A.S. Faces Has A Hero “Kendra Wilson”

Hope. It is something that we all speak of; something that we especially understand. Hope is something we do not take so lightly, and often struggle to find. Before I began to write this, I looked back and read most of the stories again in order to better understand how to put this into words. They all seemed to have something in common, something that nearly all of us need to find in order to even remain sane through our constant struggles.  This ‘something’ was that longing for hope.  We all have very similar struggles. We all want to be comforted. We want to be heard. We want to know that everything is going to be okay. We want to be understood.

I am one of many faces of Ankylosing Spondylitis, in fact most may know me as face 141. I, like most of you have dealt with my fair share of inconsiderate people, rude doctors, and ignorant people. I never understood how some people could not care about anything rather than themselves. The amount of apathy in the world will never fail to amaze me. After I was diagnosed with AS, I never thought I’d meet anyone who could possibly even come close to understanding what our struggle is like; how we will never be able to lead a simple life, without having a ridiculous amount of worries that follow every little decision we make.  I found it hard to believe that I would meet anyone in my lifetime that would be as passionate about AS as you or I- who doesn’t have AS and understand the pain we feel.  I mean, why would they? If anyone heard the name of the condition they wouldn’t even be able to pronounce it for the first 18 times they went to recall it.  Therefore, to me, it was impossible that anyone would pursue the cause further than I myself have attempted, and I even have AS. SO, after playing all of this in my mind, all I could think was: I am going to be very lonely.  Or, so I thought.

                                                      Story Time

I now know, from the bottom of my heart that we have hope.  For the last few years, I have become really close to a lady. This lady is my basketball coach. She works, she coaches varsity basketball, she works with the youth program, she attends other school events to support her athletes, she is married, and I think she has a social life (it would be amazing if she did! Considering how busy she is), she has a dog, etc. You get the point? She is extremely busy, all the time. She works with numerous kids throughout our district and does a ridiculous amount for each and every one of them. Now, this is expected of a coach. They typically are expected to do things for the kids, help them out in order to succeed… but generally nothing more is expected.

This woman is the epitome of everything anyone with a chronic illness would need in their life. I know you all know the lost feeling you get after the diagnosis. You spend a lot of time questioning everything, and everything just seems to be awful. Quite frankly, it’s a bunch of crap. It’s not fair. But throughout this time period the people in your life really control how you are feeling. Just look at the quotes that are posted on this website, you’ve all read them and know they are true.  There is one quote posted that says, “Sometimes all a person needs is a hand to hold and a heart to understand”.  My coach has given me all the reason to not give up. If I had never met her, let me tell you… I would be lost. I hope we all have a person like her in our lives. Without her, I honestly don’t know what I’d be doing now. I would’ve given up the fight long ago. She reminds me that there is a reason to keep on pushing. She inspires everyone she meets; she has such a huge role in my life. She is my hope, my hero.

I’ve been on many different types of medication; specifically I’ve been on Enbrel and Humira injections.  Mind you I had to inject myself with these meds every week or biweekly. Now, ever since I’ve begun these, she has been right beside me for every single injection. She sits and holds my hands every week while my mother injects me. For those who’ve had injections like this, we all know they don’t exactly feel too great. So she does her absolute best to keep me smiling and distracted from the pain. As inconvenient as it may be, she never complains and even goes out of her way to meet me for an injection day. Not only does she come for every injection, but she even comes to my house if she catches wind that I am not doing so hot. She comes all the way to my house and brings me whatever I need, which is often candy J which automatically makes her the best in my eyes. But, seriously I can think of no one else who would do this, and she is my basketball coach. Going back to that she is just my basketball coach, she knows when all my doc appointments are, she researches AS to no end, and knows when all my injections are when I don’t even remember when I’m supposed to get them. She has gone far beyond what any average person would do in her situation, and it is very inspiring. Nearly anyone in her position could’ve easily just thought that dealing with somebody in my situation w/AS that they will graduate in 4 years, and there’s really no reason to get close to them. It is a ton of extra stress that nobody would care to have. However, she embraced the challenge and I truly believe that she will be a part of my life until the end. Some of my closest friends and family haven’t made the sacrifices she has made for me. I really consider her to be family. She is someone that I value quite dearly.

Now here’s the coolest part. I’m fairly certain that I am the only person that she is close with that suffers from Ankylosing Spondylitis. Yet, she has made the decision to help out a whole lot of people that she doesn’t even know. She took it upon herself to create a t-shirt (Kick AS!) , that she announced to my entire school that she’d be selling with my basketball team. She is working at selling the shirts and collecting as much money as she can for our cause. She is giving the proceeds to the SAA. Now, not only is she raising money but when she announced this at an assembly, she began a movement in my district. And let me tell you, this movement is spreading, and it’s spreading quickly. Kendra Wilson, does not have AS. And I’m fairly certain that she never will. She is just like everyone else, and yet is nothing like everyone else. She unselfishly made a decision. And that decision has in a way affected all of us.  She is going out and making a difference; educating. Something that I never would have expected from someone who doesn’t even struggle from what they are fighting for.

It struck me quite hard, when she made that announcement to my entire school. I had no clue what she had been planning at all. I had absolutely no part in her actions. This really makes me think about how if one person found it within themselves to care so much about something they know so little of, there’s hope out there people. There’s hope & I found hope, and Hope has a face ladies and gentleman. And that would be the face of Kendra Wilson, and those like her. They are the heroes that we need. So, be inspired. Go forth and advocate.

With much Hope,

Ashley           A.S. Face 0141: Ashley     

SPONDYLITIS ASSOCIATION OF AMERICA RECOGNIZES KENDRA!

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14 Responses to “A.S. Faces Has A Hero “Kendra Wilson””

  1. Your coach sounds amazing and much like my younger sister (we have no real biologic ties to each other but we are closer than sisters could ever be). Becky, was there in the hospital a year ago screaming at me to wake up when I flat-lined from complications from AS, she’s been there for every doctors appointment and every remicade infusion, she has truly given me all of my freedom back. I have been afflicted with AS since I was born and in the past 6yrs my health has taken a huge down turn. Eventhough I have AS, it doesn’t have me! I am very happily married for almost 9yrs to a soldier and we have 5 amazing kids together! I also volunteer as the leader of the Family Support Group for his unit which entails lots of meals and care for other families while their soldiers are away. Lots of gentle hugs to you and tons of encouragement. Your coach will be part of your life forever just as my sister will be part of mine. They are the true Angels of this world. ~ Jen face 25

  2. How wonderful!

  3. Wow! we need more kendras in this world. on behalf of mmy daughter and all those suffering with AS, THANK YOU!

  4. Thank you so much for your story. I will be joining the “Faces” soon. I just am starting to write my story. Hang in there, you are helping people with your story and incouragement. – Linda Fenton-Mendenhall

  5. Bravo! I’ve got a tear in my eye-and I’m a guy! It’s great there’s so much “good” out there in the world. I agree with you about the Enbrel needles Ashley. When our movement has so many “faces” we can elect presidents, I say the first thing we lobby for is SMALLER needles! (my weekly shot is in about an hour-and I’ll have a tear in my eye again unless I find “the dead zone”)

  6. Awwww ❤ ❤ Beautiful ladies…beautiful story. Thank you for sharing, Ashley! You are an inspiration and Kendra is BOTH a hero AND an Angel. ❤

  7. Tess Johnson commented on Ashley Latsch: Face 141

    Ashley, I appreciate your story so much! I just discovered this “Faces” page over the weekend, and through both of your stories (this one and the recent one about your amazing coach, Kendra), I was deeply moved and given hope. You see, my nearly-16 y.o. daughter was diagnosed with AS about 2 years ago, and she’s also on Enbrel (along with other meds.) She’s an accomplished athlete in the field of competitive swimming, so like you, she has had to re-evaluate her goals in her favorite sport, due to limitations from pain and fatigue. It seems that her reasons for swimming now have more to do with maintaining mobility than striving for national time standards, yet she still works her tail off to improve her times when her body allows her to. (Wish she had the support of a coach like your Kendra!! Hers is not quite that sensitive, unfortunately, and she struggles with the constant feeling that she is disappointing him.) Anyway, my main message to you is one of gratitude~you took the time to write your story, and that of your coach, and that gesture has touched more people than you realize. In fact, I looked up at the box in the corner of this page and it currently says that there have been 106,514 views of this page, so I’m thinking those would all be people who have been touched by your story. Thanks for shining some light on what it’s like to be a kid with AS. From what I can tell, it’s not the only light you shine~you seem radiant in many ways to me!
    Best and warmest wishes for a bright future~
    Tess
    P.S. I’m going to encourage my daughter to join this page of faces, too!

  8. Spondylitis Association of America Kendra, you are an inspiration and we thank you from the bottom of our hearts! What you are doing is selfless, loving, and shows the beauty in your heart. We are humbled and so very grateful. Thank you.
    And thank you, Ashley for the beautiful tribute to Kendra Wilson! She is a real life hero and an example of the goodness human beings can posses. ♥
    36 minutes ago · Like.

  9. Megan Gammon Brought me too tears 🙂 thanks for sharing
    18 hours ago · Unlike · 1.

    The Faces Of Ankylosing Spondylitis Isnt that amazing Megan Gammon 🙂
    16 hours ago · Like.

    Tanya Bieniek Messina What an amazing story and SO well told! We all need people like this in our lives. Fabulous!!
    6 hours ago · Unlike · 1.

    The Faces Of Ankylosing Spondylitis Yes we do Tanya!
    4 hours ago · Like

  10. Chantal Gauvin Gebro Wonderful story!!♥
    6 hours ago · Unlike · 2.

    Rhonda A Rock Wow!

  11. Ashley I’m really happy you have someone to stand by you other than your parents. I know how difficult it can be to be in pain and people that should be there for you just think your making up the pain. I was diagnosed with AS 1 year ago after many years of pain. I also have a 16 year old daugher that is struggling with pians like mine, but we are still in the process of getting some answers. She has had to quit some sports because she felt no support from her coaches or so called friends. So I’m really proud of you and happy you have a great coach like Kendra by your side.

  12. Inspiring.

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