From time to time, I allow myself to engage in imaginary conversations with people I see on the street. These conversations have no basis in reality, but they arise from an experience I have pretty regularly.
Scarlett and I wheel past a mom, carrying a baby or walking alongside a small kid, and she smiles warmly at us, but in that brief moment, I imagine all the things she might be thinking. Most likely, I tell myself, she is feeling a mixture of pity, curiosity, and uncertainty as to how one can possibly perform the functions of motherhood from the confines of a wheelchair.
I admit, I am—so far—not a mind reader. Maybe that other mom is just thinking about what to make for dinner. But there is something in those discreetly inquisitive eyes that lets me know she thinks the job is hard enough without the added layer of a disability. And if that is what she’s thinking, she definitely has a point.
Allow me to indulge in this one-sided conversation just a bit longer. This mom is dressed in adorable jeans and stylish-yet-comfy flats, her hair informally organized, and any hint of exhaustion covered up by a pair of oversized sunglasses. She looks at me and thinks that I’m different than she is. I want to tell her I’m not.
I want to reassure her that I was her, once upon a time. That I would have looked at a mom in a wheelchair the same way, thinking, wow, I wonder how she does that? I might even have been a little awed, thinking I should probably not complain about whatever annoying thing was going on that morning as I easily pulled on my jeans, and walked from one side of a room to the other, to refill my coffee mug.
I want her to know that she would have been just as confused as I was to find herself tripping over her own feet, unable to safely walk down the street with a toddler. I want to tell her that I had plans for my future, and being paralyzed was not on the list.
Here is the thing that I sometimes feel like saying: This could be you. There is no reason that it’s me. You’re not safe because of your cute clothes and your optimistic plans.
But I won’t say that, because it’s mean. Also, who knows, maybe that nice mom has something very bad and scary happening in her life right now and it just isn’t the kind of thing you can see.
I don’t know why I’m limiting this to Fake Conversations with Other Moms. It also happens to me when I see young women running, or even kids playing soccer. Crazy Me wants to go up to the kids and say, “I used to play soccer, too! I’m not just some woman in a wheelchair who has nothing to do with you.” But the laws of decency, and also just actual laws, keep me from doing this sort of thing.
This blog post is brought to you by a defensive place I sometimes visit, a place of vanity and narcissism, of denim-flavored jealousy. Luckily, I don’t live in that place. On most days, I can roll down the street without assuming everyone is thinking about me, or taking it a step further to actually guess what they’re thinking. How ridiculous! Today, I vow to remain rooted in reality, a place where—for better or worse—most people just go down the street thinking of themselves. I guess I’m no different.
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Brilliant post, but then again I have come to expect nothing less. You capture, with your internal dialog, the very feelings I have when I see people in public. I wonder what they wonder. I wish they knew how new this was for me. I want them to know it could be them; I did nothing to get here. It just happened to me.
Hair “informally organized”? That cracks me up!
Enjoyed this one, as always.
You’ve nailed it again, Sarah. I find myself wanted to shout, “I was an athlete. A good one. My serve was a weapon. I moved with grace and ease. My bike climbed steep hills and rode blissfully for hours. I lifted heavy rocks and landscaped this whole yard myself. That was the real me”
But, now, I’m making the best of all this passive sitting and watching. My athleticism is taking a shower…every bit the challenge of tackling steep hills. This is now the real me. But God I miss all those days I so took for granted.
Thanks for sharing a Real conversation!
Sarah- I want to tell you that reading your blog has changed how I look at people in wheelchairs and/or with disabilities. I now wonder why they are in a wheelchair and imagine what they used to be like/do before. I also wonder if I might be in a similar situation one day.
Wonder what they think when they see me rolling down the street wearing a face mask ventilation hose and all? You know I care but I don’t, I’m not going to sit at home and fill sorry for my self. Some times I wish I had an ALS teeshirt so they would understand.
Hi Sarah,
No I do not have ALS but I lost my husband to it Nov. 2013. Your blog gives me insight to how others are living with this thing called ALS. Yes we miss him dearly. We were married 29 years and have two beautiful grown daughters and two beautiful grandchildren. (he was here to see them born.) I read your posts all the time and I love them! Of course my feelings are different and I am sure his were different than mine, But the things I think of now is Who will walk them on their wedding days, Who will ever be able to tell them what a great grandfather they had? Things more grown up. I pray for you and your family everyday. So glad you have help. I didn’t have that. My husband fought hard for almost two years. He was only 57. Life is not how I thought it would be. I am Thankful to have had him for all those years but I still can’t help but feel cheated somehow. I mainly just wanted to say walking with him in his chair I often had thoughts of people passing by and looking at him and wondering what they were thinking. I know for me I don’t look at people in a wheelchair the same as I did. I just say a little pray as they go by and hope everything works out for them. Sorry to go on so long. Thank You for your blog and never give up sweetheart!!!
Theresa, I’m so sorry for your loss. And I really appreciate your kind words, thank you!
Linda, you should get a t-shirt! http://every90minutes.storenvy.com/
Thanks, Christina.
Thank you, Kay! Hugs to you.
Big hugs to you, Richard. Think of you often.
Sarah, this is an unbelievably honest entry you’ve written. I read your posts almost every day, and I don’t always know how to respond to what you write because it’s so powerful or emotional, so I often just linger over the comment box and then leave it blank. Just know I think about you every single day and I am always inspired by you.
No, you don’t live in that place but I appreciate you sharing your visit there