I just took this pic of myself about 30-minutes ago. It’s hard for me to imagine how this pic might look to you, whether you know me personally or not – maybe nothing looks amiss at all. But, to me, this pic is a visual message of how my nerve disease, CRPS, shows up for me sometimes, like today. I can see my illness, exhaustion, and poor state of health today in my face – largely in my eyes. Our eyes are the window to the soul, as the saying goes.
I just watched a 2016 documentary called Gleason, which tells the story about former NFL player Steve Gleason’s diagnosis, progression, and life with ALS. It is an extraordinarily well-done film and I would highly recommend it. After watching it, I was inspired to take this pic of myself and post it here, as a way of highlighting that this is what I look like sometimes. Some days I am bed ridden. Some days I’d rather have the energy and ability to be outside enjoying the sunshine, like today, but I don’t. Some days my pain levels are higher than my mental capacity to physically rally myself – though it is rare for me, anymore, to experience a day when my pain levels are higher than my mental capacity to spiritually and emotionally rally myself.
Physically my body may be weak and sore today. But in learning the art of resting (yes, it is an art for sure), I am able to do so much awesome and amazing stuff in my life, during the days that I am afforded more energy and better health.
The documentary showcased for me the possible benefits and power of sharing our story, which is something I still struggle with, personally. As a writer and a mindfulness practitioner, I am still uncertain as to whether documenting and getting involved in advocacy work is the direction that speaks to me, in regards to being someone who lives with chronic pain and illness. What is clear to me, is the importance of showing and sharing about all the sides of ourselves. To be authentically who we are, in our own skin. So on that note, this pic is what I look like sometimes.
Things that are helpful for me to keep in mind:
- No one totally is as they appear.
- We’re all human – we all have our challenges and heartaches and strife.
- We all judge books by their cover – and we’re all always wrong about our assessment.