What Standing Barefoot on a Rock Meant in My Journey With Lupus
So, I climbed up on a rock yesterday.
Let me back up and explain why this is a big deal.
I have lupus and fibromyalgia and several accessory things that go along with lupus. (I also have narcolepsy, but it doesn’t figure into this particular story; I mention it because I’m trying to get used to being open about it.) The lupus manifested in arthritis starting around age 13, but I wasn’t diagnosed until age 28. That’s a long damn time, and I was an active kid. I rode horses for several years, including competing in college; I practiced Aikido for a few years; I earned a national certification in stage combat using full weight weapons and hard surface tumbling.
I wanted to do all these things and more, so along the way, I developed many coping mechanisms to deal with the pain, and the main one was simply blocking it out. I was good at that.
What happens when you start to block things out, whether it’s physical, mental, anything, is that: 1) you’re able to function despite what’s happening to you; 2) you begin to shut out other things. Just like a spiral, my pain was at the center, and as the senses moved outward, I started to block out other sensory stimuli. Someone might touch my shoulder to get my attention and I wouldn’t notice. I could shake hands with people, feel them squeeze the bones in my hand together and keep a smooth face.
I did it because I had to, just like everyone else with an injury or chronic illness. I’m not special in that way, not at all. We all fight through things and most of the time, no one else knows. We do it because we have to, and also because we want to keep going, keep doing what we’re doing.
You can’t cut off one thing without other things following, but because the brain is great at protecting you from some truths, I didn’t realize how much of my sensory perception had become completely dormant.
I started over (for the 412th time) this past August. I set a goal of 2000 steps per day, and decided that once I could walk that amount without getting too much pain, I would up the goal by 100 steps.
I haven’t hit it every day, not even close. But yesterday I upped my step count again, and now it’s 3250. And then, last week, a wonderful thing started to happen. I was out walking, and suddenly I just realized I could feel the breeze wafting through my fingers. I kept walking, and I noticed a hill. And I looked at it and actually thought, I wonder what it looks like from up there, could I climb it? Maybe I could climb that. Maybe I want to climb it.
I didn’t climb the hill, but yesterday I was looking for a cool place to take a picture, and I drove to a park that has these beautiful metal sculptures. I had forgotten that they also had large rocks scattered all around for kids to climb on. I climbed up on the smallest, flattest rock to see if I could get a picture of the sculpture I liked. I didn’t like it, and I looked around for a second, and I found another, much larger, very craggy rock. And again I thought, I wonder if I could climb that.
And I did. And once I was up there, I thought, could I take my shoes off? I felt like I was asking permission from the universe. But also, for the first time in years, I wanted to know how it would feel. And I took off my sneakers and socks (while still standing on the rock). I had to be careful, it hurt, it took balance and I was very afraid of falling, but my bare feet on that rock felt exquisite.
We lose so much with chronic illness. Sometimes the changes are sudden, huge and shattering. Sometimes they are slow and insidious, but they are losses that leave us wondering who we are.
Yesterday, I became a person who could climb a rock.
Today, my right leg, ankle and foot are highly pissed off and I’ve been on the couch icing and stretching all day. But it’s all right. I can see the future again.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via Thiago Santos.