I’m Fine!

Hello and welcome back, or if you are new here, welcome! I often feel like it’s hard to come up with the right words sometimes to talk about all the complexities of my thoughts I have surrounding my disability. That may surprise you coming from someone who has never known any different, but it’s true. Sometimes, I will hear someone say something and think, yeah that’s what I’ve been trying to say for years! It’s not that it’s some big huge earth shattering thing even, often just a simple phrase. 

I was watching a show the other night, and one of the characters had a disability. She said something like, I’m always trying to prove to everyone around me that I’ve got this under control. I was like, yes!! I can totally relate. That’s what it feels like to me. I think we can all relate to that in some way. Often times, we go around and present our best selves, stuffing away all the ugly and hard right? We want those around us to feel like we’ve got this under control. Trouble is, we often don’t. Life is messy and it’s hard. Also, it can be joyful and enjoyable. A mix of feelings, often intertwined with each other. 

Part of it is, we don’t want to burden those around us with our troubles, because we know of something difficult they are going through, or we don’t want to come off as complainers who need to get it together. So, when asked how we are doing we say, "I’m fine!" Followed up by, "how are you?", often met with  "I’m fine too!"

On our recent beach trip, Jack and I went down to the beach together. It’s a lot of effort to get me to the beach, but Jack was up for the task. After we were there for awhile, Jack told me he was leaving to go on a bike ride on the beach. The weather was beautiful. I jokingly told him, ok I’ll be in the exact same spot when you get back, as I was not able to stand from the low beach chair. About 10 minutes after he left, a storm suddenly rolled in. Everyone on the beach quickly gathered up their things and ran for cover. I just sat there, knowing I couldn’t get up. Jamie texted me and asked me if I needed help, to which I responded, “I’m fine!” Aside from one other man on the beach, I was it. I kind of wanted to ride out this storm alone on the beach. It felt part stupid and part badass. Mostly stupid. By the end, I was kind of expecting Jeff from Survivor to pop out from behind the dunes to tell me I won! Ha! It was a fairly quick moving storm, and I knew by the time Jamie would get there, it would have passed, plus he needed to help Jack who had also been caught unexpectedly. That was most important. It was a storm complete with hail and all. Honestly, it was pretty cool to experience. I was literally stuck, not able to get up from my chair, but I felt for some reason like I had the situation under control (which, obviously I didn’t!)

After the storm, soaked!

Having muscular dystrophy, it’s hard to find a balance between not keeping all of your frustrations bottled up, while also trying not to seem like a downer to everyone around you all of the time. Obviously, that’s the perspective I can speak from. I mean, there could probably always be a complaint, or a frustration due to the lack of muscle strength that can make the littlest things a huge or impossible task (like standing up from a beach chair). Most of that is kept to myself. I have to find ways to process all of that daily frustration. The people that you live with, or that you’ve known a long time stop hearing you after awhile. It’s just human nature, I suppose. Once you hear someone say something is hard over and over, you just don’t have the same empathy. Also, you get sick of hearing yourself say it. It just increases the frustration when you say it, and feel unheard. 

I’ve learned a lot about myself during the time I’ve been writing this blog. In many ways, my regular readers have been on my healing journey with me. I have been met with the utmost compassion, and quite frankly overwhelming love. I think people, some who are disabled, and some who aren’t, can often relate to what I'm writing about in some way. 

So, back to proving to everyone around me that I've got everything under control in regard to my disability. In a lot of ways, I do feel like I have things under control, as far as management and daily routines, but in some ways it feels like I totally don't. At the moment, and into the foreseeable future, a lot of what happens is out of my control. Some days, I'm able to neatly put those scary feelings into a little box, and other days I can't get away from those thoughts of what does tomorrow hold for me? Will it be the day I can no longer walk, or do certain things independently that I'm used to doing? 

Living humbly courageously with a progressive muscle disease can be challenging. I don't always feel so courageous when forced to face those difficult realities. I have come a long way in accepting my reality, but that doesn't mean that it doesn't terrify me. It does, and it can be really difficult to relay those thoughts to someone who isn't faced with those same realities. I have many people in my life that do try to understand though, and I appreciate that.

Another practice that I've been pretty diligent about for a few years, and has changed my anxiety level for me, is journaling at the end of each day. I take time to read scripture, and journal about what my day has looked like (physically mostly) for me. On days when I feel like I haven't been able to do much physically, I force myself to write down all that I accomplished that day. I'm always surprised at all I've been able to do. It's pretty simple, if I look at what I'm able to do, I can focus on the present, and not look too far into the future. It's largely out of my control, and that is something I need to remind myself of often. 💚