‘You still have a choice…’
I’ve known today’s Big Red Chair guest since I was seventeen. She has always seemed grounded in the face of adversity, and being less grounded, it fascinated me how she found such surety. Faced twenty- five years ago with the birth of a disabled child, this woman didn’t once allow difficulty to strike her down. Rather, she became stronger, and a staunch advocate for those less fortunate than ourselves. She has wisdom and profound thoughts,
Dianne Fuglsang, welcome…
1.Where were you born and raised?
I was born and raised in Tasmania, having a fortunate childhood, free from tragedy and trauma. I was safe and very well-loved and with the privilege of a wonderful education that opened doors of all sorts.
2 What did you want to be at age 12 …18 ….30 and why?
At 12 I don’t think I had any idea at all what I wanted to be: I just wanted a boyfriend!!
At 18 I thought I was going to be a maths teacher but I don’t think I really wanted that. I was overwhelmed by the idea of studying for another 3 or 4 years and I found the first weeks of university very stressful. It did not feel like my personal ambition to teach, it felt like the ambition of the school and the teachers. Because I had done well, it was assumed that University was the only choice. All I wanted was to offload the pressure of study and ‘to be happy’. It seems on reflection it was my only goal in late adolescence.
By the age of 30 I had three young children under 6 and I don’t remember any thoughts of what I wanted to be at that age other than a good mother. Rather boring but there it is, the absolute truth.
Of course the lack of goals was possibly a godsend in view of what was around the corner for me…
3. What strongly held belief did you have at 18 that you don’t have now?
My firmly held, but since discarded, belief at 18 was this: I could only be happy if sad things did not happen to me.
I believed that difficult events, like losing someone significant through death or having someone close to me become very sick, meant that I would be unhappy for the time that it took to get over that event. I did not understand the concept that happiness was not determined by outside events, but rather by a person’s attitude to those events.
4.What changed that belief?
I changed my mind very gradually in the months and years after my father died suddenly at home of a massive brain haemorrhage. I was 21 and had been married for 7 weeks. My mother found him collapsed on the floor at their new house by the seaside, the house in which they would live out their middle age years … or so they had planned.
She tried to breathe life back into his cold form but to no avail; he had died alone some 8 hours earlier. She had been away visiting her mother interstate for the weekend and my sister and I were both at work.
I grieved as everyone does after such a sudden bereavement and I helped my mother grieve. Life slowly returned to normal.
I was beginning to learn that happiness is not dependent on events, rather than on how we handle those events. My father’s legacy was a mostly happy-go-lucky nature and a black sense of humour and inheriting these traits helped me to heal. The beginning of reading self-help books and uncovering the benefits of self-talk started in those years immediately after his death.
Then, in 1987, my fourth daughter was born at the end of an unplanned pregnancy. By the time she was 9 months old, after the agony of watching her fail to develop normally, she was diagnosed with’ severe global developmental delay’, a term which basically suggested at the time this would be life-changing.
And it was.
We sought a more specific diagnosis for 15 years but despite hours and hours of tests and readings and photos and bloods taken and brain scans, appointments with visiting geneticists and neurologists, it is still to this day ‘severe global developmental delay’. If someone asks me what is her diagnosis I answer ‘severe undiagnosed intellectual disability’, but strictly speaking this is not the diagnosis, but the outcome of the global delay.
The term “severe” determined she would never be normal (that is what the paediatrician said at 9 months) and that she would probably never develop past the cognitive age of a 5 year old. That was a tough message to take in about a beautiful, black-haired, olive-skinned baby whose only problem then appeared to be low muscle tone and vague eye contact. I remember attempting to reconcile this tiny placid baby of the present with an imaginary slouching, shuffling, muttering adult of the future. It was a horrid truth delivered that day and a very tough road for many many years.
At age 18 she was assessed by a child psychologist as being somewhere between 3 and 14 months development, so they were right in their assessment of her all those years ago: the delay in her development is indeed very severe. Today she does slouch and shuffle and mutter but miraculously we have adapted and her cognitive age is not a problem to us now.
She talks a little and walks but nothing she does is normal. She needs help with all her personal care tasks and will never live independently. She cannot drive, cook, shop, do house hold chores, read or write. But she is flexible in her acceptance of change, uses sign and gesture to communicate, loves to socialize and eat out and attend concerts, enjoys drama classes and dance and music and books.. She has a good sense of humour. When she moved into supported accommodation with three other young adults 6 years ago we thought we had won the lottery. She has a happy and fulfilling life and comes home to stay with us once a fortnight for 24 hours. We reckon she is thinking : ‘Oh no, not these two old crocks again!’
I learned through the years of caring for her, a level of patience and tolerance that I previously didn’t know I possessed. This in turn helped me cope with my “lot in life” and made me realize that happiness, firstly in little chinks, and later in further vast chunks, was there for the taking if I would just focus on the right thoughts. I had finally learned that it was my attitude, not the events themselves, that determined my level of happiness.
5. What other events do you consider shaped you into the person you are today?
I joined a steering committee of parents of disabled children and as a group we recognized a need for an organisation to advocate on behalf of Tasmanian families of children with disability. I was a member of the Board for almost 13 years. I worked harder and learned more during those years than ever before in my life. It was like a full time job squashed into the remnants of the day that the family left over for me. I was possessed with thoughts of helping others almost 24 hours a day.
During those years we helped hundreds of families throughout Tasmania find meaningful, beneficial services through both Federal and State Government Departments. We had listened on the phone, written submissions, produced a quarterly magazine, lobbied politicians, talked to community groups, and I am proud to say that the Association continues today to do all those things with secure funding.
Thus leaving a paid job, which I had believed was a step towards a more relaxing and healthy lifestyle, turned out to be the catalyst for finding within myself an energy and passion for volunteering, for working with those families who had similar problems to ours and for becoming part of a team to help solve those problems. Along the way I have nurtured and developed an interest in public speaking, resulting in a boost to my self-confidence, which had taken a very heavy battering during the earlier years of Isobel’s life.
6 What advice would you give to anyone faced with the kind of challenge that faced you when you discovered Isobel was disabled.
There were probably five main concepts that helped me, all of which I developed slowly over time, albeit with plenty of setbacks.
Firstly gratitude for the things I could appreciate, the tiny things like a winter sunrise, a walk on the beach or a warm cuppa and cake with a friend.
Secondly, trying to live in the moment, a concept I became quite adept at and which today remains my main weapon against everyday stress.
Thirdly, trusting that in between all the hard work and chaos and plain agony of life as a carer, there are plenty of moments of joy if I made the time and occasionally put myself first (this was only possible if I organized respite: there was no let-up in my role as carer unless Isobel was asleep).
Fourthly allowing myself and family the time and space to grieve our loss. This was a life-changing event for all of us and I think it was about 11 years before the sadness finally seemed to have vanished. I was still often angry and frustrated but rarely sad. I cried on and off for months after the “diagnosis” and forgave myself for that. I think it was an important part of expressing my loss. I would always feel better after a good howl.
*** My final concept was understanding that it was still my choice as to whether or not I let this event ruin my life. I would lecture myself day after day in the early months, sometimes inside my head, often aloud if I was alone, “ you still have a choice, it is still up to you”
7 Do you believe in goal setting?
Rather than setting goals, I value setting priorities for each day but also for living life in the moment. I believe that spending time setting too many goals makes you miss what is happening in the here and now. John Lennon once said “life is what happens while you are busy making other plans”.
However if I knew definitely I only had a couple of years to live I would try to stay away from Facebook and other newly-found distractions.
I would travel to New York, Scotland and Ireland and revisit parts of Europe.
I would get all my personal writing in order so my daughters have access to it easily.
I would knit and read and exercise more and I would keep up my public speaking through our Rostrum Club.
I would also spend far more time with my daughters and grandchildren and very close friends.
In fact apart from the latter, I am doing most of what I want to do and have no long term goals, other than a vague plan to take German classes and buy a bicycle with a basket for riding at the shack. But as is my usual manner of procrastination, I may not do these last two things.
Perhaps I will, perhaps I won’t.
I have kept myself sane (well, sort of) through procrastinating long and hard for many years. My father always said as a joke“never do today what you can put off until tomorrow” and when you are truly, crazily busy in the midst of sorrow and chaos, it is good advice. In other words, just do the bare necessities and enjoy the rest of the time. So, in a nutshell, I don’t set goals and am quite happy to plod along without the pressure of them. Weird, some may say, but it works for me.
10. If you were having a dinner party who would you invite and why?
Just my four daughters. I hate entertaining. I am not interested in celebrities’ lives and I can read all I want about authors and artists, scientists and scholars on the internet. I am passionately interested in my daughters and their lives. I love having them all together, just watching them interact with each other. I would order mushroom pizza, serve it with a good shiraz and finish off with coffee, a nice Muscat and some swiss chocolate. I would insist that they helped clear the table but that there was no help in the kitchen. I love nothing better after a meal with the family than pottering about myself in our tiny kitchen and listening in to the girls’ banter and stories etc
11 What are the last 5 websites you visited:
- Sydney Writers’ Centre :I love it, especially the way it is aimed at everyone who likes to write, not just the elite writers. I love the tips especially. They have clarified a few grammatical and punctuation dilemmas for me over the years of enjoying writing.
- ABC Ramp Up where you find news and intelligent discussions on disability issues. I often comment.
- The Sufferfest the website which my son-in-law has produced. He sells videos for serious cyclists who love to suffer. His writing is witty and imaginative, he is an amazing athlete, is into philosophy, loves to travel and enjoys a good red and a mature cheese. I enjoy reading his blog most days.
- Edenland winner of the Sydney Writer’s Centre Best Australian Blog this year. I found her through the Centre about 6 months ago. She is a talented writer, a mother and a strong and courageous woman. Her writing is honest, inspirational and often very funny, her prose pithy and poetic. I hate it if I haven’t got time to get my daily fix of Edenland.
12 What are you reading right now … mid read review?
The Spare Room by Helen Garner. This is a review rather than mid read review as I have just finished it in preparation for our Book Club meeting.
The characters are totally believable. I relish a book that presents a character to whom I can relate. Helen’s simmering rage (which Nicola is mostly unaware of, at least in the beginning) hits a raw nerve.
It is a beautifully written book with short, sharp sentences and Garner’s usual gutsy, blunt, succinct prose. The reader is immediately drawn into Helen’s head by the end of the first few pages. We feel her fury and her frustration but also her love for her friend. It is a realistic, unsentimental look at what can happen to a friendship when it is put to such a test.
We grow through these 194 pages to admire both these women for very different reasons. It is an unforgettable gem of a book, with empathy and honesty permeating every page. I highly recommend it.
Dianne, you are filled with an empathy of your own and a kind of earthy wisdom I admire. Thank you for answering my questions and for being so refreshingly honest.