was born in 1969 in Munich – as you can see with disabilities (due to morbus crouzon syndrome), which lead to over 40 operations by the time I was 19.
ue to major deformity of the middle ears I was born deaf – a condition which could only be operated on after the majority of skull growth had happened, when I was about 5½ years old. Some measure of hearing was achieved, but even with bone conduction hearing aids (combined with spectacles, pressing on both sides of my head behind the ears) I was still quite hard of hearing. At the turn of 2014-2015 I got very modern hearing implants screwed to my skull, and at the time of writing I now have to train the auditive faculties of my brain to interpret the improved flood of raw "noise" information into speech and other sounds. For the first time in my life I have a real perspective of more-or-less normal participation in life.
edical treatments and extended periods in hospitals dominated the first 20 years of my life – so in these formative years I perforce lived a very isolated life. Many facets of life which most young people experience remained beyond my reach.
fter school I took a 3 year apprenticeship at a teaching academy for people with bodily disabilities in midwest Germany. Unfortunately the trade I learnt was promptly obsoleted by the upcoming computer technology, so I went on to earn a limited college qualification in pedagogics and psychology.
y love of art and graphic design remained part of my life, in the form of painting, drawing and pottery. The following gallery of drawings was my way of balancing energies with the friend who programmed this website:
espite my relentless efforts, and due to my remaining disabilities (and partly to the way I look) I was never able to get a job. So I had no recourse but to use my time as best I could – voluntary work for the ecological democratic party, active membership in Conscience and Peace Tax Germany, and several organisations promoting local trade based on alternative currencies: LETS Munich, TimeBank Munich e.V. and the ReeComm Munich Cooperative (Regional Economic Community).
…and what I made of them
ell I must have been born as tough as old boots, since I’m still hanging on in, trying my best to live a constructive life – in spite of everything!
he many years of effective isolation and limitations to what I could do quickly turned into a permanent invitation for torpid narrow-mindedness. To find the motivation to tease out the vibrant juices of life, to remain "in the flow" in such a situation is indeed not easy! No doubt many of you reading these words will be able to empathise with them from your own experience.
any people faced with such challenges tend to end up in a sort of exhausted torpor, their lives lacking meaning and perspective. They have literally built their external experience into their internalised picture of the world, and indeed into the very structures of body and psyche. This is what we call trauma, a sort of internal nightmare about some facet(s) of the outside world. The nasty problem here is that the more convinced we are telling this internal story to ourselves, the more we make sure that it is and remains so in the outside world.
raise be, with kind external support and a big dollop of inner grit I've managed to break out of that downward spiral, and learned to look on "my story" for what it in fact is: A story.
good friend told me that spiritual Tibetan women traditionally practice in a less visible manner, in solitary meditation, and in the space of awareness. I find that fascinating and wonderful – but not for me at the moment! I want to put the years of effective aloneness behind me, and embrace the world of meeting and doing.
he isolation mentioned above left me with a burning desire for sensual experience of all kinds. These I savor very consciously yet with abandon, and take great joy in them. I love to feel myself in this body, on this earth; and I love to feel free, to feel open space around me and the air and sun on my skin…
want to go for walks in the rain, to dance, to take full part in lively discussions, to discover myself as a sexual woman. And I want a job which gives my life a positive meaning, and so at long last earn my own money. I want to find a constructive position in the larger whole, and help move things on towards a better world — and most of all, I want to LIVE!
Hope to meet you there…
For those affected
he surgical techniques for dealing with Morbus Crouzon Syndrome have improved greatly since my childhood. In Germany, in the University Clinic of Würzburg, advanced treatments have been available in the department of paediatric neurosurgery for many years. Normally children are operated on at about 3 to 4 years of age. I have heard that most of the children treated there need only 2 to 4 operations and can then lead an almost perfectly normal life.