Published: 12/06/2018

To Shine Forth, Head Held High

by Matt Smith

Since being diagnosed back in 2013 with vascular Ehlers-Danlos syndrome, there has been a constant internal conflict of whether or not being diagnosed with a life-threatening, rare, genetic, incurable condition, is a good thing or a bad thing. The fear and anxiety caused by the knowledge that you have this condition that can take your life anytime it chooses is not comforting. Nor is the fact that there is little knowledge and little in the way of help anyway. So, would it not be better to live a life of ignorance and run the risk of suffering a premature death. Isn’t there a saying, “ignorance is bliss”?

Of course, I always convinced myself that having a diagnosis was indeed all for the best. Having the knowledge that there is a fragility in the foundations of your body would allow for proper monitoring of the vascular system, avoidance of activities that could trigger potential complications, and emergency procedures in place should the need arise. All of which would “hopefully” lead to a much longer lifespan, allowing oneself to survive to a ripe old age.

Recently though, as much as my mind likes to look on the positive side of the argument, the outside world has been swaying the argument towards, “I wish I never knew about this” thoughts.

Over the past year or so there have been a few lives lost due to complications of vascular-Ehlers Danlos syndrome. All of whom were under the age of 40. All of whom had a diagnosis. They knew about vEDS. So why has this happened? How could it happen? The diagnosis is in place, the emergency care is in place, so how is it that something like this can happen and continues to happen?

In the past few days, another shocking death has rocked the vascular Ehlers-Danlos Syndrome community.

It’s heartbreaking. To hear of another life lost to vascular Ehlers-Danlos syndrome when you share this affliction it is absolutely gut-wrenching. It’s like losing another family member, a friend. Somebody who understands the fears you face. One minute they are there, next they are gone, and you know, you fear, that it could be you next. It’s almost like you are standing in a queue at the meat counter, numbered ticket in hand, just waiting for your number to be called. And when that number is called, there’s not a thing you can do about it. Even though you have everything in place, all the monitoring, all the emergency measures. But in reality, it means nothing.

Then the floodgates opened, questions began whizzing around my head. Fear and anxiety creeping their way into my mind, and the one thing that we all need to keep us sane was starting to fade. Hope. Once hope is gone, do we not began to lose our sanity?

The darkness that I had seen before was building up inside, clouding my mind and taking away the light. I felt myself becoming more and more afraid than I ever had done before. The knowledge that I have vascular Ehlers-Danlos syndrome was too much of a cross to bear.

That was until last night. Something happened last night that changed all that. Something odd. Now, I’m not a religious man, but I’m also not closed off to otherworldly experiences. I believe in the universe, I believe that we are all connected and that anything is possible. And in my dream last night, there was a messenger. Who this messenger was I would not like to say. What I will say, is that it was like nothing I have felt before.

I’ve always had vivid dreams. There are times when my dreams have been epic adventures that seemed to last for hours or horrid nightmares that scared the hell of me, but in all my years of dreaming, I have never had an experience such as this.

In this dream, I remember walking across a grass field towards a fence. Beyond that fence stood a dark figure dressed in white. As I drew closer I saw it was “God”. I say “God” because the figure was visually represented to me by Morgan Freeman, who, after seeing Bruce Almighty, I always associate with “God”.

The sight of this being angered me greatly. I felt hatred. Looking at this figure before me, questions were bouncing around inside my skull. Why does vascular Ehlers-Danlos exist, how can you possibly allow this? Why, just, why? Where is the sense? I had so many questions that I wanted to demand answers to right there and then.

Now almost stomping towards the figure of Morgan Freeman, with his head slightly angled down, as if avoiding eye contact, he raised his hand to his waist and beckoned me to follow him as he turned away from me.

Climbing over the fence, I caught up with him, anger still raging but remained silent as we slowly walked down a gently sloping hill and into an ankle-deep lake. The only sounds were from the thoughts swirling around in my head and the oh so many questions.

In the middle of the lake, he stopped. Turned to face me and held out his hand in a gesture to take a seat. Facing each other we sat crossed legged.

As my mouth began to open, his eyes met mine. Everything I was about to unleash in a flurry of hurried, angry questions slipped away. No words left my mouth. As I gazed into his eyes, all of that anger began to slip away, all of that fear began to melt. The questions that I had only a few minutes ago, lost their weight.

He smiled slightly, raised his left arm, and gently touched me with outstretched fingertips. It was at that very moment that everything changed. I felt an overwhelming surge of love and peace course through my body. A great weight had been lifted and I was taken over by warmth and light in an instant. So much so that tears began to form and trickle down my cheek. I simply whispered “thank-you”.

Then I woke up.

The feeling remained. There was no fear. No anger. Just an overwhelming sense of love and peace within. The feeling that everything is going to be okay. Whether I live for 5, 10, 20, or 50 years, it doesn’t matter, that will not be the end.

Exactly what I make of this, I’m not entirely sure. As I said, I’m not a religious man, I don’t really believe in God as such, but I do know this was a message. Whether it be from another entity, or from somewhere deep within my own consciousness, it was a message to bring me back to the light.

We will never have the answers to all our questions. And while the monster that is vascular Ehlers-Danlos syndrome lurks within our bodies, day by day, we will continue the fight, keep moving forward, and live our lives to the best of our abilities. We will shine forth with our heads held high.

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