Scarlet Letter “P”

Just five months into living with a central line and already Saylor @thatkidwiththeunkepthair deftly illustrates what life on the line is like for her. Thank you for your willingness to share! We are wishing you continued healing and well-being.

#getthepiccture 


I live with a Port due to my POTS (postural orthostatic Tachycardia Syndrome) and needing IV fluid infusions multiple times a week. I’ve had it since February 1st, 2018, and have been receiving my IV infusions since October of 2017. 
I have a love-hate relationship with my line. It allows me to receive treatment and allows me to feel my best, but at the same time, it reminds me that I’m not normal. It reminds me that I’m living with an incurable, progressive genetic disorder and all of its friends. It reminds me that I’m different. 
 
I wish people knew, and understood, what I go through on a daily basis. I wish people understood that I don’t want this; that I would change this if I could.
  
I wish there was more understanding for those who live with Central lines. Until there is, I’ll make my own advocacy, and rock at it! 

I have received such a wonderful influx of the submissions that I am sharing them double time on Instagram. Please head on over and let me know what you think of the movement so far by leaving me a comment! @brianabeaver1

Acceptance: What Wouldn’t You Do?

By the age of seven, I had my spiel committed to memory like a seasoned politician. At the beginning of each school year, I would politely educate my pupils about the nature of my disability. I was cognizant to provide only pertinent information, not an excess of fear- inducing data. Even at this age, with my sun-drenched hair sprouting from the top of my head, I knew what I was saying was significant. Significant not only in universal context of the topic, but also in the weight it bore on my personal well-being. Would my classmates accept me?

Though concealed was my motive to detour any teasing and tears, the macro level threads of awareness I was sewing entered my mind. It had already become intimidatingly apparent to me that whatever alternative views–beliefs that did not criminalize me for having a disability–I wished others cultivated, were going to have to be planted by me.

“Even though I walk and talk differently than you do, I am the same as you are.” I can still recall the words I imparted to my peers, teachers, and adults revolving around my world. “I am not contagious, it is safe for you to be my friend.”

 

In myriad contexts, with varying diction, I am still tossing out these reassurances like shimmering copper into a wishing well. I am asking others to erase the dangerous indoctrinations of their youth about others with disabilities, and to embrace diversity, recognize shared humanity, and reach out with respect.

Why should you care?

Inevitably, you or somebody you love will develop a disability. This is a statistical fact. With equal rights and access declining daily, the best thing we can do is learn to support one another. Conversations about navigating interactions with intention and undiscriminating respect are more imperative than ever.