My blog, welcome.
| August 7, 2020
This week has had me feeling like someone ran over me with a truck. I just got back from doing a virtual camp with other CMT (charco marie tooth disease) youth and I missed this writing community so much. We did a bunch of activities and talked about our trials and triumphs quite a bit, but I couldn’t connect with the campers themselves.
I’m not sure why. They were all accepting and kind; quite a difference from the people in this state. I talked about Kat a little, happily proclaiming her as my girlfriend, and no one batted an eye. That’s what the world should be like so it should of made me feel ecstatic... but it didn’t. I felt so much joy and pride when I came out on here, and talked with the amazing Robert Waltz, Lilli ☕️ 🧿, Charity Marie - New Book Out!, NaNo_Mike 🎺, and Paul. It was also pretty fun making fun of Robert for his lack of water drinking skills. Moreover, it felt better when I was talking to those accepting folks then it did coming out to the accepting youth.
The difference with these two great times is the connection. I absolutely adore this community and the wonderful people here. I’ve been here for about five months now, I think? I may need to check that. Anyway, a few of you have become people I know I can count on, and others are simply so kind. No one treats me like a child—even if I am still one—and it means a lot. I may have a lot less experience then the old folks (Hey, Paul is 78) on here, but my voice still matters.
At the camp, my voice did matter, but I was new, and it felt like I was being a little left out. It was my first time with my fellow CMT fighters. There were about a 100 of us on zoom calls at various parts of the day, and little over that amount on the morning and nightly chat. I understand that they couldn’t talk to everyone, and for the most part, a few did talk to me. But it didn’t mean very much, I guess. I missed all of you, and Kat.
The ache I felt during the end of the night, after the calls were done and everyone was heading to bed, wasn’t even psychical but it was wide. I wanted to see Kat so bad. Those calls just reminded me that had camp happened, I would of traveled 20 hours away for seven days to see a bunch of random kids and counselors, but I can’t go see my girlfriend who is only sixty minutes away.
The point is this: while I know my CMT will be a nightmare as I get older and the muscle pain will increase, having the camp didn’t really make it easier. It was supposed to be people you can relate to and make friends with, and while I did, I didn’t get anything out of it.