Usual or Ordinary : Not Strange

Normal is a relative term, as far as I am concerned. Webster’s dictionary defines it as: 

Usual or ordinary: not strange

Mentally and physically healthy

When you become the caretaker or loved one of someone who has a life altering or fatal illness this is the first thing that changes: normal. People don’t tell you that. They just tell you to hang on and live through the ride. But the ride never really ends. It’s like perpetually riding The Superman at Six Flags backwards. You think it’s going to end. But you can’t really tell because you can’t see in front of you. Likewise, you don’t usually have the time to stop and analyze what’s behind you, because the ride is going at warp speed. And you have no clue if it will ever end. You keep thinking of when things return to “normal” what you will do. How your life will be normal again and you can go out with your friends or return to work without fear of having to run out of the door at a moment’s notice.

I’m going to be honest. You won’t have that normal again, probably ever. But there will be new normals. And they will be scary. They will maybe include hospital stays and ventilators. They may end with you sleeping in an intensive care waiting room. They may leave you calling work saying “I’m not sure when I’ll be back in the office.” But you’ll figure it out. And you’ll learn to embrace them. 

For instance: Normal to me used to be stopping by my parents house a few times a week to say hello. Or trying to dodge Dad when he called to tell me he had made me dinner and I already knew I had plans with friends. When Dad’s second brain surgery went a bit less than stellar, my normal became sleeping in the waiting room of The University of Chicago’s NeuroScience Intensive Care waiting room. The room was built like a small closet and didn’t even have a couch. You get inventive.

Normal, until then, had been sleeping alone with my dog under the covers and my cat startling me awake as she flopped down from the closet onto the bed. My new normal was seeing how imaginative I could get with two plastic chairs and a hospital blanket for a pillow. I’m not above telling you I built forts. Or that I sometimes didn’t get up to pee when I needed to because another person from the waiting room might steal my spot next to the electrical outlet and I needed to charge my phone.

The important part is that things don’t have to be normal for you to live or even for you to thrive. I didn’t experience normal in the way that I used to when my timed coffee pot would go off before my alarm and my room would be filled with the smell of coffee by the time I hit snooze the second time. But I experienced it in the way of going to the Au Bon Pain that was located on the main floor of the hospital and having coffee at 6 am with my mother in the waiting room. And those moments are just as precious to me as the extra minutes of sleep used to be.

Again, I had no idea when the ride would stop or what would come next. I just knew I was waiting for normal. I yearned, at the time, for normal. Now I just wish someone would have told me to stop wishing for normal. And realize that nothing is normal. Nothing is the same. Life is like a roller coaster ride, no matter what you’re going through. But going through a life altering illness with a loved one is like riding it backwards. And you can’t distinguish when the ups and downs may stop. You don’t know if the conductor has left his post and if you’ll ever get off. And then that? That becomes your new normal.

You’ll learn to navigate the ups and downs. And when the ride switches directions? You’ll learn to hold on and you’ll make a new normal. Maybe one that even includes forts! (Now, be a dear and don’t let anyone steal my seat…I’m going to go get a coffee.)