MOEBIUS1.ORG

MOEBIUS MUSINGS
                              by Kevin Smant

Everyone---wow, here it is August already.  I guess time really _does_ go faster when you get older.  And it’s a very hot and humid August right now where I live…dog days indeed.

For those of you new to this e-mail list, welcome.  I am a 41 year old male with Moebius Syndrome.  I teach in both the Department of History and in the School of Education here at Indiana University South Bend.  And occasionally, when something strikes me, I like to write about it.  This month I thought I’d write about a cat, and an e-mail from a stranger.  (sounds like one of those paperback novels you can pick up at the grocery store!)

I never tire of writing about my good buddy Goldie the cat, one of the 3 cats who live with me.  He’s quite the little stinker, as I always affectionately tell him.  And yes, he’s a he---when I first got him as a kitten, his original owner just assumed it was a female.  Hence the name…only to have the vet a short time later tell me that, well, she’s not a she after all.  Ah well!!  Anyway, he’s a golden-brown and white-striped tabby cat, a short-hair.  He’s very curious and very intelligent.  When he wants water, he walks up to his water dish and sits down.  When it’s time to get his little dish of moist cat food in the evening, he jumps on top of my television and meows at me.  He loves to be petted, so when I’m sitting in my favorite chair watching the ballgame or something, he makes sure to carve out some space for himself and lay right against me.  He’s sure to get attention then. 

When I take out the trash or am otherwise doing like chores, he loves to go outside with me and do some exploring.  Occasionally he’ll disappear for a short time; usually that means he’s nosing around behind a bush or is sitting by a tree, watching the birds.  I’ll go back inside, though, even when I don’t know exactly where he is; I leave the front door slightly ajar, and despite the fact that I live in an apartment complex, with doors looking exactly like mine to the left and to the right of me, he always knows exactly where home is.  (Don’t worry, by the way---I never leave home unless he’s inside, and I never let him stay out much over half an hour.  It can be a dangerous world out there.)

Goldie gets scared occasionally.  Cars come through the parking lot with stereos blaring; or the garbagemen come with their big, whining truck and bang the dumpsters around.  At those times, Goldie’s suddenly not so interested in being outside.  If I’m standing outside then, he’ll come and wind himself through my legs, and then stand right behind me.  I guess he thinks I can protect him!

But the next day or the next week, he’s right back outside again.  Nothing slows him down or frightens him for long.

Which then leads me to the e-mail I received from a stranger a while back.  Don’t get me wrong---there was nothing spooky or bad about it.  Rather, it came from a young person, about 15 years old, from another country (from Europe, in fact).  The person read something of mine on the moebius1.org website, and just wanted to be in contact with someone else with Moebius and to talk about some things.  (I wrote back but, sadly, I haven’t heard anything from the person since.)

What struck me, though, was this:  the person was having a little trouble in learning how to drive, and it sounded like the non-Moebius people around him were not, perhaps, being very encouraging about it.  I note that the driving issue seems to come up for Moebius people occasionally, and that, sadly, one has the feeling that driving instructors and perhaps other officials—with little knowledge, naturally, about Moebius—sometimes, maybe without intending it, can be discouraging towards Moebius persons when it comes to driving.  As if they wish to say, well, gosh, you have Moebius, maybe you shouldn’t even try to do this.

I don’t know how often this happens.  I know however that it can happen.  When I was in graduate school at the University of Notre Dame, one of the tenured professors in my department tried to tell me basically that, due to my Moebius, I would never be able to teach; that instead I should go into archival training and just content myself with working in a library or archive.  I’m glad I didn’t take that advice.

But this is what can happen.  Persons---often well-meaning—will sometimes encourage those with Moebius, or anybody with any kind of handicap, not to do this or that; because (they think) you might fail and be hurt or devastated.  To a degree that was what the great story about a young Moebius girl, called ANNILEA, was all about.

The problem, of course, is that if you don’t try, you’ll never succeed.  If you don’t try, you’ll never get anywhere.  If you never _let_ someone try, that person won’t in the end be happy.  That’s where the example of Goldie the cat comes in.  Don’t get me wrong—he’s careful.  He doesn’t run out in the middle of the parking lot and make himself a target for cars.  And if it’s too cold, he won’t go out.  And he avoids those loud garbagemen (er, sorry---“sanitation engineers”). :+)  But he never lets it all faze him for long.  He keeps going out, exploring, looking for that elusive Tweety Bird…and he has a richer life because of it.

This is something that we all need to keep in mind, too.  As persons with Moebius Syndrome, we need to keep exploring, and to not let anything keep us inside for too long.  For you parents of children with Moebius, be on the lookout for those in your child’s life who---again, I stress, probably unintentionally and with the best of motives---perhaps are holding your child back a bit, who are assuming that a child with a “syndrome” has to leave certain parts of life unexplored.  I think I’ll add a word to a famous saying:  the unexamined, and unexplored, life isn’t worth living.  And don’t you parents hold your child back when you shouldn’t!  One of the best things my parents did for me was to encourage me to believe, because it was true, that I was like the other kids and could do what they could do. 

Easier said than done sometimes, I know.  But it’s like what one of the great philosophers of all time, Bill Watterson, said once---what?  Who is he, you say?  Why, he wrote the comic strip “Calvin and Hobbes.”  In the last strip he did, before his retirement, Watterson has the little boy Calvin say to his friend Hobbes---“C’mon!  Let’s go exploring!!”

Not a bad principle to live by.  Whoops…I think Goldie’s jumping on the TV again.  Must be close to time to eat.  Have a great rest-of-the-summer, everyone!* **

Kevin S.

*remember---to ask questions of all of the people on this list, just hit “reply to all” to this message.  Feel free to ask anything.

**and if you’re interested in reading more “musings”, as well as reading all kinds of other cool stuff, visit the great folks at

http://www.moebius1.org  and also see http://www.moebiussyndrome.com  for yet more cool stuff and great info.