Disability and dependence in a world that loves the opposite

Disability and dependence in a world that loves the opposite

In a culture that prides itself on productivity and independence, what does it look like when you’re stripped of those things?

I typed this question out and looked at it for a really long time. I wanted to answer this, but I didn’t know how to approach it in a way that will move me forward in healing while promoting introspection for those on the other side of the screen. 

At the end of the day, the only way to do that is with honesty. 

I battle myself with how much to share and what to keep to myself. There is a distinction between vulnerability and oversharing; vulnerability is received in community and shared amongst people who have earned the right to know your heart, oversharing is… well, information dumps on the internet to whoever will pay attention. Blogs feel a lot like oversharing to me most of the time. I think that’s why I’m hesitant to share the nitty gritty of my process in healing from Lyme. As something that has profoundly changed me, and continues to, in ways so large I don’t even know they’re happening, I have a prideful ownership of my story. 

Secrecy has become a form of self-preservation and isolation a deep comfort. 

A friend graciously reminded me that we were designed to be in community (as in not living in secrecy and isolation. Which means I’ve been doing it wrong. Nothing new here!) 

So what does actually happen when you’re unable to be active in true communities? 

(Hint: the answer is easy)

It’s a mess. The answer is a mess happens. 

Haha you thought I was going to have a cool, smooth, intelligent answer. Those aren’t common here, you may want to find a different blog to read. 

We know we’re supposed to be in community as that breeds joy and fulfillment. But sometimes disability gets in the way. 

I’ve lost friends,

I’ve been hurt by the ones I thought would show up for me, 

I’ve been doubted and disbelieved

Those are passive statements, those things happened to me. I didn’t deserve them and I cannot change them. 

Instead, I can look at the other half of the equation and I can take (some) responsibility. By no means am I undermining the extent of my illness and the disability that has come with it. I was mentally and physically unable to do most things. But I’ve also started healing, and in these times it is important that I recognize my role in the loss of community I’ve experienced. 

I’ve burned bridges by turning away, 

I’ve been scared to try again, 

I’ve hid the whole truth from those with listening ears, 

I’ve made easy choices instead of right choices. 

And I’ve done all of those things in the name of control. And because my life has been a shambly mess of all the hard things, I needed a few things to be easy. So I made choices to reflect that. Never knowing when a seizure is coming, when a mental crash is on its way, when the nausea will be too much, etc etc etc puts you on the fast track to embrace the ‘just go with it’ attitude.

Unfortunately for me, community is not rebuilt, joy is not fueled, and fulfillment is not familiar within choices that breed control, ease, and predictability. Dang.

Let’s jump back to the first question: In a culture that prides itself on productivity and independence, what does it look like when you’re stripped of those things? 

In short, it looks like a chance to reject the isolation that hyper-focused productivity and independence bring. Mark E. Moore says, “We’ll never know our true selves in isolation. We know ourselves to the extent that we are known… our character is forged on the anvil of our community.” 

Disability did the grunt work for me, it stripped me of productivity and independence. 

Now I get to surrender control (because none of us really have it any way!) and make the courageous choice to simply be with the people around me.

My hope is that through this, I can change those statements: 

  • from “I’ve burned bridges by turning away” to “I’ve built bridges by running towards others”
  • from “I’ve been scared to try again” to “I’ve cultivated support to overcome fear”
  • from “I’ve hid the whole truth from those with listening ears” to “I’ve shared the ugly and sad parts of my healing with those who care”
  • from “I’ve made easy choices instead of right choices” to “I’ve allowed trusted people to fully see me” 

Remembering that I’m in a body with disability I can’t control, I’m simply along for the ride and will continue to embrace the ’just go with it’ attitude. But there are things I can do to make that ride better, like working towards returning to God-given communities. And knowing that I’m still allowed to ask, “Wait, who’s in charge here??” when it gets hard. 

I wrote this on September 4th, but as I continue to heal and come into my ‘new normal’ I kept returning to these thoughts, so I figured it was time to share. Let me know what you think in the comments and subscribe to get my updates sent to your inbox!

This Post Has 21 Comments

  1. Wow that was powerful. Ever consider being a motivational speaker or writer? That was very deep. I like how you are able to see the positive outcome of what many people would dwell on the negative. When I look back on my life, things that bring me comfort often were hard lessons at the time. Like I said in my earlier letter today… I have every confidence in you. Try not to be too hard on yourself. You should enjoy this time you have because this may be the last time for many years you are not productive!-Keith

    1. Thank you for your kind words! You are very right, I am trying to rest and enjoy my lack of structure!

  2. This is so good. YOU’RE SO SMART

  3. Totally love this. Stay strong! Am also trying to avoid burning bridges.

    1. You too! You got this

  4. Dark and difficult times lie ahead, soon we must must all face the choice between what is is right, and what is easy. But remember this, you have friends here, you are not alone.

    Help will always be given, to those that deserve it

    1. Thank you so much 🙂 We are never truly alone!

  5. Hi Christina I am from South Africa and my mother tongue is not English so please excuse any language mistakes. I received your blog this morning and thought about you all day, it is now 21:22 with us and nearly mid summer.
    For one you are a fantastic writer, you just have that special way with words. Are you all alone in Nashville or do you have company? I din’t think it is good for you to be all alone but then what do i know. Although I am very far away – RSA _ please shout if there is anything I can do to make life more bearable for you and I do keep you in my prayers.

    1. Hi Andre! Thanks for reading all the way from South Africa! Yes, I have amazing support in Nashville, it really does make all the difference.

  6. This kind of vulnerability is definitely not oversharing! People need to understand what you and others in similar situations are going through. Your narrative gives people a peek into life circumstances that are not understandable or relatable from outside your narrative. Keep sharing. You do it very well. And know there’s a community surrounding you with love and support from afar.

    1. Thank you <3

  7. This is really touching me. There is a disability that I have that nobody can see. So your words give me a little bit of strengh back. I should and will try to keep this words in my heart. Maybe I can rebuild the one or the other bridge too. Thank you so freaking much.

    1. Thank you for reading and commenting Chris. We are all in this together!!

  8. You will find your new community, and will help build bridges for others seeking the same. It IS rough. I also have an “invisible” illness: I look fine on the outside, and AM fine most of the time. Until I’m not. Until, for whatever reason, my cells turn on me and nearly kill me. It makes it difficult to make plans, for sure, and doesn’t lessen the guilt when I have to back out of something at the last minute. Fortunately, I have managed to get my situation under control with diet and a few life-style changes. Mostly. Those among my family and friends who have witnessed a degranulation event in progress absolutely get it, and believe me. I hate the stress it inflicts on them, though.

    You are not over-sharing in this venue. Not at all. It is YOUR blog, and you are beautifully articulating your personal experience with a confounding condition. This isn’t drama, it is reality. I am truly sorry you have been so impacted by this illness, but believe you can be a shining light in the dark for those starting this journey.

    1. Thank you Kathy 🙂 I think of you often as one of my great examples of a strong and resilient fighter.

  9. Hi Christina,
    It is an amazing publish, you are so strong and hardworking and you must be proud of yourself. Sometimes a bad situation helps us to realize who are the important people in our life.
    You deserve all the best and I’m sure you will overcome every issue.
    Enjoy the Christmas time and keep blogging like that.
    ¡Un abrazo! 🙂

    1. Thank you Senin!!

  10. Well, you’ve met new people! Here we are.
    I’m an atheist though, I hope this won’t burn a bridge, certainly won’t on my side.
    Agnostic, technically, for strict logic conformity.
    I’m also a socialist, so I don’t evaluate people just for the money they can produce to their capitalist masters.
    I guess some people would have me burned at the stake.
    You are a person and your thoughts, hopes, dreams and woes matter in your social context; doesn’t matter if your body is convalescing and you can’t fulfill market’s demands. This post, for example, is of invaluable cultural importance.
    Is it possible to make a full-recovery from Lyme’s?

    1. Welcome to the blog!! We are very hopeful I’ll reach remission 🙂

      1. Thanks! But I’ve been here since post 1!
        Though I guess I had already asked about the remission. I’m hopeful you’ll reach it as well.

  11. It’s never easy adjusting to a new normal, and it’s especially hard when you think you have control, you have everything all planned out and you just know that your life is all set then God says nope flag on the play that’s not going to happen. I’ve been there , I worked in a nice office drove a nice car had a nice apartment, and I had deals in the works that were supposed to make me nice amounts of money then I got sick and all the nice stuff went away. Then came the new normal, Labs, tests, Dr.s, surgical procedures and over time you learn to adapt and adjust and if you’re truly blessed you begin to realize that you never had any control in the first place everything was always in Gods hands and if you’re faithful enough to leave it there you’ll be ok.

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