Red and yellow and pink and green
Orange and purple and blue
I can sing a rainbow
Sing a rainbow
Sing a rainbow too……
Recently I read the most incredible book Green Vanilla Tea. It is written by Marie Williams. Her husband was diagnosed with a rare neurological illness at age 40 – a younger onset dementia with Motor Neurone Disease (Also known as ALS). It is a story of compassion and courage in the face of a deadly and little understood illness. Above all, it is a love story. She tells of the importance of a quilt that was made for her husband by her family and friends.
“We are all multi-storied beings and we live interactional lives filled with hopes and dreams as well as struggles. But when we get sick, or live with disability, it’s easy for our personal stories to be lost or overlaid with tales of illness that profile deficits – the things that are ‘wrong’ with us. Now, if these more dispossessing story lines become the definitive story about us, definitive in the sense that this is how we start to know ourselves or how others know us, it leaves very little room for the rest of us to be seen. In our situation, Dominic was unable to expand the various ideas about who he was beyond the illness on his own. It required a deliberate act of advocacy on our part.”
The deliberate act that Marie and her sons made was to construct a quilt for her husband, filled with memories.
“It’s a beautiful instrument of storytelling and in its folds are all the things Dom held dear. We used fabrics that had lived other lives – hatbands, school blazer badges, materials brought back from trips to exotic lands – along with transferred photographs, our painted footprints, art work and personal inscriptions from family and friends. In its making, friends would come around and chat about the various story blocks that were out on display on our dining room table. It invoked an authentic curiosity about who we were as a family outside of this illness and the house started to fill with tales of love and fatherhood and value. So the quilt became more than a repository of memories. It also gathered community around us and with that it became easier to reach out for help. Illnesses like dementia and Motor Neurone Disease can be socially isolating but the quilt invited community tenderness and it gave my husband a place where he could once again feel familiar in these stories.”
Reading about Dominic’s quilt made me think about a quilt that was made for me after my accident. It was so wonderful that I made it into a wall-hanging and, it adorned my wall for twenty-three years. I often found myself humming “I can sing a rainbow” whenever I gazed at it. The colours seemed effervescent. It carried a kind of joyousness with it. Anyone looking at it was bowled over by it’s magnificence. But it was more that a beautiful wall ornament. So much more.
Let me tell you about it.
It was made for me by Jil Hirst. Jil used to be my Movement Lecturer at University. She was a woman who seemed to glide when she put one foot in front of the other. She had a wry sense of humour and the students loved Jil’s classes. She had the ability to make one believe that we could all dance! After I left University our relationship deepened into friendship. When I had my accident, Jil was distraught. I went home to George and Jil would often phone Mum regarding my progress. In April, Jil came to spend a week with us.
I breathed Jil into my life with her wit, humour, gentleness, practicality and love. I had missed her. That first evening she presented me with a parcel. I am mad about presents. It was extremely difficult to open with my right hand suddenly “spasticised” but Jil assured me that I could rip away and I did so with gusto. I looked at the folded material that was revealed. Jil took it from me and – WHOOSH – she threw it up and out so that it spread itself over the settee. It was the most beautiful quilt that she had made. On examination, I saw that it was made up of different coloured pockets. Each pocket was fastened shut in a different way. One pocket had a shoelace that was tied in a beautiful bow. Another had beautiful coloured buttons closing it. There were others with zips, hooks and eyes, press studs. There was every type of opening and closing gadget imaginable. And these were all presented on different scraps of material making this most stunning patchwork imaginable.
“In each pocket there is a present. But, Gaynor, there is a rule that goes with this quilt. Each pocket and pouch must be opened using your right hand.”
“But Jil, this hand is not working at all. What you have just said is a physical impossibility,” I appealed.
Jil was having none of that. “When you began movement classes with me, little did you know that one day you would be part of The Barefoot Dance Company,” she reminded me. “Your right, spastic hand will work in the same way. Gaye, you have never been one to give up. The pouches and pockets holding their presents are not going anywhere. You will try and try and try again. And again. The presents are there, waiting.” She put her arms around me and held me.
The pocket that was laced up like a takkie drew me to it first. C’mon, Gaynor, you just need to pull the one lace and the bow will begin to unravel, I thought. I lifted my right arm and Jil gently said: “No, Gaynor, you are moving the wrong part of your body. Don’t heave your shoulder up, move just your wrist. See how it works with your left side. Now, do the same with the right. Come, give it a try.”
I heaved my right arm up, leading with the elbow. Jil moved the elbow down, and gently pushed my shoulder away from beneath my ear! Then moving my right arm with me, we arrived at the bow. Now I had to reach my hand out and grab one of the laces. My hand didn’t work as it used to. The first finger just pointed up and refused to bend for a good few minutes. The other fingers all looked totally surprised to be attached to my hand and seemed to be looking for leadership. Unfortunately there didn’t seem to be any! One can have no idea of the concentration and the time it took to finally grasp that bloody little lace. I gave it a yank and the bow crumbled. I then had to undo the laces so that the pouch lay open. Three quarters of an hour later, a totally drained Gaynor was at long last able to draw some beautiful earrings out of the pouch. Sherbet-Herbert, I thought to myself, your right hand is a problem!
There were ten pockets and I did one a day. Each pocket was equally exasperating and often I found myself breaking out in a mild sweat. They all yielded up untold delights. But for me it wasn’t what was in the pockets that filled me with indescribable satisfaction. It was the conquering of each “gadget” on the pocket. I did not let them get the better of me. As the years passed that quilt meant so much to me. I loved looking at it. It was a place of monstrous difficulties for me which Jil knew I would eventually solve. She believed in me before I believed in myself. And as I had learned to dance, so I learned how to fasten and unfasten all the openings on those pockets. I went to Occupational Therapy and finally I was able to fasten and unfasten things in my everyday life!
Both quilts were beautiful items. But their true beauty lay in what they accomplished. Dominic’s quilt gave him so much dignity. Mine gave me the start of the dexterity I would eventually achieve with my right hand. More than that, it gave me back a belief in myself.
How I wish I had been able to help Jil in the way she helped me. She died of Cancer in 1997.
I miss her.
Marie’s book Green Vanilla Tea won the Finch Memoir Prize 2013