#1... I met one of the most courageous people I've ever known.

#2 ... It was my first "real life" meeting with a SWC on-line friend.

The first time I saw her I couldn't really see "her". All I could see was a woman's rounded hunched over back, with her eyes glued to the floor watching the feet of the people de-planing. She was looking for her San Francisco-bound SWC friend scheduled to arrive on that flight from Anchorage.

Joanie was staring at the floor watching people's feet because I wore running shoes with very bright shoe laces with each shoe lace being a different color. We were meeting in "real life" for the first time. Neither one of us had met an on-line friend in real life before.

It was an immediate "connection". Joanie arrived from New York a couple of hours ahead of me so she had everything checked out at the airport for us. She knew where my luggage would arrive and most importantly she knew where we were supposed to go to get the airport shuttle to our host's home. She had a cart waiting to carry all our luggage.

We were laughing and giggling almost immediately. I kept forgetting that Joanie was deaf...... deaf as in she heard no sound whatsoever. No residual hearing at all. I talk ....... a lot.....

Joanie had not been to California before. Since I was California born and raised I felt it was my responsibility to tell her all about what we were seeing during our shuttle ride. Since she couldn't hear me and I know no sign language I was writing notes to her. I swear that I gently "tapped" her to get her attention. Joanie always retold the story that I was "hitting" her all the time during our ride... it was always an on-going discussion with lots of giggles.

I don't think Joanie knew about all the times that I would forget she was deaf and launch into one of my descriptions which eventually I would realize was really only a monologue.

We finally met our host, SWC's Bob Elkins, at the Novato Denny's where the shuttle dropped us off. Joanie and Bob could do a reasonably good job communicating since Bob knew some sign language. So they were immediately busy "talking". Who knows what kind of stories Joanie was telling Bob about our shuttle ride from the airport ?

Bob and Ling filled their house to the brim with SWC people that weekend for the ALDA San Francisco convention. Joanie and I struggled communicating. Bob brought out his TTY for me to type on to Joanie...... we were talking! People were impatient taking the extra time it took to talk with Joanie. But still she kept persisting in finding ways to communicate. She was a "people" person who needed people and relationships in her life to make her life "live."

Joanie, the only NF2 person in our group, wanted to attend all the NF2 seminars at the convention. Everyone, except Joanie, had gotten involved in conversations that morning and lost track of the time. Joanie finally got our attention and via words and facial expressions made us aware of the NF2 meeting schedule at the convention. Then she managed to get us on the road toward the ALDA Convention.

Bob, driver of the small pickup, and Joanie piled into the front seat. Ling and I took up the back jump seat positions. It's a lifetime memory riding down the freeway with Bob and Joanie in the front seat... their arms and hands silently flailing back and forth in conversation as the pick-up sped along the freeway at +65 mph.

But the lifetime memory became even more vivid when we went across the six lane Golden Gate Bridge.... there's no center divider to the road........ Just double yellow lines straight across the bridge. California traffic NEVER slows down.... even on a bridge with six lanes and no center divider.

Bob doesn't slow down either and he drives in the center lane! AND at the same time there's Bob and Joanie signing. Ling is in the jump seat, directly behind Bob, tapping him on the shoulder and giving him the hand sign indicating he should move over toward the right lanes.

So there we are speeding at California driver speed down the Golden Gate bridge, Bob and Joanie signing back and forth in the front seat and Ling in the back seat trying to get Bob to move the pick-up over one lane to the right... with the windows wide open and the radio blasting away.

For the record Bob never did move over even one lane. He and Joanie never did stop signing, we arrived at the convention in time for Joanie to attend her NF2 seminar and we were alive to laugh about it for years to come.

After meeting Joanie in real life I was to ask myself many times how would I ever live my life if I had THAT disease? Joanie could be cranky, difficult, hypersensitive and sometimes critical. Silently I would frequently wonder.... what kind of person would I be living with NF2?

Joanie and I stayed in touch via the computer and sometimes phone calls during hospitalizations. Some conversations were deadly serious and others just plain silly.

Joanie lived life visiting many of the on line friends she'd made for as long as she could. I remember her attending Star Wars conventions and meeting with Star Wars people from on line. New Zealand and Oklahoma were also on her itinerary. The computer and life on line made life more liveable for Joanie.

Joanie was humorous, persistent, kind, spiritual, realistic, scared, depressed. Joanie was wonderful. She'll be missed in our jaded world. The world doesn't have enough Joanies. We need to do all we can to nurture, help and aid a "Joanie" when we meet one. Joanie would like that.

NF2 took all it could from Joanie and she continued to live. Joanie gave NF2 all she could give and she died.

I've written "shoelaces" on my shopping list. I now realize that when I had problems finding just the right bright kind of colors for my shoelaces I gave up my "peculiar" easy-to-identify shoelaces.

I need to get them laces back in my shoes.

--- Sandy Umlauf