Inspiration: Four uplifting lessons from chronic illness

In July, I shared my story about how attempting something difficult—physically, mentally, emotionally—prepared me for being a leader of conscience today. In turn, I asked our AoCC community to share their own stories and inspiration with us all. Many thanks to the brave souls who stepped up in this 8-part series!

Katie

What’s something challenging you’ve done or experienced?

2017 was the hardest year of my life. Shortly after inauguration day, I developed a serious complication from my chronic illness. It took months to get diagnosed and start on the long path of recovery. That year, I spent 97 days at appointments, including many trips to urgent care and the emergency room, two surgeries, and seven days as an inpatient. I was grateful for all the hardworking healthcare workers I encountered: nurses, doctors, radiology technicians and support staff who went above and beyond to figure out what was wrong.

What did that experience teach you or show you about yourself?

I discovered so much about what it means to be human. I learned that I am resilient and possess a core of inner strength that helped me endure months of deeply unpleasant experiences with grace and humor. My illness gave me a window into the suffering of the world, and more compassion and empathy to connect to those who are struggling.

I may never know what it feels like to cross several countries by foot to reach safety, but I have experienced hunger, exhaustion, and desperation.
I was incredibly lucky to have a strong support system. My family, friends, and neighbors stepped up; driving me to appointments, sending gifts and cards, and keeping me in their prayers and thoughts. I was surprised by the number of people who reached out, including acquaintances like my friends’ mothers and my mother’s friends. I was reminded of my place in a larger community. I had never before felt so connected to God and other people. It felt like all the love I put out in the world came back to me in spades.

How does that serve you as you engage in the work of social and political change?

I learned several lessons from this experience:

1. Always embrace moments of joy
They say that you see the stars most clearly on the darkest nights. The bright spots felt even more poignant and beautiful when everything else was so difficult. I started noticing good things and writing them down: Dreaming about finding four-leaf clovers. Seeing the soft beauty of freshly-fallen snow on an early morning. Witnessing newborn babies looking up at the sky for the very first time as they left the hospital with their parents. I cherished these moments, and they still fuel me today.

2. Small acts make a big difference
The little things brightened my days. My neighbor gave me a mason jar of freshly-picked flowers from her garden and let me spend time cuddling her dog. My best friend and her husband decorated my driveway with colorful chalk messages of encouragement, put streamers on my porch and gifts in my mailbox. My musician aunt sent me snippets of her rehearsals and performances that she recorded. An ER nurse squeezed my hand tightly, and a doctor patted my foot on the way out of the room. Each small act helped me carry on.

3. Your presence can mean more than any gift
We should take the time to show up for one another. I still think about the several hours I spent in a waiting room next to an older woman, who was anticipating the results of a scan that would reveal whether her cancer had returned. I sat beside her and we had a lovely conversation. She patted my hand and said, “You looked like you could use a mom right now.” When she heard I was having trouble with digestion, she reached into her purse and pulled out a packet of Lactaid. I carried that medicine around with me for months, not because it would cure me, but because it reminded me of the woman and her kindness, despite her fears about her own health. What a loss it would have been if we’d both stared at our phones, ignoring one another, instead of engaging in conversation.

4. Change is slow and not always linear
It can take a long time for things to improve. I live every day with chronic illness. I am better, but I am still not well. I imagine what it would feel like to live with perfect health, someday far in the future, and that vision motivates me to keep improving. I also envision a world of opportunity, equity and justice for all people, which guides me in my social activism. Neither vision may happen in my lifetime, but each informs how I live daily. I don’t take anything for granted now. I celebrate the small steps and gradual improvement, which keeps me hopeful and engaged.

Ready to take a small step? Check out this week’s Americans of Conscience Checklist.