maybe "rants" isn't the right word. these are simple thoughts about my life. some may be more colorful than others. some language may be offensive, but it depends on your definition of offensive. consider this your warning ;)

05 April 2014

The MDA and Me: Make a Muscle and Make a Difference

Picture your life when you were 17.

I turned 17 a couple months into my senior year of high school. I was just over a hundred pounds soaking wet, with not much of a clue of what I was going to do about college. I sat first chair in my high school orchestra, joined the Drama Club, and ran around the gym during rallies making me the first unofficial mascot in the inaugural graduating class of Deer Valley High School.

Successes? Um, I had won a handful of spelling bees and received a few certificates for perfect attendance, but not much else. Oh, I did win a dance contest in the first grade at my private school.

Struggles? I wore glasses and had to watch what I ate because of food allergies. My all-time favorite color is red. (But of course I had other phases: blue, orange, and yellow. Oh, yellow.) Matchbox Twenty has been my favorite band since I was in high school. And I love lemon bars—really any dessert treat or pastry with lemon in it (without nuts of course, since I’m allergic). I was just another kid who had never broken a bone, loved hugs, and laughed as much as I could.

In the last fifteen years I’ve graduated from high school, joined the Navy, deployed on a submarine, been to Norway and Scotland, learned to shoot multiple firearms, lived on both coasts, loved, lost, and loved again, earned a Bachelor’s in Theatre Directing, shoveled snow, cried in the sand, written the majority of my first book, and exchanged vows on a sunny January day in California before moving to Indiana where I am today.

But if someone told me when I was seventeen that I wouldn’t make it past my thirties, I’d probably have a better plan of what I wanted to do with my life.

The other day I got to meet a seventeen year old who very definitely knows what she wants to do after she graduates. She wants to major in Clinical Microbiology, ideally at Northwestern. And she wants to minor in singing. Over the last 7 ½ years she’s been practicing Taekwondo, and she’s currently a 2nd degree Black Belt instructor.

But let’s backtrack a bit first.

Over the last few weeks, I’ve been in contact via email with Alison Eckert. Alison is with the Muscular Dystrophy Association as their Fundraising Coordinator for Northern Indiana, and she wanted to introduce me to Nikki as a local ambassador for MDA in preparation for the MDA Muscle Walk on April 26th at Bethel College.

Through these emails Alison and I exchanged in coordination of this meet-up, I had not asked if Nikki was living with Muscular Dystrophy or if that she was talking to us as a representative from a family who is affected by MD. Alison had arrived first and so we chatted for a few minutes in the front of the store while we waited for Nikki to arrive. When she walked in with her backpack on and her blended beverage in her hand, I felt terrible for being so uninformed and doing some pre-judging in my head, because Nikki looked like any other customer that would walk into the store. She didn’t have any leg braces, canes, or a wheelchair. She looked…normal.

If it weren’t for Alison calling her over to introduce her to me, I’d have treated her like any other person walking into the store that day, or any other day. But in thinking about it, that’s the way it should be.

But it isn’t always that easy.

Looking at her, you would probably have no idea. And that’s the best part of getting to know someone. You find out about the stories you can’t see. But who I do see is in the break room at work. She sits on the opposite end of the couch from me, half cross-legged with one foot on the floor. The braid her brown hair is in curls around her neck, perched on her right shoulder, and her face is calm, adorned with black-rimmed glasses, framing her eyes that await questions I have not prepared. Her friend Alison sits in a folding chair in front of us on the couch, but she turns to face Nikki, the woman of the hour, as if to silently defer.
Alison (left), Nikki (center), and myself at Old Navy.

I was not prepared to do a one-on-one interview. I was hoping for a small group of us to be in attendance for their visit, but the universe had other plans, so I decided I would take notes to share with the others. What happened over the next hour (and I hate to sound cliché, but it’s true) literally changed me life. What I learned from Nikki and Alison accelerated the development of a bit of my work life, and plenty of my personal life.

After some small talk and getting settled in the break room while we waited a few more minutes to see if anyone else would show up to meet Nikki and Alison, I decided that I just had to jump in and just start asking questions. I apologized for my fumbling around, but I was swimming in awkward attempts to be politically correct and sensitive and inoffensive and didn’t know how to bring up what we all knew she was there to talk about.

What was I supposed to ask? These were my options in my head:

“What are you suffering from?” Because she definitely didn’t look like she was suffering at all. She looked more lively and moved more enthusiastically than most people I see day to day.

“What is your affliction?” Does anyone even talk like that?

“Why are you a part of MDA?” Is the MDA a club? Was she initiated like a sorority? C’mon, Marlon.

While I considered my options, she just went ahead and said it because she knew that’s what I wanted to ask but didn’t have a way of asking it “nicely.” She called me out.

“ ‘What’s wrong with you?’ Right?”

Right. Even though I knew that was a rude way of asking, in addition to be incorrect because I didn’t even think there was anything wrong, incorrect, or in any way negative about her.

Nikki Losievski is living with Spinal Muscular Atrophy (SMA type 3), which affects a portion of the nervous system that controls voluntary muscle movement. SMA is an invisible muscle disease with genetic roots that doctors don’t even know if it’s hereditary or caused by a genetic mutation. That means she doesn’t know if she got it from her parents or if it’s due to a surprise abnormality in genetic coding. In turn, that means researchers and scientists are challenged with finding a cure let alone a solid treatment since they don’t even know its origins.

And that’s just the overview of why MDA plays a part in Nikki’s life. Before last summer her family didn’t even know she had SMA. She had shown signs of as early as 18 months, but not everyone has been helpful, or correct for that matter, along the way, including two incorrect diagnoses of Cerebral Palsy and Congenital Myopathy. She admitted that one doctor even told her, “Yeah, you’re not gonna be walking much longer,” and that she would be “lucky to make it” into her twenties and thirties.

Did you miss the part where I said she’s a 2nd degree Black Belt in Taekwondo? Well she is. And I was subject to a fraction of that strength when she slapped me a strong high five before she left.

So how does the Muscular Dystrophy Association play an integral part in her life? There are plenty of services available to her and her family, but the most fun comes from camp. One week out of the summer, kids and young adults from 6-17 years of age gather for plenty of fun and safe outdoor experiences, partnered with a camp counselor of their own. Nikki loves MDA Camp for many reasons. One of the first things she said is that
“[MDA camp] is a place where you’re actually normal.”

Nikki goes on to say to summer camp is a great way to “hit the reset button” and “build a support system.” At a place like this, no one has to feel different, out of place, or fear being bullied—something that happens weekly, if not on a daily basis at school. Additionally, there is a 1:1 member to counselor ratio, and one of the best perks for parents and caregivers is that they can attend at no cost to their family. The cost of $800 per child is covered by MDA (thanks to donors like you) to provide a safe, fun, worry-free environment where these children and young adults can focus on sharing stories, making friendships, and living their lives instead of a muscular disease controlling them.

As the Community Leader at my Old Navy, it’s up to me to partner with community organizations and get our team members to provide services and assistance to the neighborhoods we live in. I signed up to do the MDA Muscle Walk because it was opportunity to help out, but I knew I had to do something more. It’s one thing to share my personal fundraising page for the upcoming event, but I think of all those pictures and links with captions that scream “1 LIKE = 1 RESPECT” or “RT OR USE #[inserttragedyhere] TO SHOW YOUR SUPPORT”.

Medical research, flu shots, and services like summer camp can’t be paid for with retweets and likes. They need monetary donations. Alison kept it simple, saying that donations “provide hope.” And what did Nikki have to say about why you should donate?

“[Muscular Dystrophy] deprives kids of having an actual childhood.”

Nikki is not SMA, just as her friends are not ALS, Mitochondrial Myopathy, or Duchenne Muscular Dystrophy.

Nikki Losievski is a 17 year-old junior at Penn High School whose favorite dessert is coconut cream pie. She’s a younger sister and a daughter. She loves metalcore and rock. Her favorite bands are Parkway Drive and Black Veil Brides.

She is not her diagnosis.

But she is the reason I’m sharing this story. She is now a personal connection to the MDA, and why Team Old Navy is fundraising for and participating in the MDA Muscle Walk on April 26th. I started on this path with MDA because it fit the bill for a work-related responsibility, but I’m continuing because I have the opportunity to help someone else.

1 comment:

  1. Thanks for the insights gathered and shared well, even if it was a little unconfortable getting started.