My Disability Experience: Falling

Hi, friends. I have always appreciated posts where people shared their struggles in life. Exposing our vulnerabilities helps us relate with each other. This post is the start of a new series where I speak about different aspects of my life with a disability (Friedreich’s Ataxia). 

Before vs. After–Assistive Devices

I’m 25 now and have been using assistive devices since I was about 20. In high school, my disability had not progressed that far, so I didn’t fall often. Since my gait was off, I stumbled and staggered when I walked, so I was self-conscious that I would someday fall at school. I was paranoid that people were laughing at me and talking about me as I walked by (some people were, but that’s a subject for another post).

neonbrand-426918-unsplash

It’s sad yet amusing to look back on the situations that gave me intense anxiety. One example is walking to the front of the class to turn in homework or a test and having to step over bookbags in the aisle. Another was the awards ceremonies where we walked dangerously close to the edge of the stage to receive the awards.

Fast forward to the first couple years of college–my condition was fast approaching that fuzzy line between “can still walk unassisted” and “needs a device.” My anxiety about walking only increased, and by this point, I actually was falling in public. I remember one time in particular at Target that I fell beside my car, and the group of adolescents passing by just stared. Luckily, a nice lady came up to ask if she could help in any way, and I feebly requested that she bring me a cart (aka a makeshift walker). I purchased my first rollator walker soon after this.

I started using a walker in 2013 and transitioned to a wheelchair in 2016. I never fall in public anymore (because it’s almost impossible to fall when sitting hehe), but since my disability is progressive and worsens with time, I do still fall at home.

How It Feels Physically & Emotionally

My falls are usually triggered by breaking my focus and losing my balance. I maintain strong muscles, but FA has diminished my coordination and motor skills. Any time that I am walking a bit (such as to use my bathroom), I strategize when and where to hold/grab bars and counters while watching my feet as I move. If I don’t break my focus, all ends well; if I do–perhaps because I look up in a briefly disorienting way or my leg twitches unexpectedly–I’m on the ground.

mwangi-gatheca-709376-unsplash

I almost never sustain (long term) injuries from my falls, both because I’m fit and because I’ve fallen so many times that I am somehow “good” at it. Falls do take an emotional toll. Immediately afterwards, as I sit on the ground, I feel helpless, angry, and small. Often, a few tears brim over my eyes, and I feel really sorry for myself…

Fast forward a couple minutes–I’m done sniffling, and I’m now crawling around to find something sturdy to hold on to as I pull myself up. Life may knock me down, but by the grace of God and years of consistent exercise, I keep getting back up.

Click here to see an article that was chosen for publication in North Carolina’s Emerging Writers about my FA journey. It does repeat some of this info, so apologies for that. You will get to see more pictures of me if nothing else! Thanks in advance to those who read it. I’m adding the link to my “About” page.

Thanks for reading! I’d love it if some of y’all shared your struggles and vulnerabilities in the comments. His strength is made perfect in weakness!

46 comments

  1. Dear Lily wow, how hard your life is but how strong because Of God in your life. Today I do feel sorry for myself but by reading your struggle helped me to accept my problem better and hang on God. Thank yo sweetie, Stay as I am sure you will, STRONG in the Lord and keep your body strong s well. Thank you for sharing this.

    Liked by 5 people

  2. I can occasionally get frustrated because I have not so good fine moter control, which makes writing by hand (particularly if I’m not doing cursive) rather painstaking especially at the end of the day. I struggled with it more when I was younger and thanks to handwriting therapy, it has gotten better. You really inspire me! I really love Isaiah 40. That must be really hard! May God bless you and strengthen you!

    Liked by 2 people

  3. Through your weakness you are reaching others with the hope in Jesus. 🙂
    My autoimmune issues are different, but I can relate somewhat. Pain walking, pain getting up, pain while sleeping, are not fun, but God gives me the grace to press on.

    Liked by 5 people

  4. This makes me cry for two reasons: first, for the frustration you sometimes feel, and second for how proud you make me. It isn’t easy being the Mom in this situation because I want to FIX it, and i can not. I would do literally ANYTHING to heal you, but I can not. This is where faith steps in.
    Letting you go be a 25 year old isn’t always easy. So bear with me, as we travel this journey. And know that I will always be here. You amaze and inspire me; I pray that through sharing your life stories, others may find inspiration as well.

    Liked by 5 people

  5. Hi Lily!

    I agree with you that it’s always good to share and read about our vulnerabilities. I recently thought about deleting a load of posts I wrote when I was in psychiatric hospital one time, but figured they might be useful to people who are interested in mental health or have experienced psychosis or other schizophrenic symptoms (if you’re interested, you can check them out here).

    I love the fact that you can share so openly, and I’m so pleased that despite your disability you are still able to blog. Your blog posts are always a joy to read, I look forward to them.

    God’s blessings over your life!

    Steven

    Liked by 5 people

    1. Thank you, Steven! I look forward your posts as well. And I’m glad you kept those posts. Sometimes it’s hard to embrace weakness because we fear the unknown–judgement, disgust, misunderstanding. I imagine it’s harder with a mental illness because of stigma. Thanks for standing up for a marginalized group in your own way. God bless you. ♥

      Liked by 2 people

      1. Thanks, Lily. It’s an interesting one for me writing a lot about philosophy and also having a diagnosed mental illness, because I fear the latter can be perceived as discrediting the former. This is where I have to remind myself that God is in control of the way I am perceived, and so far in my life He has protected me from too much abuse! On the human level, being open seems to help, too. Peace and blessings x

        Liked by 1 person

  6. You are so inspiring! For most of my life I feared God and ran from Him. I suffered from severe depression, anxiety and for a while anorexia. I always knew that God wanted me to write but I was too scared. Finally when I did, God’s love for broken humanity and me in particular flooded into my characters. I was shocked and gave my life to Jesus in the course of a few weeks. Now I wonder why it took me so long. Now I know when I’m feeling miserable it’s because I’m not depending on God’s strength. Thanks for reminding me. I really enjoy your posts.

    Liked by 3 people

    1. Your story from the perspective of a writer whose characters are influenced by Christian love for broken humans is so cool. It’s inspiring that you conquer those demons through the power of faith and trust in God. Thank you for your support, Adrienne. ♥

      Liked by 2 people

  7. “Life may knock me down, but by the grace of God and years of consistent exercise, I keep getting back up”. As long as the running tally is always an even number, you will be all right Lily!

    It’s not about where we have been. It is everything about where we are headed. Keep swimming towards the shore (Acts 27:44). Be Blessed!

    Liked by 3 people

  8. I love for people to be transparent. I think that is what drew me to your writing.

    I cannot imagine some of the difficulties you face, but you seem to approach them all with a positive attitude, faith and a joyful spirit. Thanks for inspiring your readers to do the same, no matter what their disabilities may be.

    Liked by 2 people

  9. LIly, thank you for including your readers in your life’s struggles. I hope soon to write a post titled The Secret Place. Those who suffer disabilities learn that they dwell where the Lord keeps His own nearest Him. It has been through adversities that we have experienced His love and care the most. The greater the difficulties the more Jerry and I are learning to praise and rejoice in Him. Jerry fell out of his wheelchair three times before he learned to lock his wheels.:) Blessings; He is always with you drawing you ever closer. You and others are in our prayers.

    Liked by 1 person

  10. I admire your perseverance and your testimony to the truth that when we are weak we are strong. Truly whether it’s a physical disability, spiritual or mental, we all have to come to the realization of our weakness in order to truly know the strength of our Lord. Thank you for sharing a beautiful testimony of the Lord’s strength in you.

    Liked by 1 person

  11. I was Born Disabled, But I say Christ-Messiah Jesus-Yeshua SAVED me More than Once!!

    I Will Pray for You Sweet Sister in Christ-Messiah Jesus-Yeshua!! “Pray Without Ceasing.” ( 1 Thessalonians 5:17 KJV )!!

    I wan Born with my Sternum Fused too my Back bone, my Birth Defect is called “Pectus Excavatum“. My Entire Rib cage was rebuilt and I have Stainless Steel wires that hold my rib cage together. I have a Bad Ruptured disk in my Neck at C5-C6, and a very bad Ruptured disk in my Lower back that is pressing on two sides of my spinal cord, with not enough room for the nerves too go through it, its located at L4-L5. Please Read More about My Disabilities ( https://kristiann1.com/2013/10/15/mydisa/ ) –HERE!!

    GOD BLESS ALL my Sisters and Brothers in Christ Jesus-Yeshua and my Messianic Jewish Sisters and Brothers in Christ-Messiah Jesus-Yeshua and Your Families and Friends!!

    I am Pro-Israel-Yisrael / Pro-Christian and Jewish People who STAND with the Holy Land of Israel-Yisrael and our Judeo-Christian Nation United States of America / Pro-Zionism / PRO-LIFE!!

    Please Pray for Israel-Yisrael / Christian Nation United States of America, and our Christian Earth Everyday “Pray Without Ceasing.” ( 1 Thessalonians 5:17 KJV )!!

    ( Psalms 33:12 KJV ) “Blessed is the Nation whose GOD is the LORD; and the People whom HE hath Chosen for HIS Own Inheritance.”!!

    Our ONE True GOD’S LOVE 💕💜 is ETERNAL THROUGH HIS SON Christ-MESSIAH Jesus-Yeshua for Today and Everyday Forevermore!!

    I Love you all Everyone through Christ-MESSIAH Jesus-Yeshua, because HE LOVED 💜💕 EVERYONE FIRST!!

    Love 💕 Always and Shalom ( Peace ), YSIC \o/

    Kristi Ann

    Liked by 1 person

  12. I, too, struggle with falling on a daily basis. It can be disheartening. to keep a positive attitude. It’s not about how many times you fall, it’s about how many times you get back up again!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s