you’ve learned).  If you could bottle that combination of contact high, unspeakable relief and a soupcon of family reunion, you’d be an overnight millionaire.

I’ve had a taste of that a few times in my life, under less serious circumstances.  Back in 1996, when I was planning to become a foreign missionary, I went to a Candidate School for one missions organization, and for the first time in my life was around people with the same calling I felt.  I spent two weeks on a contact high with boundless energy, despite the fact that the conference was held in the middle of summer in Phoenix.  A few years later, I experienced a lesser version at my first meeting of SABR, an organization of serious baseball geeks (for a long time, I had wondered if I was the only one).  These are significant moments for me, as I’m not the most sociable character around — to be able to “plug into” a social situation and not end up physically and emotionally spent is rare, and I treasure those times.  For Nina, it’s easier but no less valuable.

Frederick Buechner once said that we seek three things in life: a self to be, other selves to love, and work to do.  Often the problem is that once we figure out the first, it can make it harder to do the second — we know who we are, but does anyone else fit that category?  In short, we’re looking to discover not just contact with others, but community — “unity with” them — and it’s not always easy.  To find common ground, especially after long years of searching, is a heady experience.

That same impulse — to find others who’ve gone through or are going through what we’re going through — is a large part of why the Incarnation is so important.  Jesus, Almighty God in a human body, was born of a woman just as we are (with one difference regarding His conception); grew up just as we do; learned, worked, sweated and slept just as we do; was tempted to sin just as we are (except He didn’t sin); was misunderstood and insulted just as we are; and died just as we someday will (barring divine intervention).  Jesus is the answer to the question, “what does God know about what I deal with?”  He is not watching us from a distance as the old song says — He has been where we are, and by His Spirit He is where we are right now, too.

And He is now in Heaven, just as we will be if we surrender our lives to Him.  The apostle Paul said that He went through all of this that “He might be the firstborn among many brothers” (Romans 8:29) — that He might be the first member of a new community, one where our Leader understands our situation because He’s been in it.  That is what the kingdom of God is, and that is what His church, the manifestation of His kingdom on earth is supposed to be.  When it succeeds at that, it’s a beautiful thing.

Of course, it doesn’t always succeed.  The next day, Nina went to the usual Sunday service she attends.  The morning’s speaker preached on suffering, and according to Nina it fell kind of flat.  She knows the speaker, see, and has reason to believe that he’s experienced less suffering in his entire life than she has in the last year.  Suffice to say that according to her, he used no illustrations from his own life.  In short, it’s not that he didn’t mean well — I’m sure he did — but he was speaking from the abstract, from theory, not from personal and shared experience.  Not from community.

Which meant that Nina found the same contrast Jesus’ hearers did after the Sermon on the Mount.  Scripture says that when He’d finished, “the crowds were amazed at his teaching, because he taught as one who had authority, and not as their teachers of the law” (Matthew 7:28-29).  Shared experience provides a loving legitimacy, because you know that the person has been there and can sympathize.  The lack of it means that they’re just teaching laws.  And laws can’t compete with love — never could, and never will.


2 Responses to The joy of a shared experience

  1. The joy of a shared experience « Ray Anselmo, Professional Outsider…

    I found your entry interesting so I’ve added a Trackback to it on my weblog :)…

  2. […] Saturday, while my supermodel wife Nina was meeting with her CMT support group, I took the kids over to the Sacramento Central Library.  We had thought about the zoo, but it was […]

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