"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.
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