A Day at the Amusement Park

I have this image in my mind – all of us are at the amusement park. We’re all in line for tickets to go on the rides. Some people choose to go on the Merry-Go-Round, some choose the Sudden Plummet Drop, some get in line for the roller coaster that throws you upside down and leaves your neck slightly out of line from the rest of your body, and some people choose to play it safe and keep their feet on solid ground altogether. For the most part, everyone has a great time at the amusement park. The Sudden Plummet Drop provides just enough of a stomach lurch to make you bypass the next snack bar but you recover quickly enough not to think twice before jumping at a second ride on it; the games are a good balance of frustrating and satisfying and those big teddy bears are always just out of reach for most; the cotton candy is sweet and the hamburgers piled high with ketchup and pickles.

But for some of us at the amusement park, somehow we get stuck on the wrong ride. Our tickets were for the go carts, but somehow we ended up on the roller coaster – the one that twists and turns, plummets down a huge drop leaving you nauseous only to whip around a turn so fast that you’re not sure where you left your stomach. And just when you think the ride is over and you’ll finally come to a stop and have the straps holding you in loosened to let you out on solid ground again, you see that you’ve only come to another mountain to climb inevitably followed by another hill to go down. For a while you think the ride is just temporary and after a while you’ll be able to get off and go enjoy the rest of our day at the amusement park, go have your ride on the go carts, have your cotton candy, and win your stuffed animals (or at least try). But after a while you realize it’s not going to be that simple. This isn’t going to be a normal day at the park. So you start looking around for someone to help, someone to show your ticket to so you can prove you weren’t supposed to be on this ride at all and there has been some terrible mistake. But no one is there to listen to the mistake that has been made. And you panic.

Perhaps panic isn’t the right word. Panic implies that one knows something about what’s going on with the situation. In this case, it’s more like anxiety or fear of the unknown. You are alone on this roller coaster car, barreling along this track through twists and turns, ups and downs, with no idea where you’re going to end up or whether or not the next crook will bring the end of the journey or just another neck-cracking bend. You’re isolated on a ride you never signed up for and you don’t know what is happening. Can you imagine this? This is what it’s like to live with a chronic illness.

But slowly…very, very slowly…you begin to see another car in the distance ahead of you. It’s on a path just next to yours and isn’t going quite as fast as you are, as though it has found a little more of a steady pace but still isn’t quite sure of it’s path. As you approach the car, you can see that there is another person in the car, looking just as alone and confused and scared as you feel. Eventually you come up next to the other car and give the other passenger a friendly smile, trying to make you both feel a little more at ease. You have never met before but you both instantly know that you have been through the same thing so you have an understanding and without explaining you are able to comfort each other. You don’t feel so alone, but still neither of you has any idea where you will end up.

Over time, you meet up with more cars. That same understanding is shared, despite the fact that each of us have come from different lives before we decided to come to the amusement park that day. Each car is on its own track with different twists and turns and hills to climb, but along the way the tracks run close together so we don’t feel so alone as we go through them.

Fortunately, this is what it’s like to live with a chronic illness when you have friends who know. They understand. It's hard to find friends in your real life who know what you're going through, they are few and far between. But in the world of online groups, friends are as close as your computer. And without ever meeting them they understand what you're going through. They’re there during the hard times when the ride seems never-ending and nothing seems to be going right. They’re there when things finally start to look up and you can celebrate that the ride is becoming a little smoother. And eventually you may be able to get off the ride altogether and enjoy a nice day at the amusement park with these friends. Maybe the break won’t be forever; maybe just long enough to get that cotton candy and maybe grab a game of ring toss, but enough to remember that life isn’t always about preparing yourself for the next obstacle. And in the mean time, the twists and turns, the hills and valleys all seem a little less difficult to handle when you’re facing them with people who really know what it’s like.

Yours,
Penguini

We Shall Overcome

On Sunday morning I was at church and had one of those moments where you just feel...something. There are different kinds of "somethings" you can experience during moments like this and I do have these moments fairly regularly, but they don't usually take me by surprise as much as this one did on Sunday. The service was our Martin Luther King Jr. service because our music director is going to be in New York City next Sunday when we would normally hold that service and the choir singing for this service is very important. The service itself was good but not especially moving, didn't have anything extra special about it. Sunday was our accompanist's weekend off so the music director, Jeannie, (who usually doesn't play the piano, too, although she's a really good pianist) was also the accompanist for all the hymns and other music. Since the service was in honor of Martin Luther King Jr. she chose hymns from that time to use for the prelude, offertory, and postlude.

When we came to the postlude - We Shall Overcome - Jeannie asked the congregation to join her and sing along. So we started singing, and then slowly we all stood up. I'm not sure who initiated it but everyone in the congregation started holding hands and swaying back and forth. Now this might all sound kind of corny, but I assure you it wasn't as corny as it sounds. And bear with me, I'm getting to that "something" moment. So we were all standing there, holding hands, singing this song that was written during a time when so many people were being persecuted, discriminated against, and fighting for equality and freedom. I wasn't unmoved by all this, but it was when we got to the third verse and I really thought about what I was singing that it hit me.

We shall all be free
We shall all be free
We shall all be free someday
I don't want this to be taken wrong. The original meaning behind the song is very powerful and the social rights movement was a very important part of history that I think we all need to remember and still work towards the ideal world MLK had in mind. With all that said, when we were singing the song and got to this verse about being free, all I could think about was how this song could be applied to my life and the lives of everyone else fighting illness, fighting to be free from the prison that their own bodies have become, fighting to live normal lives.

We are not afraid
We are not afraid
We are not afraid someday
We are fighting invisible (or at least microscopic or unseen) enemies that are within our own bodies. We feel betrayed by the very thing that is supposed to nourish and sustain us. Our lives have been turned upside down. And just when we've attached suction cups to everything and learned to live on the ceiling, everything gets turned over again and the world goes topsy turvy leaving us to figure out what to try next. We try humor. We try indifference. We try pushing through until our bodies scream out that it just can't take anymore.

We are not alone
We are not alone
We are not alone someday
But in the end, we just keep going on with our lives. We do what we have to do - take days (or weekends, or weeks, or months) to rest in bed; spend hours and hours hooked up to IVs; travel hundreds of miles every month to various doctors; take handfulls of pills that help us function and may or may not keep working. Our friends may wonder what has happened to us when we seem to drop off the face of the earth for months only to pop up looking like we're doing fine, but they didn't see us during those months when we didn't leave the house. And they don't see the screaming headache or the cloud hanging over our heads - these things are just invisible.

We shall overcome
We shall overcome
We shall overcome someday
So all this was going through my head at church as I was standing there singing this song. And the heaviness of everything hit me. I'm a master at repressing things, but every once in a while everything comes up in waves and the reality hits me. Sometimes I can predict when it will happen, and sometimes I can't. I certainly wasn't expecting this hymn at church to be a trigger.

Deep in our hearts
We still believe
That we shall overcome someday

Yours,
Penguini