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Whenever I tell someone new that my dad has MS I brace myself for the response I’ve been hearing as long as I can remember, “Oh, I’m so sorry, that must be so hard!”
I know that they mean well, and I appreciate the sentiment, but all I hear is pity; that they think I’ve missed out on something. That my life has been marred in some very important way by my dad’s illness. Certainly there are difficult patches, but sympathetic responses change the terms of the conversation; it’s no longer a story about my dad I’m telling, but about my *disabled* dad. This shift in tone is often so uncomfortable for people that I end up diverting the conversation, always keeping in mind that a lot of my life stories—many of the moments during which I have felt closest to my dad—will create too much awkwardness for the other person. This interaction is not this other person’s fault, nor is it caused by my insecurities or shame, but sometimes I don’t have the time or energy or words to get into *it*. Yes, I’m sure there are many advantages to having fully able-bodied parents, but there are also things you miss out on if you don’t have a disabled parent.
I usually respond with “Don’t be sorry! He’s not. We’re not!”
But what I want to tell them is a story about me cleaning dried blood off my dad’s toes—from bumping into walls without shoes. Sometimes I’ll put too much alcohol on the wound and even after a lifetime of experience I’ll say, ‘Oh no! Did that hurt!?’ To which, he’ll give me a little chuckle, and with that silly glint in his eye that tells me that he doesn’t have a migraine, he says, ‘no I didn’t feel it at all.’
I want to tell them how easily my dad can smuggle taco bell into the movie theater: nobody’s checking his wheelchair for chalupas. We’ve both benefitted from this during epics like The Hobbit.
I want to tell them that my dad got a new sling for his Hoyer lift that makes him look like a ninja turtle when he’s suspended, and also that when I wrestle it out from under him once I get him in bed I’m surprised if a peanut M&M doesn’t pop out.
I want to tell them how much I used to look forward to helping my dad organize his pills once a week into their compartments. And how I would be unhappy if there were only white pills in a compartment, I liked the orange, green, yellow, blue, purple, and red pills to add pops of color.
But those stories, daily life for us, would be classified under the heading of “dark humor.” So I stay away.
I wish I could explain to them that the moments I’ve felt closest to my dad are when I’m cutting his toenails, cleaning and dressing his wounds, putting lotion on his feet and legs, dressing him, pushing him in his broken power wheelchair through the icy snow, transferring him into bed, catching him as he slips, feeding him. These are the moments of closeness that don’t exist in able-bodied relationships.
I wish I could explain that in these moments our bodies are caring for one another; a kind of intimacy not usually afforded to a father and daughter. It’s not just that I am some selfless daughter who’s always by his side (because I’m not). It’s the love I feel because I have earned the right to take care of him.
I know the intricacies of his body; I can tell how bad his headache is by how low his eyelids are; I know in what position he sleeps, where the pillows go, and how many blankets he needs; I know what color, temperature, and texture the skin on his feet and legs should be; I know the frustration on his face when he can’t hold his hand steady enough to feed himself; I know that the next time I see him these abilities may have changed; I know the tone of voice he uses when he hasn’t had a headache all day; and I know that when I ask him, ‘dad are you okay?’ he’ll probably answer, ‘No, I have MS.’
I’ve learned to be conscious of his body in space in relation to my own; where to put my arms under his shoulders to help him sit up straight; how to slip my hands between his back and wheelchair fast enough to pull down his shirt when he pulls himself over, how to move his legs gently enough when his arthritis flares up; how to dance with him; and all the different ways to hug him.
When I take care of my dad I don’t just feel love *for* him, I also feel love *from* him. In loving me, in trusting me to take care of his body, he’s trusting my body to take care of his. He’s in a vulnerable position swinging in his lift, but I know that he respects and trusts me enough to get him into bed safely. I know that not just anyone gets to do this.
A symbol is something that stands in place of something much larger. For me, the 3E symbol represents all these things that I wish I could say to the person who is ‘sorry about my dad.’ I don’t resent them, I just wish there were words to explain why I have MS to thank for the strength of our mutual love and respect. That in my family, a wheelchair does represent love. That’s just how we roll!
I know that they mean well, and I appreciate the sentiment, but all I hear is pity; that they think I’ve missed out on something. That my life has been marred in some very important way by my dad’s illness. Certainly there are difficult patches, but sympathetic responses change the terms of the conversation; it’s no longer a story about my dad I’m telling, but about my *disabled* dad. This shift in tone is often so uncomfortable for people that I end up diverting the conversation, always keeping in mind that a lot of my life stories—many of the moments during which I have felt closest to my dad—will create too much awkwardness for the other person. This interaction is not this other person’s fault, nor is it caused by my insecurities or shame, but sometimes I don’t have the time or energy or words to get into *it*. Yes, I’m sure there are many advantages to having fully able-bodied parents, but there are also things you miss out on if you don’t have a disabled parent.
I usually respond with “Don’t be sorry! He’s not. We’re not!”
But what I want to tell them is a story about me cleaning dried blood off my dad’s toes—from bumping into walls without shoes. Sometimes I’ll put too much alcohol on the wound and even after a lifetime of experience I’ll say, ‘Oh no! Did that hurt!?’ To which, he’ll give me a little chuckle, and with that silly glint in his eye that tells me that he doesn’t have a migraine, he says, ‘no I didn’t feel it at all.’
I want to tell them how easily my dad can smuggle taco bell into the movie theater: nobody’s checking his wheelchair for chalupas. We’ve both benefitted from this during epics like The Hobbit.
I want to tell them that my dad got a new sling for his Hoyer lift that makes him look like a ninja turtle when he’s suspended, and also that when I wrestle it out from under him once I get him in bed I’m surprised if a peanut M&M doesn’t pop out.
I want to tell them how much I used to look forward to helping my dad organize his pills once a week into their compartments. And how I would be unhappy if there were only white pills in a compartment, I liked the orange, green, yellow, blue, purple, and red pills to add pops of color.
But those stories, daily life for us, would be classified under the heading of “dark humor.” So I stay away.
I wish I could explain to them that the moments I’ve felt closest to my dad are when I’m cutting his toenails, cleaning and dressing his wounds, putting lotion on his feet and legs, dressing him, pushing him in his broken power wheelchair through the icy snow, transferring him into bed, catching him as he slips, feeding him. These are the moments of closeness that don’t exist in able-bodied relationships.
I wish I could explain that in these moments our bodies are caring for one another; a kind of intimacy not usually afforded to a father and daughter. It’s not just that I am some selfless daughter who’s always by his side (because I’m not). It’s the love I feel because I have earned the right to take care of him.
I know the intricacies of his body; I can tell how bad his headache is by how low his eyelids are; I know in what position he sleeps, where the pillows go, and how many blankets he needs; I know what color, temperature, and texture the skin on his feet and legs should be; I know the frustration on his face when he can’t hold his hand steady enough to feed himself; I know that the next time I see him these abilities may have changed; I know the tone of voice he uses when he hasn’t had a headache all day; and I know that when I ask him, ‘dad are you okay?’ he’ll probably answer, ‘No, I have MS.’
I’ve learned to be conscious of his body in space in relation to my own; where to put my arms under his shoulders to help him sit up straight; how to slip my hands between his back and wheelchair fast enough to pull down his shirt when he pulls himself over, how to move his legs gently enough when his arthritis flares up; how to dance with him; and all the different ways to hug him.
When I take care of my dad I don’t just feel love *for* him, I also feel love *from* him. In loving me, in trusting me to take care of his body, he’s trusting my body to take care of his. He’s in a vulnerable position swinging in his lift, but I know that he respects and trusts me enough to get him into bed safely. I know that not just anyone gets to do this.
A symbol is something that stands in place of something much larger. For me, the 3E symbol represents all these things that I wish I could say to the person who is ‘sorry about my dad.’ I don’t resent them, I just wish there were words to explain why I have MS to thank for the strength of our mutual love and respect. That in my family, a wheelchair does represent love. That’s just how we roll!
