The Wrinkled Routine

I don’t like wrinkles. I’m not talking about the ones that you get as you age, in spite of the thousands of miracle creams that claim to erase these smile lines. Because those are inevitable. I’m talking about the wrinkles we can control. Like the wrinkles in our clothes, or in our bedding, or in a cozy, warm throw, even the wrinkles in our everyday life – the bumps, the hiccups – we have some control over. Because we can choose how to respond to them.

When you are paralyzed, you become very aware of wrinkles. The gathering of fabric on your skin tickles. And try as you might to ignore it, you can’t help but feel more and more agitated by it. You desperately want to pick up your hand, rearrange the blanket, or your waistband, or your t -shirt, but you can’t. The more you lament over the situation, it seems like the wrinkle gets bigger. This applies to pretty much everything I put on my body. From socks to shorts to t-shirt to blanket, heck, even my hair sometimes feels wrinkled on my neck. But I’m not the one to fix this annoyance. It falls on my caregivers. And for them, it is equally annoying.

I know I’ve already spoken about our evening routine, so I won’t repeat all of the details. But it’s funny, in a way, how one wrinkle can alter an evening, a routine, and the overall energy. Every night, when the boys put me to bed and complete the routine, as they leave the room, they turn around, blow me a kiss, and tell me they love me. That’s the last thing I see before I close my eyes and go to sleep. One night, after an ugly coughing attack, I vowed not to speak to prevent any further issue, and so the routine was done in silence. This time, as the boys were getting ready to leave, Nick turned around, looked at me, and put his hands together in the form of a heart. The thumbs touching at the bottom, and the other eight fingers curved to create the top of the heart. It touched me, and in that moment, I couldn’t feel any wrinkles. Not in my blankets, nor my pajamas, nor even in my life.

In stark contrast, last week was different. Obviously, I blogged about my very difficult, no good, very bad Monday. But, as I said in that entry, I woke up to see another day. And then another. And then another… and each day seemed to get a little bit better. ALS has handed me the biggest wrinkle in my life. And so it wasn’t long before the disease started to take hold again. I could feel the wrinkles. I could not fix them. I was frustrated. And I was taking it out on the people who were caring for me the most. As the first blanket was thrown on top of me, I chirped with irritation, “Get the wrinkles out.” I said it first in a very firm, but calm manner. They all pulled and tugged in an effort to make me comfortable. But it wasn’t enough. I questioned how three of them could not see the one giant wrinkle that was in the blanket covering my knee. Irritation crept into my voice, and now I was being sarcastic. “How can you guys not see that giant wrinkle? One of you must see it. You’re not blind.” I could see the hurt in their faces, but they dug some more in that first blanket until it was as smooth as a lake on a crystal-clear morn.

But then, blanket number two came. And then three. And yes, then even the fourth blanket. That’s how many blankets I need to keep me warm at night. Kind of ironic, since we leave in sunny Southwest Florida. But my circulation is so poor, and I crave the warmth. Each time a blanket was put on top of another, I moaned and groaned about the wrinkles. And I could see the exhaustion on their faces. But I wasn’t thinking about them. I was only thinking about myself. And once everyone thought the blankets were perfectly in place, I threw them a curveball, because my shirt needed adjusting. A wad of material had formed just above my belly button, probably from all the pulling and tugging of the four blankets. So, Brian reached under the blankets to pull the t-shirt, which caused the blankets to be disheveled again. We had now been at this task for well over 10 minutes. My team was tired. I was frustrated. And I hated ALS at that moment. The one wrinkle out of my control.

But putting all those wrinkles aside, as the boys went to leave the room, I closed my eyes briefly, and when I opened them, they were gone. The door was shut. And the room was dark. I knew I had crossed the line. Did I demand too much? I felt sad, and I wanted to call them back in, and tell them we could start over again. We could smooth out the wrinkles in a more loving manner. And I could get back that overwhelming feeling of love as they turn and blow me a kiss goodnight. The funny thing is, I did bring it up to the boys the next day. I think it was my attempt to apologize for my behavior. But I told them how much it hurt that they didn’t turn around and blow me a kiss.

“But we did, Mom,” they said. “Your eyes were closed. And we just wanted to let you have time to yourself and give you the space you needed. But we would never leave the room without telling you how much we love you.” All of this made me feel better. Wrinkles are really not the enemy. It’s our perception. And I realized, in that moment, that I would rather have blankets one through four be amass with wrinkles, then miss out on the love my kids show me day in and day out, while we all, as a family, battle this horrible disease.

Look at your own life and smooth out the wrinkles you can. Tolerate the ones you can’t. Because love really can iron them out.