Given the fact that my favorite thing in the world is just sitting and talking or sleeping, it doesn’t make much sense that the highlight of my year is a four day conference that I spend the majority of each day on my feet, running around, making things happen. I *do* spend plenty of time talking, but there is so much activity that I sometimes wonder, is this really me? Is this the same girl who loves trying to break her record for how long she can sleep?
I’m a volunteer every year, so my #DysConf experience is very different than the average guests’. For me, #DysConf is non-stop. It pushes me to my limits physically, intellectually and emotionally. I usually spend at least a week recovering, which is why my recap takes a little while. (Forgive me!)
But even though I’m tired and sweaty and sore throughout those four days (and days afterwards), I love every minute. I love handing out badges and folders and goodie bags to people checking in. I love posting pictures to Dysautonomia International’s social media. I love helping run the teens program and being one of the first fellow POTSies first time guests meet. I love the Photo Booth at Karaoke Night. I love everything about it—because for four days, everyone gets me. Everyone can see in my eyes when I’m fatigued and they understand it. If I tell someone I *need* a 15 minute break to lay down, they know I’ve reached my limit and I’m not dodging responsibility—I really just need a rest.
I love this weekend because it’s the anniversary of when I was first diagnosed—when I jumped into this world feet first, and I finally had a support system that recognized, “Hey. You weren’t faking or exaggerating anything AT ALL.”
I love this weekend because not only do I get to be myself, I get to be more than myself. I get to help others in the same way that someone helped me a few years ago.
So every year, let’s do this. I can convince my body to keep going, going for #DysConf.
I arrived at #DysConf around 10 am on Friday. The hotel was just regaining power after a horrible car accident had knocked out the power in the area and blown a transformer. Tysons Corner is a CRAZY place for traffic (and one I’d avoid at all costs except two of my doctors are located in the heart of it) but thankfully things were lightening up by the time I got there.
The workroom for volunteers was full of boxes and desks and was the only legitimately cold/nice room in the conference area of the hotel (well, to me, at least. I’m overly sensitive to heat and sweat like a maniac.)
I got to work right away on stuffing folders with some other volunteers then moved over to loading flash drives with the PowerPoint presentations. (Yes, that’s done manually!) Katie, her mom, Emily and I loaded 600 flash drives using as many computers as we could find. (Katie had three, I had three, Emily was using her tablet.) Somehow we managed it within a couple of hours.
Every time a new volunteer showed up, we all got into a frenzy because it’s usually the same gang that signs up every year—over the weekend we morph into a hyper supportive family and it’s so good to see familiar faces.
And I can’t even tell you how happy we were when Elyse showed up—she’s the only person who could motivate me to take a spin class.
Katie and I took a little time to cool down after setting up flash drives and getting cups set up for the goodie bags. We checked out our hotel room—on the 24th floor!—and had some snacks before we prepared ourselves for conference check in.
Being on the top floor, we had a view of terrifying clouds making their way into the area which was nerve-racking as conference guests were supposed to be landing at the local airports and driving in from who knows how far away.
When we were setting up check-in in the lobby, the storms finally started to break out. The lobby we were in was an atrium and at times the sound of the rain on the roof overpowered our voices. We were reading Facebook status updates from friends who were on airplanes trying to land at Dulles but were being diverted to Richmond because of how nasty it was (shout out CeCe)—I think the airport actually shut down at one point.
We kept going though—checking in soaking wet conference guests, giving them their freshly assembled folders, name tags, lanyards and goodie bags. Kyla and I checked people in together and competed for who could find the name tags quickest at our table and since I’m not sure if she reads my blog, I’m going to say I won. (Ha! Take that, Kyla!)
Katie and I FaceTimed Shira before we started our teens programming—Shira couldn’t come to #DysConf this year because of her health—but she was holding a Sick Chicks birthday party at home in California, so we introduced our attendees to each other and said “I love you” a million times.
Around 7, Katie and I started the teens program together. My loud voice came in handy for corralling kiddos and getting their attention. We did some opening ice breakers and had snacks with them, mingling over popcorn, pretzels and Gatorade. Katie ran through the conference programming with them and we invited them to play games with us for a while and tried to help the shy ones break out of their shells—it went especially well at the Apples to Apples table. (But doesn’t it always with that game?)
I was running some other errands around the conference when Katherine finally showed up (she flew in from Boston after work—her flight was cancelled and we were afraid she wouldn’t get in until morning) and I lost my damn mind when I saw her. I hadn’t seen her since last conference (although we text preeeeetty constantly) so it was so. damn. good. to finally see her again. Katie, Katherine and I #squad hugged it out with her and then got anxious about seeing Daniel and waiting until we could FaceTime Shira some more.
We ordered a pizza and ate it on the floor of the staging room around 10 pm after Daniel FINALLY showed up—we’d been working ALL day and we were *READY* for dinner. My stomach hurt a bit afterwards (ugh) so I went up to bed early but I felt so much better when I took my evening meds and got to spend time with friends and looked over the schedule for the next day.
Everything hurt on Saturday morning. My body was so sore but we got up and ready to go.
#DysConf officially kicked off immediately after breakfast (which I wanted to stay at forever because there’s something about a buffet full of scrambled eggs and home fries that inspires me to never leave) and I was off in a storm trying to document everything for social media.
Every year I do social media for the conference and some years and some days I’m better than others. On Saturday morning there was tons of exciting stuff to check out—like an acupuncture session in the “Zen Room” which had sessions all weekend on things like yoga and meditation… and needles in your skin. People were loving it though and tried to convince me to stay when I popped my head in. (No thanks, just the idea of it made me tachy.)
Lunch was super fancy—we did an Awards Luncheon this year rather than the Awards Dinner like we did in the past. My friends and I grabbed a table up front so I could grab pictures (and also just so we could enjoy the show.)
Dysautonomia International celebrated its Five Year Anniversary and we showed a video that practically put me in tears. Ellen and Lauren handed out the awards which also warmed my sometimes-cold heart all toasty. Everyone who volunteers and puts their heart into dysautonomia research and advancement is such a superior class of human (in my humble opinion)—Erin and Taylor won Volunteers of the Year (they put on the Race to Beat POTS I went to!), Dr. Goodman won Physician of the Year and Irina won the Amelia Moore Sparkle Award which is so well deserved. Irina does *so* much thankless work, writes up so many explanations on the Dysautonomia International Facebook page and website and makes difficult to understand information accessible to everyone. She’s absolutely BRILLIANT. (#fangirl)
In the time between lunch and the next set of sessions, I practiced for my presentation on Hope and Recovery, specifically aimed at teenagers. Unfortunately, I was crazy unfocused because I’d been running around all before lunch and now I was a little foggy after eating.
Katherine and I were two of the presenters for Hope & Recovery along with two absolutely lovely ladies, Tess and Emily, who knocked it out of the park with their speeches. I was insanely proud of all of them and so happy to be in their company, and was happy that we all got to deliver authentic messages that weren’t overly saccharine—just 100% true to our experiences. (This includes Katherine, in case I wasn’t being clear. Everyone is just amazing.)
Afterwards, I literally ran to my next room where I co-presented on POTS in College with Jenny. This one got a *little* dicey. Our presentation was more in a panel format and we wanted a lot of participation from our audience—but it got a little out of hand here and there. There were disagreements about what colleges are and aren’t legally liable to do; what types of things “all” people with dysautonomia experience, etc., but I felt like we handled it well and that was confirmed to me a half dozen times by kind people who came up to me after the presentation who said we did great. (Thank you, kind people! I wish I could buy you an ice cream!)
Again, I had to run to leave that presentation and go straight to another room so I could introduce one of Dr. Glen Cook’s presentations. He’s been on the Medical Advisory Board for a year but I hadn’t gotten the chance to formally meet him yet. He’s super kind and I would have loved to talk to him longer.
After taking some pictures, I sat in on one of Dr. Opie-Moran’s sessions about relationships and chronic illness. I’ve gotten to know her at conferences over the last few years and can’t say enough nice things about her—she’s absolutely lovely and makes me feel calmer just in her presence. (She’s a psychologist, so that works really well for her.) I try to attend as many of her sessions as possible and take her ideas back to my therapist (I’m convinced they would work in the same practice if Dr. Opie-Moran didn’t live in the UK) and loved her ideas and the way she did her slides. (She always throws some jokes in.)
Quick shout out to Crista who rescued me that afternoon as well—I can’t imagine how bad I looked but she saw me, forced me to sit and got me two water bottles and a bunch of salty snacks. Bless you.
Afternoon sessions closed up for the day and I got to talk to my Mom who was there for the day and lots of guests from the conference. I got to meet some of my blog readers (Hi Mindy and Lindsey!!!!!) and I hugged way more people than probably wanted to be hugged by me. (I’m very sorry, but that’s just how I get at #DysConf.)
Katie, Katherine, Daniel and I left the hotel and grabbed dinner at Silver Diner. We shared a disgustingly delicious plate of cheese fries (yummm) and I ate pancakes before we trekked it back for the evening.
We had to split ways for the night—we had some different responsibilities and Katie wasn’t feeling well—I mingled and talked more before hitting the dessert reception/karaoke party. I didn’t sing (well, not until Bohemian Rhapsody at the very end of the night with a huge group)—but I did take TON of pictures with lots of people.
I woke up the same way on Day 3—incredibly sore body, hungry for the breakfast buffet, but determined to get going.
Before I hit up the opening session, I got to try a free paraffin wax treatment on my hand which was awesome—it was SO hot but my hand that got the treatment (which are already pretty soft) felt even smoother even a week later it feels softer than the other.
I loved so many of the sessions of Sunday—there was an autonomic testing demonstration (the person who volunteered was so brave); Dr. Chemali, phenomenal neurologist and also an incredible pianist!, gave a session on the autonomic nervous system and music; and the phenomenal and perfect Elyse Schwartz gave teenagers much needed coping skills for life as only she can.
I was definitely slowing down by lunch and even though the conference was almost technically over, we still had tons to do.
I went in for the closing Q&A with the expert panel which is my favorite session of the conference. Sometimes the doctors like to trail off with hyper-detailed information that goes over most everyone’s heads, but what I love most is when they disagree with each other (yes! Conflict!) OR when I get advice or a new motto I didn’t know I needed. This year I got a couple new mottos–
“Exercise by itself is not a sufficient treatment. It’s very important to get to the root of the problem.” -Dr. Kamal Chemali #dysconf
— shannon linford (@shannern) July 16, 2017
— shannon linford (@shannern) July 16, 2017
— shannon linford (@shannern) July 16, 2017
Immediately following the Q&A, I said goodbye to tons of people who were leaving—I got to connect with so many people this year that warmed my heart in so many ways. I’m so grateful that a lot of them live in Northern Virginia so I’ll get to see them again before next year. (There are so many people that I’m forgetting to shout out to and I’m so sorry the names aren’t at the top of my head—but alas, still a week of brain fog exists.)
After hugs on hugs on hugs, I got to work on Lobby Day materials with Katherine (Queen of all things Lobby Day) and Katie. We made schedules for 150 people (the meetings had been updated by the congressional offices as early as that morning) and we got them knocked out right in the knick of time. (We also had to make use of the printers at the front desk because they weren’t working in the business center. Whew. Good times when someone asked me to check them in at the hotel.)
I met my team at Lobby Day training that night—we got to learn some of the in’s and out’s of what to ask for, how to ask it, and how to leave an impression with members of congress—(pro tip: personal stories are what matter!!)
I love #DysConf.
I was diagnosed mere weeks before the first #DysConf in 2013 and the hotel it was held in was down the road from the house we lived in at the time. Even though I got sick at the first conference and couldn’t stay (the air conditioning didn’t work and I couldn’t handle it), #DysConf has been my lifeline from that point—it connects me to my community and reminds me why I need to do some things that are scary, like call my members of Congress and push for them to advocate for me, and reminds me why I need to take care of myself in ways I really don’t want to, like exercise. (Yeah, it always come back to that one, doesn’t it?)
#DysConf is a testament to not having to be alone anymore. It’s how I meet and connect to people who support me and people I can support because I have grown stronger.