Well, here I sit… a little numb, wearing my brand new Flag Nor Fail shirt, that arrived yesterday after we got home from the LUMC. It couldn’t have arrived at a better moment.


love life


Love Life.

I so much wanted this shirt. Because I do, I love life. And now it holds more meaning to me than ever.

We were so full of hope. That was the biggest reason I was so nervous. Not only about me being as clear and articulate as can be, but my hope blossomed for a moment. Could there be an ever so slight possibility, I could be better, feel better…. Think about a real future instead of, only as far as tomorrow.




Except, none of that hope, was answered. It was just like every lottery ticket we ever bought. The moment you buy the ticket, you get carried away with the happy hopeful feeling, this is going to be the one that will make all your hopes and dreams come true. Only to be shattered, and maybe win half of the spend money back, as a kiss-off.

I will never get better. This will never cure. There will also be no trials for my decease, simply because it is too rare, thus not profitable. The one I had set my hopes for, the one for Cluster headache, is not compatible with my headache. So I can’t participate in that trail as well.

The medication I take, will eventually run dry. It isn’t manufactured anymore here in the Netherlands, and it has to be ordered from Austria. But even now as we speak, Austria makes it harder and harder to deliver. The medicine is simply not profitable enough.

I will, however keep in touch with the LUMC. That was another major issue I wanted to discuss. And I succeeded.

When we left the LUMC, I was disappointed but satisfied. I did good, and I did get 1 out of three of my list done. Sad thing is, that I rather had one of the other two. And to hear I will never get better, with the logical conclusion, that eventually my body will fail due to the adverse effects of the meds, was a little killer smack in the face.

Ramon was so quiet in the car as we drove home, it made me nervous. And his eyes….

That’s what made me want to cry. When I asked what was wrong, he first didn’t want to say.

When I asked him if he was angry, disappointed, or sad, he finally answered.

‘ I’m so sick and tired of it all. I can’t take it anymore. What’s the use of trying so hard? Why should I want to save for my pension. I will never get to enjoy it with you. I’ll be alone, in a crappy apartment, no parents left to go celebrate their 85th birthday, no children to remind me of you and me. And our future? Ha! If someone is sitting up there on a cloud, a “God”, then what did we ever do to deserve this, and why does everything has to be a struggle? I’m fed up with the everlasting ‘you have to see the positive side of it all.’ Which positive side??? ‘

I’m certain I haven’t quoted him to the letter, but this is what stayed with me. And it made me so sad. I tried so hard to find comforting words, but nothing came up. I hated myself for it. All I could do was try to keep my tears down, and softly squeeze his arm. The lump in my throat re-appeared in full splendor. I felt so responsible for the way he felt, and it took all my effort not to get lost in the guilt.

I looked at his eyes again. They still looked the same.

I couldn’t hold my tears anymore. ‘ I’m sorry, I feel so responsible. I don’t know what I can do to make it all better. I love you so much.’

There it was…. A little smile, and his eyes turned softer for a moment. ‘How could this ever be your fault? It is just too much to take in, everything that is going on right now. And I always kept hoping, one day, one day…. Now that hope is brutally taken away.

For me, nothing has changed really. I learned early in my illness, hope doesn’t work for me, it immobilizes me. It makes me want the things I will probably never get, and makes me stop looking at what I have right now. I never lost hope, I just parked it in the basement. And sometimes, not too often thank God, I want to go out for a ride, and bring it to the surface. But eventually it is only there for a good polish, and then I store it back in the basement. I just doesn’t do me any good, but it’s nice to know, it is where it is.

I love life.




I love my life. I love what we have accomplished by hard f***ing work. And I will keep working hard as f***, to make every day I have, something I am proud of. The tears I cry today is because I feel sad, and angry, and disappointed. But tomorrow I will smile again, because I choose to be happy. Life sucks on more than one occasion, but I still love it.