There are so many little things I never thought about before I lost the ability to do them.
I used to love long showers. I would stand under the steady stream, letting the scorching water envelop me and circle down the drain, taking my worries with it. There was nothing a hot shower couldn’t fix. If I felt sick, if I felt sad, if I felt tense, I took a shower. When I was on bedrest but allowed one shower a day, I saved it for when I most needed a reprieve from the anxieties and monotony of a high-risk pregnancy. When my colicky newborn would not stop crying, I took a shower and calmed us both.
Now, I avoid showers, even to the point of compromising my hygiene. If I’m not going anywhere, I can go a week without showering.
Once my happy place, my escape from the world — showers are now a torture chamber.
When my back conditions first started escalating, I lamented the loss of my long walks. I loved packing the kids up and exploring the city, seeing what hidden treasures we could find. We’d spend all morning at the park, grab some lunch, then move on to the next one. We’d walk the hour’s trek to our favorite coffee shop and then home again. I didn’t know the meaning of cabin fever.
There are so many little things I never thought about before I lost the ability to do them. Pain is fluid. It seeps into every crack and corner. I no longer plan my days around wants and needs but around the level of pain I can endure. Everything needs to be carefully calculated. And some days, I just don’t have it in me.
Gradually, our long promenades became a struggled crawl to the park down the street. Then eventually we started staying in the backyard. Then walking to the backyard became a struggle.
I’ve made some peace with becoming a near recluse. I work from home, and I’m an introvert. My kids are in school now, so it’s not as big a hardship being unable to stroll the city.
It’s all the little things I took for granted when I was able-bodied that I long for.
Like showering. Before the water has time to warm, I am in pain. By the time I wet my hair, I am struggling to stay standing. Lathering the shampoo proves unbearable, and I spend the remainder of the shower washing and rinsing as quickly as possible, rushing to find the relief of my bed. Being dirty has become the preferable choice.
I miss standing in line. Waiting in a long line used to be an inconvenience; I now see it as a privilege. Last week, I had to abandon my plans to get my handicapped parking permit because the line was too long for me to stand in unassisted.
The irony was not lost on me.
Sometimes I skip meals because the idea of standing at the stove to cook is too much to bear. I often cook sitting down, and I am waiting for the day I knock boiling water onto myself as I reach up from my wheeled office chair to drain my pasta.
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I desperately miss browsing for hours at my favorite bookstore. Bookstores don’t have carts, so unlike the grocery store, I have nothing on which to brace myself. If you see me sitting on the floor, please be patient. I’m not ready to lose this pleasure entirely.
I miss cleaning. Okay, that’s a lie. I miss seeing something spilled on the floor and just doing a quick clean up without needing to psych myself up first. I miss vacuuming in one stint. I miss not being brought to tears by seeing cracker crumbs dropping from the mouth of my five-year-old.
I remember the days when I enjoyed going to my children’s activities or taking them on an outing. The walk down the hall to swimming or gymnastics now feels like a marathon. An amusement park is impossible. I’m grateful for my husband and my parents who ensure my children don’t miss out on things because of my inability to take them.
But I miss out.
There are so many little things I never thought about before I lost the ability to do them. Pain is fluid. It seeps into every crack and corner. I no longer plan my days around wants and needs but around the level of pain I can endure. Everything needs to be carefully calculated. And some days, I just don’t have it in me.
And it seems unfair for this physical disability to hit right when I started to feel like I was coming into my own. I went for my dream career and succeeded. I have the drive and desire to work out and get into shape. I feel ready to take on the world. But I have a body that won’t allow it.
I realize that I am lucky. Even if it is with extreme pain, I can still walk. I have a great support system. I can sit relatively pain-free, so I am not in constant pain. I am so much luckier than many, and that is something that unlike showering, I never take for granted.
But coming to terms with my new limitations feels like a loss. I’m grieving. I try to stay positive, but sometimes I just have to scream “This sucks!” without guilt or shame.
I like who I am, but I miss who I was.
I don’t know if I will ever get used to this. Can you get used to being in pain? Do I even want to? All I can do it work on accepting that the things I once found simple and unimportant are gone and try to come to terms with my new reality.
And I will. And I’ll find new simple pleasures and ways to manage. I’m bent but not broken.
