MY FIRST CONFERENCE
I need my life to change. Every day passes with an unfulfilled feeling. Each week goes by too quickly and with nothing to show for it.
I am sick of this.
Starting tomorrow, I am attending an annual three-day conference put on by the Spastic Paraplegia Foundation, which focuses on the nervous system condition I have- hereditary spastic paraplegia. My goal is to bring together physical and mental disorders, but I’m not sure how to proceed. I’m hoping to take what I learn at the conference and team it with the two presentations I’ve done recently about having a rare disease and mental issues. (Both, not just the mental issues that come along with any diagnosis.)
Are conferences even for me? I’ve stayed in hotels where they’ve taken place and seen people dressed for them in ways that disgust me. But I’ve never been to one. Maybe I’ll learn and it’ll be productive. Or maybe it’ll be a waste of time.
My base-line objective is to not feel like my time, money, and efforts were for nothing. I’d like to grow from this. A bonus would be if I met a person who could help guide me along my path, whatever that might be. This is possibly just a dream though. I should focus on making connections and advancing what I want to do. Anything else would be a plus.
But we’ll see what happens…
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It was very scientific and medical. I usually enjoy such things, having been asked more than once by a person who saw my book, ‘You’re reading that for fun???’
It was also quite boring. I tried being interested, since it affects me personally, but it’s tough when a mono-tone speaker talks about scientific things, especially via a video call.
I thought being around other people with HSP would be comforting, but that didn’t happen either. Many people use walkers or wheelchairs, so I got a glimpse into my possible future. But it hits everyone differently, so there’s also a chance that I’ll stay like this for the rest of my life. Some people I met had the same strain as me (there are over 90), but we were in different conditions, although we struggle with many of the same things.
I don’t want to stay like this. I mean, in general, not just with the disorder.
Today messed with my mind and it was only half of a session. Hopefully, the next two days get better.
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Session two was very long. It had already been planned that way- nine hours- but lasted over 12.
The morning’s presenters gave good information, but the whole thing got a bit stale, just in time for a relatable personal trainer who gave a very inspiring speech. He’d been diagnosed with Parkinson’s but powered through it to create something positive. I chatted with him after and mentioned how my dad also had Parkinson’s, but gave up instead of trying. This guy’s story is much more encouraging.
Eventually, a doctor-with-a-big-ego spoke. Then it was another guy’s turn, whose demeanor was that of a chain restaurant’s server sitting at your table and acting like your best friend. The information he gave may have been good, but I couldn’t get past his energy, so I went outside. I chatted with the creator of a play I’d seen about HSP, and it was a very pleasant conversation. We appreciated each other’s humor and I was able to ask something I’d been wondering about the show. (It took her a long time to say ‘hereditary spastic paraplegia’ and I couldn’t figure out why. She said it represented the time it took her to get a diagnosis.)
Her friend came outside and I could tell they wanted to hang out, so I went back into the conference. The chain restaurant guy was *still* talking. I looked at the schedule, and apparently he’d been given 75 minutes, while every other presenter had 30. He must be some kind of minor celebrity. And the audience liked him, so I guess his annoyingness was only felt by me. I’ve been doing this thing lately where I step back from a situation that bothers me to consider if it’s an actual problem or just my issue. (Often, it’s the latter.) For some reason, he’s presenting again tomorrow, so I’m gonna figure out something else to do during that time.
The day’s final speaker was this woman who talked about positive mentalities to have while dealing with a rare disease. (Similar to what I want to do!) Her presentation was quite good, and I chatted with her after it. (Look at me, being all personable.) She is a social worker and a lot of what she said sounded like re-framing thoughts, something I’d learned about (but failed to adopt) in therapy. I plan to contact her again once I get some more direction.
Right after the conference, there was a men’s meeting. (There was also a ladies’ one.) The idea was for us to discuss uncomfortable male things without fear of judgment, even though I personally wouldn’t have felt any, but that’s just how I am. (I would’ve probably felt more comfortable with the women, but that’s another issue. And no, not in *that* way.) We sat in a circle and introduced ourselves, then the ones who had a lot to say did so. I went to the bathroom (a symptom of HSP is bladder urgency) but stayed outside the room until dinner started.
Our places were fitted with salad and slices of cake. I was confused. I was also told to leave my ‘vegetarian’ slip at my spot, and was promptly given steak. Another slip said I was allergic to onions, which is not true, but my guess is that if they were part of the meal, that would’ve been included as well. I swapped the steak for lentils.
After dinner was a raffle and an auction. I bought 13 tickets but none won. The money went to SPF though, so that was nice. A quilt with a clown on it was part of the auction, so I was set to bid on that, but it quickly got to $800 because two women were in fierce competition for it. Also, the “auctioneer” allowed them to continue out-bidding each other for way too long.
When the day was finally over, I went to the lobby to read and drink a non-alcoholic beer. I needed quiet.
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Well, it’s over, and I possess the mind-set I didn’t want to have at this point. I am tired and peopled-out. The final presenter being insanely boring didn’t help, either.
But did I learn from the conference? Maybe. I took some notes and will go over them within the next few days, after I’ve had time to process it all.
I again chatted with yesterday’s final speaker, who suggested I think about doing a thing called ‘What Should I Expect?’ This would be a how-to guide to prepare conference-goers with what they would face. I wish there was something like that before the whole thing. For example, each speaker ended with time for questions. I had no idea what questions to even ask, because I often couldn’t follow what was being discussed. Lectured, rather.
Was it nice being around other people who have HSP? Sort of. It gave me perspective. A lot of attendees looked how I feel most of the time. But my case is mild. Many people, including doctors, said that I walk well. One woman even said she’s jealous of me. Sorry, but I don’t care what your condition is- mine is not one to be envied.
That did not make me feel good. It made me think I was inadequate, like I’m not taking advantage of the situation at-hand. And that thought is correct. I’m not. People resent me and I just go around being unhappy.
It has to change.
But how?
The way I see it, there are two options: 1) Following the path of working with HSP, helping people get information, while also tending to mental issues. That seems like a lot of work. But it would be important. Fulfilling? Maybe. 2) Travel while I still can. I have no idea how the course of this disease will go, so I might as well visit places on my list before I’m possibly not able to.
Or I can do both. I really don’t know. I continue to be lost.
At least I successfully avoided the obnoxious speaker, right?
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