This week provided a small rest, one that my entire body needed. Even though there was costume laundry involved, I still allowed myself time to come down from last week’s show.
It’s funny. I spend so much of the school year talking to the kids about the “show at the end of the year.” When it’s over, there’s always a weird letdown. I can’t explain it. Some of the dancers mentioned feeling that way. All of the hours of practice, the classes full of difficult choreography. It’s all finished for the year. Prior to this show, I told the kids to savor the moments, that what seems like thirty hours of stage time is actually only about an hour. And then they’ll be backstage, giving back their costumes in a blink. They never believe me until they experience it.
It’s like life in general. Isn’t it? We always think we have more time, more this and that. More interactions with the people who matter most. Then, for various reasons, that time ends and we’re left feeling lost. It doesn’t even have to be as dramatic as a death. People change jobs. They move to a new location. Graduate from different schools. Change classes. Each of us lives that cycle, over and over in our own lives. And that’s the reason I try to keep looking upward.
We’re forever beginning one thing and ending another, even if we can’t see things that way. Changes fall into various categories: minor, moderate and major. Being diagnosed with any medical condition is a major change in life. If treatments, medications and hospitalizations are required, it’s beyond dramatic. And then, at least in my case, it became a new norm. I spent more than a decade in that cycle. It only changed because my morphine pump malfunctioned. Otherwise, I’d still be on the same path.
That unplanned upheaval required new thinking on my part. It was a dramatic shift in lifestyle. So much so, that I felt lost. The decisions to not replace my pump, to try walking without my cane, these might seem little to you. They weren’t to me. Both enabled me to see things in a new way. It was like getting new glasses and suddenly seeing what the world really looks like. Those changes in my life helped me to find ways to look upward. So much so that I cannot help being positive. I never lose hope. It’s my way of coping. No one else has to subscribe to it. But it helps me through even the worst days.
So when my hands were really bad last week, I tried to focus on what I was still doing despite the pain. I was still working. I made it through the show. I got through the weekend. And on and on. One milestone after another. Before I knew it, four days went by and I was doing better.
During the last few days, my left hand has been acting up a bit. Sore and painful, and bitter cold to the touch. I hate that. Cold hurts. Even on the warm days we’ve had recently, my hands felt like ice. And they burned. But I tried really hard to focus on what was in front of me. Never losing site of my symptoms but knowing that focusing on all of the bad wasn’t going to get dinner made, costumes washed and other work completed. So I strived to look upward.
When I felt as low as possible, I tried looking upward. The act of refocusing my energy elsewhere, almost defiantly, helped me get a lot done this week. It wasn’t easy. But I did it.
I wish it was as simple to do as I must make it sound. It’s not. I know how hard it is at 3 a.m., when the pain is so bad that you want to rip your limbs off. I know, because I’ve said those exact words, hundreds of times. It’s way easier said than done. But the act of even thinking about tomorrow, got me through those nights. Helped me refocus. And, when I felt stronger, I could really distract myself. During a bad flare, we need support. We need to be believed. And we need pain relief. Sounds way simpler than it ever is. Ask any chronic pain patient. They’ll tell you about countless bad experiences. And that makes it that much harder to find hope. That’s the challenge. I try, but don’t always succeed. But I’ll keep trying.
As I write this, my hands are sore. My back is twinging in the way it does before it locks. When that happens, the burning pain gets so intense that I often cannot help crying. It’s too much. But, today, I’ll try to stretch and hope that the twinges will be as bad as it gets.
I keep looking upward. I keep looking toward better days. It’s the way I was raised and the example I’ve tried to set. Even in the worst of times, look beyond. If not from the epicenter of the crisis, then once things calm down. Once things settle, even a little bit. Look upward.
You deserve hope. My wish for each of you is that you have some. That you find ways to look upward.
Be kind to one another.
Peace & painlessness,