I’ve been trying to write this blog for a few days now. Thoughts were jotted down then frustratingly crossed out. The last week of October is EB Awareness week. Seven days where factual posts and personal stories are trending with the attached hashtags. In the past years I have posted blogs(such as I’m Only Human) and videos, I’ve shared medical facts/ statistics along with my personal story.

However, this year I am at a loss as what to write about. The feeling of repetition is screwing with my thoughts. In a sense, I feel as though I am obligated to represent, obligated to post and share. This obligation is somewhat stressful these days, it has taken over who I am. This weight is suffocating…

Yes, I have EB, but it is a low level of intensity and only one part of my life. EB isn’t the defining definition of what my life is or who I am. EB doesn’t own me, yet this life of living as a walking billboard has sucked up any existing inspiration.

Being that billboard is a heavy weight to carry, that obligation extends out to not wanting to let others down by not posting awareness themed posts like the Mad Hatter. See, I don’t want to let anyone down, but if I were to post just to post then that uninspired disconnect would glow vividly within my words. This equation is crushing my internal world.

I’m so sorry that the content of this blog isn’t what you expected or want.

“I’m tired of tending to this fire, I’ve used up all I’ve collected, I have singed my hands…” -Twenty One Pilots

Published in featured, health & fitness, memoirs
1 Comment
  1. Dianna Crowley 4 months ago

    That’s ok. Sometimes we need a break. Others usually pick up the slack. I have posted every day of every EB awareness campaign since the beginning of Facebook. My granddaughter is 13 and has RDEB. This year I posted once, a short article with a link, and I had just as big a response as ever, with more people saying this was their first time to hear of EB. I know you’re busy, and there may be times you’d like to focus on something else. You may get more exposure for EB from this post as any other. Hope you’re doing well!

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