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What It Really Means When a Person With Chronic Illness Decides Not to Walk

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As I muse on my change in circumstances with postural orthostatic tachycardia syndrome (POTS), I run my situation through various lenses from my studies of anthropology to my stores of fantastical tales. I find myself in the land of bipeds. Our predecessors made great headway when they began walking on two legs, allowing for their hands with opposable thumbs to work on tool use. I watch my nephew crawl over to a table and lift himself up while the family cheers him on, encouraging him to stand on his own. We speak of strength and courage metaphorically as “taking a stand” or “standing one’s ground.” Standing is part of what makes us human.

Standing makes me weak. The longer I stand, the less blood is in my head and the more blood pools towards my feet causing my body to get weak and my mind to grow foggy and distant. The ground begs for me to embrace it, for all I need to do to seek relief is to let go of standing and to get horizontal, to lie down and take the burden of gravity off of my nervous system, my heart, and my veins. And if I do not lie down in time, my body will surely give way and come crashing to the ground. In the land of the bipeds, lying down is akin to giving up and failure, yet this is where my strength and clarity lies.

I am changing, slipping away from the upright human biped I once was. I have fought, kicked and screamed. I have gone to doctor after doctor, received a variety of treatments, and followed the directions of doctors. There is a perception that doctors can treat and cure diseases and conditions and that if a person is not healthy, it is because that person is doing something wrong — that they are responsible for their own demise. It makes people feel safer to believe that, but of course it is not true. You can do everything right and still be sick and still get worse because the field of medicine is science and not magic. There comes a time when one has to stop kicking and screaming and move towards acceptance and adaptation. If anthropology taught me anything, it is how strong the drive for life is and how adaptation is the key to survival.

My adaptation is to lie down and to you bipeds, this may look like giving up, but it is not. Professionals, family, and friends alike wring their hands that my body will atrophy and I will waste away to nothing. No. I have a physical therapist. I am exercising, but I do so while lying down. I know walking is our primary means of locomotion. I use mobility aids. I use a wheelchair at times. Wheelchair use does not mean that I cannot walk or that I will get “too” dependent on it and waste away. Please understand that every time I walk, I feel very ill and I risk injury from falling. I want to go outside. I want to feel the sunlight on my skin and the fresh air in my lungs. I want to be part of life and I can’t always do that on my own two legs. I am so tired of feeling faint and falling. When you see me in a wheelchair, please see that I am actively engaging in life — I am adapting. I can still exercise, but it doesn’t have to be upright, it doesn’t have to be walking. If you see me in a wheelchair one day and walking the next, please recognize the variability of my condition and that adaptation is custom fit for each day as it comes.

The daydreamer in me thinks back on the story of the mermaid who so desperately wants to be part of the human world that she wishes for legs. Depending on which version you read, her success varies, but in the original, she is returned to the waters as sea foam. I grew up walking through this bipedal world and now see myself more and more in the metaphor of the mermaid. As much as I want to walk, skip, and run through this world, to be a part of it, I need to find another way. There is no magic sea witch or prestigious doctor to grant my wish. 

So, I will be a mermaid in the land of bipeds. I will give my body what it wants and recognize that my body doesn’t work like everyone else’s. I will adapt and find methods to be fit in my own way and use mobility tools when needed to stay engaged in this world. It may not be conventional, and many may question why I have “given up” or “let myself go,” but I will know that my choices reflect my resilience and strength.

The next time you see someone with chronic illness or disability and question their choices, please take a moment to reflect on what it might be like to live as a mermaid in this world. What would you do to adapt and how would it feel to have others expect you to be something you simply cannot be?

Follow this journey on Chronic Gravity.

Originally published: September 16, 2016
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