Sunday, November 20, 2011

My trip to St. Louis, as captured in napkins

I hadn't flown in nearly 30 years and when I flew to St. Louis for speaker training for the Gilenya Guide Network, I saved the napkin from the first leg of the flight.

I had forgotten all about my napkin collection I'd had as a child. I wonder if it would be worth anything now if I had saved it? I collected a scrapbook full of napkins from trips my parents took us on. Every flight, every restaurant. It was a cool way to remember the fun times.

But I parted with the collection at age 12 when we moved aboard the boat and never gave it another thought until 11/11/11 when I was flying from Jacksonville, FL to St. Louis, MO. I got 2 napkins with my drink (I'm sure, quite by accident) and so I scribbled the date and flight on the white part of the extra one to save as a token from my trip.

Something slowly dawned on me. The spark that was the fire. I remembered my collection from my youth suddenly and realized it would be a great way for me to chronicle my experience as a Gilenya Guide.

For those of you who don't know, there are events happening across the country where MSers and their families, friends and caregivers can go to learn all about Gilenya and ask questions of the doctor who gives the presentation. Many of these events will feature one of the real life patients who have been on Gilenya and have been invited to travel and share their stories. We are trying to spread the message of empowerment. "Take control of your own MS and be your own advocate." is pretty much what I tell people.

So this is going to be quite an adventure for me. And I'm going to bring you along one napkin at a time.

I will keep blogging my usual stuff, but when I go on a trip I'll be sure to post my napkin pics. :)

Here are the ones I have so far -- in chronological order.

I was terrified. My poor sister, who accompanied me, probably still has bruises on her forearm from my white-knuckled grip.

Second flight, I was a wee bit more relaxed but not totally. I did get to see that St. Louis looked lovely in her sequined evening gown and jewels -- or so it appeared from the night sky.

At introductions I was so nervous all I could hear was my own heart pounding in my ears. I told them I am so shy about public speaking that I can't even talk to my own family at Thanksgiving dinner. I finally got going, describing my MS journey and by the end I was recounting how I used to have to use canes or a walker. But then I started crying. Everyone clapped. Someone brought me napkins to dry my eyes. Naturally, I kept one.

Sunday night we were done with training but couldn't get a flight out early enough so we spent an extra night. We wanted some of that famous BBQ we'd heard so much about. We checked to see if Pappy's was open (our driver had recommended it) but alas it closed at 4pm. Someone else said the Brewhouse, located in the hotel, had awesome BBQ. This wasn't an exaggeration. We had the sampler platter. mmmmm

Note: Susan K. we tried to find you when we found out Pappy's was closed but apparently I never got your number. Duh. Sorry!

Monday morning I was back to having pre-flight jitters. I had already learned that walking through airports with an overstuffed carry-on and leaning to compensate for it while using a cane is awkward and tiring. I never have to use my cane day-to-day but decided to take it for the extra walking involved in travel.

A Delta ticket agent saw me with the cane and asked if I wanted to pre-board and she offered me a wheelchair ride down the jetway (see Anne? I remembered the word. :P) She ran me down the jetway (actually saying "vroom" as we took off with the chair). Then we got to the little ramp where the jetway telescopes and she said "little bump!" right before the wheels stopped dead and suddenly I flew through the air. I landed on my cane, crumpled in a heap. She freaked out and helped me up saying I must have been dragging my feet. Uh, no, sorry. Totally your fault, not mine. I now have a huge bruise, but all in all it was no big deal. 

The flight was otherwise beautiful and I was able to relax and channel my inner child who used to love flying and collected napkins with glee.

So that's how this new chapter of my life is shaping up so far.

More napkins to come as my first speaking engagement is scheduled for Athens, GA on 1/2/11. If you're in the area, come on out!


  1. So glad you got goeey butter cake. Next time look at some toasted ravioli too.

    Was Dr. Barry Singer one of the speakers? He's my neuro and I know he's on the committee.

  2. Hi Queenie, No there were no docs there. This was training for us patients on Gilenya to go around the country and speak about our experience to groups of MSers. When the events are held, there will be a doctor who goes and gives an overview using a slideshow presentation and then answers questions, but at this training it was all patients.


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