To communicate does not always mean using spoken words, as the development of sign language shows. But I want to write about our experience with art and non-spoken communication.
In 1962 our daughter, Miriam, was born with Down syndrome. Our feelings of disappointment and sadness were soon replaced by a determination to fill her life (and ours) with challenges that would prepare her for as normal a future as was possible. And she did have that normal life. Although she was born too early to take part in mainstreaming she stood out in all her schooling activities, and, later on, in different employment situations. In 1989 Miriam went to a course at the Mosgiel Abilities Resource Centre to learn independence skills. At the end of the course the teacher asked me, “Did you know Miriam has a talent for painting?”
No. We didn’t know.
Miriam was enrolled in an art class at Queen’s High School, Dunedin. The girls in her seventh form class couldn’t understand how it was possible that Miriam knew what to and how to paint without having studied Art. She knew about technique and placement. She knew about colours, bold and bright, and full of life. We were excited to see the work she produced, while she stayed calm, naturally and totally accepting our praise. She had exhibitions in several venues and kept painting, four times a week, one painting in one hour during the time in class.
Towards the end of 1990 my husband Bart and I realised that Miriam had become a different person. She was fearful and had become so quiet. A medical examination revealed hypothyroidism. But, something had gone really wrong. The medication was slow to take effect. During this time Miriam still went to work, continued to go to her art classes but she became so strange that we were desperate. We were told that the psychiatrist who dealt with intellectually disabled people was on sabbatical. Why had I not been aware earlier of this change in her? I kept asking myself questions, trying to pinpoint how we could have prevented this. The ‘whys’, the ‘hows’ and the ‘whats’ droned in my head like an uncontrollable chainsaw. I carried guilt chips – no, raw squares of uncut Oamaru stone block – within me. During this time I noticed she was functioning at different levels. Occasionally she’d say, “Oh, good, I’m back on Earth again!” But a short while later she’d say, “I’m not on Earth!” When I asked her what she’d like for Christmas, she said, “The best thing I’d like for Christmas is to be on Earth again!”
After the psychiatrist’s return to Dunedin Miriam was put on Pimozide, an anti-psychotic drug. It did its work and after six months our daughter was herself again.
Later, going through the work she produced during this time, I noticed that several paintings showed a solid black circle amidst the abundant display of colours she’d used. She couldn’t explain why she had done this but I am convinced this was her way of communicating how far away she was from us. During this time she had been in some mental stratosphere we couldn’t reach, where everything she’d known had become like something on another planet.
But Miriam’s art work continued to amaze us. At the beginning of 2000 she had an exhibition at the Moray Gallery in Dunedin. A festive occasion. She was interviewed for the television show, Holmes. The reporter asked Miriam how she felt about seeing her paintings on display. Miriam’s answer, as true and unassuming as her whole life has been: “I’m quite pleased with myself!”
In 2008 I wrote The Madonna in the Suitcase, a book about Miriam’s life. There was so much to tell, so many events to record in her interesting life. But when I came to write the first draft of the above dark period I didn’t think I could go on. I cried and howled, remembering again how frustrated I felt, how angry, sad and helpless. We had been on our own in this: there was nobody who understood what was happening in our daughter’s mind and she did not have the communication skills to explain.
I sent the manuscript to eight publishers. All returns were heartbreakingly beautiful but nobody was interested. With the support of my writing group I self-published the book which was launched in May 2009. Recently I ordered a fourth reprint. Professor David Stewart, the retired Assistant Vice-Chancellor, Health Sciences at the University of Otago wrote in his foreword:
To read and study this story would help medical and nursing students better to understand persons like Miriam, and to appreciate the challenges they and their families face to gain acceptance and independence within our society.“
At the end of 2001 Miriam had a severe stroke. She has not wanted to paint since then. I have more and more had to become her ‘voice’, while at the same time making sure she retained her autonomy.
After Miriam’s stroke
I see my daughter lying asleep in her bed,
her life force reduced.
I remember her
as a woman who knew
going to town, taking a bus,
buying a Lotto ticket,
a cappuccino and a muffin
at the Muffin Bar.
One day she rang:
I’ve got fifteen books from the library,
I can keep them for three weeks.
Now her hair spreads out on her pink pillow,
her good hand relaxed.
Her damaged hand lies still
on the wine-red mohair blanket,
fingers gently spread,
the thumb apart,
the index finger slightly curved:
in the same way she held her paintbrush.
Even in her sleep her presence
of herself, her energy,
one day you’ll enjoy your life again.
We cared for her at home with the same deep love and intensity until March 2013 when we decided it was time to let her go into care. I grieved for a long time.
During the past year we’ve seen changes taking place in her body and in her mind. Again there is this feeling of helplessness, of ache that cannot be relieved. We know she has had a rich life and even now in a care home it’s delightful to watch her limited verbal communication with the other residents.
As parents we are grateful we have had the rich and colourful experience of looking after our daughter. We are grateful too that in her own way she was able to let us know about her inner joys and fears. But as her communication now has become very limited we need to learn to interpret and understand even more what she tries to tell us.
That extra chromosome
When you were born we vowed to let you go,
find the path you chose.
We were there to guide, protect,
didn’t want to own you.
You were your own
with that extra chromosome.
From our private dress circle at home,
we watched you grow,
observed your talents, transforming
white paper with brush and paint
into fiery statements of your dreams.
All these years you were your own
with that extra chromosome.
Now destiny and that extra chromosome
accelerates our different ages into one.
We see a change in you,
we feel a different fear.
How best can we protect
your clever mind which can’t control
what happens in your brain.
This time there is a change.
We have to let you go,
you’ll never be the same.
Huberta Hellendoorn was born in The Netherlands and has lived in Dunedin, New Zealand, since 1960. Her articles have been published in Dutch and NZ publications, and her short stories have been broadcast on RNZ National and published in literary journals such as Sport and Takahe. Her book about Miriam, The Madonna in the Suitcase, was adapted for radio and broadcast on RNZ National. Huberta’s memoir is forthcoming from Mākaro Press. To read more about Huberta and view some of Miriam’s other paintings, visit huberta.nz.