The Stairs

"Privilege is a headache that you don't know that you don't have."

~Ani Difranco 

I remember playing on the stairs when I was growing up. I liked to put my little pink bunny on the railing, propped against the wall, and send it sliding down the banister to the floor. Occasionally, I'd try to race the bunny to the bottom, to be there to catch it before it fell. Sometimes I had my sister or my friend stand at the bottom and catch the bunny. I'm not exactly sure why I found this activity so enjoyable but I did and I hoped that some day my own children might come up with their own stairway-fun.

My in-laws have a nice long stairway in their home leading to a basement. The clones liked to roll stick cylinders down the steps when they were younger. They would race their sticks and rank them according to which rolled the farthest. Now they hang out on the stairs with stuffed animals and action figures and they run up and down them numerous times throughout the day.

Stairs are a novelty to my clones because we don't have stairs in our house. We do have 4 stairs outside, leading up to the porch and the entry into the house. The clones like to climb them in odd ways, like they are on a jungle gym. They like to climb on the slats next to the steps and then come over the top of the railing. I have often heard them wishing we had stairs in our house like both Grandma's have at their houses.

For a long time I wished we had stairs in our house too. But things change.

I have a lot of joint pain now, frequently in my knees and hips, and I find traversing stairs to be quite a challenge many days. It is often painful for me to move my body on a flat surface and even more painful to ascend or descend a staircase. I have developed an odd way of going up and down our porch stairs, clinging to the railing, trying to minimize the rotation and extension of my joints or at least to make the motions as painless as possible. I have limited success with this and am quite grateful now that we don't have stairs in the home.

On Saturday, Clone 1 and I went to the High School musical, My Fair Lady. I had a significant amount of hip pain that day. Sitting, standing, walking, lying down: all of these activities were painful. But we wanted to see the play and it was our last chance to go. 

When we arrived at the school I looked dauntingly at the numerous sets of stairs I would have to climb to get into the building and partially wanted to turn around and just go get back into the car and go home. I stood there thinking about people with wheelchairs and canes and crutches and about how some people have to consider stairs when they make plans to go out and about how sometimes I'm one of those people.

Clone 1 patiently and slowly walked next to me, waiting to get to the top of the stairs even though it was cold outside and I'm sure she wanted to just race into the warmth of the building. "Go ahead," I told her. She said, "It's okay, Mom. I have to stand out here in the cold every morning while we wait for them to unlock the doors so I'm used to it." 

She is a sweet kid that way. She has a generous heart.

We got into the building and had to wait in line. I was moving with turtle speed because every movement was excruciating. The line in front of us moved quite quickly but I couldn't keep up. The person behind me was annoyed that I wasn't moving faster. I could practically feel her breathing down my neck, practically feel her feet stepping on my heels. I shuffled along as quickly as I could, embarrassed, but what could I do about it?

I'm sure it seems odd to people, these things I go through--hobbling along a hallway, awkwardly climbing stairs...Afterall, I don't look sick. I just look like a normal mother-of-a-soon-to-be-teenager. 

Looks can be so deceiving.

The musical was amazing. There are some incredibly talented kids in our little town. But the event lasted 3.5 hours which was about 3 hours longer than I needed it to be. I shifted around in my seat almost constantly, trying to find a position that didn't make me want to cry. I'd taken pain killers before we left but they did little to curb the pain. I tried so hard to focus on the kids, even though I'd forgotten my glasses and my vision was so blurry I could barely recognize the one child I knew, but pain is one of those things that overrides other processes. The more severe the pain, the harder it is to focus elsewhere.

We slipped out at the end while the drama director was handing out flowers and recognition. I would have liked to have seen that part but I couldn't sit there anymore. I hobbled and Clone 1 walked out into the hallway where my phone actually works and I sent a text to Mr. Amazing that it was time for him to come get us. Five seconds later I got a return text telling me he was already in the parking lot and I almost cried from the relief I felt that I wouldn't have to wait another 5 minutes for him to get to the school. 

I took more pain killers when we got home and laid out as flat and still as I could, hoping for the pain to recede and waiting for sleep to come.

I laid there thinking about how often I used to run up a flight of stairs and how I loved to hike the state parks with their stone stairways and how I always wanted to have a spiral staircase like the one my grandpa built in his cabin. (pictured above) I thought about how, when I was healthy, I didn't ever think about what a luxury it was to climb the stairs with ease. And I thought about how now that I'm sick, I feel so fortunate that even though it is painful, I'm still able to do it. And I wondered how long that will last.

And then I thought that one reason so many chronic illness warriors feel humbled by our illnesses is because our illnesses take things, privileges/abilities, away from us. We are thrust into a new life that lacks various advantages we had in the past, advantages that we often took for granted.