Thoughts on Patience

Late last night, after my wife, my primary caregiver, flipped me on my side and made me comfortable, I said "Thank you for being so patient."

"Why do you say that," she said, or whispered actually, because it was three o'clock in the morning.

"I knew you were sound asleep, I didn't want to bother you. But you woke up without any complaint, adjusted my pillows, turned me over, and then you were so patient adjusting my mask," I replied. "Thank you."

"You don't have to thank me," she said. "I love you, now good night."

Conversation over... I knew she was exhausted and needed to sleep, but I had slipped into my usual routine of waking up in the middle of the night, uncomfortable physically, but alert and talkative mentally. My brain spins out of control at the weirdest times. I wanted to let her know how much her care and love meant to me—I was wide-awake. I could have talked for hours, but I knew she needed to rest. However, I had to say one more thing—you know the feeling when you always have to have the last word—surprisingly, she beat me to it.

"You're the one that's patient."

This simple sentence floored me. I had no response. I let the early morning darkness speak for me. Soon there were only the sounds of her quiet breaths and my ventilator humming along. I began to think about this concept— Patience.

Patience, an ability or virtue that most of us lack, has become perhaps the most important personality trait that I have had to master over the last six or seven years. It has become something that my family and caregivers have also had to understand and improve upon. Patience is the keystone to surviving the daily clash with the reality of our situation—without it, we would have given up years ago.

I struggle to be patient with myself. I pray that I am patient with my caregivers and that they have the strength to be patient with me. I have fought hard to remain patient with this unpredictable disease and the constant obstacles it throws at us. I find each moment is a battle over my need to control the world around me, and my lack of ability to do so.

I used to take it for granted that I could do things immediately, or even procrastinate if I wanted. When my body willingly followed every command that flowed from my active mind, I had the luxury of action or procrastination. Do you know the feeling? —it comes from the knowledge that you have the ability to do whatever you want, whenever you want. This is no longer true for my caregivers, or me.

Now, we have to choose carefully which things we want to accomplish. I have to prioritize and accept that I'll only be able to do this one thing, or that my caregiver will only be able to do this today, because the daily care that I require consumes all of the time and energy allotted in our 24-hour day. Little things like taking my medicine, eating, drinking enough water, taking a sponge bath, scratching an itch, going to the bathroom, getting into the wheelchair, or changing the TV channel, take precedence. The task of daily living is so much more complex and time consuming than it used to be.

Consequently, I have to relegate all those other things to my To-Do List—and let them sit there patiently, waiting their turn. This is not new. I've always had a To-Do List. This little trick has helped me stay patient, and organize and prioritize my days in the past. I used to take great satisfaction when adding or crossing things off my list—I still do. There is some magic in writing things down on a list that allows me to move on to the next task without worry that something will be forgotten—bizarre, Type-A behavior that I still cannot discard.

What's different is that my concept of this To-Do List has changed.

I've become much more selective about which things belong on this list, and which tasks can be forgotten or set-aside indefinitely. I've taken to heart the saying, "Don't sweat the small stuff." I've also come to the realization that the items on my list cannot always be completed by me—I now need the help of others to cross things off. This means that everything cannot happen at the exact moment that I want it to. I have to take into account other people's clocks and priorities.

Most importantly, however, I've become more patient about what's on the list. There's no push towards deadlines or to accomplish everything quickly. There is no anxiety attached to the "Need-to-Do-Now Task" anymore. In fact, some items on my list have been there for years and are actually comforting to me. This would have never happened before. These days when I look at my To-Do List the tasks don't necessarily represent things that have to be done, instead they represent the hope that I will be here tomorrow and that I will be able to do just one more thing—that will be enough.