Sharing My Story
April 7, 2024
Thank you to everyone who has read and shared In The Space Between.
I can tell when someone finished my book because they greet me with tears in their eyes, a huge hug, and say “I had no idea how bad it was.” In the first year, I was too sick to talk much, let alone find the words to describe what was happening, plus it was emotionally defeating to voice how bad our situation was. I know it’s hard to read page after page but I felt it was important to be honest and detailed to build empathy and understanding around the severity of a diagnosis of long COVID.
I’m repeatedly asked by readers, “But how are you doing now?” Well, way better than I was. I visit the reality of my functioning level compared to a non-disabled person only when I’m forced to by doctors, disability certification, or when making plans with family or friends. I can’t live there, it blacks out my rays of hope.
I’d rather think about how my district found a way for me to go back to work where I get to help kids who struggle with math and hang out with my colleagues who appreciate my help and always make me laugh instead of the high school senior teaching internship student who teaches better than I can.
I’d rather think about the smiles I share with senior citizens at the rec center when I work on improving my balance and strength instead of the fact I only have energy to shower every other day.
I’d rather think about the sun, pool, and seeing the ocean and going to Kalamazoo to give Caroline hugs instead of the pain and isolation when I can’t walk or talk afterward.
Research for a cure and comprehensive treatment is slow going and far off. Sometimes doubt creeps in and I wonder, “Is this as good as it gets?” Then I remind myself there’s always hope until the doctors tell me there isn’t. Currently, I’m working with a functional medicine doctor to rid my body of mycotoxins (if anyone is interested in the biology/physiology of it, I’d be happy to share the details but please don’t ask me to explain, it is way beyond my cognitive ability). Detox is no joke but fingers crossed for marked improvements by summer.
I am beyond grateful so many shared my book with those who need it. Keep spreading the word, it is helping people I’ve never met. Here are some messages I’ve received:
“So I am not crazy! Thank you for writing this.”
“Your story and overall positive outlook is an inspiration! You gave me the courage to attempt to try to go back to work, even if it’s not in the same capacity.”
“Your book describes my daughter’s Long COVID experience in so many ways.”
“I cannot thank you enough for putting into words what has been such a struggle for me when people ask me about it.”
I continue to be in awe of your love, hugs, and encouragement. The support I’m surrounded by gives me the strength to live in light and not be overrun by fear.
