Effort 12 – Interview with My Little Love

For 30 days, I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

This is Effort Number 12…

I sat down with my daughter, Eleanor Byrne, last night to hear your impressions on her daddy and our fight against MS. The following is a transcript of our time together. You can hear the interview by clicking this link: https://drive.google.com/file/d/14mNErK1-_iHPmmfKw_qd6ttIbVIOJpp_/view?usp=sharing.

***

Kevin: Hello there. My name is Kevin Byrne and this is effort Number 12, my interview with My Little Love.

I would love to conduct an interview with you, Eleanor, if you’re OK with that. I'd like to talk about sclerosis. Specifically, what are some of your thoughts on multiple sclerosis, how it affects me as your daddy, and more importantly, how it affects you. I would also like to talk with about all the fundraising efforts that we do for Bike MS every year, and anything on both things that you would like to talk about. Does that sound OK?

Eleanor: OK!

Alright. Great, so let’s get started. So, I guess in a very general sense, can you describe to me what multiple sclerosis is?

<Silence>

Or, how you see it affecting me or affecting or other people you know who have multiple sclerosis.

Multiple sclerosis is something that mostly affects your brain, and something that can affect you, like it affects something in your brain, then affects the rest of the body, and then you have to pay a lot of money for medication. And then, it’s just tiring.

It is tiring. It is tiring, and it affects my brain. And when it affects your brain, what does that impact? If your brain doesn’t work right, what does that make?

It makes your body not work, because if it affects the left side of your brain then the right side of your body will be, like hurt and stuff, but if it affects the right side of your brain then you left side will be really hurt. The left side of your body will be…

Yeah, that’s pretty good. That’s a pretty good description. I think it’s about as good as most doctors know as far as multiple sclerosis. So, do you remember any of the stories about when I was diagnosed with multiple sclerosis, way before you were born? Do you remember any of those stories?

Uh, not right now.

Not right now, huh? Is that right?

If I had the book, I could.

Which book?

My MS and E.

My MS and E! How would you know that?

Because it says you get diagnosed with MS in there.

Oh! Because word said in the book, “We talked of that… We talked of my stress…” Oh, sorry, “We talked of those tests, that start of my stress, when a Colonel declared simply…”

“You have MS. ”

Hah! “You have MS.” Yeah. That was a long time ago. So, how does it affect me on a daily basis? How do you notice that I have multiple sclerosis, and someone else doesn’t?

Well, if you look at someone who doesn’t and someone who does, someone who doesn’t have multiple sclerosis is usually, like, they can like bend down easier and pick up stuff on the ground easier.

Yeah.

But if you have multiple sclerosis, sometimes it can affect your legs and stuff, and you just can’t bend down. Like, mommy can bend down easily and pick up stuff on the ground, but then it’s harder for you to bend down and pick up stuff on the ground because you need both legs to go up.

It is kind of hard. My legs don’t cooperate sometimes. Sure. Uhm, in terms of my multiple sclerosis and all the issues I have, how does it affect you? Does it affect you at all?

Hmm.

Are there things you can’t do do because of my multiple sclerosis, or we can’t do together?

Uh, well, you can’t run around and play.

No, I can’t.

You can’t throw and catch the ball. You can’t, like, if we were to play basketball, you can’t dribble, or throw, or catch.

No, but to do you get to do those things?

Yeah.

Yeah. How do you do those things if I have multiple sclerosis?

I probably, because do you know the saying where one little thing in your life can change your whole future?

Uh, huh.

Like Back to the Future, if Marty McFly changes just one little thing, it can affect the whole future.

That’s true.

Like, when his parents were really mean and fat and stuff, uhm, then if he changed. He changed. He, like, poked somebody when he walked in and that just changed that the whole thing.

So, where do you do things even though I can’t because that will affect your future and make your future better? <silence> We can’t hear your head nods!

Yes!

Yes! Well that’s a pretty good analogy, I like that. Uhm, does my multiple sclerosis, does my MS impact you? Does it make things difficult for you or make things difficult with us sometimes?

Uhm, yes, sometimes. Sometimes you’re really, really slow.

Yeah, I’m slow.

But I don’t mind that, because, uhm, like, mommy’s really, really fast.

Yeah.

So, every time I go to mommy’s house, I’m like, “why are you walking so fast?” because I’m so used to you being slow and then, by the time of just like, I’m always used to you being slow, but then me and Lisa are like, “why are you walking so fast?”

That’s pretty funny! That’s pretty funny. Well, she does walk fast, that’s true.

Yeah, she walks really fast, because sometimes, me and Lisa are like, “wait up!” and she’ll just be way ahead of us. But once, Lisa’s dog died and then she was walking really fast, because she was used to walking so slow because her dog was slow.

Oh.

She was used to walking so slow.

That’s sad. So…

Like Monte died.

Yeah, Monte.

Yeah, but she just got old.

No, Monte got sick. But that’s OK. So, what’s the biggest problem that you think I have because of my MS? Of all the things you see around me, of all the little issues a little annoying things that daddy does, I don’t do all of them because of my MS. Sometimes I do them because I’m a daddy and that’s what daddies do!

[Chuckles]

But what’s, what do you think the biggest problem that I have is, because of my MS?

Uhm, that you can’t run and play, and just because you have stuff that other people might not have, so, like, it sort of gives you an advantage for being slow.

It gives me an advantage?

[Laughs]

Oh, I never thought of it that way. I like that! I’m going to think, I don’t know, I’m going to write a story about that. I’ve got an advantage!

[Laughter] It can be an advantage to be slow. So like, if you have MS in school, then it would give you an advantage to be slow to come to the carpet. [Giggles]

Well, you don’t want that! You don’t want something like that! Now you’re just being silly.

[Giggles]

So, does my MS make you sad at all? Now, in the past you have been very helpful with me and my MS, and my medications, and everything. Do you remember when you were helpful with that? How did you help me?

I would earn the money by helping you with your medications. I would earn like five dollars.

Would you do?

I would help sort your medications for a.m. and p.m.

Oh., And what else did you do with my medications?

I don’t know.

You don’t know. You don’t remember helping me with my shot?

Oh yeah, when I put your shot in your butt.

You put my shot in my butt, yeah.

[Giggles]

You thought that was pretty funny, didn’t you?

[Giggles]

That was. That was kind of fun.

Also, when I would help you find your medicine cases on my softball field. I remember when I found your medicine case of my softball field.

Because I can’t feel my hands sometimes and I just dropped the medication from my pocket somewhere and you help me find it. You have been very helpful. So…

Also, sometimes if a pill falls on the ground, I know what to do versus, also it sort of gives me an advantage because, like, I feel that when you have your MS it helps me be more responsible because sometimes when I find pills on the ground I know what to do versus some other kids, if they find a pill on the ground they just grab it. But I just stand near it and just say, “Daddy, I found one of your pills,” and just when you come over, I give it to you.

Yeah, because it’s tough because I have a lot of pills.

Yeah, you have a lot of pills!

And sometimes, and sometimes I lose track of them, and you are very helpful. And you are very responsible with that.

Also, if I find stuff under the bed that’s yours, I give it to you.

I kind of lose track of my pills a lot, don’t I?

[Giggles]

I do. But, you don’t have to laugh at me!

[Giggles] You’re laughing too!

Yeah, it’s kind of funny. So, if there is one thing that you wish we could do, if I did not have my multiple sclerosis, what is it?

Uh, play basketball.

Play basketball. That would be fun. I don’t think we’ve ever played basketball together, because when my multiple sclerosis wasn’t bad we didn’t play basketball together. We did run against each other for a while.

Yeah, but that’s, with your multiple sclerosis, when I was younger it wasn’t bad bad. But in now that I’m older it’s a little worse. So when, you like, so when it wasn’t bad I didn’t even know about MS.

No.

I didn’t even know about basketball at the time. Like, I wasn’t interested in it. I just wasn’t anything. Also, I didn’t even know Rip City existed at that point.

Yeah. Now you know Rip City exists. Now you know basketball exists. And, now you know MS exists. That’s pretty crazy. All of them. And, we used to run together. Do you remember the last time I ran faster than you?

At Disneyland and I felt so sorry.

I felt so sorry because you were crying because you got so upset.

[Giggles]

You got so upset because I ran faster, because I could not run very fast even back then. But for some reason, I had a lot of energy that day, and I ran faster.

You were wearing your electric brace!

I was wearing my electric brace, and it may be run faster than you. And you got so upset and you were crying.

[Waah!]

Hah! All right. So, let’s talk about Bike MS. Does that sound good? Can you tell me what Bike MS is? Do you know what Bike MS is?

It’s where you bike to try and earn money to fight against MS. It’s where you, like, you bike and just celebrate and just try to get rid of MS.

That’s a pretty good description.

That’s why I bike a lot.

That is why you bike a lot.

That’s one of the reasons why I bike A LOT.

Because you are one of the number one fundraisers and pretty soon, in just a few years, you’ll be… What’s that?

I’m in third-place.

So right now, you’re in first place.

[Look of surprise]

The only person, the only person who is really close to you is Chris Crawford, but were going to get people to raise a lot of money so we can be in first place. What do you think about that?

Wait, so I’m in second place or I’m in first place?

You’re in first place right now and we want to keep you in first place. You are in first place by about $400.

[It is impossible to describe the look she gave]

OK, this is audio so you have to describe what kind of facial expression you are doing right now.

Oh, a mix between, “I just saw a puppy,” and, “I just had a surprise party.”

A surprise party with a puppy. That’s pretty good.

[Giggles]

That’s pretty good. So, we raise money.

And I’m tired.

And you’re tired.

Between the mix of I’m tired, I’m being silly, I just got into a surprise party for me, and I just saw a cute, adorable puppy that looks like Monte or Maddie.

Nice.

I saw a puppy that look like Maddie but also like Monte, like a mix.

That’s a pretty cute puppy.

Like, if you take the DNA from this and this and you just smush them, and you take the fur and fur, and you put it in a cauldron and just stir it up and get some bones and stir them in .

Put it in a cauldron!

[Giggles]

Boil, boil, trouble and toil. Come on now!

[Giggles]

OK. So, so we’re raising money this year. So, do you know how much money we’re trying to raise this year for Bike MS?

Six thousand, four hundred, three hundred, and a million.

We’re trying to raise $50,000.

How close are we?

Uh, well right now, we have, between regular donations and off-line donations, we have about $30,000. So we have about, we have about $20,000 to go. So, what do you think I should do to try and raise more money? I’ve done a lot of stuff and I’m kinda running out of ideas, so why don’t you. I need some of your nine-year-old brain power to come up with ideas.

I think you should, I think maybe I should start writing maybe a story. Like, a fairytale story. And then, you can publish the book and put it online and that would maybe help raise some more money.

That would be like the books I’ve written? And publish? Do you want to publish a fairytale story? You have a couple of ideas?

mmm… I have The Three Little Dogs and The Big Bad Squirrel. I mean, The Three Little Squirrels and The Big Bad Dog.

The Little Squirrels and The Big Bad Dog? You know, I think we…

I still have The Pineapple Adventures .

Here’s my promise, Ellie. By the time, OK we might not be to do it for Bike MS this year, but by the time, after Bike MS ends, by the end of the year…

This year?

…we will have, what was the first one? The Pineapple Adventures?

Uh, Big bad. Three Little Squirrels and The Big Bad Dog.

And what’s the other one?

The Pineapple Adventures.

Which one do you want to do first?

The Three Little Squirrels and The Big Bad Dog.

Will at least have The Three Little Squirrels and The Big Bad Dog, not only written…

Published?

…but published, and, we may even find someone to draw the pictures.

[Mouthing a question]

Like the guy…you got to speak up.

Like the guy who drew My MS and E?

Yeah. Do you know what his name is?

Billy Joel.

His name is not Billy Joel. His name is Nate Jensen and he is a phenomenal artist here in Portland. So we may reach out to Nate and see if he’ll want to draw this.

Yeah! [Happy dancing]

So,

[Happy dancing] Ow!

So, OK. Were getting close to wrapping up here and you’re getting a little silly. Can you think of any story about my MS, about me, about you, about us together, or any story beyond that the readers, because all of this is going to get posted in my story tomorrow.

Hmm…maybe about that time I tried to run from the end of the block from Red Robin, and just try and run into the arms of you.

That was pretty fun. And that was because, when we would go out of Red Robin, and you would…

And I would have all this energy from mac & cheese, and I’d just go like, “Weeee!” And then I’d turn around and go, “Weeeeee! Boing!”

And you’d come back, and you go back and forth, and back and forth.

And just get all this energy out. Get all this extra energy out. Get all this extra energy out! Get all those extra energy out! Woooo, and to do the can-can.

<Pause>

That has nothing to do with MS.

[Giggles]

Just wanted to tell that story, didn’t you?

[Giggles]

That’s OK.

[Singing] I want to do the can-can. Do do dodo do!

Ellie, you have a wonderful nine-year-old imagination.

[Singing]

You know what’s the good thing about, you know the good thing about your nine-year-old imagination?

What?

…is, since we’re related it’s going to turn into my 47-year-old imagination.

[Giggles]

And then, and then, you’ll be, you’ll have you’ll have Three Little Squirrels and A Big Dog, and you’ll be running down the street at Red Robin, and they’ll be doing the can-can. It will just be one big ruckus.

[Giggles. Singing. Dancing.]

OK. So, we’re going to sign off here from the interview here, Ellie. Now, you have, you have a minute to talk to my readers and tell them what you want to say about Bike MS. What do you want to say about fundraising?

I would. If you could, there’s a website, uhm, somewhere. My dad can tell you about that.

I will share a link.

Uhm, and if you could sign up there and then raise some money that would be great, and maybe I’ll publish that book that I was telling you about, if you raise enough money. So, thank you. BYE!

Thank you!

***

The hope is that Eleanor’s story, and the enthusiasm we share, will inspire your donation in this fight. http://main.nationalmssociety.org/goto/eleanor.

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we ride!

Please donate today: http://main.nationalmssociety.org/goto/eleanor

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

www.neverstopneverquit.com

www.neverstopneverquit.blogspot.com

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.