This Body

What is it worth to stand on your own two feet? To run to your baby when she’s crying? Scoop her up and rock until her sweet slumber leaves a wet mark on your shirt?

 How much would you pay to answer the call of your wanderlust? Get in the car and drive. To nowhere. To anywhere. Heat blasting, windows down, music drowning your worried mind. Drums beating the last thought of how it was, who you were. When you could.

 When you could run. When you could drive. Could stand without wobbling. Carry a sleeping baby. Dance with your wife.

This body has a price. Paid in advance. Each cell a remittance. Offerings for time.

Hold the decay just awhile longer, so I can drive her to soccer practice. Teach her to bake brownies. Run to her when she’s scared.

Slow the progression, so my wife doesn’t have to dress me yet. Lift my legs into shoes. Carry me to the shower.

 So I pay.

 $130,000 a year infusion, after 3 years stops working, because medications are made to make disease chronic, not cured.

 I pay.

 $3,600 a year in supplements, because ashwaganda is good for inflammation and the western meds make me nauseous.

 I pay.

$6,000 for electric stimulation cuffs, so my nerves fire even when my brain doesn’t tell them to, because the cuffs have been in use for 15 years, but Medicare still considers them “experimental”.

 I pay.

$3,000 to install hand controls in our car and take driving lessons to learn, because cars are manufactured for the able-bodied.

 I pay.

$1,000 a year so the vertigo and double vision don’t take away 3 days of living. For the fatigue to dissipate enough to watch a show with my wife on the couch. I can stand with my AFO ($500) and ankle supports ($50), and walk to the next room with my rollator ($300).

 I pay.

$480 a month for 3 sessions of physical therapy a week. If I’m consistent maybe I can close my eyes in the shower?

 I pay.

How much would you pay to stand on your own two feet? What is health – care worth? This body has a price.

How does the toll of your illness/disability manifest - financially, emotionally, physically, psychologically? What role does creativity play in how you encounter those tolls? How can you mitigate the impact?