When I was diagnosed with Myasthenia Gravis several years ago the biggest loss I experienced was my sense of self worth. I felt so broken that I couldn’t believe I was still loveable.
Last night I did what I do every night as the day winds down, I mentally went through my day and noted all the things I didn’t get done. The list was long. The tasks should have been easy. I felt like I had failed at life, and this was a familiar feeling because this is a familiar routine.
Crossing the threshold of being disabled myself has been such a privilege and a joy because it has transformed the way I can connect with people. Even if our diagnoses are wildly different, and our bodily experiences seem to have little in common, there’s still a deep understanding of what it is to live in a way that doesn’t always fit the systems of our world.
Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.’ ‘Sir,’ the servant said, ‘what you ordered has been done, but there is still room.’ Luke 5: 22
Much of the rhetoric in our society about pain suggests that it can, and should, be used as a catalyst to become stronger. But why is strength the goal? Is weakness always a problem?
I want everyone to have the experience that I had that day – to be in a space where there is true love and acceptance for each member. Where people show up with their whole, unedited selves and are embraced.
These two stories may seem quite different – in the first I was overlooked and in the second I was singled out – but the experience of both was similar. Sitting on my walker meant that I was perceived differently than the people around me.
I laid in my stretcher outside the operating room listening to the metallic clink of the doctors preparing their tools and I gave my fears, hopes, and doubts over to God. I had connected with family and friends. Made sure people knew I loved them. The odds were good I would see everyone again but my health had been declining steadily for two years and I didn’t trust my body anymore.
The Psalmist says “you knit me together in my mother’s womb” which depicts a sculptural process of knitting an intricate and individual item. Knitting is flexible, sculptural, but not terribly efficient. It’s a loving form of art where the artist spends time with the project, enjoying the process of creating.
He was middle aged, had Down Syndrome, and spoke no English, but he said hello and quickly answered my introductory question about how long he had worked in that shop. I apologized for not understanding his answer and he realized that I was at a disadvantage in this conversation.