February 4, 2015
Simon here: I’m writing this blog post a few hours after we filmed today’s TL;DR. We got back home from the studio, went out for some Sundubu Jjigae, and came back to our apartment. Martina’s totally beat, and has just laid down for a nap. It’s 8:15PM, and she’s exhausted after a really challenging day.
We’ve been planning on filming today’s video for a while now, but we never knew how, or when, or even why. When Martina fell yesterday, and I saw how her spirits were crushed at that moment, and we did our best to think about how much fun we were about to have in the video we were going to film, we realized that was the perfect example. It’s not our first experience of motivating ourselves through pain. It happens often, mostly in the mornings, but yesterday’s fall and how we overcame it helped solidify our idea on how we wanted to share Martina’s experiences with EDS.
I think that could be why we take on so many projects as well. Are we just really motivated people and can’t stop trying to do new things – like road trips and tours and opening coffee shops and expanding the studio and making an app (Android version out really soon!) – or are we giving ourselves more responsibilities so that we could keep going? I’m not sure. None of our projects are burdensome, though; all of them excite us. We’ve got some really cool stuff we plan on doing this year as well! The biggest burden is in staying home and in not doing something.
We’ve chosen an unconventional path. Hell, I’m not even sure if it’s a path that we’re on as much as a giant wheat field that we’re running through without any idea of where we’re going. The conventional path usually involved graduating from school, getting a career, a spouse and two kids, and working until you’re 65, and then retiring and traveling. That’s not something that we can do. We’re running into limits now because of our health; how functional will we be when we’re older? We’re not going to postpone our dreams for a safer day and age. We’ll do all we can, when we can, now.
We spend most of our time, so long as health allows it, in pursuing our passions, in eating really great food or in traveling to new places or in building new things. We focus on the happy things in front of us, and try to leave the upsetting things behind us. I have this reoccurring dream every month or so, in which I’m in a horror movie set, and it’s either the Chainsaw Massacre dude, or Jason with the hockey mask, or some evil thing trying to get me, but I’m never afraid of it. I simply run over to the nearest highway, and just start jogging. I know so long as I keep moving, and keep my distance, then whatever is trying to hurt me will never catch up to me, and I can keep going on forever.
It’s when I slow down to think about the situation that I hurt the most. Martina’s the greatest person I’ve ever met; she’s so radiant, and so creative, and whimsical. She’s so optimistic. She’s understanding and compassionate. There’s a spirit to her that I’ve never seen in anyone before or after, one that I knew upon meeting her how special she was, and even ten years into knowing her I still feel the same way. She has motivated me to be a greater man than I ever thought I could be. And so, it’s really challenging when I see her lights flicker, when her sun clouds over, but I do my best to ease her burden, and to get her back in her stride alongside mine, so we can both chase the nearest distraction.
December was the darkest I’ve ever seen her, and it was an exceptionally challenging time in our lives. It’s really tough to keep on going when you can’t even stand up. She’s better now. Not fully recovered, but we’ve got enough in us so that we can get back to doing what makes us happy. We can travel again. We can film again. And we can joke with you all like we used to.
You’re all a really important part in this for us. I can see Martina’s joy when she’s reading your comments online, and when she’s writing back to you. So, thank you for that. Really. It means a lot to her, a lot to us, and you’re supporting us in more ways than you might have known.
So…that’s it for this video and blog post. We’re worried that we might have been discouraging to some people with disabilities, and we hope that it doesn’t seem like we’re telling people not to discuss their disabilities openly, just because Martina prefers not to. For many people, that’s a solid way of not only coping with, but also in overcoming their limitations. For Martina, though, it doesn’t help. She’s creative, and finds creativity therapeutic. Some might not think it’s the best way to handle a life of chronic pain, but it’s what works for us. We don’t know anyone else, really, who lives in pain. We don’t know who we can relate to, who we can discuss this with. So we work through it by making all of the things that make us happy, for as long as we possibly can.
Hopefully you won’t think worse of us because of this post, also. Martina’s condition doesn’t change how we’re going to make our videos; nothing now is different from how we’ve made videos in the past. I’m sure when you see our fruit video coming next week, you’d have no idea about what happened before we filmed it, so we hope you won’t think sadly when you watch it, but instead laugh along with us, for that and for the rest of the videos we do.
And, lastly, even though we don’t talk about it often, it doesn’t mean we’re not willing to talk about it here, now. Though we’re not experts on Ehlers-Danlos Syndrome, or Chronic Pain, and the best way to either treat or cope with either, we’re willing to talk about and share our experiences here, and would be open to hearing yours as well. If you’re comfortable with it here, we are too :D