Five Minute Friday · Intentional Living

Five Minute Friday: Ready

Since last December, it’s been lurking in the background. And elephant in the room that I am always conscious of, but that others might not even notice. One which is no end of frustration, especially when it comes to shoe shopping.

Yes, shoe shopping.

You see, I have an invisible illness. I guess I didn’t even realize that until a few weeks ago. But if you meet me, you won’t know that anything is “wrong” with me. I seem normal.

Normal day riding bikes with Dad.
Normal day riding bikes with Dad.

In reality, I have a form of Muscular Dystrophy called Charcot Marie Tooth Disease (CMT). My teeth are fine, but my legs aren’t. I have decreased sensation and muscle mass, and it’s degenerative. In normal people terms, I walk funny and it won’t get better. πŸ™‚

Some days, it’s hard. I can’t easily squat down on my knees, but my job requires it. I can’t run or walk long distances. And I wear leg braces.

Which brings me back to the shoe shopping. Do you know how hard it is find show that fit a custom insert and leg brace footplate?

Anyways, I’ve been hiding this invisible illness as much as possible. Long pants and bulky shoes. It’s easier than dealing with the questions and stares. But you know what?

I’m ready for something different. I’m ready to #baremybrace and start sharing a little bit about this invisible illness. Just because I wear bit of metal carbon fiber on my legs and walk a little funny doesn’t mean I can’t do what I want to do, and I’m ready to tell you that.

Mom and I, baring our braces.
Mom and I, baring our braces.

Talking about it means I can share what life’s like in my shoes (no pun intended). I’ve had 9 months to process what my new “normal” would be, and now I’m ready to share.

Because, really, I’m not all that different than you. I just have some fancier leg decorations. πŸ™‚

Stop.

As usual, I’m linking up with Kate for Five Minute Friday. Check out the complete awesomeness here, and come join in on the fun!

Also, it’s invisible illness week, and I chose to write (really for the first time) on my experiences with an invisible illness. Check it out here!

-Jen

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33 thoughts on “Five Minute Friday: Ready

  1. Thank you for being brave and sharing! You are a beautiful friend and every minute I spend with you each week, I am blessed by your humor, knowledge and grace. Thank you for being who you are! Love you friend!

    1. Mary, you are just the sweetest! Don’t you know?! I really enjoy our #FMFParty time together, and whenever else we chatter. So glad to have “met” you dear!

    1. Thanks June! I’m trying to get over some slight animosity towards my braces….slowly but surely! πŸ˜‰ But they help me be so much more mobile, that it’s all worth it!

  2. Hey Brave Jen- Thank you for trusting us with your heart.
    I think you are pretty well awesome for sharing this part of your story and not hiding that part of you. We love you not in spite of, but because of. Thanks for being real. Rock it, girl.

    1. Thanks Cynthia…this is why I love this community. The realness, and the encouragement. Even when it’s a little scary to be pressing the publish button!

    1. Shoe shopping! Goodness gracious…I always go into it with such high expectations, and the pfffttttt….I leave mad. πŸ˜‰ Who needs shoes?

      Oops, actually I do. So….hmm.

    1. Thanks Brittany! Most days it’s less about being ashamed, and more about being frustrated. Whether it’s with my physical conditions or explaining once again what’s on my legs. But it’s time to stop hiding my disability and show off my ability! πŸ™‚

  3. I am so happy you shared this! You talked to me a bit about it awhile back but you never mentioned the limitations etc, just that you had a disease with a funny name. Had you not said anything about that picture of you and your mom I would have guessed you guys liked to wear your socks up high! πŸ˜€ I am proud of you for stepping forward, clunky shoes and all, so many of us have “invisible” illnesses and the only way to make them seen is to stand on the rooftops and scream! ❀ you girl!

    1. Hehe Marisa, if I wore my socks that high, I might be a little goofier than I already am! πŸ˜‰

      But you are 100% right. There’s no reason to hide them, and I should feel blessed to share my experience when someone asks me what’s on my legs. But it’s not always that easy, hey?

  4. You, amazing you! I love that you are brave and ready to share with us more about your illness. I can tell you have a beautiful heart. This just made me smile. And if you need more bravery to share more you have a whole community to support you!

    1. Yes, Maria, isn’t this community awesome?! What a blessing to have the support of others as I share something that some days, I’d rather hide away.

  5. Girl, you are speaking my language! I am drawn to those, especially to women, who can be transparent and share their real-life stories and circumstances! Thank you so much for sharing yours. There no need to hide a thing in who you are… His beautiful creation. God will use your transparency to bless another! You’ve already blessed me and encouraged me today. Keep sharing and inspiring those around you. I’ll be praying for you. I’d love to meet up with you sometime, somewhere, when our schedules allow. πŸ™‚

    1. You are such a great encourager, Julie! People like make me feel confident in sharing my story and being transparent, because you’re always there to support me! Thanks YOU!

      And yes, we need to find a time to get together! πŸ˜€

  6. It’s healthy for you to say what you were hiding!!! And you are like me and the others women all around the world!!! We all are daughters of God and He will help you on everyday.

  7. Jen, I only got to read this just now & was so blessed by your courage. May I just say…both you & your mom are beautiful! May God use you to infuse others with His joy & strength. And may He keep your legs healthier than ever expected! Blessings!

  8. Sometimes #FMF throws up a priceless gem amidst all the beautiful precious stones shared here. Your site is that gem for me today. So glad I found it and had time to browse a bit. I’ve signed up to follow your posts cause I love the sound of your 31 days of African memories. Looking forward to magical moments here.

    1. Hi Juliet, thanks for the kind words! This is why I love the FMF community…all these connections that can only happen because we are coming together (writing together) online. I’m really looking forward to the #31days challenge, and am glad you’ll be following along!

      Thank you for being such a sweet encourager today!

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