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 an able, capable human.
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.
We with chronic diseases dream of normalcy: waking up pain-free, foregoing medications, eating what we want, planning activities without fear, working 9-5, raising families, growing old…. These may seem simple and mundane for some, but to us they would be profound and life-changing. We dream of an existence taken for granted by those who have their health.
We 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 our bruised and foggy minds, but we do still dream. From Paris to skydiving; we dream of having extra breath to do more than just survive – we want to live! But our 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.
We want freedom. Freedom of movement outside our own bodies. Freedom to function without fear of our bodies turning on us. Freedom to control our schedules and our energy levels. Freedom to have careers, families, hobbies. Freedom to travel. Freedom to escape from our own bodies.
Instead we are stuck inventorying our energy to get through today. Bucket lists will be bucket lists, but ours juxtapose simple health with exciting adventure. We hold these equally tantalizing wishes like fine sand; we watch as health and adventure are taken by the wind.
We dream of so much more than this.
I dream – and mourn – the old me.
It’s a grief I don’t know if I will ever recover from.
And travel? A drive 30 minutes across town about kills me. I don’t dream of Paris anymore. What’s the point?
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