I had to go for a yearly check-up to the hospital in Leiden, the LUMC . I didn’t expect much after my last visit last year.  http://joycekleine.nl/1123-2/

My condition is rare, at least rare enough to not do more tests to find some cure, or some less destructive medication on the long run. I am stuck with the one that is my saviour as well as my destroyer. So nothing has changed really, except my physical condition off course…. Which is just a minor detail. But on the way to the hospital I started to tear up, and I couldn’t understand why. I know what to expect from this visit, it is only to stay in their system. For times I really need them, and don’t have to go through all kinds of restrictive rules and regulations to get in touch, and for when there magically is someone who wants to invest in the few, with full back-up off course from the health insurers, to find a new cure and need test subjects like me.

Yeah sure, little miss Debit Entry….

Dream on…..

But when I told Ramon about me tearing up, he totally got Vulcan on me, and told me, with full logic off course, that it is only logical…

I am reliving last year’s visit, where they bluntly told me, that I will never get better. And it’s up to my body on my prolongation of life. And now I’m going back to that place, that didn’t do their sales marketing as well as I had hoped. Surely, that messes with your head.

Well…he had to perform a Vulcan mind meld ‘my mind to your mind, my thoughts to your thoughts’, to stay into Star Trek terms, because I didn’t want to give in to such a ‘lame excuse’ of wanting to cry.

I took a deep breath, and swallowed away my lump.

I think he did perform a mind meld, because after he told me that, I could answer the doctor with a straight face, that I understood she couldn’t do much for me, I didn’t expect her  to. As long as they keep me into their system and promise they won’t forget about me…. Just don’t forget about me….


Then I’m alright.

And then she gave me a card, telling me I can always contact them straight away, without going through all the discomforting channels…. And I was happy.

Just this tangible token of not being forgotten, and the ability to ask anything at any time, was a comfort to take home with me. So yet another good thing can be stuck on the fridge today.