Happiness - the power to Go On

by Carolin Hübner (Spain)

I was born and spent my childhood in Frankfurt but I have a more vivid memory of the years we lived in Berlin which is where I spent my teenage years. From the age of 16 I knew I wanted to work with languages and after my graduation, having decided that English and French weren’t enough, I set out to learn another language - Spanish. That is how I came to Barcelona.

When I arrived I didn’t know much more than “olé” and “adios”. The idea was to stay for two years and then move on, at least for some time, to Mexico. But I learnt the language, got a job and met someone with whom I lived for seven years. I also discovered that for me sharing a few m² is probably the surest way to suffocate love. Even though I felt sad I stayed in Barcelona, graduated from the translation university school, and to date have spent more years living in Spain than in Germany. Throughout my career I have enjoyed translating subtitles for a cinema festival as well as technical documentation. Later I managed a small import business, combining the languages with commercial knowledge.

So much for my brain…. To “feed” my soul I started reading and experimenting with BATIK, a printing technique for cloth, originally from Indonesia where instead of painting the colour directly on to the cloth, it is painted with wax using a brush. The wax wraps around the threads of yarn, which is later dyed in a bath. This is called the wax “reserved” part of the cloth. However, in simple terms, where there is wax, the colour cannot reach the yarn.

The following steps are: dying and drying and this process of wax painting-dying-drying can be repeated several times. It’s a technique for patient people as you cannot speed up the overall process. The wax would melt if exposed to heat from the sun or an electric fire.

Many factors influence the final result, including the wax type itself, the material (I personally only work with silk), the time in the dying wash to name but a few.

The more often a cloth is dyed, the more the wax breaks and a little bit of the colour seeps through the cracks giving rise to “veins” which give the Batik technique its uniquely characteristic style.

Approximately three years later I found a balance for my heart when I fell in love again and with that man I had one of the most beautiful and deepest experiences in my life. I became a mum of a five-year-old boy. I who had wanted to travel to so many places throughout the whole world, learning about other people, other cultures, other ways of living and understanding things, and I entered now a completely different world by focusing my attention on what was happening behind those big brown eyes. I adopted him from the adult point of view with regard to responsibility, but when it came to feelings, slowly, step by step we adopted each other and although we have no legal relationship, there’s no doubt ‘he is my son’ and I felt enormously proud when I received for the first time a gift for Mother’s Day. I don’t need any document to remind me of the responsibility I decided to take on. Also, I found it more important to give my love to somebody who was already in this world than worry about whether or not he was genetically ‘mine’. Nobody is a property and I just opened my heart. Although I wouldn’t want to miss a single feeling that crossed my heart, to be honest I thought I would be able travel and share some experiences with my better half, at least when the boy was a little older. But what could I do if life seemed to have different plans for me?

Bringing up a child is more than hugging. Love means education and discipline too. The latter in particular wasn’t an easy thing to do together with his father since his character is more the kind of person who hates rules and gets quickly bored because for him repeating is synonymous with monotony.

Sometime in the middle of the 90's  I started feeling that it wasn’t me who managed my life but it was life that was pushing me forward. I felt completely overwhelmed by everything that occurred, always running and never arriving and then the little finger on my left hand started twitching, and also whole sequences of letters turned up when pressing a PC key or I was very nervous, even shivering sometimes. I thought it was the result of the discussions with our son or his father because I wanted to do a “good job”, perhaps trying too hard...

I lived through a serious depression and received psychological counselling for two years. Talking helped me a lot but the shivering simply didn’t stop. So off I went to a neurologist (1999) who did lots of tests and brain scans (all this just because I was a bit too nervous?) Innocent girl!! A few weeks later I received the diagnosis: Parkinson ’s disease (PD); a neurodegenerative, chronic, progressive and, by now, incurable desease. It was such a slap in the face.

Learning to live and manage Parkinson's is hard work. I, who refused even an aspirin if it wasn’t really necessary, had to accept that I needed now 14 pills each day. Also I found out that the disease is much more than tremor or rigidity and that it certainly isn’t something that occurs only in old people. You have to muster up all your concentration for every step if you don’t want to fall down and your vocabulary will include now constipation, fatigue, dizziness, pain and anxiety.

We must fight against apathy or depression and although I can be on my own and need quality time just with ‘me’, there ought to be a social life too.

OK, we cannot stand huge crowds, stroboscopic lights and experience fatigue much more than “normal people”. So the first row in a Rolling Stones Concert wouldn’t be the best place for me to be. However, I cannot blame it on Parkinson's because you would not have found me there 20 years ago either. What really changed is that when going out I take a taxi and I go to smaller places. After spending a wonderful evening (being with the one you love or good friends) there is no need to be out until dawn. The emphasis is on quality rather than on quantity.

OK, you have to struggle with balance problems, which mean no more high heels. But to be frank, life can be wonderful or horrible but it surely doesn`t depend on a pair of shoes.

EVEN THOUGH IT IS DIFFICULT, WE MUST NOT COMMIT THE MISTAKE OF SPEAKING ALL THE TIME ABOUT PARKINSON'S. I think it’s no good for us and the (lucky) ones who have carers will notice that they are grateful.

I had to stop commercial work and am doing very few translations (although I will go on as long as I can because it keeps my brain busy) but I was proud, and felt useful when I took part in a two month experience called “Edupark” in which patients and carers from seven European countries explored NON-chemical possibilities of managing Parkinson's (stress, communication, hobbies, depression).  Since then I try to apply myself suggesting ideas, submitting porposals, bringing in with my language or art skills, my tiny bit for the huge whole. That was the case with the European Guide to Living with PD (published by EPDA), workshops in London, Brussels and Gothenborg, or just by sharing experiences talking to people during the congresses.

We are more sensitive than other people. It’s hard to live always on the razor’s edge of depression. But a friend of mine once put it like this, “YOU ARE MORE SENSITIVE, BOTH FOR NEGATIVE AND FOR POSITIVE THINGS. SO JUST TAKE IT AS A GIFT BECAUSE YOU FEEL THINGS THAT OTHER PEOPLE NEVER EVEN THEY KNOW EXIST.” .

So, on the one hand, every day I have to go through the OFF times, the worst ones being those in the afternoon. It’s like “a little death” while pain is crawling up the bones and muscles, and that miracle of nature, our brain, is invaded by dark thoughts and there’s nobody who understands or who can really help.

On the other hand I have my art: BATIK. I adore the touch of silk and enjoy the explosion of colours.

There’s no mathematical logic in it, but adding to the same medication. Stress, shouting, harsh behaviour, aggravates the symptoms whereas kind words, a hug or a bit of attention, fewer falls, feeling better, means happiness.

When I see a smile on someone’s face and their eyes light up when they say “oh, these BATIK pieces are really beautiful”, I AM HAPPY. EXACTLY THAT,  HAPPINESS OFTEN GIVES ME THE POWER TO GO ON.

carolina@carolinahuebner.jazztel.es

Also by Carolin Hübner

• Parkinson Joven ''Epit''

• Exhibition posters and video