Share your Story: Anil van der Zee

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flying-copyName: Anil van der Zee

Missing Since: 2007

Location: Amsterdam

 

“Praised from the dark.

Being alone on stage, you really don’t see audience. The first 2 rows might be visible, however the rest is as obscured as the dark night.
Possibly their cries and sounds reach your ears on stage, but for sure, they are felt. Their presence from that dark void , their spirits merging collectively with yours, what an amazing feeling, a high relatable to no other. It would fill me with energy for days.

Being a ballet dancer can thus render you as some sort an expert in the language the body employs and in its expression and also how to interpret that expression..

I now experience a similar feel.
The last 7 months have been very hard. Even harder than before.
Illness strikes me from the smallest exertions.
I haven’t seen anyone for 7 months, nor spoken to a soul either by phone or Skype. No sound, no daylight, no videos, no music. Reading and writing is very hard, (the payback for composing this text will be sweet).

All of this will give me the famous Post Exertion Malaise for days or weeks.
invisible

Reading body language, particularly, and also undertaking any verbal communication, is impossible. Just having someone quickly in the kitchen and leaving without setting eyes on me, can give me a crash.

I can feel their presence even when they aren’t in sight. My cat gets up when someone comes in. And my body knows I need to expend energy that’s not there. So instead of absorbing energy from the audience like I used to on stage, interaction now drains me beyond repair, making me even more ill.
I haven’t even gotten to the part when I actually get out of my bed myself by standing upright for a few seconds. Keywords would be orthostatic intolerance > tachardia > hypoperfusion > post exertion malaise. So what’s the solution…..?!
It’s a very weird and strenuous existence. Hiding in the dark.

Missions impossible at times.

I’ve lost a number of things.
My biggest loss would be my boyfriend whom I was together with for 7 years. He himself had some mental health issues, then having to take care me, a boyfriend who suddenly became ill, was too heavy for him. He ended his life at 28 years of age, haplessly after which I lost the house that we had lived in. It was a temporary solution but I was not ready to have to throw our stuff away. It felt like I was throwing pieces of him away.

Obviously I lost my career, but as a dancer an injury is always a possibility so I tried to accept that as quickly as possible. I do miss the active version of myself such as dancing in the living room, or play-conducting music while lying down without getting any payback.
And yes it’s a cliché, but I of course have lost a lot of friends, or I don’t really hear from them. The illness is extremely time-consuming and to them, it’s often hard to understand. Aren’t you “just fatigued?”

There is definitely a certain uncoolness about talking about illness and showing that vulnerable private side online which ultimately causes you to “lose face.” What about…….? The shame.

On the flip side I gained and learned a lot as well.
Close friendships became closer.
I appreciate things that I used to take for granted. Such a cliché, I know……
And most importantly is that I learned that without my career and nice clothes and other “important” things I got to know another side of myself that I really respect and maybe even love more than the person I was before this illness.

Without all the status, I’m stronger. In hindsight at times, my old life felt like a distraction. I’m in survival mode. I don’t feel shame. My only objective is to get better.

4025It’s funny how some people say being a ballet dancer is one of the hardest jobs.

Yet for me it felt like peanuts compared to this now, full time job that’s called Myalgic Encephalomyelitis.

I was praised for being on stage by people who sat in the dark.

But being praised for my life in the dark is a much harder thing to achieve.

I’m lucky I have my friends who support me and 2 physicians that take my condition seriously. Yet most ME patients are not that lucky. Being made to feel ashamed by their friends and family and medical professionals for seemingly not wanting to get better. Keeping these patients ill with fairy tale treatments that either don’t work or substantially worsen their condition.
No financial support. Nothing. What’s their solution?

Let’s hope that with the right education, clinicians won’t have to ask what Myalgic Encephalomyelitis is. That it is not some idiopathic chronic fatigue.
Exhaustion is just one of the symptoms. Not THE symptom.
That Post Exertional Malaise doesn’t have to be explained, but what’s essential is that most of all these patients are being taken seriously. That for them to deal with this debilitating illness they should get the respect they deserve even when a cure is still far away.
Maybe this can be seen as a sort of being “praised in the dark”??
It would make this illness, undoubtedly, somewhat easier to deal with.”

2 Comments for : Share your Story: Anil van der Zee
    • Kandice Dickinson
    • August 10, 2016

    I hear you, Anil, and I see you, Anil, and in my heart (since my body will not allow it) I am on my feet, clapping for you – for all of us – and shouting “Bravo!”. Sending you, from my own forced Life in the Dark, the hope that you can continue hold on as we fight to be heard, and to receive – at the least – palliative care and – please-oh-please – curative options. – Kandice Dickinson, former opera singer, music professor, athlete, gardener, cook and artist turned (on 10 December 2000) severe ME patient / treatment “researcher” & guinea-pig / #MEAction, #MillionsMissing & OMF “activist”.

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