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| Corina, Me, Nina, and Katherine at Busboys and Poets |
We made a most amazing trip this summer over the last weekend of May/first weekend of June. We traveled to Washington, DC to meet fellow dysautonomians!
In the years since I've been sick we have mostly traveled for medical appointments.
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| Corina and John Realizing a Dream: Traveling to America (Photo Courtesy of Katherine) |
In 2002, I first logged on to a support forum for dysautonomia. For many years, I spent time every day on one of two forums for dysautonomia, where I learned, shared, received support, and grew in friendship with other women.
I am no longer active in a forum, but I have formed close friendships with several women--four of whom I met that very first year I logged on and with whom I am still close. Most of us with chronic illness now cannot imagine living in a world without the internet, because we have formed real, true, lasting friendships with others who 'get it'.
I don't know another way to put it than stating that being a part of an online community of others with dysautonomia changed my life in profound ways. I don't know how I would have endured these years of illness without the strength, compassion, empathy, support, love, caring, humor and incredible knowledge of the people I have met along the way.
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| On Our Way to Whole Foods! It's 95 Degrees, so I am Stylin' in my New Cooling Vest |
One of the women I met over a decade ago is Corina, who is from the Netherlands.
When she told me that she and her husband John would be coming to America for a visit, and making a stop in Washington, DC, I knew that I was going to find a way to meet her no matter what.
Corina has been so sick with POTS at times that she has used a reclining electric wheelchair, had an elevator in her house, and been mostly bed bound. Due to a new medication, she was able to realize her lifelong dream of coming to America and touring several national parks on the West Coast in an RV!
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| A Little Tired and a Little Overwhelmed by Whole Foods! But SO Happy to Be TOGETHER! |
She and I have shared so much over the past decade--from our struggles to find balance in our lives to living life to the fullest to our love of tennis and books. Corina is one of the brightest spirits, kindest souls and loving people I know.
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| Scott's Circle: View From Our Hotel Room |
When we booked our reservations at the Marriott Embassy Row so that we could be at the same hotel as Corina and John, I really thought the most I would be able to do was ride down with Mom on Friday afternoon, rest, meet Corina briefly in our hotel room, have lunch together on Saturday, rest, and head home on Sunday.
I never imagined that our trip would exceed these expectations by leaps and bounds!
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| From Our Hotel Room |
It was so fun to be in the city!
We arrived on Friday afternoon and I took a long nap (and so did Corina!).
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| Corina, John, and Me at Whole Foods |
As soon as we met we were hugging. And hugging. And hugging. While we walked to Whole Foods for dinner on Friday night, Corina and I held hands the whole time! :) John took over pushing the wheelchair (and now I tease Mom that he is a much better driver!).
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| Mom, Me and Corina on the way to Whole Foods |
We didn't have plans set for Friday night, which wasn't the best move on my part, so we took Corina and John on a quintessential American experience: a trip to Whole Foods for dinner (something we had never done before either). This wasn't the best choice for two people who become fatigued by overstimulation, but it definitely was an experience, and all we really cared about was being together.
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| Corina and Katherine Taking in the Sights (Photo Courtesy of Corina) |
While we rested at the hotel on Saturday until lunch time, Corina, John and another dysautonomia friend, Katherine, did some sightseeing. This just happened to be the hottest weekend of the year--95 degrees in the city!
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| Nina and Corina Corina Gave Each of Us a Framed Photograph of Hers |
A high school friend helped me choose a fun and funky restaurant in the city for Corina, John, Mom, Katherine, Nina and her fiancé, Rich, to meet for lunch; a funky and fun place called Busboys and Poets.
Corina, Katherine, Nina and I all met in those early years on the forums, before there were very many members and we were able to form close bonds quickly.
Corina, Katherine and Nina have all been of deep service to the Dysautonomia community over the years, serving as moderators on the forum and more. We really would not be here as friends if Nina hadn't given so much of her time and energy to keeping the forum going.
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| Me and Katherine: We've Shared Out Hearts Over the Years! |
Katherine and I were able to meet when Mom and I traveled to Chincoteague, and hope we will visit each other again.
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| Such a Sweet Couple! We Loved Meeting John too! |
Busboys and Poets was the perfect place for such a happy, joyful meeting.
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| At Busboys and Poets |
Of course, I was the first member of the group to poop out. (Ironically, I am the youngest but sickest of the four of us.) But I was SO overjoyed to be able to go OUT to lunch at a bustling restaurant for a couple of hours with this group of people.
Everyone was, in person, just as they had seemed online. Katherine is quiet, reserved, thoughtful, shy, kind and gentle. Nina is boisterous, silly, outgoing, and generous. Corina is sweet, sincere, curious, and caring. (These women are so many more wonderful things to me, but the list is too long!).
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| Super Fun Food and A Cool Independent Bookstore |
After lunch, Nina and Rich hit the road to head home as did Katherine. The three of them came into the city just for the day. Mom, Corina, John and I headed back to the hotel to rest.
Corina, John, Mom and I were able to meet up again for dinner that evening in the hotel restaurant, Nage.
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| Dysautonomia Friends |
The weekend was remarkable, life-affirming, beautiful and wonderful on so many levels.
To finally meet Corina in person, see Katherine again, and meet Nina; to be able to have all of us together at one place; to spend one on one time with Corina and John twice over the weekend; to feel well enough to make the trip and enjoy it; to go out to eat; to be in Washington, DC, combined to make a weekend I will never forget.
Most special of all was being with these wonderful women that I have communicated with 'virtually' for over a decade and discovering that our friendships are as real and easy and authentic in person as they felt online. I already knew this about Katherine, because she and I had met. But now I know it about Corina and Nina.
Corina and I are lifelong fiends, I just know it. And I hope this will not be the only time we meet in person.
Every day, my friends with dysautonomia are in my heart. And hardly a day passes that I do not have contact in some way--big or small--with someone I've met along the way.
I love you, Corina!
Blessings,
Emily
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