A few weeks ago, I was once again headed to my regular neurology appointment. I dread those appointments because it’s a hike from the car to the office. Often, I have someone with me and use my scooter. Occasionally, I like to prove to myself that I can still do it on my own. I’m stubborn like that. I can do it, but gosh it’s so difficult. Sometimes, I start to count my steps to take my mind off of the sheer difficulty of what it takes me to get up there. One, two, three, four, five and then often I get distracted and think of something else. Don’t trip, don’t trip, don’t trip, I silently repeat. This most recent time, I thought to myself, how ironic is it that the thing I want most in life and fight the hardest for every darn day, which is to keep walking, is also the most difficult thing for me physically? Why don’t I just throw in the towel completely? I mean it’s just such a dread, but also I want it more than anything. It’s a crazy mind game. Yet, I can’t help but be grateful I can do it. I’m fortunate.
Often, on the walk up there, I pass several others who are in a similar situation to me. We lock eyes as we pass by one another, and it seems like a hundred unspoken words are shared in that fleeting moment. As if to say to each other. “I get you. I know how hard this is.” And for some reason, that gives me the strength to get to my destination on the 3rd floor. Once I’m at the check in desk, I feel like I’ve crossed the finish line of a marathon, except no one is waiting for me at the end to say,” good job!” and hang a medal around my neck, ha ha! It’s then not lost on me that I have to do it all again on the way back down. Back to back marathons. I wouldn’t have it any other way. I’m beyond grateful for the ability.
The mental strength I get each time I’m accomplish something that most people wouldn’t bat an eye at, is unmatched. What else is going to keep me going? Accomplishing hard things makes us stronger. It’s never easy, but in my experience, it’s ALWAYS worth it. Our challenges in life are largely what form us as individuals. It’s not the easy things. It’s the difficult things. As frustrating as it is, I just think there is a lot of truth in that. For me anyway, and I imagine some of you can relate.
The month of September is Muscular Dystrophy awareness month. This month I’ve committed myself to sharing each of those 30 days what things are like for me living with Muscular Dystrophy. Similar to my blog, I’m just sharing everyday life stuff and what it’s like in my world. I often fear that some will take what I share out of context, and possibly think that I don’t understand that I’ve got it pretty good in the abilities I still possess. Sometimes, I almost let that hold me back, but then I remember how much I needed someone like me when I was growing up. There are many who are disabled in the same way as I am. They need someone too. If I can be an example to a younger person of what it can look like to successfully navigate life with a disability into the adult years, then I need to do it. To me, its an act of service. Helping out a fellow human being who may need a lifeline. Much of my life I spent trying to make myself small, and didn’t want to be seen as my true self. I’m not willing to live like that or do that to myself anymore. Let’s try to see people just as they are and respect them. Most people have more than they can handle on their plates. Let’s try and just accept one another right where we are. We are each strong in our own ways. Let them shine! 💚
I am 45 and also affected by Bethlem Myopathy and can absolutely relate to what is written here. But now it is so that the renunciation of walking unfortunately immediately raises new follow-up problems. The lung function decreases even more than before and also the digestion makes problems, the intestines will lack the movement by walking.
ReplyDeleteWhen sitting all the time, the intestines also lack the gravity to process food. In addition, with absolute inability to walk, one is dependent on the destination being barrier-free to reach and unfortunately a large number of places in our world are not this. Standing on your own feet will also become impossible over the years. A real dilemma.
It is also interesting that people with muscular dystrophy all over the world write again and again that they needed older affected persons in their childhood and youth to whom they could have oriented themselves. Good thing the internet exists.
Hi Amy! Thank you so much for posting about your experiences. I was just recently diagnosed with Bethlem myopathy. You're absolutely right about the marathon that just walking in and out of a building is. I love your positive outlook, which is how I feel, too. I can relate to much of what you've said. It feels encouraging to read your words and I want to fight to keep walking, too. Good luck to you! God bless.
ReplyDelete