My Fears After Losing Fellow Warriors to Vascular Ehlers-Danlos Syndrome


I am tired.

Tired of trying to be strong.
As I swallow I feel a lump deep down
inside of my throat.

A teardrop trickles down my cheek and
lays to rest upon my lips.

I can taste its saltiness.

My heart is breaking.

Emotionally exhausted.

I am afraid.

It’s been a while since I have written anything worthy of sending out into the world about vascular Ehlers-Danlos syndrome. In fact, my mind has been elsewhere. The demon that lays in wait has been pushed to the back of my mind for quite some time, dormant.

 

Of course it is still there, festering in the deepest, darkest corners of my neuro-network, waiting to raise its ugly head again, either physically or mentally. So far I have managed to keep it at bay, my thoughts preoccupied. I’ve been getting on with my life, making plans, continuing as normal like it’s not there. When it has arisen at various times, I’ve beaten it down, pushed it back. But this war isn’t over.

Interesting that. War. Not really the word one uses to describe a chronic illness. But this is War. This is a War that rages throughout a lifetime. An internal War with the ultimate enemy, your very own genetic makeup. Sometimes the battlefield may quiet, but it will never be silenced, for there are no negotiations, but an endless fight for survival. And now it’s
back.

I find myself compelled to write once again. Physically I am strong, but mentally I can see the cracks. That wretched beast its breaking out and the battle continues.

It’s hard to explain the way I feel right now. I’m sitting in a corner with my head in my hands. My heart weighs heavy, it’s dark, it’s cold and I am afraid.

Since being diagnosed with vascular Ehlers-Danlos syndrome, I have been honored and blessed with meeting many courageous people who, despite all odds, fight against this horrendous life-threatening illness each and every day of their lives. But they don’t just fight it, they do it with style; they have the biggest hearts and the widest smiles I have ever come to know. But I also see the dark.

Since being diagnosed with vascular Ehlers-Danlos syndrome, I have come to know death. I have been witness to its power all too often. This year alone many lives have been lost. With each passing my heart has been sinking. Fear building. Many of these people I have come to know. They have inspired me, they have found a place in my heart. Then they have been taken away.

Sometimes it all becomes overwhelming. When people around you are senselessly losing their battles, it all becomes too much. It takes strength to stay strong, but with each passing that strength is being sapped from my body.

Right now, I just want someone to come along and tell me it’s over. Wake me up from this nightmare, take me by the hand and tell me it’s going to be OK. “We found your cure!”

But I know that’s not going to happen.

And I am Tired
Tired of trying to be strong.

As I swallow I feel a lump deep down
inside of my throat.

A teardrop trickles down my cheek and
lays to rest upon my lips.

I can taste its saltiness

My heart is breaking.

Emotionally exhausted.

I am afraid.

But it’s OK to be afraid, it’s OK for a tear to fall. Having a diagnosis of vascular Ehlers-Danlos syndrome is a great burden to bear. It is scary, the threat is real and I am but human.

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Thinkstock photo via KatarzynaBialasiewicz.


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