Ramblings of A Prisoner of Flesh

Screen Shot 2017-12-11 at 4.18.51 PMChronic illness is the forced embodiment of an unsolicited reality

It is detecting the ever-changing direction of the wind,

Nimble focus to which way it screams the loudest

A constant game of tug-of-war

Paralyzed by pain- aching, burning, stabbing

Awake in constant slumber, a fog unyielding

Racing thoughts get lost on the way to the tongue

A prisoner of failing flesh

Always too much, too little

Never just enough…

Once aiming for superlatives, now grounded in indistinction

Unclenching hyper-vigilance and embracing helpless dependency

“Sustainable”, instead of “healthy”, as the label of betterment

Trading existing for thriving

Surviving for living

Understanding for tolerance, and then only sometimes

Living in everyone’s expectation that if they try; at access, at

niceness, then that trying, for us, should be enough

Slivers of doubt become trusted tools

Can I do this? Will they be there? What will be left of me?

Be prepared for anything.

Be prepared for anything…

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I Understand

I understand why you lied

Your story sent angry mobs after me

Death threats, mental institutions, hatred, and doubt

But I do not regret defending you

A missing patch hair is easier to grasp

than a broken soul and a crushed sense of self

Years of abuse and chaos had taken everything

And I get it, I truly do

I know right now you feel no guilt for your actions

Nor their repercussions

But if one day you do, just know:

While it still hurts and haunts me at night

Brelyn, I understand

The Reality of Chronic Illness: Prom Edition

Just realized I never shared this! Check out my amazing spoonie sister Em’s blog post about our experience attending Duke Children’s Hospital Prom…and all that went on ‘behind the scenes’ to prepare and recuperate… 🙂

Through the Peaks and Valleys

Last Saturday (April 22nd) Duke Children’s Hospital held their very first PROM! I had the amazing opportunity to not only attend but I got to attend with 3 fantastic ladies that I have gotten to know over the last year online! We share quite the list of medical diagnosis’ and life experiences.

Pre-Prom Prep!

Prom prep started about a week before the actual prom. Cancelling doctors appointments, scheduling doctors appointments, ER visits, lots of medicine, and rest rest rest!

Pre-prom prep (IV fluids, Nutrition, pain meds, steroids and prayer!)

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While we got ready for prom before getting our dresses on and doing our make-up we pre-medicated and talked about how much we get it. There was no need to explain anything or feel ashamed because they live it too! (Though I so wish none of us had to, it’s nice to not feel so alone).

We all meet online in…

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Philippians 4:13

“I can do all things through Christ who gives me strength.” -Philippians 4:13

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Philippians 4:13

This verse is commonly misused. It does not mean that because we believe, we can succeed in all of our endeavors. It is true that we can accomplish great things through Jesus, but that is not what Philippians 4:13 means. It means that, through Christ, we can be content in all things– through trials, pain, illness, long nights, family dysfunction, abuse, neglect– because we can take comfort and find our hope in the fact that He alone is enough. We are loved by a perfect Father who sees all our brokenness yet delights in calling us His own! Now, that’s a reason to smile… 🙂

 

Why Your Reaction To My Feeding Tube Makes Me Cringe

When someone sees or hears about my feeding tube for the first time, I tend to get a lot of questions like,

“What is that?”

“What happened?”

“Are you okay?”

The questioning doesn’t bother me; I don’t mind explaining.  I smile and reply that I have Dysautonomia and gastroparesis, at times even thanking the person for asking.

Sometimes I also get the question, “Are you recovering from an eating disorder?”

When I answer no, I get reactions such as:

“Phew!  I was afraid you were one of those girls trying to starve themselves!”

“Oh, so you actually have a problem. You have a real illness.”

I know they are probably well-meaning, but I cannot help but cringe a bit at their response.

I myself have never suffered from an eating disorder.  However, I have had my struggles with major depression, and let me assure you: mental illness is a big deal.  To constantly battle your own mind is something I wouldn’t wish on my worst enemy.  It’s isolating, painful, and absolutely exhausting.

I cannot even begin to imagine how hard it must be to respond to the questions I’ve gotten while actually having a mental illness like an eating disorder.  People have gone as far as apologizing for making an assumption about my tube, as if the very idea of having a mental illness should disgust me.  No wonder people are so afraid to seek help…

The mental illness stigma in our society needs to change.  An eating disorder isn’t simply a girl or boy who wants to look like a model.  Depression is so much more than being sad.  I have watched mental illness destroy the lives of dear friends and tear apart my own family, physically and emotionally.  It’s very real, very serious, and much more common than some like to think…

No, I do not and have never had an eating disorder.  My feeding tube was placed because of severe autonomic dysfunction and a paralyzed GI tract, and while my tube can drive me crazy at times, I am not one bit ashamed of the thing helping to keep me alive.  But those in treatment for mental illness should not be ashamed either.  As a matter of fact, they should be proud of the courage it took to seek out that help!  The only people who need to be ashamed are the ones who have the audacity to belittle someone else’s fight.