Sunday, September 12, 2010

Hearts Dancing with Hope

Thanks to the amazing generosity of friends, Rick and I were once again able to attend Whittemore Peterson Institute's (WPI) "I Hope You Dance" gala this past Friday night.

This was the 6th year this event has been held in Reno, Nevada, and our second year we were blessed to attend. To all who made this dream possible for us, thank you!

For those of you who have no idea why I'm so excited about WPI in the first place, check out my previous posts on What's a Retrovirus? and this poem describing my experience with "Chronic Fatigue Syndrome" or better-named XMRV-Associated Neuro-immune Disease (XAND). Here's what WPI has to say both about themselves and about XMRV.

For those who wished they could attend and were unable due to health or distance, you were not forgotten! This chair was purchased in your honor by Kathryn Stephens and photo is courtesy of Angel Mac.

Our night started when Rick's mom came to pick up the kids for a long weekend with Grandma and Papa at the farm in Fallon and Rick got home, all happening just before 5 Friday night. I had washed my hair early in the day, knowing it would be an energy expense that would take several hours to recover from. Steam rollers went in pretty quickly (thankful;y my arms held out long enough to roll my hair without searing with so much pain I had to stop half way through - a casual upsweep in a pretty clippy was my backup plan) and I slipped on the comfy yet elegant dress provided by sweet Tink. I wasn't sure if I could get my broken toe into my calf-length leather boots but was pleasantly surprised that the swelling was down enough to make it relatively comfortable. Rick was in a western shirt, blue jeans, his favorite orange coyboy boots and a dashing black felt coyboy hat before loading my wheelchair into the car. We were out the door a little before 5:30 and to the Peppermill's Tuscany Ballroom by about 10 'til 6.

Patient advocates had worked hard to identify known patients in attendance and we were amazed when we walked up to the registration desk and mentioned our last name and they knew our first names without even looking us up, quickly assigning us to "table number one" where we were thrilled to be seated next to the architect of the WPI building on one side and Andrea Whittemore Goad's best friend since childhood on the other! As far as I know, all Facebook patients in attendance were carefully seated at one of three tables right up near the front.

But talking about our table is getting a little bit ahead of myself. Upon receiving our seating assignment, we walked through double doors into a large room with shiny orange tablecloths and floral centerpieces. A large table of Hors D'oeuvres was stationed in the center of the room, silent auction items were gracefully displaced in a loose circle of tables around that center station, open bars were hosted on each side of the room, and small shimmering orange draped tables were clustered in comfortable seating areas all around the room. There were young ladies walking through the gathering offering raffle tickets for the evening's grand prize of $1,000. (The woman who won the raffle at the end of the night very graciously walked up to Harvey Wittemore and immediately gifted the money right back to the institute).

Rick wheeled me over to the bar where we each got cranberry juices and I took my share of good-natured teasing for being a "double-fisted drinker" as I held both glasses so his hands were free to guide my chair. I believe there was also an old fashioned photo booth and some other attractions in that front room, but we soon spotted Dr. Judy Mikovitz and her husband David and chatted with them for a bit before getting a few light snacks and await dinner call.
We hadn't been sitting at the cocktail table for more than a few minutes before Heidi Dunlap Bauer (bottom left) walked over and introduced herself. We got to sit and chat for a while and then I looked up to see Lisa Jensen Kitzmiller (top left) who surprised me because they weren't thinking they were going to make it. I made introductions around and then walked up Etel Barborka and Terri Farley (top right, with I didn't get a chance to more than wave at Etel (we might have posed for a picture on her camera - I can't really remember) and about the same time I got to wave and Andrea Whittemore Goad and spotted Dr. Peterson across the room, but didn't get to actually talk to either of them. Heidi, Lisa, Terri and I snapped chatted (Rick got to visit with Lisa's husband and snap some pictures) then much too quickly the grand satin curtains were drawn back and we were invited to our tables. Here's a quick tour of the dinning room:

So here we are, seated next to the architect of the Whittemore Peterson Institute building, Dr. Judy's sitting at the next table over, and we are invited to the scrumptious buffet line and Karen Campbell ran right up and gave me a huge hug. I didn't get beyond salads, sushi and all-you-can-eat crab legs. Rick enjoyed the carving station, especially the prime rib with horseradish cream. He said the risotto was great too. I'm afraid I lost interest in "real" foods as desert plates started showing up at the table. I'd been too overwhelmed with the grandness of the entire affair to think to pull out my camera for the main courses, but Rick reminded me to snap pictures of the chocolate!

 While we were enjoying all this amazing food, a celebration was happening on stage as Annette and several honorees gave brief speeches. There were three professional videos shared on the big screens through the course of the evening (you can see me giving Andrea a hug from my wheelchair in one of them). Of course the highlight for us as patients was when Andrea Whittemore introduced Heidi Bauer and she shared her heartfelt passion for advocacy in hopes of keeping her 7-year-old triplets healthy for the future:

As the formal program came to a close everyone started to mingle. One more quick visit with Lisa and then I met Nelcha/Angle Mac (right) and got to reconnect with a sweet lady (left) I had previously met at the WPI community day. I'm sad to say I still don't know her name or have any contact information and she took off pretty quickly because the loud music was making her ill, but she is a 25-year survivor and someone I hope to get another chance to connect with, maybe at mutual patients at WPI in the future.

Then Karen Campbell came back over and we got to snap some pictures, visit a bit, and then she introduced me to wheelchair dancing, whirling me around as she used to do with patients at a nursing home where she volunteered before she got sick. It was too exhausting (and dizzying) for more than one song, but a fun experience that had me giggling!

On more quick visit with Heidi, another brief wave toward Andrea, a final goodbye to Dr. Judy and David, and another chat with Nelcha, and the magical evening was over. I couldn't believe it was 11pm when we got home! The night went by so fast, and though the music was at time too loud for comfort (some of us patients were ripping up paper napkins to stuff in our ears - should have gotten a picture of that! LOL), and of course the stimulation of so many people in and of itself is draining, it was a fairytale night and I felt like Cinderella, amazed that "midnight" came so quickly!
We crashed hard and fast and didn't even try to get out of bed all day yesterday. We did attempt church this morning, but I only lasted about half an hour before we had to turn around and come home (thanks to a severe asthma attack). I'm definitely "paying" for my big night out, but it's one of those special memories I'll treasure and well worth the energy expense. Thank you again, to everyone who made it possible for us to be part of this delightful celebration!

As I finish this post it seems only proper to mention that National Invisible Chronic Illness Awareness Week is just kicking off. The founder of this event, Lisa Copen, has been a dear personal friend of mine for 10 years or longer. I'm so amazed at her ongoing crusade to bring understanding, encouragement and support to all of us who live under the daily shadow of unseen, and typically misunderstood, pain and illnesses such as neuro-immune diseases and many more. Please take a moment to check out the daily  virtual conference broadcasts and so much more at now. :) You can even sign up for daily encouragement emails and, for a limited time, will receive an 80-page eBook offering 263 tips on living well with chronic pain/illness, compiled by 20 experts with personal experience. I was honored to to have 10 of my own tips on homeschooling as a chronically ill mom included in this comprehensive collection.


Kati Debelic said...

Great post Jennifer- I wonder if I can repost the link to your blog at XMRV global Action on Facebook? That would be great, thank you Kati

Patricia said...

Thank you so much for sharing all this, Jenni. It makes all of it more real to me reading your memories and seeing your photos and videos. I am so glad you went, and I am so grateful to you for sharing it.

Patricia Carter

Rachel said...

I'm glad it was a night to remember!

Jenni / Jennifer Saake a.k.a. InfertilityMom said...

Yes, feel free to post the link anywhere. :) I also welcome friend requests on facebook at though I may not be online much to approve friend invites for the next few days.

CFS Facts said...

Thanks for such a good description, saving me having to type it up myself. I'm just referring people to your post. :)
A good time was had by all.

Ness said...

Thankyou for sharing this experience. I live in Western Australia, so couldn't be there. I did get an invitation and would have loved to have been there, but there was just no way I could. This was the next best thing, makes me feel like I was there. I especially love the inclusion of dessert photos!
thanks again and take care, ness

Lori said...

So glad you were able to go....always keeping you in prayers!!!!!