I watch a lot of movies while I work sewing for for my custom window treatments business. It helps keep my mind occupied from other damaging thoughts. . . This past weekend I watch "The Theory of Everything," about Stephen Hawking's life. I was very excited about this movie because I read A Brief History of Time when I was only a Sophomore in high school. This was a recommendation from a science teacher who recognized some talent in me in the area of science. I devoured the book! It was fascinating. Unfortunately, my science abilities had peaked at the high school level and I did not do as well as I had hoped in college. But I still experience a sort of frenzy at the topic of astro physics, not that I have much to contribute. So I was very excited for this movie.and to understand what he went through on a more personal level. It was devastating and quite overwhelming. At one point in the film he attempts to get upstairs and is sort of "stuck" part way up. His infant child is at the top of the stairs just looking at him. It reminded me of the night I had a slipped disc in my back and was stuck in position halfway getting off the couch. It was the worst pain I'd ever felt. I yelled for my three year old to get my phone, but he didn't know what to do or where to look. I was just stuck like that for hours until my husband came home from work, my son, all the while, at my feet sobbing. I broke down when I saw this scene. I guess because it is so lonely in that moment. No one knows what it feels like and no one can help. You just have to go through it alone. And then you suffer a sort of PTSD afterward as you recall the pain when you do certain motions or movements. And you can't say anything to anyone. you can't just say, "Sorry I was out of it for a couple seconds: I was having a flash back." You just have to live with it. Alone. In your own head.
When I run and I remember that night, I get very emotional. Or when I remember the night I dislocated my hip while pregnant with Miriam and it was dislocated for three days. I remember those pains and my back and hips seem to remember them too. As I continue to move forward, I sometimes find myself weeping. I suppose I find myself like this because, again, I am all alone. No one felt what I felt and therefore, no one know what it feels like to conquer it.
I do want everyone with EDS to be able to have days free of dislocation, free of subluxing, even free of pain sometimes! But the conquering moment can be very frustrating. Running down the street can either be our Hercules moment, or our Icarus moment. When you succeed, you will feel on top of the world and want to share this joy with others. But often times it ends crying alone because you are the only one that understands. And that is okay. The achievement is still satisfying.
The point I am trying to get at, and failing miserably at as I go off on many tangents, is that someone you run a race with will run it 1/10 of the time it takes you to complete it. However, conquering not just mileage, but an entire life consuming disorder is worth ten medals that the person who got there first receives. You will cross the finish line, crawling, crying, broken and in your head it will be as though you were first and with record time. But unfortunately, it will only be that way to you. And again, this is still satisfying, but it is a very lonely victory.
The victory is not in crossing the finish line. It's in making the choice to race. It's in the training. It's in the failing and getting back up again.
My point is that life is a battle. When I crossed the finish line of the marathon at over six hours, it seemed to everyone else watching that I was the last person to cross the line. But in my mind I had gone 26.2 miles from that couch in my house where I was stuck for hours waiting for my husband to "save me." In crossing the finish line, I saved myself. I had taken charge of my life.
As I crossed the finish line, vendors were already packing up. The booth that engraves your medal with your name and time had already closed. The bands had all packed up and left. The medical tent was already loading up a truck. And all the while I was alone in my head thinking that if anyone around me knew the first thing about my struggles, the bands would still be there, the vendors would all be there, and the finish line would be packed with spectator's cheering. It was a victory what I had achieved. But it was one I had to experience alone. There was no one else there. But in my mind, I remembered the day I was stuck on the couch with a slipped disc, the days I couldn't get my infant out of her bed when she woke up, the days I had to kneel on a pillow and pull/slide myself around the house to get around because even supporting myself on a cane was painful. . . And I won! I beat that. I crossed the finish line on my feet. It was 26.2 miles of war. And I won!
EDS is so lonely and isolating. Don't make it more lonely and isolating than it has to be by trying to manage it with pain meds and then losing yourself in those. There is no medal at the bottom of a pill bottle. There is no victory in a prescription. There is only you. And if it takes you all day to cross the finish line, and you have to hobble across it because you dislocated your shoulder at mile 22, and when crossing no one is there to share your joy and excitement, I can guarantee you right now that that moment is better than any momentary satisfaction found in prescription medication.
Be victorious. Even if victory looks like this:
No comments:
Post a Comment