The first time I read this statement we had just been told that the probable diagnosis for my neurologic problems was Hungtington’s disease. That was a pretty big kick in the head after years of trying to figure out what was going on with me. It had been a long road of more than 5 years of visiting doctors, neurologists, psychologists, specialists. We had ruled out Parkinson’s, MS, and ALS. I remember thinking that we’d go back and take Parkinson’s for $1000 please Alex – if we could choose.
But I was losing energy and the will to keep playing the game. I’m not sure winning the game was even still on my radar at this point.
About that time someone sent us a quick story with that quote about dancing in the rain at the end of it. I remember I just kept reading the phrase over and over again. I could see the words but they didn’t seem to make it off the page.
Are you kidding me? If ever there was a time in our life when it was “raining”, this was it.
I thought back to the long drive home from the neurologist’s office that day when we heard the news. Ann and I matter-of-factly discussed ideas of how to get through it. I told Ann that I would write post-it notes with little messages to remind me what to do and put them all through the house to help when I had forgotten. I told her that I didn’t want to have changes made to the house; rather, I would find a way to drag myself around the house to do what needed to be done. I had always been able to find a way to adapt to physical changes in the past. This time would be no different.
I told her that I would be very obedient and do everything she told me to so she didn’t have to worry that I was burning down the house or something while she was at work. I was determined that I would quietly take care of myself and not be a burden on anyone. I knew that I could do it.
I really just wanted to stay home more than anything. I wanted to be together.
Would we need to sell the house? Would she go bankrupt trying to keep me from just being a big mess on the floor?
Not just rain. A bitter monsoon.
Most painful was our family. We both agonized over what this would mean for our two children, Alex 15 and Nick 13. This was really their time of life when things were supposed to be new and exciting. They should feel like they could conquer the world, and be able to count on Ann and me to help set them up to do it.
The storm clouds and crushing downpour seemed to take away our ability to breathe.
I continued about my tasks at home for the next several days as if nothing had changed. I needed things to be normal. It was three days before I could bring myself to talk to my dad on the phone and tell them our news.
This made it more real and I realized that it was time to move forward, to plan, to prepare.
So, as I stared at this wonderful, piercing, simple statement:
Inside, I pulled my collar up and huddled my arms around my body. I ducked my head as the rain pelted down on the back of my head.
A cold, pelting, relentless rain.
Our once happy and safe-haven home became gloomy and unsure. It seemed that everything shouted out what was to come. It consumed everything and everyone. It was too much for any of us to bear. It felt as if we didn’t dare be happy. Somehow that meant that we didn’t understand what was to come.
After a while I slowly collapsed and lay face down in the mud with my hands over my head.
Things were going to get bad.
Things were going to get really bad.
With Hungtington’s disease, there was no hope. It went from bad to worse to the end.
Wait a minute. No hope?
I raised my head from the mud and shook the water from my eyes. I knew that wasn’t right. All my life I had felt hope. I had known hope. I had lived in hope.
There was always hope.
It just mattered what it was that I was hopeful about.
Perhaps I couldn’t change the diagnosis or what was to come. So why spend energy on what I had no control over?
What I could do was control how I went through it.
It wouldn’t leave my mind.
I’m so grateful that it wouldn’t.
I knew that this wasn’t the life that I wanted for my family. We had spent too many years together happy and laughing and learning and working together. All of that to just have things become like this?
This was still the time of life for Alex and Nick when things were supposed to be new and exciting. That hadn’t changed. They were still to feel like they could conquer the world. They needed us to help launch them on their way.
After all, they are only this age once; there is only one senior year of high school, only one period of band competitions and track meets.
They still could feel like they could conquer the world.
No, not still could. They still WOULD.
Slowly, I climbed up out the mud and stood up straight. With effort, I turned my head up and let the rain come at me directly. At first it continued the same cold, pelting, relentless rain. Painful.
But after a while, the rain that before had been so punishing and defeating, was now actually washing the mud off. Washing me clean. Making me better.
I squared my shoulders and took a deep breath. I faced it head on.
It didn’t take long, however, and quietly, softly, I felt someone brush against my arm and take my hand. Ann had come. As always, Ann had come.
We looked into each other’s eyes. No words were needed. She was being cleaned by the hard rain just as I was. We would face this and go through it together the best we could.
Hope in the things that mattered.
Not long after that we each felt someone brush against our outside shoulders and turned to see our children standing on either side of us, reaching out, taking our free hands.
Yes, this is more like it. This is what we do. This is who we are.
Smiling, we first began to hum and sway. Giggling at mistakes, notes were soon accompanied with words. Our voices called out in the pouring rain.
In a circle, together, we began to move in the mud. We began to dance in the rain.
The rain stopped and the clouds cleared. With tears on our faces we aimed our gaze at the bright sunshine and let it warm every part of our tired bodies. We were ready to move forward again, having weathered the storm.
I guess we thought that it was our turn to ride off into the sunset. We’d had enough rain to last a lifetime. We were done with it.
But clouds soon began to gather again as other things seemed to deteriorate. With rain again coming down we began working through diagnoses of mental illness in addition to the neurologic issues.
Just when we thought we had made it through.
But, maybe that is the point.
Life isn’t made up of all sunshine and warm summer days. Those days come, and they go.
And then it storms again.
The truth is there will always be another storm.
In the end, the thing that matters most isn’t whether it is raining or not.
It’s if we have learned how to dance.