When My Former Healthy Self Distorts How I Think I'm 'Supposed' to Feel Today

I struggle with language a lot. I struggle with definition of words (just ask my husband Adam about the “Petulant horseman of the apocalypse”). As I figure out what my diagnosis means to me and how to describe my condition to people when they ask, I find myself being very confused about terms like sickness, illness and disease.  

I don’t feel like I remember I used to feel. I kept looking back to the past like it was some sort of “gold standard.” I kept looking at a distorted past to compare and from that illusion decide how I feel and how I thought I was doing. This means I am still struggling with feeling and honoring my body as it is now.    

For example, I was at my physical therapist’s office last week, and she released me from care. She was amazed at the “transformation” my body has been through in the last 10 months, with two different therapists with different techniques. She kept telling me, “You must feel great; there is so much more mobility in your spine, in your pelvis, just in the entire body.” I really didn’t hear her at the time.  

However, while I was driving home, I kept hearing what she said. I started to consider what she was telling me. I keep looking to the past for a measurement of how I am supposed to be, of what healthy looks like; I keep thinking about all the things I am not longer choosing to do and realizing those choices helped me get here. Keeping the discipline of working out, stretching, resting and being ruthless about what I eat and don’t eat lead me to that moment when someone who puts their hands on people all day and asks them to move and use muscles is able to say that my body has “transformed.” I finally heard her.

I took the time to allow that to sink in, to really appreciate her world and understand where she is making that statement from. When I was diagnosed I was never promised I would be able to eat oranges again, that I would be able to do all the same activities I enjoyed before; my doctors, my therapists, my friends and other healers promised that I would transform, that I would change. My friends with experience with this condition or other chronic conditions promised me that I would slowly find things that helped, things that made it worse and eventually I would be a different person. No one promised it would be easy or smooth. No one said I would like it and that I would continue to experiment and learn for the rest of my life.  

So forget sick, ill or disease and let’s talk about what the word “healthy” could mean. Because I can decide if I am healthy, limitations do not change my health — it has just changed what healthy now looks like for me. If I look back to a year ago, I was teaching six yoga classes a week, two shifts at the advocacy center, two shifts at hospice, I was traveling, I was in this constant cycle of taking medications that were treating symptoms, and I was using food and all the activity as a distraction. Honestly, I wasn’t really healthy. My body finally got my attention and my life got to change.

What does healthy mean to me? Adam and I have time to play and relax, and it doesn’t matter where we are. I have energy and the ability to do the things that truly bring me joy. I am able to enjoy food. I have dreams that I am excited about and feel able to pursue again (not focused on the deadline, just taking steps.). I am able to take care of Adam, myself and the house to reasonable standards. I feel comfortable advocating for myself and communicating what I need. I have the space to recover and take care of myself.