Change of Plans

My most recent hospital visit left me with some anxiety.

I have a “planner personality,” I want to know there is an actionable agenda in place to make progress forward. But, this is nearly impossible to have when my body is constantly throwing new curve balls.

A long time ago I wrote down what I wanted for my life. It was a long, elaborate plan I created and knew I could fulfill if I worked hard. But what did I want the most? An acceptance letter to an esteemed university of my choosing. 

In 5th grade, I made a list of my desired universities. I told myself everything I did prior to high school graduation would help admit me to the school of my choosing…

  • I needed perfect grades, so I got them.
  • I needed to complete challenging AP courses, so I did. 
  • I needed (and wanted) to participate in enriching extracurriculars, so I did.

My hard work and focus were paying off. I was well on my way to a life of adventure and growth.

The beautiful life I wanted, and was actively earning, was taking shape. Then I became sick, and everything feels off course now. I hardly know what my next two hours will hold, how could I ever make a five-year plan? 

Traveling used to be a real passion of mine. My plan growing up was to travel abroad and maybe even attend college in Europe for a year. Now I feel unsafe even leaving my home. 

  • I can’t even wear a seatbelt in the car because I have to lay flat. 
  • What will I do if something bad happens with my health and I can’t get to a hospital that is familiar with my case/has my rescue medication on hand? 
  • What if my family isn’t with me when my body shuts down because of pain, and I can’t get words out to communicate to the health care professionals? 
  • Will I always have to ensure that I am near a hospital at all times? 
  • What if medical professionals at a hospital do not understand EDS or don’t believe me because I don’t fit into a mainstream diagnosis box? 

The fact that I have to worry about physicians (outside my current medical team) believing my level of pain is heartbreaking. But, we can talk about that later. 

Here is what I know and what I will leave you with…

Grieving my once healthy self is a long and challenging process.

Finding mental peace is a rarity because I do not trust my body. 

I feel betrayed by my own body.

There is little I can do to reduce my pain.

But, I believe I am a fighter…

I believe I am capable of changing the plans I need to.

I believe I can achieve what I set out to. 

I believe my life can, and still will be, beautiful.