We share the same birthday, October 8th. You passed away one day after my purple guide Prince would have turned 58. I don’t think further comparisons of numbers and ages will help me. Diving into them is just an intuitive impulse to make sense of the incomprehensible. Scarier because more confronting, but also more effective is writing: figuring out what is hidden behind the symbols of the written word, catching the flowing streams of grief and hope and temporarily attaching some dialogical truth to them. Publishing an English letter on my blog (that’s a first, lady!) seems to be the only proper way to say goodbye to a glorious human being who showed me what inner strength is about.
I’m European, you’re American. We met in a Chinese hospital four years ago, less than a year before my father died from ALS, the same disease that defeated your body, but never your soul. Memories of this Chinese hospital, where the family members of patients from all over the world gathered in the same kitchen, feel like memories of some kind of alternative reality where we tried to fight the inevitable. There are many ways of fighting: my father chose to ignore his fate for a long time, didn’t want to discuss it and was surely not facing it when he met you. That attitude left space to watch movies, talk about books and international politics. I cannot imagine how many topics you discussed during the weekly dinners in that one very nice Chinese restaurant in the city center, but there must have been plenty. Whereas my father chose not to talk about his illness and approaching death, you were at the same time accepting and fighting it. I know no other human who balanced on this thin line so gracefully as you did. Your body might have failed you, your mind was the master.
After I heard of your passing, I went to your Facebookpage. I strolled through the inspirational and empowering quotes you posted and smiled. Most of our private conversations were about pushing yourself to evolve. When I told you about the condition my father was in a few months before he died, you didn’t react to the dramatic facts I told you. You just replied: ‘We have to get him to fight and to be more positive.’ However short these conversations were, we felt the ‘we’ and preferred that pronoun. When we met in China, I got off the plane in a total bliss. I had fallen madly in love one week earlier, still cherishing very romantic ideas about love, totally convinced he would be the one that would help to take the unmeasurable pain away and that I would be able to empower him in pursuing his goals in life. When I told you which serious issues caused the two of us to break up only four months later, you seemed even more disappointed than I was. A few months later down the road you asked me if the ex ‘had seen the light’. I said he hadn’t and that I didn’t expect him to do so soon. ‘He’s a dumb shit’, you replied. I immediately acted from a loving reflex and spoke in his defence. But a few sentences later you made clear what you actually meant to say. Behind the cursing was your core message: ‘Everyone can change. Let’s hope he can cure himself.’
And that’s exactly what your death is once more making me realize. The past can help us understand but it’s never an excuse. Whatever hardships you’re facing and however gloomy your future might seem, you showed – rather than told me - how to fully live the now. Like a meditating monk surviving without food in a cave, you continued to emit messages of love and courage from a wheelchair, breathing though a tube piercing your skin. This message has only become stronger now you have died.
Still I have to admit that I am also mourning a sparkle of hope that died with you on June 8th. Of all the ALS-patients that I personally know, in my mind you were the one with the best chance to survive for a mighty long time. Because just like Stephen Hawking, you were talking to the universe, to time and space, to all that encompasses us and our mortality. You were in a constant dialogue with the possibilities of your own mind and imagination and seemed to get endless power and a will to live from that. You were open to all kinds of alternative therapies. I’m pretty sure that you lived some extra years because you approached ALS with such an open mind and loving heart.
I also met your wonderful husband in China, Djordje. As far as I can remember, you both worked in Hollywood, you were a film editor and loved literature and good stories. The two of you sure seemed to form a symbiosis on many levels. Being in China with my sister, I felt sorry for not having met your children. Our dinners together felt like the intimate dinners of families who share a lifetime together. In a way, we did, we even shared two of them and more generations beyond them.
A few months after my father died, I was tired of being me, not even able to enter the mourning zone that seemed to offer only excruciating pain. That reluctance coincided with the challenge I got to start a virtual alter ego for an art contest. Before I won that strange contest and subsequently lost almost all vision, was diagnosed with a burn-out and started confronting the black beast of mourning that had been lurking at me for months, I made you a direct witness of some of the adventures my alter ego Andreas had: seducing women on dating sites, adding hundreds of unknown Facebookfriends, but also making fun of the sexist literary world in subtle, wicked ways. You were excited and kept on sending me messages: ‘Marie, this is fabulous, great, exciting, necessary, hilarious, awesome, fantastic.’
In this spring of 2013, our virtual contact was the most intense. But even then, conversations were short, I didn’t ask you about your physical state or how you managed to type, but I didn’t expect in-depth conversations either. They weren’t necessary. From the moment I met you, I felt your depth and you felt me. I will remember you as a creative, funny and intelligent woman, as a soul who was spiritual and open-minded but equally down-to-earth and in a constant quest to broaden and deepen knowledge.
The last time we spoke is already a year ago. I had just taken my second reiki course and was totally amazed by the results. Open to everything, you immediately said ‘sure’ when I offered you to give reiki from a distance. A few minutes later I asked you if your neck tilted to the right. You told me this was indeed the case and that your paralysed neck was giving you lots of pain that week. Still, you didn’t complain, you just thanked me. Our last words were symbols of love.
You are an example, taliswoman. You really are. ‘You brought such a joyful energy to the time you were in Zhongfang, and I’m sure, all the times you were with him. I saw how he enjoyed your stories and your passionate energy. You should feel good that you gave him that joy.’ This is what you wrote to me after my father died. Let’s replace the ‘you’ by ‘we’. Because all the things you thanked me for, are what I feel grateful about after knowing you. You’re setting the example in a humbling, but empowering manner.
I hope your family knows they are in my thoughts and heart. Both Djordje and your children are always welcome to visit my first or second home, Belgium or Amsterdam. And you, Betsy, feel welcome to visit me in my dreams. Don’t be scared when you feel stubbles when giving me nocturnal kisses. For you never know who you’re visiting. There’s just one soul, but it has many faces and one belongs to Andreas. He’s telling me you’re one of the most fabulous, great, exciting, necessary, hilarious, awesome, fantastic ladies he has ever met. We agree.