Sorry that I’m a bit late in posting. Time zones & chronic fatigue = a later post.
Having a debilitating illness is hard. It’s worse if you’re young. It’s worse if it’s chronic. It’s worse if it’s invisible or misunderstood. But the point is: it’s hard. Period. No further words necessary.
Today’s post is about counting our blessings, about the good that has happened since illness struck (or even because of it.)
The biggest thing for me is that I was an extremely judgmental person. I don’t think my parents meant it this way, but somehow I grew up with very strict ideas about what being right was and that turned into me being a teenage judgment policegirl. I don’t know where I am on the spectrum from judgmental to discerning. I’d like to think that I’m fairly discerning. And I know that maturity has something to do with the change. I don’t really know. But I know for sure that illness has taken away the “extremely” in the “extremely judgmental” label.
Just writing this blog, I’ve been impressed by the people who’ve accepted my illness for what it is: hard. They don’t need to know the details. They don’t even need to understand what or how or why or when. People like Taylor and Timothy and Aaron. They hear my suffering, and they honor it.
I used to help teach character lessons to elementary school kids, and I had a lot of trouble understanding the character “honor”. I knew that Scripture commands us to honor the king and our parents. But besides that? I thought it was only for important people. Now I realize that there’s an aspect of honoring someone else’s experience. Recognizing their humanity. Loving them for being. Now I can sing this song with passion: I’d like to honor you. What can I do for you? I’ll stop and figure it out.
I’ve read a few people’s memoirs that reflect on this same point, and I’d like to leave you with some of their words:
“Thank you for wanting to know about me,” she said before leaving, a statement that would resonate in the coming years, when many people demonstrated that they would rather not know about what I was experiencing…. I was learning a difficult but powerful language of truthfulness that many healthy people find hard to bear. (Marguerite Guzman Bouvard, Healing: A Life with Chronic Illness)
If there’s a lesson here, and of course there is, it’s this: you are not your illness. You have an individual story to tell. You have a name, a history, a personality. Staying yourself is part of the battle.
…Given her prognosis, Sheila is a rare success story. But it’s not the end of the story that’s the only important thing. It’s how Sheila lived with her disease, how she developed a narrative of herself… in course of many shocks and threats and how she communicated all this to me and to the medical students. In the course of my long career, I’ve seen many people battle their illnesses, and I’ve come to see that each person writes a narrative as an individual, as a thumbprint. Some stories are about successful adaptation or, happiest of all, about conquering the foe; others are darker, more tangled, more troubled. But every story deserves respect. Every story has a real, actual teller, and needs to be listened to. (Julian Seifter, MD, After the Diagnosis: Transcending Chronic Illness)
It’s hard to be understanding, particularly when your life is difficult. Sometimes, there are moments when I just snap. Do I really care that your girlfriend distracted you from getting your homework done? Or that you’ve had a hard semester because your checking account went into overdraft?? Other times, dealing with a chronic illness makes me extremely sympathetic. One of my students this term was in a serious car accident (considering that no ambulances arrived on the scene.) I didn’t need him to describe the whole situation to me. I just wanted to know if his girlfriend was okay. And I was more than happy to give him a long extension on the assignment. I knew that he was dealing with a lot of people and a lot of emotions and a lot of money all on a tight time schedule; plus I recognized that he had other classes as well. It was easy for me because I’ve been there. Illness has made me more sympathetic (if still someone selectively.) I love what Laurie Edwards writes about this:
No one has a market on suffering. Though our perspectives are often quite different, the healthy and the sick are entitled to the same empathy and understanding from others when times are difficult. Of course what we each define as a “tough time” is always going to be relative, but that’s exactly the point: suffiering is determined by the sufferer, not by the observer. When people tell us they are having a tough time, we should try to be supportive friends or earnest listeners. (Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties)
I’m not here to say whether or not chronic illness is worth the pain and suffering for the character that is shaped from it. I still think I would run for the hills if I had a choice. But for me, it’s been important to recognize that everyone experiences hardships. They may be different. They may come at different times. But, the question is: do we gain anything positive out of it? Or is the whole experience in vain?
Let me know what you think. Write about the ways in which you’ve seen blessings in times of hardship. Post something on your blog or youtube channel or instagram or other social media platform. Post a link here with a brief description. I’ll post a summary & reflection late tomorrow based on all your suggestions.
Abigail Cashelle
P.S. If you post something on twitter, please include the tag #meaw2013
