Change Your Shirt
I was walking down a grocery aisle when I saw a woman coming toward me with a big smile. "Hi! It's so good to see you. It's been such a long time." I smiled back. "It's nice to see you too. Yes, it has been a while."
The truth? I had absolutely no idea who she was. Maybe you do this too, but I think I store people in my memory by context. I remember where I know them from almost as much as I remember their faces. If I see my doctor in the grocery store instead of wearing a white coat, it takes me a minute to figure out who I'm talking to. The woman turned out to be my daughters' pediatrician. If she had been wearing her nurse's uniform, I would have recognized her immediately. If she hadn't emailed me the next day to tell me how nice it was to see me now that my girls were grown, I might still be wondering who she was.
That little encounter made me realize we all respond to visual cues more than we think.
I have several T-shirts with sayings on them. One says: "Underestimate me. That will be fun."
Another says: "I have IBM. It does not have me."
I reach for each of them on different kinds of days. If I wake up feeling depleted from the day before but have somewhere to go that will require energy, I wear the "Underestimate Me" shirt. It reminds me—and everyone else—that I am more capable than I might appear. It also gives people something to comment on besides asking, "How are you?"
That has become a surprisingly difficult question to answer.
Compared to what?
Compared to yesterday?
Compared to someone else with IBM?
Compared to a healthy person?
I know people ask because they care or because it's the polite thing to say. Most aren't looking for a detailed medical report any more than I want to hear about someone's gallbladder surgery from last week. "How are you?" has become one of those social customs that helps us move into a conversation.
Lately I've heard another phrase over and over. "You look really good." I always smile and say thank you. But sometimes I wonder what they expected. A shadow of my former self? A list of complaints? Most people don't know what to say when someone has a progressive disease, so they reach for familiar phrases. I understand that. They mean well.
On the mornings when my muscles are especially weak or I'm feeling vulnerable, I wear my "I have IBM. It does not have me." shirt. That shirt changes me. It reminds me that I can choose to think like a warrior instead of a victim. It's my version of Superman's cape. I've learned that something as simple as changing my shirt can change my day. If I look down and realize I'm wearing something that doesn't make me smile, I change it. Sometimes I simply put on my bright turquoise shirt because the color lifts my spirits. It sounds silly, but it works.
Changing my day doesn't always involve changing my clothes.
One afternoon I was resting on a bench outside a store when I noticed a young boy sitting on a nearby bench. I smiled at him, and he nodded back. Then I asked, "Would you have time to help me cross the street? The curb is high, and I need help getting down off this one and up onto the one across the street." He jumped up immediately. "I could do that for you," he said. He walked beside me until I was safely across, then returned to his bench.
As I watched him, I noticed something different.
He was smiling. He was greeting people as they walked by. One small act of kindness had changed both of our days. His willingness to help made me feel safe. My asking for help gave him an opportunity to be kind.
I've discovered something else since living with IBM. Whenever I begin to feel useless or discouraged, I look around to see if there is someone I can help. Sometimes it's making a phone call. Sometimes it's writing an email. Sometimes it's listening. Sometimes it's simply smiling at someone who looks like they need one. Helping someone else reminds me that I still have something valuable to give.
So on the days when life feels especially heavy, maybe the answer is simply this:
Change your shirt.
Change your perspective.
Change someone else's day.
You may find that you've changed your own.
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
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