#would love to make some local phriends

[as-everlasting-as-the-sun]

what it’s gonna feel like to me if dan or phil even vaguely glance in my direction at tit

[startwreck]

WizardWorld Chicago 2018

“I’ll never fly to a con.”

That was my self-imposed rule. See, I live in the Northeast US, so there are lots of major cities within driving/busing distance, and thus lots of cons, and other fandom-adjacent events, happen within a reasonable distance of me. (I realize this is a privilege, and one I’m quite grateful for.) Anyway, when I got into the X-Files fandom a couple of years ago, I was interested in meeting Phile Phriends / Tumblr Pals in real life, and in participating in fandom or fandom-adjacent events, which I have done (and have spent money on), but I told myself that there was no need to ever fly anywhere just for a con: the cost of airfare is too much of an investment, the talent’s schedules can change, and besides, there are a disproportionate amount of options that I don’t have to make the investment to fly to. So I thought.

When DD & GA were announced for WizardWorld Chicago, I had already committed to plans for the con weekend. I was a little bummed, but thought that it was probably for the best that I already had plans, because otherwise, I would have been very tempted to fly to it. Then, just a few weeks prior to the con, after hanging up the phone call in which my last weekend in August plans were postponed, I saw a note from Kristin @kateyes224 alluding to her intention to go to the con. She informed me that @sunflowerseedsandscience, who I had been hoping to meet earlier in the summer, would also be flying in for the occasion. I took this influx of information as a sign that I should get myself to Chicago for that weekend. I justified the cost by using airline and hotel points to subside the expense. I was going to fly to a con. The next few weeks were a whirlwind of madness at work, so I was very grateful to have the aforementioned pals, plus Carrie @carrie11 who would be joining us for her first con, in my pocket to countdown to the weekend with.

I flew to Chicago on the morning Friday, August 24, laughing internally at the absurdity of the situation all the way. I made my way to Rosemont, my eyes going wide when I caught my first glimpse of the convention center, and settled myself into the hotel room before heading downtown on the train to meet Carrie. There was a food truck festival right by the L station that I emerged from, and I realized that all I had consumed only an iced coffee so far in the day, so I remedied that. Carrie was nice enough to indulge in my desire to be a tourist, since I hadn’t been to Chicago proper in years. I had never made it to the Willis Sears Tower, so we did that, and she took some fun pics of Puppet Mulder. I think this is my fav:

We then did a bit of walking -- Grant Park, Lake Shore Drive path, Millenium Park, and the Chicago River, before the rest of the crew arrived and it was finally pizza time! Soon after Carrie and I secured a table at Giordano’s, Kristin, @sunflowerseedsandscience, and Amanda @all-these-ghosts arrived. I greeted them on the patio and had an epic reunion hug with Kristin in which we made a total scene and squeezed each other so tight while squealing that I choked on some of her hair. The five us then had a wonderful dinner that I don’t remember much about except that the pizza was amazing, the company was even better, and I’m pretty sure I was just still in awe that this was all happening. After dinner, we went to grab drinks down the street. There was Shiner Bock on the menu, so Puppet Mulder joined us and confused many of the staff. Amanda especially was tickled by Puppet Mulder, while I was fangirling over her (she wrote Then The Bomb, people!!!) Truly, the con could have been cancelled and the trip still would have been worth it for just hanging out with this crew:

Saturday morning, Kristin procured Starbucks and we all readied ourselves to be presentable for photo ops in the late morning. We met Carrie, Clarice @contrivedcoincidences6, and @albanyparkavenue in the lobby and headed to the convention center. The security line coming from the hotels was long but moved fast. At this point, I had only pre-purchased a dual photo op (and Saturday ticket) but while we were in line I accidentally-but-it-was-bound-to-happen-anyway purchased GA & DD autographs on the ticketing app on my phone. Oops! Once we got in and procured our wristbands, it was already time for those of us with dual photo ops to get in line, so we did. In the midst of a lot of line waiting, Kristin perfected Puppet Mulder’s hair (we decided on Season 4 / Paper Hearts classic floops aka Backstreet Bangs). Puppet Mulder also made friends with a tiny Supergirl, which Carrie captured in a couple pics, and my day was made. Soon, it was go time. I was to go first so that Kristin could do last looks on Puppet Mulder’s hair immediately before the photo. As we approached the final holding area, I situated Puppet Mulder on my right arm and was prepared to pose him in an arms-spread position using the armrods in my left hand (we had been practicing in line.) When it was my turn, I approached, and I was told by those in line behind me that Gillian gave an exasperated “Ohhhhhhhhh boy” while I announced “Puppet Mulder is here!” in an attempt to preemptively stave off any questions about who he was and prevent myself from having to make any awkward hand gestures like I did in Montreal. As we were getting in position I asked, “Can he get in between you? I don’t know that I want to be in it” since I didn’t really care about my face being in it, but also didn’t want to crouch down without warning and confuse everyone. But David insisted, “Ah, no, you gotta be in it!” to which I conceded “I do? Ok.” and stayed put. With that, the photo was taken, I said thanks, and moved out of the way. As the rest of the crew emerged from the Tunnel of Love Anxiety, we went around the corner to retrieve our photos, and I think everyone in the group was pleased with the results! I was pleasantly surprised by mine (even if Gillian is doing her nervous hands.)

I even bought a photo protector sheet after being called out by DD in Montreal for not treating our photo with the utmost respect and bending it a bit. After this ordeal, we realized that we needed drinks and to regroup, so we acquired alcohol (beer is a reasonable lunch, right?) and found a path of floor outside the main hall to make our own. We were joined by some more pals including @dahlia-ships, @observeroftheuniverse, and @perplexistan.

After this recovery period, it was time for Gillian’s autograph session. I had the pleasure of being behind Natalie for this and got to listen to Natalie give the most eloquent, heartfelt litany of thanks to one of her favs. Also, somehow margaritas came up and Natalie and I were like “Yesss we just drank before this!” so clearly my 20 seconds were much less profound, but here’s the rough transcript after that:

Me: Thanks for putting up with us. GA: This was one of my favorite photos of the day. Me: Aww, really?! GA: Yeah, it’s between this one and maybe one other. Me: Oh, what was that? GA: Someone had an alien. Me: Oh yeah, the big blow up thing? [Had spotted this in front of us in the photo op line.] GA: Yeah. Me: *nods* Thanks!

When I emerged from her booth and realized she inscribed “My favorite photo of the day” on the photo, I was both heart-eyed and in awe. See, I am a terrible multi-tasker and thus continually in awe of Gillian’s ability to have a conversation while simultaneously making a non-robotic inscription. Like, yeah, she’s pretty good at acting and contributes to humanitarian causes, but I’d like to give her an award for speaking and writing at the same time. Was this talent born from some crazy avant-garde theatre warm-up? Is this some kind of Mom superpower? Really what I’m asking is: Is there hope for me yet to learn this skill?

Anyway, after the crew got their Gillian autographs, some more drinks were procured, and then we decided to go wait in line for the panel (which was actually a solid 9 minute walk from the main hall.) At this point, I started bothering Kristin to come get a DD autograph with me before the panel, because I’m a bad influence like that. She was unprepared with what she would have him sign though, so we started brainstorming, and landed on possibly The X-Files: Earth Children Are Weird picture book that I had brought a copy of so that Kristin could do a dramatic reading. Since that was back in the hotel room, a few of us darted back to grab it (and to grab our leftover deep dish, which my growling stomach was very grateful for.) We brought the remaining pizza to the line-sitters, and at around 4pm, I successfully convinced Kristin to come grab a DD autograph with me. Shayla @thatredhead00 joined us and her tale of a DD interaction earlier in the day made me howl with laughter. We made friends with a couple of local guys in line, and I connected with a woman I recognized from a previous event, which was funny. Anyway, DD made it back from his afternoon break, the signing session began, and soon enough, Kristin went first with the picture book, and I globbed on to her convo. Here’s the rough transcript:

DD: [signing on the title page] What am I signing? K: The X-Files picture book! DD: [Turns to the front cover] Aww, it’s cute! [Genuinely, high-pitched] DD: What happens in it? K: They go camping in the woods. Me: And Scully’s parents are aliens. Me: Whoops, I gave away the twist ending. DD: Yeah, you ruined it for me. Me: Yeah, it was gonna take you so long to read… Me: Thanks so much!

For those keeping score at home, this brings my record of accidentally-but-lovingly making fun of DD to his face at con autograph sessions to an even 2-0. Interestingly enough, I’ve been to two of his book signings and complimented him (well, his writing) at both of those. Not sure what gives.

Anyway, we decided that we needed more drinks before the panel so grabbed those and then made the journey back to where that was. Our pals were already seated, and the question line had already started forming, so Kristin and Shayla hopped in that while I took a seat with the crew. The panel was perfectly fine in person. Per usual, a few cringey questions (thanks Natalie for letting me squeeze your arm through these), but also a few great questions and responses. Kristin got to ask her question (and, as predicted, Gillian couldn’t remember specifics, and the morgue scene in “Ghouli” was David’s answer, but it was still nice to hear it.) Other highlights included a thoughtful question and response from Gillian on how the show might have been different if written from a more feminist perspective. Also, there was a fleeting moment when I thought the tell-all book was going to be spoiled, plus the infamous “Who tops?” question. All in all, not bad at all, though this was the first panel I’ve attended with just the two of them, so I admittedly don’t have any equal comparison points. Soon enough, it was over, and it was time to drink (more!) with Philes. All of the aforementioned crew from the day joined, plus Amanda, @datanullyx, @redscully, @xfilesgeekery, and @anicepieceofash.  We started in the hotel bar but, in the interest of cost savings, eventually procured liquor and ordered (more) pizza and moved to our hotel room. There were lots of hugs and snuggles, lots of loudly wondering “What is my life?”, platonic handholding, one human/puppet makeout session, an impressive demonstration of Kristin’s ability to sleep through anything, and some amazing cheesecake brownies . As the evening got late, Puppet Mulder even changed into his red Speedo (and put on his to-scale legs.) Needless to say, it was a night both wonderful and strange. Here’s some of the crew at the after-after party:

I feel so lucky to have gotten to spend time with everyone I met or re-met this weekend, and if I start calling out the specifics of why you’re all so great, I’ll make myself cry, so I’m going to stop here. If you’ve read all of this rambling (whether you were present or not), I’m very impressed. Thanks to everyone who shared in this weekend with me from both near and far, and thanks to Gillian and David for giving us an excuse to meetup.

I said I’d never fly to a con, but I’m so glad I did.

Author's note: I always hate writing these because a) it means it’s over, and b) I can never fully capture the awesomeness that is meeting up with fandom friends. Also, I have a shit memory, but jotted down notes about stuff right after it happened on Saturday, so hopefully I’m not misconstruing anything too terribly. If you were present, feel free to correct me!

[phawareglobal]

Colleen Schnell Transcript 95

Colleen Schnell is a long term pulmonary hypertension patient who lives in Niagara Falls, NY. She is the support group leader of the Buffalo Niagara PHriends group and moderator of two PH-related support groups on Facebook. Colleen likes to volunteer at a nursing home, exercise, paint and make jewelry, and spends quality time with her family and friends. One of Colleen's favorite phrases is "Always Have Hope." 

My name is Colleen Schnell. I am from Niagara Falls, New York, which is about 20 minutes north of Buffalo, New York. I am a pulmonary hypertension patient. I was actually diagnosed about nine months after I was born, in the mid 70's.

When I was a baby, my mother took me to a free clinic to get my first set of shots, and a doctor there thought that he heard something wrong with my heart, and told my mom to bring me to my pediatrician. So, my mom did. Pediatrician said, "Oh no, she's fine." So, the second set of shots at the same free clinic, the same doctor that was still there said, "There is definitely something wrong with her and she looks blue." Which my parents I don't think really recognized that.

So, they took me up to Children's Hospital in Buffalo, and I was pretty much seen right away. I guess did a whole bunch of the different testing. I know I had a right heart catheterization twice. They said that I had a heart defect called Arterial Ventricular canal, which basically means in a nutshell, I have two holes in my heart, and they could not correct them at that time because I had already developed pulmonary hypertension. And at that time, there was nothing to treat PH. They didn't really know a whole lot about it. They couldn't correct my defect, so my parents were pretty much given, "We don't know how long she's going to live," sort of situation. "She may not make it to her first birthday. She could turn 50, we have no idea." They basically were just told, "Here, take her home and love her as much as you could."

I will be 42 in September and you know, I thank God for every day. So, I pretty much grew up going to a pediatric cardiologist, at least once or twice a year. I had ECHO's just to check on my heart, my heart defect, make sure my heart was working right. I wasn't going in to heart failure or anything like that. I wasn't even really aware of the word pulmonary hypertension until I was probably a teenager. I think I still have the paper that my cardiologist wrote on with that term. And also my defect. But I realized that even he did not fully understand the extent to pulmonary hypertension.

When I was in my mid to late 20's, I was teaching pre-school, I was going out a lot. I was dating. I had moved out on my own. Trying to just do everything and my symptoms became a lot worse. That and the fact that I was teaching preschoolers and my third year in, I had double pneumonia, I had bronchitis and then I was on my third respiratory something or other, when my primary doctor told me I needed to quit my job. I was at 24 at the time, and I never thought I'd retire at that age. And my symptoms did keep getting worse.

I went to my pediatric cardiologist that I still was seeing, and told him about my more shortness of breath and I felt like that was the first time I felt like I ever had an elephant sitting on my chest all the time and fatigue and everything was increased. And he gave me asthma meds. And you know, I tried those and they never worked. So eventually, my primary doctor referred me to the Cleveland Clinic in Ohio, for a lung transplant evaluation. And it was several visits later, I was put on an oral medication. I think the biggest thing I realized was my recovery time in doing anything strenuous, was way shorter than anything I had ever experienced growing up. I would usually spend hours or the rest of the day, just resting and trying to get enough energy if I was running around with my sisters. This medicine, I realized, helped me recover within minutes and not hours, and that was pretty exciting for me. I also started pulmonary rehab, which was in about 2008, and I still do it, twice a week. I go to one of the local hospitals here.

I grew up being told, "Don't ever play sports, don't take gym." Never too a gym class in my life. Nothing like that, because it would be so exhausting. I've really found that exercising has helped tremendously. I did add another oral medication in 2007, and the combination plus the pulmonary rehab and even yoga lately, in the last couple of years, has helped me quite a bit. But it did make me realize that my pediatric cardiologist before I went to the Cleveland Clinic, did not understand pulmonary hypertension, even though he had the name. It made me realize then, that wow, a lot of doctors don't really know this disease. That's difficult too, I understand the frustration many people have when it takes years to actually get something diagnosed.

I think awareness is important because it would get patients diagnosed a lot quicker instead of some people being diagnosed, you know, even five years after they start presenting the symptoms. That is definitely something that awareness does help. I think awareness also helps bring many more patients together, whether it be in a personal or a local support group, or even online. I mean, I know Facebook has become such a huge outlet for the PH community, trying to reach more people that way.

I definitely can tell people now and I have told people who are just being diagnosed, that there are so much more hope than there was when I was diagnosed. There was a lot of times in my childhood when I just couldn't do anything to like my classmates could do. I spent a lot of time in my room, doing things that I could do, reading and writing and things like that. But I think there were also things that my mom always found. I mean, I was a girl scout. I couldn't participate in everything, but there were a lot of activities that they did that I was able to do.

I don't feel I was totally sheltered. I pushed the limits sometimes, and if I couldn't do something, I just wouldn't do it again. Or I would do it again, and I find that I might do that more myself as an adult, pushing the limits and doing them again even though I know I shouldn't have done it.

My name is Colleen Schnell and I am Aware That I'm Rare.

Listen to “I’m Aware That I’m Rare: the phaware® podcast” at www.phawarepodcast.libsyn.com. Never miss an episode with the phaware® podcast app. Learn more about pulmonary hypertension at www.phaware.global. #phaware

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