Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

\”All That We Behold is Full of Blessings\” ~Wordsworth

Written by Katie. Posted in Editorials, Ehlers-Danlos Awareness, Thankful

I think we all have things we wish we could change in our lives. Maybe it’s changes about our body, or our relationships, or our jobs.

But sometimes, wake up calls come along that make us think about the changes we wish for, and that maybe we don’t have it that bad.

Maybe we actually have it quite good.

This kind of wake up call happened to me last night. Katy Rose had just gotten picked up. I went to get on my computer to check my email and my Facebook. I checked one of the EDS groups I belong to, and immediately felt sick. There, on the website was the news that one of the girls who posted frequently on the board, had passed away from EDS complications. She was only 22.

By the way, she did not look sick.

I often looked forward to this girl’s posts. She was sick, but she had this way of always being positive, always being helpful to others, and always making light of heavy situations. She was a bright light in a place that often focused on the darkness of the disease.

I never responded to any of her posts. Now I wish I had.

This girl, who happened to have EDS, POTS, and quite a few other health problems had been in the hospital. She posted on Wednesday that she was hoping to get out of the hospital on Friday. She died Thursday night.

I still have chills. I still can’t stop thinking about it. About her, about her family and friends, and about how these diseases are killing people, and most people have never even heard of them.

It makes me think to myself, “Really, Katie? You were really complaining about getting out of bed today to go to work because you were tired? At least you can go to work. At least you are functioning.”

As I continued to think about this young girl who lost her life two days ago, it brought me back to when my sister, Allie was 20, very sick and in the ICU. There were a few times when the doctors were not sure if she would make it. As I sat in deep thought, I found myself crying tears of sorrow for this girl who had EDS who did not make it, and crying tears of gratitude that my sister was able to leave the hospital to tell about her experience.

Someday I will tell the story about when Allie got sick, but for now it’s still too personal. It’s a chapter that I struggle to tell.

When I look at Allie, my Aunt, my Brother-In-Law, and myself to name a few, I think yes, we have chronic invisible diseases but we are the lucky ones. Our lives may not be perfect, but we are here. We are here living our lives.

As I type, I still have a lump in my throat. And a fire inside of me to work harder to spread invisible illness awareness. I feel like I have to do something. I have to do more.

I also feel an urgency to say, “Count your blessings everyday; even the imperfections you do have in your lives. Because you just never know.” As my Aunt said earlier this week, “Illness does not discriminate.”

It also makes me want to scream from the rafters, “Have you told someone today that you love them?”

RIP, fellow zebra. Thank you for making a difference in my life.

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Comments (1)

  • Uncle Steve

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    This is what we are all to learn…well done my Niece…this is all about growing…and learning…you are doing both!

    Reply

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