Rob’s new bike arrived this past weekend, and the weather did not comply with his desire to get out and test it. He said more than once, to me and to other people, “I can’t believe I’m just getting my bike and now the weather is so bad I can’t even ride it.”
I understood what he was saying, but it brought up a feeling that I get from time to time when people say things to me or in front of me that underscore my disability. The struggle I go through when this happens is to wonder whether I am being oversensitive or they are being at least slightly insensitive. I have more examples: the friend who told me she was so tired of sitting on a particular morning that she was going to stand for the rest of the day and make sure she walked around a lot. The friend who made dinner in my kitchen and went on and on and on about how fun it was to cook and particularly in my kitchen, with its counter space and great appliances.
There’s a big part of me that wants to laud these women for feeling so comfortable, and for maybe not seeing me as disabled when they said these things. However, I have to admit that in the moment, I was annoyed. You’ve been sitting all morning? I’ve been sitting for three years. You love love love cooking in my kitchen? I’ve never done that.
I’m working on making my initial reaction to these scenarios a lot more chill, because I know that the intention behind these statements is in no way meant to make me feel bad. I want people to speak freely with me. I want to hear about the things that are going on with my friends. I definitely do not want to feel like people are tiptoeing around me.
In some ways, things get easier as I adapt to this solid life as a disabled woman. But there are still moments of crushing disappointment, like when Scarlett tells me she doesn’t want me to put her to bed, because I can’t get in and snuggle with her the way Rob can. I react to this by brushing it off as if it is no big deal, and probably it isn’t. I spend way more time with her than he does, but none of that time includes us snuggling in bed together. It’s something I desperately miss.
I don’t want to become bitter, jealous of everyone around me simply because I translate their possession of functioning motor neurons to happier lives. But having your health is no small thing, and when I see people taking it for granted, I notice. That doesn’t mean you can’t be bummed if the weather gets in the way of a work out. But it might mean that you should be thankful that when the weather clears up, you’re free to enjoy the strength and power of your own body.
The flip side of this, and the thing I need to understand, is that it’s okay — even good —to openly appreciate the things that you enjoy. Cooking, standing and walking are wonderful abilities to have. I will make a better effort to curb my self absorbed reactions when my friends share their lives with me.
I volunteered at Scarlett’s Valentine’s Day party at school yesterday, where I was in charge of the dance party, a little piece of irony that I fully embraced. We had a great time, and when the girls got too hot in the sun, they leaned against the walls of the courtyard and dropped to their jumpered bottoms.
“We’re tired!” they moaned, as they wilted. “We need to sit down!”
“Me too!” I answered, smiling. “I need to sit down, too.”
“You’re already sitting!” the girls cried.
“Oh yeah,” I said. “You’re right.”
Because for a minute there, I swear, it seemed like we were all just dancing.
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I have found that living vicariously through people’s happiness and abilities is the way to go when it comes to this stuff… otherwise it’s just too painful. Life is subjective and relative and we can’t expect people to understand where we’re at all the time; no matter where people exist in life, everyone has their problems.
Fun to meet you the other day at the playground, even if I felt like a dorky fan.
You’re such a good writer on family life, parenting, and of course, life with a disability. I’m probably not the first person to tell you to write a book so we can hear more of your voice. It may have been Maia Piccagli who’s a mutual friend? Anyway, no matter…looking forward to reading about your upcoming adventures in wizardry! 
You can still make lemonade out of the lemons of life. I loved your last bit. I can see you wheeling around with the dance group and feeling as exhausted as they felt. Way to go, love. I love you, N
Great meeting you! Any friend of Maia’s is definitely a friend of mine. Love that lady! Hope to see you soon.
I also think you should write or compile your blog into a book-but I’ve told you that before! I think health is something a person can easily take for granted, until it’s taken away. I make it a point not to take for granted the things I can still do. I can still handle working two days a week, and have certain limitations that for the most part only I am conscious of. I’m grateful for all of it but I am very careful about conserving my energy. Sounds like you have an enviable kitchen, and while I used to love cooking, now my motto is less is best. I kind of laugh at what some friends put themselves through, while I’ve done my best to make life as simple and enjoyable as I can. Thank you for this very honest post!
Hello Sarah,
Right now I am trying not to replay to my mother in law. More than anything because her son, my husband is the closest thing to a saint that I know and he already has enough in his plate.
Yesterday I went to the doctors. No good news. Right now I am applying the only remedy I know for this situation: time. I will spend the next few days crying out until I accept the sad reality as something normal.
I do not have that much people with whom to talk. And sometimes, it is better. I am fed up of hearing “have faith and things will get better”. Well, for starters, if this is a question of faith, most likely I would not be sick at all. Some times I just need someone to hear me. Some one who is not my husband, I do not want to depress him more.
Right now, I was going to say, I am biting my tongue, as we say in Spanish. I got the voice mail from my mother in law totally desperate because her flu is lasting 5 days already. It will not be a problem if she was a comprehensive person. But as soon as I say how debilitating is my condition, right away she blames me for my lack of faith. Come on girl!!! You feel that is totally unfair to have a 5 days flu!!!!
The funny thing is that I try really hard just to hear people. I have friends that tell me how awful is their marriage, that complain all the time about money, I could tell them simply to be a little bit more comprehensive with their spouses and try to wish less material stuff. Their problems, I think, are totally self-created. But I don’t say anything. I am not smarter than them, maybe if I were in their situation I will be that kind of stupid, who knows… I always loved my husband, I always lived with little, I never said to someone that if they wish it enough they will have another baby… So, where is my karma coming from?
My husband keeps asking me why I read you or why I have so many sick friends. I suffer wit you, I suffer with my friends. I do agree it does not help you or any of my friends, but at least I feel “part of the family”. I do not feel guilty for getting so sick so young. I do not feel guilty for needing anxiolytics to keep under control my fears. I do not feel guilty for having bad days.
I read all the time, but have never commented, but this time I feel compelled.
I lost a close family member to ALS, somehow it is healing to read about your experiences. I have trouble even understanding why that is true sometimes as it often breaks my heart. I guess it is a combination of appreciation of how you persevere along with a need to understand this mean disease.
I write today because your point about appreciating what you can do and what you have is so true. Health is something we all take for granted until we do not have it. We do not even notice how we feel until we do not feel well. Today I won’t take it for granted, nor tomorrow probably, because what you wrote resonates. But how do we keep up that appreciation of our health every day? We should! It should be our duty if we are healthy, or even reasonably healthy, to honor you and others and appreciate what we have.
Sarah, you continue to have such amazing and spot on insights into human nature and your own feelings and reactions. Thank you for continuing to share with all of us. That Valentines Dance group must have been a blast- way to go!!
Love,
Beth
My sister: “I’m dying of the flu here”
Inside my head Me: Ah, nope. No, you’re not. You’re temporarily sick. I’m dying. A little sensitivity please!
Me: “Poor Boo, hope you’re feeling better soon. Flu sucks. Are you getting lots of rest?”
As with you Sarah, I try not to mind when friends or family say things like this, because it means they’re still seeing me as me, not as the disease.
Hugs and many thanks for your indomitable spirit, and sharing your life with such honesty and rawness.