This was written just weeks before Sarah had outward health manifestations in the form of tics, seizures, and mobility issues. Prior, she “looked fine” but felt so far from it. – Michael
I distinctly remember watching a video my husband taped of me approximately ten months ago. My mannerisms seemed poised, my speech resonated in an even pleasant tone, my thoughts appeared collected. But how could this be? I thought to myself, how in the world do I look like this when I feel like junk? Why is it not registering on film how difficult it is to formulate my thoughts and project them with a verbal command? That’s when I realized why people couldn’t understand me. I wouldn’t be able to comprehend me either. There has always been that strange dichotomy between how I look and what I feel.
My husband has lamented over this contrast in reality and perception. He’s seen my seemingly normal body drop to the ground to a thudding collapse. He’s seen the contorted look on my face when pain zings through my body. He’s seen how tiring it is for me to simply make a meal on some days, and how I accidentally slice into my flesh when my motor skills fail me. He’s seen the days where my body felt a decrepit one hundred years old, too stiff to move, too sore to propel my body into an active position. Those were the days he had to carry me to the dining room to eat.
He’s seen the apologetic look on my face as I’m forced to leave church service because of the frightening array of toxins that causes my airway passage to close. He’s seen me press on, fighting to do tasks of normalcy like washing the dishes when energy reserves were tanked. He’s seen the impending results of expending energy, finding me on the couch with whimpers of pain.
He’s seen the moments where I’ve struggled to read (my favorite pastime) as I finally placed the book down from a dizzying vertigo reaction. He’s seen the times where I’ve tried to pen a sentence, but the words couldn’t come. They were silenced by a malfunction in my brain. He’s seen the moments where I have pleaded with him to pray, still knowing God’s strength was perfected in my weakness.
He hears the lines that most will say, “I don’t understand what the problem is; she looks fine.”
He responds with a terse reply of, “You don’t understand. She takes pain pills and wears a mask with you.
She doesn’t fake her pain with me. When she’s really faking is with you. After she’s done exerting energy she doesn’t have with people, she collapses on the couch, paying for the price of expending energy she doesn’t have.”
I don’t write any word of this post for sympathy, dear heart. I’m naturally more private, reserving these thoughts to a journal stowed away on a dusty bookshelf. I’m sharing these words for several reasons:
- 1) To provide solace to those facing health issues that others don’t understand because of the strange dichotomy between how you look and what you feel.
- 2) To provide comfort for caregivers who feel alone in their thoughts.
- 3) Lastly, this is for those who are perplexed by people who seem fine but say they aren’t. This is in no way a judgment towards you, my dear heart.
Just as I was confused by my own appearance on video, I understand how it seems odd to see an individual who, by appearances, could only depict a picture of health.
I hope you have a small snapshot into life inside a home and outside a home with a person who struggles with chronic health issues and the strange dichotomy that may exist between how they look and what they feel.
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