One of those new age life affirming mottoes: Live in the moment.
From sick people everywhere, I’d like to take a moment to tell you how incredibly hard this is.
In the moment you are feeling good, life is lived and caught up on. It takes some time, but before you know it, you stop looking over your shoulder for the other shoe to drop.
In the moment you aren’t feeling good, there isn’t just a single moment. There is an acute awareness of time. How little you have when you feel good. How much you have to do. How long the hours between pain pills take. How short an afternoon nap is. You want to think about the future, but all you can see is the cold stark reality your body is telling you: you ARE in pain now, you WERE in pain before, you WILL BE in pain in the future. The next five minutes, the next few days, even the next month.
Suddenly, your ‘moments’ that you are supposed to be living in shrink uncomfortably. And like everything else in your life, they become part of the dis-ease.
I am in the middle of one of those right now. I am trying not to think about it. I know I could bring home Olympic gold for crying if I do. I just lost it today. I can’t stand the thought of being able to function only a few months out of the year. The heat index was in the 100’s here today, which negatively effects my health. My body’s building inflammation and exhaustion make it impossible to feel anything other than frantic (all the time). I try to hide/handle it, but couldn’t hold it off anymore and cried for an hour in Oz’s car. I wanted to have a fun evening with Oz, to remind him of who we are, but I messed things up. Not to mention, crying didn’t help the matter. Oz tried to help me. But those moments can be hard for him too.
Instead of feeling better after all that crying, I just want to cry more. Because instead of living in this moment, I keep reliving that hour, and I feel sad. Shame even. I don’t know that person who is lost inside a turbulence of pain and inflammation. I can’t image what Oz sees when this happens, and that scares me. What if he gets caught inside my moment? I want things to be so much better. To get those moments worth living in. They are right in front of me, just in different moments I suppose.
But why would I want to live in this moment, anyway? It sucks. It takes a lot of energy. The things I want to feel (love, relaxation, happiness) I can’t because other things (pain, exhaustion) are demanding that I feel them first, and they don’t like to share.
I think this concept of moments is why I like the opera so much. Yes, I attend the opera each summer, usually two or three. I love curling my hair, wearing my favorite heels, and beautiful elegant dresses. I love the velvet seats, the swell of the orchestra, and the lilt of the foreign words. I am partial to tragedies. Especially those where the heroine has an unseen illness (tuberculosis in most cases). Because for 2.5-3 hours, the crowd revels on the tremble of her voice, the bravery of her love, the attractiveness of her attire, and the beauty of her tragedy, heart break, and death. For that period of time, that moment, the focus isn’t on the disease; the disease is just a vehicle to move the story, an integral part but part nonetheless. In that moment, the crowd sees everything else. And they see everything else but disease on me.
For however long afterwards, I am reminded that my disease is just a vehicle to move a plot forward. It is not the focus, just a part. Like the color of a dress or the weather, just parts. If I look back, that vehicle has taken me far. Without fibromyalgia, I never would have had to medically withdraw from my first semester of college and move back home. And if I hadn’t moved back home, I wouldn’t have met Oz.
If I can focus on the fact that my story is going somewhere, maybe I can survive these moments.
If I can remember that my story is moving, I can remember the things I know are true, beyond a shadow of a doubt: Oz and I meant to be; I will get better; I am stronger than I remember; I am not alone; I am human; I have a great and powerful love; I can achieve greatness.
I can trust the moments to come and go and not change those things. I just have to remember that, in the moment. Oh, and remember to live.