Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.
I find that I often have to talk about Duchenne. It seems to permeate every relationship and nearly every conversation. It's not so much that I'm obsessed, rather, it's that Duchenne is relevant to absolutely every area of my life. Usually, the conversations stick to a question and answer format.
Adult: It's nice to meet you, Ivy. What do you do?
Ivy: I'm a writer.
Adult: Oh. What do you write?
I: I write a blog.
Adult: What's it about?
I: It's about my family and our life with Duchenne muscular dystrophy.
Adult: Oh. (Long, uncomfortable pause during which I wonder how much eye contact is appropriate while I wait for option A, B, or C to congeal… )
Adult: (obviously uncomfortable) Well it was good to meet you. (walks away)
Adult: Oh, my cousin had MS. He cured himself with vitamins/prayer/snake oil. You should try it! … Wow. … That's a real bummer. (I force my eyes not to roll and attempt to exit gracefully and quickly.)
Adult: I remember something about muscular dystrophy I think. Was that in my genetics class? Or maybe that was what the kid down the block had when I was in grade school. Let's go get a drink and you can refresh my memory on the way. (I smile because of course, I'd like a drink while I lecture you. Deep breath. Gauging education level … Shall I jump right in with "… X-linked genetic mutation which causes progressive degeneration of blah, blah, blah," or would this person be more comfortable with "his body doesn't make any dystrophin, which is kind of like the glue that holds the muscles together."? … Ok, begin automatic fact dissemination. I have become a robot, drink in hand, but I'm much better off than I was with A or B.)
Those are the conversations with the most facts in them. But most of my conversations about Duchenne are not with adults. That isn't because the adults around here are not rude or inquisitive, rather the adults around here tend to just stare.
I'll be out with Rain, pushing him in his wheelchair. A child, typically under the age of 7, always under the age of 10, will stare at us for a minute, then walk right up to us and begin:
Child (to me): Why is he in that? (being too young for the big vocabulary word, "wheelchair")
I: He's using a wheelchair. This is Rain and he's six years old. Why don't you try asking him about it?
Child (obediently, to Rain): Why are you in the … (pauses for lost vocab word) ?
Rain: I use my wheelchair for long walks so I don't get too tired.
(This is usually when the child's adult and/or older sibling starts to notice that their kid is missing.)
Child: Oh. Ok.
(And here is where the child's adult usually tells him or her that it's time to go, without a word to either Rain or me. Alternately, this would be when the older sibling will initiate a word-for-word replay of the conversation, including the expected adult behavior pattern. I try not to laugh in their faces at the circular nature of this absurd exchange.)
Once, and only once, when my questioner was a toddler out with her mother, the mom came into the conversation at the appropriate place and acknowledged Rain first, then me. I gave them both PPMD bracelets.
Of course the other version of my circular child conversation, almost always from the 7-10 set, begins with,
"What's wrong with him?," or, more commonly around here (thank goodness for any modicum of childhood politeness),
"How did he get hurt?"
The conversation is essentially the same as with the younger kids, only instead of defining the word wheelchair I tell them,
"There's nothing wrong with Rain. He just has muscular dystrophy, which is something he was born with. Why don't you try asking him why he uses a wheelchair?"
And then there are those other conversations, my conversations with Rain.
Rain: Today at horseback riding I said that I was too tired because my muscles were breaking.
I: That's good, Rain. I'm glad you could tell us when you were getting tired because when we stop and rest your muscles won't break as much.
Rain: (still thinking about the concept of muscle degeneration) When I'm all grown up I'm going to drive a power wheelchair! (This is one of Rain's most exciting ideas. He really, really, really wants a powerchair because they are the coolest wheels my boy can imagine. Hey, they cost the same as a Corvette, right?)
I: Mmm hmm.
Rain: Does that mean that I'm coming to be like Zak (one of our local Duchenne friends, who, at age 16, drives a power chair and has very limited arm mobility) ?
I: (Finally catching my full attention, I'm thinking fast.) I really like Zak. He's smart and funny and he's always kind to little kids. You can be like Zak as much as you want to, honey. I'd like that.
Rain: (as I'm re-brushing his teeth for him after he's given them a cursory once over) When I'm a man I won't need you to give me a touch up anymore. I'm going to brush my teeth all by myself.
I: Well … we'll see, sweetie. A lot of the grown up guys with Duchenne need to have a helper for doing things that use muscles to do, like brushing your teeth. A man with Duchenne might need help with a lot of things that a man without Duchenne might not need help with. What men with Duchenne are really good at, that they don't need any help with, is being responsible for themselves. They can tell their helpers how to do it (politely, please!) and they can write books and compose music and make art … hey! We know a man with Duchenne who's a firefighter! He uses the computer and the phone to tell the other firefighters where to put out the fires.
Rain: Mr. Moeschen has a flying machine in his bathroom. I saw it in a movie on the computer. He can fly to the shower and the potty! (Flying to the potty, being, of course, the epitome of awesome to my 6 year old boy.) Can I have one like that?
I: That would be pretty fun, wouldn't it?
Rain: That would be really fun! I want to be able to fly from my room all the way into the bathroom and then …. (Rain proceeds to tell me all the places he would like to fly and we get into a deep conversation about how lifts that are attached to the ceiling require a ceiling in order to work properly.)
Rain: Mom, am I going to die?
I: Well … (sweating bullets … um, think, think! … um … Oh!) Well, yes, yes, of course, sweetie. Each and every animal and plant, every person, every being that has ever been alive in the whole wide world will die someday. Death is like the other side of life. It's a part of life, a part of nature, and it happens to us all. You, me, everybody. We feel sad when someone we love dies because we will miss them. But I don't think they feel sad.
Rain: Like Uncle Marc and Grandma Cay. But when am I going to die?
I: My darling, dearest boy (big hugs), no one knows when he or she will die. Each of us will do it at the one and only perfect time for us. We won't know when that time will come until it gets here. But one thing we do know is that we are alive right now. And that means that, for sure, our one and only, unique and perfect time to die is not here yet. Now is the time for us to live.
We'll be doing a lot more talking about Duchenne over the years. Some of the conversations are funny. Some are poignant, some annoying. But I believe that what we talk about, and the way we talk about it, becomes what we live, who we are. I love to tell my children that there's nothing wrong with them and a whole lot right. I'm interested in them and what they find interesting. I'm proud of them and I like who they're becoming. I love to tell my children that they are loved, and safe, and perfect, just the way they are. And that's the best, truest kind of talking, about Duchenne or about anything else, that I can think of.