…looking unto Jesus, the author and finisher of our faith… (Hebrews 12:2a NKJV)
THE STRAINS OF CHRONIC ILLNESS
As I approached the bakery section of Walmart, images of that week’s events replayed in my mind. A planned doctor visit here, unexpected symptoms there. A gambit of commitments met with vivid expressions of pain, totally unknown to those on the outside looking in.
After all that, I felt as though I deserved a slice of cake. It was sort of an end-of-week, you-made-it kind of a consolation prize for — simply surviving.
Never in my wildest dreams would I have ever imagined being here. Here, as in: mentally exhausted from adjusting moment-to-moment to physical and psychological symptoms of chronic illness, emotionally fatigued from the social strain that my unpredictable symptoms cause while fervently endeavoring to avoid isolation, physically going through what often feels like too much to explain (but I try), and spiritually stretched and challenged because illness doesn’t fit the misshapen narrative of errant American-based Christianity’s teachings.
COUNTING MY MARBLES
Despite all that, I endeavor to count my marbles. Marbles (or spoons) can represent the amount of energy that it takes for someone who has a disability or chronic illness to perform the basic activities of daily living. The average “healthy” individual begins their day with many more marbles (as their number of resources). Someone like me starts with just a few precious marbles.
These tokens of energy become strategic opportunities to allocate my time and attention, breeding intentionality and focus. However, this has been difficult for me to do. I’m so used to doing all that I did before the progression of the conditions I now have. Every diagnosis has served to remind me of how finite I am, and just how much I REALLY need God.
When I don’t count my marbles, I pay dearly. I spend days experiencing a deluge of symptoms. How frustrating this is for me! As my symptoms progress, the smallest activity adds volumes to the pain. At this stage in my life, everything is a gamble — but every day, I put my trust in God’s strength to keep me going. Then at the end of the week, I sometimes need a little reward, just because I didn’t give in or give up. Truth be told, sometimes I get tired of being resilient.
SAVORING MY BLESSINGS
Now you have a better understanding of why that little treat from the bakery meant so much. I savored each bite of that slice of vanilla buttercream culinary relief. I took note of the smooth refrigerated sweetness as it coated my palate, the breading conforming to its new place of residence…temporarily.
It’s funny how pain becomes the perfect agent for finding gratitude in the smallest of rewards and blessings. I have come to a point of savoring the blessings of life with chronic illness, things like being able to stand on a good day without the looming presence of vertigo, or going outside for a change of scenery and taking in the crisp (albeit humid) North Carolina air. These are two things I have taken for granted for so many years — but no more.
If I’m going to walk this thing out, the only way to grow in the storm is to continuously savor my blessings and count my marbles, while counting on the author and the finisher of my faith.
*First published at Journey To Better Blog, August 22, 2021. Published with permission.
Mayia is a 24-year-old content creator, podcaster, albinism advocate, chronic illness advocate, college graduate, musician, and entrepreneur. After years of living with chronic migraines and having her faith tested constantly, it is her goal to encourage those struggling in similar situations. Connect with Mayia: Instagram, Journey To Better Blog, and Better Not Bitter Podcast.
The Language of Pain
Sometimes what we experience because of chronic illness, mental illness, pain, or suffering can not only be difficult to explain, but also (for those who don’t experience it) difficult to understand. Metaphors can be a useful tool.