When Two Steps Matter

Chronic Illness, Disability, and Socializing

backyard deck with two wide steps no railing and comfortable chairs

Sunday afternoon I realized again how embarrassing and limiting it is to be disabled.

I thought after all these years with lupus, Sjogren’s disease, and the rest of the autoimmune disease gang partying in my body, that I had gone through the grieving process; letting go of who I was prior to diagnosis and accepting who I am today. I mean, I was diagnosed in October 2006, almost twenty years ago now. I’ve given up two careers: teaching and freelance journalism in the last twelve years. I use the handicap placard in my car when the pain and fatigue are too much for me to walk across a large parking lot to go to the grocery store. I even let Instacart shop for me when I can’t leave the house. I have accepted all of that. Until Sunday.

I was asked to be a host at a house party for a political candidate I support. I didn’t have to do anything physical; just invite people I know to attend, post about it on social media, and attend the event. Easy.

It had already been a rough week physically. I spent some time in the garden on Friday, finally putting my languishing tomato, kohlrabi, and bean plants in the ground. The day was cloudy and cool, which is perfect for me, but it was physically taxing and wore me out.

kohlrabi and beans are planted!

On Saturday I tried to make the house more presentable before my mom came over to help me plant the geraniums into pots for the porch and front of the yard. That was not physically demanding once I set everything up. We sat or stood at my table on the patio and planted. It was fun.

But the HVAC guy was there in the middle of it to tune up my a/c unit for the summer before the heat wave arrived, so I was distracted. And just to add to the chaos, my lawn guys finally showed up a week after they were expected. The day was sunny as well, and hot, which made me melt like a cherry popsicle that fell on the sunny sidewalk. My face grew as red as a cherry popsicle too. By the time everyone was gone and everything was done, I collapsed on the couch.

'

Then it was Sunday.

The party was in the middle of the afternoon, so I had time to rest. I would be fine by then, I thought, or at least good enough to fake it. I put on makeup – lots of makeup – and a big floppy hat. I put on a smile and showed up.

There were many people I did not know, but a few I did know. I’m an introvert and I had a few fleeting thoughts of immediately going back home where I was comfortable. But I promised to be one of the hosts, and I didn’t want to break my promise.

I was getting tired just fifteen minutes in and knew I needed to sit down. Just then, an elected official I know well arrived and we started chatting.

“Let’s go sit down,” she suggested. I was relieved. She is a spry woman, active and healthy in her 80’s. I adore her. She went to the deck toward the comfortable padded chairs. I took one look, noticed there was no railing by the two small steps to get onto the deck, and I knew there was no way my legs had the strength to go up those two steps. I didn’t bring my cane to support me and I should have.

backyard deck with two wide steps no railing and comfortable chairs

I hesitated, and said, “I think I’m going to just go sit over there,” motioning to a table on the grass. She realized why and asked, “Do you want me to give you a hand up here?” extending her hand to me.

I was not going to let her pull me up and I also knew that even if I managed to get on the deck, I would likely fall going back down later because there was nothing to hold on to and my balance was poor.

I could not walk up two steps to join people on a deck.

Yet for a woman in her 80’s it was no problem.

I am 58 and I am disabled.

I absolutely hated that feeling.

To her tremendous credit, she followed me to the table on the grass although I knew she would have much preferred to sit where it was more comfortable. We chatted, then more people joined us. I wanted to get up and mingle, but I could not. I knew my body had reached its limit after the weekend I put it through. I sat there and let people come up to me, like an old woman in a nursing home.

We did have a full lively table, and I met a woman who is planning to run for a judgeship in our community in 2028. I liked her very much and plan to support her. I talked with neighbors, new like-minded acquaintances, elected official friends, and enjoyed that time.

Finally, when others were leaving, I left too and I was never so glad to unlock my door and see my little dogs greet me with kisses and barks.

I don’t go to physical therapy right now, but I am going to work on climbing steps without needing to hold on. I don’t want to feel again the way I felt on Sunday afternoon. Maybe I will build enough strength to climb two steps without needing something to hold, maybe I won’t.

Maybe this is the best I will be.

Whatever is to come, I will work harder to accept myself as I am right now weak legs, weak body, and all. However, I will try to build more strength in my legs as well as strengthen my emotions.

Ultimately, does it matter if I can climb steps without a railing? No.

Am I a lesser person because I am disabled? No.

The most important part of all this is that I WAS able to show up for 90 minutes, fulfill a promise, support a candidate I believe in, and hang out with interesting people. And except for that one friend who joined me instead of sitting comfortably on the deck, no one knew I couldn’t walk up two steps or that I was disabled. They liked me for who I am, not what my body can or cannot do. I need to remember that. If you have chronic illnesses or are disabled, maybe you do too.