The Dreams I Have for My Life With Chronic Illness

I want to go to the doctor one day and once again check the box on the intake paperwork that says “generally healthy.” The once robotic maneuver of sliding my arm smoothly down paperwork to check off a straight line of boxes is now a chore requiring concentration and an agile hand zigzagging across columns.

Having the opportunity to check that “generally healthy” box would reinstate my self-worth as a physically able, capable human.

woman in red skirt dancing in a valley near mountains
Charis at Burning Man, 2016

This dream is on my bucket list between trips to Hawaii and Zamibia. But the dream vacations do not get much attention – I’m distracted by the more immediate and unrealistic desire for good health. I’m waiting with open arms, but I don’t expect this invitation will be answered.

As someone with a chronic disease, I dream of normalcy: waking up pain-free, foregoing medications, eating what I want, planning activities without fear, working 9 – 5, raising a family, growing old… These may seem simple and mundane to some, but to me they would be profound and life-changing. I dream of an existence taken for granted by those who have their health.

silhouette of woman walking with her cane in a valley looking at mountains and sunset
Charis at Burning Man, 2016

I also dream of more than simple things.

Wishes for international trips and other considerable “run of the mill” bucket list items often fade to the back of my bruised and foggy mind, but I do still dream. From Paris to skydiving, I dream of having extra breath to do more than just survive – I want to live! But my permanent disease state threatens an incapacity to even plan such invigorating experiences. I love to travel. I love to have adventures. My body doesn’t.

I want freedom. Freedom of movement outside my own body. Freedom to function without fear of my body turning on me. Freedom to control my schedule and energy level. Freedom to have a career, a family and hobbies. Freedom to travel. Freedom to escape from my own body.

Instead I am stuck inventorying my energy to get through today. Bucket lists will be bucket lists, but mine juxtaposes simple health with exciting adventure. I hold these equally tantalizing wishes like fine sand; I watch as health and adventure are taken by the wind.

I dream of so much more than this.

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