So, What Do My Parents Really Think About MS?

An interview with my parents about what it’s like to have an adult kid with MS.

What do my parents really think about my MS?

It’s Valentine’s Day and even though this is a holiday reserved for chocolate romantic love or drunk-dialing your ex, I’ve already written about how MS impacts my love life, not to mention my sex life. When you have MS, it affects everyone who loves you. I can’t choose to live without MS, but anyone who chooses me, chooses to adjust to life with MS. That’s love.

When I was diagnosed with MS in my early 20’s, blah blah years ago, I was technically an adult, but just barely. My parents were still my primary support system and were a big part of my diagnosis story. So, this Valentine’s, I thought I’d interview the first people who loved me: my parents. 

Meet the parents: Norma and Jim

Before we talk about love and MS, tell me, what qualities do you think I’ve inherited from each of you?

Mom: I think you get your logic and your teachable spirit from me. You’re a learner and a hard worker.

Me: I’m also a blabber-mouthed, reckless spender. I believe you taught me the valuable lessons: “It’s not gossip, it’s information” and “It’s just money. You can get more”.

Mom: You love things, you definitely got that from me, and that joie de vivre. Life is exciting. Life is beautiful. You got your looks from me. And your sense of style, of course.

Me: Right. “The price of beauty is pain”, and “If you can’t hide it, decorate it”.

Mom: Style goes along with knowing who you are. It’s not just being fashionable, it’s like you know who you are and you express it outwardly.

You think I’m extra? Allow me to introduce you to Norma.

Dad: Well, you get your sense of humour from me. I think you get your compassion from me too.

Me: You once gave an apple to a woman with no teeth.

Dad: Yes. And she told me to stick it up my ass.

It’s been 19 years since my MS diagnosis. What do you remember about that time?

Mom: I was worried you’d had a stroke. MS surprised me. You seemed totally hopeless, you were sobbing. I was in denial and trying to get you to deny it. It was a shitty day.

Dad: I have to confess, I’m quite embarrassed because I did not accept it. When you started telling me the different things you knew about MS, I just turned myself off. I don’t wanna hear this because my baby hasn’t got this; she can’t possibly have this terrible disease. 

Me: When did you finally accept that it was MS?

Dad: It was a gradual acceptance. I had to listen to you. 

Mom: Well, seeing it is different too. When you came home from that vacation and I saw you walking, it’s not here anymore (points to head), it’s here (points to heart).

Dad: The first time I saw you struggling to walk it was like a punch in my stomach. 

What’s the hardest part of being the parent of an adult child with MS?

Dad: The helplessness. I see what you’re going through, and there’s not a damn thing I can do about it. My one strength, I think, is that when you’ve been in a real mess, and I can get you laughing.

Mom: I don’t feel helpless. I feel like there’s maybe some things I can do. Like talking to you when it was time to catheterize. Of course, sometimes I go overboard with the advice. But the hardest thing is that I feel I have to really look after my own health so I can always be there for you.

Me: You feel like you have to live forever so you can look after me???

Mom: No, it’s not that. It’s just, I can’t cure your MS. I can pray about it and that’s what I do. But I would do anything for you that I can do. Like, when you needed draperies and I sewed you 14ft wall to wall curtains. It’s silly and it doesn’t make sense.

Me: So, you wanna stay alive so you can make me fruitcakes when I’m sad?

Mom: Pretty much.

Me: I accept that. 

The Banker: Do you have any fruitcake now?

Dad, what’s the hardest part?

Dad: That MS is devastating. And it’s far more widespread than I ever thought. 

Mom, you already knew a lot about MS from having been a nurse, but what have you learned since my diagnosis?

Mom: Well, how much MS has changed medically over the years. And I’ve learned how expensive it is; how horribly financially devastating it can be. 

Dad: I remember the first time you were told there’s a new drug and not everyone can get it, but you’re gonna get it. So, everybody’s thinking that’s the answer. In my heart I’m thinking, is this the thing? Is it? And then it turns out it wasn’t, and then you end up going for something else, and something else, and then to Poland for God’s sakes. All these terrible things you’ve gotta go through. You’re not just going to Poland for the perogies.

Me: That vodka tho…

Mom: I believe in miracles. There’s an answer out there. We don’t know what it is. I am hopeful. I’ve also felt guilty. Many times I’ve thought it’s from my genes or that I didn’t breast feed you. It’s true.

What do you think is the biggest misconception people have about MS?

Dad: I think people in general have the same opinions I had. They don’t know what it is, so it can’t be that bad. If you say someone has cancer, people know what that is, and the reaction is that there’s nothing worse. But, I’m sorry, there are other things besides cancer, and that was a revelation to me as well. One thing that pisses me off is when people say “Well, how did she get it?”

Me: Like, they think it was lifestyle factors?

Dad: Some people, yeah. Or they just think you should be taking vitamin D. Or they say “I know people that have MS and they’re getting along fine”.

Mom: I think the biggest misconception is that people who don’t have a good course of the disease, it’s because they don’t follow the right diet, or so-and-so has a friend and they have MS and they’re fine.

Dad: I’ve heard that many times.

Me: People say that to you guys? (My head explodes as I realize I’m not the only one subjected to this kind of micro-aggression bullshit.)

Mom/Dad: Yeah/Oh, yeah.

Mom: Someone said to me recently that you should be doing Tai Chi. And that there’s no word for MS in Chinese medicine; that there’s something we’re doing wrong here.

Me: Oh for fuck’s sake.

Dad: It’s ignorance. And that was me, initially. Sadly, I know a hell of a lot more about it now. I’d rather be one of the ignorant ones.

What advice would you give to parents of someone newly diagnosed?

Dad: Listen. Cause they’re gonna have a lot to say, and the more the disease progresses, the more they’re gonna have to say.

Mom: Try to understand what your child’s perception of the disease is. And understand that there’s going to be a whole lot of choices along the way, treatments to take, and things like that. I think the biggest thing is to continue to see them as who they’ve been all along and support that, and not let them collapse under the weight of public opinion or misconception.

Dad: I agree and you do a very good job, because, and I have to get this out there, you know who you are. And you know what you are. And the fact that you’ve got a disease, that doesn’t change it. “I’m Ardra Shephard, get out of my way!”

In case you forgot.
photo: Alkan Emin

Mom: And when young people are diagnosed, maybe they don’t know who they are yet, and to me that’s the biggest danger. 

What’s the most important quality someone with MS needs to have?

Mom: When I was a nurse, a lot of nurses thought people with MS were impatient with them. I think they had a right to be. You need to have a fighting spirit.

Me: To be able to advocate for yourself?

Mom: Yeah.

Dad: I see what you do, I see how you handle this, and I ask myself if this were me would I be doing the same thing?

(Mom shakes her head vigorously. That’s a hard no.)

Dad: I’m extremely proud of you, because not only is this (blogging) helping you, you’re helping so many others. To me, that’s the most important thing. That, and I wish you’d stop using the F word every third sentence, I can’t show this to anybody at church.

Mom: It’s because you’re brave enough to be honest. Society’s taught us not to talk about these things. I love reading people’s comments.

Do you still worry about me, or do you feel like on some level you know I’m gonna be okay?

Dad: Seeing you sitting here, my heart tells me she’s gonna be fine. But when you get up, I’m gonna watch you walk to the door and it’s gonna shatter that dream. She’s not gonna be fine, this isn’t going away.

Mom: When you’re here we’re talking to Ardra the spirit. When we see you leave and struggle to the car we see your body and we cry. 

Me: Oh good lord. Who invited Sarah McLaughlin? I don’t want you guys to be sad, or feel sorry for me when you see me walk…

Dad: Well, I can’t help it. I don’t feel sad or sorry for you, but I feel angry about what that is doing to you. 

Me: You keep pointing to the rollator, but that’s a tool…

Dad: I know that, it’s a symbol for me. It’s not the rollator; what I’m trying to say is what the disease is doing to you.

It is my dream for us to collectively see mobility aids as symbols of liberation, rather than of restriction.

Me: I think of my walking differently now. I feel grateful for all my crooked fucked up steps. I’m not staying home or checking out. If my walking days are numbered, I don’t wanna waste them wishing I was walking like I was three years ago. I’ve done that. It’s exhausting.

Mom: I totally agree with that.

Me: I don’t want people to look at me and feel sad. Or pity. I’m doing stuff. I’m traveling, I have a great life. 

Mom: You don’t have to convince us. The invitation to answer your questions makes us a little more open. You’re asking us how we feel and you’re our little girl.

Dad: That’s the bottom line. 

Mom: And you’re still kicking ass. 

I didn’t look back to see if they were crying when I left.

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