Ambitious, competitive, and hardworking are words used to describe Cindy as she rose to the top of her class. She earned several prestigious opportunities including a crème da la crème fellowship. It was a success story in the making until the bottom fell out on her.
The demands of performing at a formidable level took a serious toll on her body. Before she knew it, she was having heart surgery and learning she had a brain tumor. Her life was in danger and she began letting go of opportunities she worked for years to get.
Overtime, Cindy would relinquish so much more, as she learned she had a rare inherited disorder called Ehlers Danlos Syndrome Hypermobility Type (hEDS). It is essentially a defect in her collagen or her glue that holds her body together. This condition is best described by Melissa Drennan, another EDS patient, who says “It’s like riding a bicycle with very loose bolts.”
It is a never-ending fight against exhaustion and she never feels normal. It effects more women than men and many patients with hEDS end up having a long list of medical issues because nothing functions correctly in their body.
Cindy says “The worst part is it is unpredictable. I don’t know from one day to the next how I am going to feel.” She can no longer work and doesn’t feel like she can volunteer either. She believes she is too unreliable.
Her fatigue requires frequent breaks and by the evening her symptoms are so debilitating she is almost in tears. Her kids say they are tired of having a sick mother. They get angry. Her young children want time with their Mom and they want to do normal family things like go for walks, read books and play together. Yet, it is likely by the end of the day, they have not done any of them with her.
Most of her days are spent trying to adapt, overcome and find a way to be a good mother and wife. Heroically, she gets out of bed every day and embraces life with humility. What she may lack in health and professional accolades she uses to build strong bonds with her family and friends.
Her connection with her kids is so strong, they willingly contribute to the daily to-do lists to get any time they can with her. Her spouse loves her so much, he works all day and comes home to fulfill the needs of the household she physically cannot do. Relationships like this are rare in families these days and she spends every ounce of energy she has on them.
Her ability to feel as though she is inadequate has given her the opportunity to love in ways not possible if she stayed in an arduous career. She pushes herself to live life not about money, educational degrees earned but how she impacts others.
C.S. Lewis once said, “True humility is not thinking less of yourself; it is thinking of yourself less.”
This Mom may not be able to walk in the woods carrying a 40-pound rucksack taking on the world anymore. She has found a better way to spend her time by inspiring others to be more compassionate, encouraging them to understand invisible illnesses do exist, and persuading them to take to heart how important it is to do what you can for your family and community every day. Simply because it is where the best of life lives.
Originally published at medium.com