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People know Them…They’re kind of a Big Deal

Ok, guys, this post is definitely my favorite to date. In total of pondering, collaborating and writing, this project took 3.5 months and it’s finally here!!! I am SO excited to share it with you! 

I spiced things up and interviewed 3 amazing individuals, but this wasn’t just your typical interview…

I reached out to a coordinator through the MDA (Muscular Dystrophy Association), laid out my idea and she quickly, in turn, offered to help. My proposal to her was to find individuals with a disability who were willing to take part in a photo shoot/interview I was wanting to build. Keep in mind, I put this together solely on ideas and ‘Day Dreams’ I stirred up; I had no idea how it was going to come together, or even what I was going to do with the end results, but I knew I had all the right resources to at least try. I asked a handful of my friends who all have great, different talents to help; which all, without a beat, climbed on board. Each and every one of them was JUST what I needed–a photographer. Check. A hair stylist. Check. A make-up artist. Check. Two staging designers. Double check. So, we had our hair curled all nicey-nice, some flawless make-up applied, great backdrops/props for the models and some smiling faces for the camera. It all fell into place. 

With the chilly months ahead, we didn’t want to go too far into November since Aubrey (the photographer) likes to shoot outside for the natural light. So, after I got my participants, we aimed for November 7th, at one of my favorite parks in beautiful Webster Groves and away we went. One participant, Sarah, wasn’t able to make it at the time we had, so Aubrey and I went to her earlier that day and shot some great pictures on SLU’s campus. I have to give a big thanks to Sarah for still participating, even though the rest of my crew (hair, make-up, and staging) couldn’t make it. You still rocked that camera with your top knot and make-up!

After the shoot, I wrote out some questions to introduce these wonderful peeps and have them share a piece of their life to you all. These gals & guy were a blast to get to know and I’ve learned a lot from them; I hope you do too! A big part of knowledge is spreading awareness and that’s exactly what Crystal, Kelly and Sarah did! 
Let me introduce you:

Meet Crystal…

She is a beautiful mother to an 11 year old son and wife to a loving husband for 17 years. Crystal and I not only share the wonderful gift of being a mother, but we whole heartily understand each other when it comes to Friedreich’s Ataxia (FA). Crystal has been diagnosed with FA for 19 years and uses a wheelchair full time. BUT this does not stop her from living to her highest potential. Like I mentioned before, she is a Mom…that alone is a full time job and one of the toughest ones, at that! Crystal also holds another job–she is a substitute teacher (primarily elementary) and her absolute favorite, is to sub for Special Ed. How wonderful! 

 Crystal is a family gal. She loves spending time and being adventurous with the ones she loves most. Before diagnosis, Crystal was very active. Her and her hubby went to the gym about 5 times a week. She enjoyed walks, hitting the batting cages, going to the river, hiking, camping and lots of traveling. She, family & friends went to tons of concerts, bowling, shot pool, and the list goes on…
Pretty cool chick, huh?!

When asked what her life would be like without FA…

“If I did not have my diagnosis my life would still be similar to what it is now. I had always worked in administrative jobs, so I may not have gotten into teaching. I did not go to school to be a substitute teacher until after my son was in elementary school. But my life would still revolve around my family, only I would be able to be more of an active participant than I am now; such as: going on bike rides, hikes, theme parks, taking walks, jumping on the trampoline with my son, etc. I would participate more instead of just watching or hearing about the activities they do.”  

 

A question I find important to ask…. “What is your biggest challenge/struggle?” Why? Some may frown upon this question; thinking you’re focusing on the negative, but that’s not how I see it. It will allow you to look deeper and scope out the feels. Their emotions. To show you that ‘The Struggle is Real!’ Like real, real. 

“I have many physical challenges but the biggest challenge would be emotional. It is a challenge to stay positive when I lose abilities that I had before, and it is hard to stay positive when I see so many people doing things that I want to do and cannot. Many times I will feel like I can still do something, then I try and fail. It is frustrating. Most frustrating is seeing my husband and son be active and not being able to join.” 

Amen, Crystal, Amen. I truly get it; especially the part about not physically being able to join in on certain things with your kiddo. That’s got to be my biggest challenge/frustration as well. And it effing sucks. 

But there’s always something positive to come out of a disability. An eye opener. A sign. A new perspective. And Crystal has shown that…she has become more empathetic and understanding towards others. “It has helped me to be a more caring person.”
A very true and humble message Crystal has is (and y’all better take note): “Be kind. Everyone has his or her own battles and you never know what someone is going through. Be kind, be understanding, don’t judge, and don’t hate.”
☝🏼☝🏼️Nailed it! 

Meet Kelly:

This cool guy is a fighter against FA, as well. He was diagnosed in ’93; 23 years ago. 

Kelly said he was diagnosed at the age of 17. But wait! 23 years ago?? 17 years old?? There’s no way! 40! He’s 40! Shut the front door! I about fell outta my chair. No freakin’ way! This guy ages amazingly! I want your trick! 

Kelly went to Dupo High School in Illinois and achieved an Associate’s Degree in College before it was getting too hard to get around. 

What was life like before FA?

“Pretty much a normal childhood up until 1992, although I knew I was a bit different in my younger years.”

**With someone who is diagnosed in their teens versus a child, it’s typical to notice symptoms years before diagnosis. Just being a bit more clumsy than the norm, tripping, feeling ‘off’…

Some of Kelly’s fav things to do are: working out, watching movies & TV, and staying up to par on all sorts of social media. 
Kelly wrote, if he didn’t have FA, he would’ve played more sports in High School, pursued a modeling career and/or opened his own stereo shop. And that could still be a possibility! Don’t stop chasin’ dreams, Kelly!

Kelly said his biggest challenges change a few times during the year, as things become more difficult to do. But that has not stopped him from hoping for a cure! Kelly maintains that hope, while continuously keeping himself healthy. 

A positive Kelly has gained: “I have met a lot of nice people because of this disease.” 

I can second that! There’s been some wonderful, kind-hearted people I’ve met throughout my FA journey thus far, too! And I know there’s more to come!

Meet Sarah…

This beautiful soul is a 23 year old Graduate student at SLU, mastering in Public Administration. Sarah has a diagnosis of Spinal Muscular Atrophy (SMA) Type II. As you will soon learn, this doesn’t even come close to defining her. Sarah has achieved so much and her future is so bright! 

SMA affects motor neuron communications with voluntary muscles.  Basically “I can tell my arms to move, but they will only move part of the way or if I tell my leg to kick, my muscles will only flex.” With SMA, as your body ages, and grows, it becomes harder to move. The best way to explain it is: “I have the same amount of muscles as a 6 month old. I can’t grow muscle, but if I continue to use the muscles I do have, I will lose them slower than other people with SMA, who may not use them as much. I did a lot of therapy as a kid, and have continued as an adult. I like to think that has helped me a lot. I am 23, and I still have use of both arms, and I can still lift the same everyday objects I was able to lift in high school. I call that a success.”

Heck yes, Sarah! What a success, indeed! 
Sarah was diagnosed when she was just a baby and doctors had told her parents she would not live past her early adolescent years; but here she is! 
Sarah uses a power wheelchair for mobility, and a Hoyer Lift for transfers. She also uses several accessibility features on her Apple products; such as: Assistive Touch on her phone and Sticky Keys on her laptop. How cool is that?! Gotta love technology!
However, this does NOT slow her down one bit! If anything, she is quite the Go-Getter. On top of Grad School, Sarah works Part Time at Nestle Purina in Diversity and Inclusion. She’s ALSO a volunteer for Paraquad in the Public Policy and Advocacy Department. She is organizing a Campus Solidarity Alliance between all of the Colleges and Universities in St. Louis City and County.

^^^^^^^uummm, WOW! This right here is called dedication! Amazing! 

Even though, she is supes busy pursuing school and work she has a few hobbies up her sleeve. Sarah loves to swim and play Power Soccer—4 players to a team in a power wheelchair. She loves to be creative, whether it be extensively planning her week in her planner using stickers, washi tape, and glitter; sketching; painting; or coming up with new recopies to try out. She isn’t able to cook independently, but will do what she can and instruct friends/family members on the rest.

Sarah’s future goals…

“In six words: I want to change the world. In a paragraph: I want to make life easier for people with disabilities. I want to start with Missouri Medicaid, and then go bigger. People with disabilities face so many un necessary barriers to participating in the middle class. I would like to eliminate some of the barriers. I also want to change people’s attitudes. I want disabilities to be accepted in the US. There is still a lot of stigma around disabilities, and I would like to eliminate that. ”

I’m having a hard time putting into words how amazed I am by your proposal. There are many negative stigmas placed around ‘disability’ and I, too, would love to see that change. You have my vote–Sarah for President!

What would life be like if you didn’t have SMA?

“This is something I grapple with a lot. And I often think about what kind of person I would be if I didn’t have a disability…Would I have the same group of friends? Would I still be in Grad School? Would I have gone down a completely different career path? Would I be as close with my family? I like to think that I would be mostly the same; have the same interests; the same friends; and be as close to my family as I am now, but I also like to think that I would have a different career. I would be an Occupational Therapist or a Teacher. And I would be more athletic– I probably would have been a dancer or a cheerleader, and played soccer.”

And for my closing question…

If you had a message to share with the world, what would it be?
“So many:

1. Just because I use a wheelchair does not mean I have a cognitive disability.

2. Ask if I need help before actually helping me—I will usually accept help, but sometimes I really don’t need it.

3. I am not too pretty to be in a wheelchair. Beauty and disability are not mutually exclusive.

4. Life isn’t easy for me (or others with disabilities) but I (we) don’t need your pity. 

5. I love my life as it is, and don’t wish for a cure every day, thinking about my disability doesn’t consume my every waking hour; but if someone were to offer me a magic pill that would allow me to be able to walk I would absolutely take it. 

6. Don’t hesitate to ask me questions. Don’t be rude when asking, but ask. I probably won’t mind answering.”

Meet Yours Truly…

Although, I’m sure by now we’re fully aquinted. I didn’t really want to write about myself, since you already know so much from all my other posts, but since I joined in on the fun and got pampered I’ll give a short and sweet bio…

I am a 28 year old Mama to a strikingly handsome 4 (almost 4 1/2. He would be so upset if I didn’t throw that “1/2” in there) year old son, Eli. He is my pride and joy. 

I was diagnosed with Friedreich’s Ataxia 6 years ago. I was still mobile and walking independently, but clumsy. I became pregnant at 23 and started using a walker shortly after. I still use the walker, but take more advantage of using a wheelchair for long distances or anything that would require lots of standing. I fatigue a bit more and try to take small breaks if I’m busy. 
When FA became more apparent, I let go of my position at a Preschool to concentrate on my health and my child. It was hard to let go, I still miss all those kiddos. And to think, most of them are in 2nd and 3rd grade now! Geeeeez!

Lately, I’ve been dabbling into much thought and research for the future. Work? Graduate School? Both? Can I juggle all that with FA and Motherhood? Am I nervous about adding a bigger work load? Hell yes. Am I being a baby about it? Probs. But I have to get over that hump. As I was feeling down and out about what direction I should take, something fell into my lap. Literally. I was reading someone’s post on FB on my phone and it fell right on my lap. I’m a sucker for signs, so I took it as one. As I’m reading this post, I thought “OMG! I want to do this. It has so much goodness about it!” I was instantly drawn to it, but also a bit hesitant to join because it’s sale based. As much as you sell, is how much you earn.  Of course, I ask myself all sorts of questions: “Can I make sales? Will people be drawn to it? Can I actually make a career out of this? Can I juggle the ‘physical’ part? But after some long thought, I went for it. I want to dedicate my time in [hopefully] building a successful business with viaONEHOPE. That’s right. You’re looking at the new Cause Entrepreneur for viaONEHOPE! This company is based mostly on wine (with some other stuff too). Now you know why I joined, right?! I might be the biggest wine-o ever! AND this company has paired up with multiple charities; so every wine sold, a percentage is donated to charity. It’s a win for everybody! You’re going to buy wine anyway, so do it for a great cause and order through me! Another bonus, it’s shipped to your door step…you won’t even need to throw on underwear to go to the store! Seriously though, I won’t blow up your news feed ALL the time, just some of the time😉 There’s so much more to it than I’m sure you think, so, contact me about it or browse through my site:

 www.viaonehope.com/erinkate

There’s wine, coffee, gift packages….great stuff, guys. 

Since I rattled more than I intended, I am going to end with “what message would you like to give to the world?”

My message: Look beyond someone’s physical limitations because they have so much intellect, knowledge, kindness, personality and love to give. Get to know their soul…that’s what speaks. 

Time to meet the crew. The ones, who behind the scene, made so much happen. 

Meet Kristine…Our wonderful hair stylist who spruced up Crystal and my hair. This beautiful Momma JUST opened her own online boutique called ‘PrueE’. www.prueeboutique.com Lots of darling clothes and accessories! Check it out!

Meet Rachael…Super, duper, funny and beautiful, Rae, is a hair stylist and make-up artist, who dolled us up with some make-up. She co-owns a salon called ‘Glow’ in St. Louis. I encourage you to let her pamper you!

Meet Alyssa & Kelly…Alyssa Kelly 

The amazing fluffers. I kid, I kid! These two have quite the eye for design and staging! Lys and Kells have been friends of mine since High School and are always my go to gals when I need fashion and decor advice. If you like an outfit I’m wearing, more than likely it’s one of theirs 🙂 

Meet Aubrey…

I love this girl so much. Not only was Aubs our photographer for this shoot, but she has been the photographer for my son, Eli, his dad and myself for the past 4 years. She started her photography hobby on my son when he was 6 months old and has gathered up quite the list of client ele ever since. Most of the awesome pics you see of my kiddo on Facebook are Aubrey’s work. Check her out & schedule a sesh!

This experience has been so heart warming. I met 3 new cool cats, who I now can call friends. You all have brought inspiration and allowed me to see there’s so much out there I can still do. I thank you for allowing me to share your life journey. I also want to thank my crew for helping me make this really come to fruition. I would absolutely love to do something like this again. Let me share your story…

Some extras of all:

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2 thoughts on “People know Them…They’re kind of a Big Deal

  1. Hi Erin! I am the new-ish Associate Executive Director at the MDA! I worked for the organization from 2011-2014 and then left for 2 years and I am back! Therese passed this along and it is amazing! Although I knew Sarah and Kelly pretty well already, I feel like I was able to learn more. It was also great to get to know Crystal and yourself. This was very well written. Thank you for taking the time out to reach it and to your friends for the hair, makeup and photos. I hope I get to meet you in person soon. Happy Holidays!

    Sincerely,
    Colleen Mattaline
    cmattaline@mdausa.org

    P.S. I just sent you a friend request on Facebook! 😉

    Liked by 1 person

    1. Thank you, Colleen!! It was rewarding for me to put this together. I’m so happy I had all the help to make this happen. I would LOVE to do this again…if you/Therese have any leads for me, I’d like to get them on board in the near future. I’m glad you liked it 🙂 Hopefully, I’ll meet you soon.

      Like

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