"What exactly did you say?"

Sound familiar? Yes, indeed. For many of us such responses are commonplace! We need a strong support network.


(To Indigenous Australian readers, I respectfully alert you to my use of a recently deceased person's name in this article. I apologize for any distress that reading this article may cause. No offence is intended.)


When speaking to Peter Seth my 11 year old Grandson on the telephone, I requested he tell his parents that Frankie McIvor died yesterday.

"Yes Grandma, I'll tell them," came the reply. Silence.

"Would you tell them now, please Peter?" I requested.

To my dismay I heard Peter shout out "hey Mum, Dad, Grandma said to tell you right now, some guy called Frank went to Mackay yesterday!"

Hm. Well, my daughter Elizabeth and son-in-law Duncan came to the phone asking, "what exactly did you say?"

Another experience notched up in the life of a spasmodic dysphonic!

I feel so disrespectful when I laugh about this incident but honestly if we don't laugh, we cry!

Dystonia Australia has until recently been the main National support organisation in this country for people with any of the many forms of dystonia. Dystonia Australia has now ceased operations due to insufficient financial and material support.

If you are able to offer support in any way, please email me or leave a message on this site. Alternatively, if you live in Far North Queensland or even further afield, consider attending our local support group meeting here in Cairns on Saturday 17th November at the Cairns City Library, 151 Abbott Street, Cairns. We are meeting from 11am to 2pm in meeting room number 2. You are most welcome. Luncheon provided, no charge.

There are some excellent highlighted links in this article. They will lead you to a better understanding of Australian Indigenous issues, information about many forms of dystonia and, some delightful information and images of Cairns, the Far North Queensland area and Mackay. Don't forget the two links below.

Sue Bayliss. Cairns, Australia. (s.j.bayliss@bigpond.com.au)

Dystonia Australia: where to from here?

Thoughts passing through mind about Dystonia Australia suspending operations reflect feelings in response to the initial news of the action taken by the Board of Directors. The organisation, Dystonia Australia, represents our orbit of experiences, provider of educational resources and, our hub of communication and support. Insufficient financial and material support take their toll on any organisation. Australians with dystonia, their family members and indeed our broader community, need to pull together in a coordinated approach ensuring recovery of our organisation.

Recovery from the initial shock of unexpected news is an experience of grief. Initially we may feel numb and bewildered followed by feelings of anger, sadness and a desire to bargain in some way. This is really a subconscious strategy attempting to delay the inevitable, although it has already happened. However, we do come to terms with the situation by finally accepting the change.

The loss of our National Coordinator, Nicola Dawson, is not only the loss of someone many of us have come to love and greatly respect. Nicola remains in mind's eye as the 'persona' of Dystonia Australia. The face to an organisation representing our needs, our fears, our joys, our togetherness, our specialness. Losing Nicola is something like losing a reflection of our self identity.

Where to from here? Due to the geographical vastness of our Nation, it is difficult for many of us to have input into discussions taking place between the Directors of Dystonia Australia. However, we are able to support each other in our own local areas and continue the good work previously accomplished by the National Organisation.

Many support groups start with one person mentioning their need for contact to another person who is in a similar situation. A group is two or more people meeting together. Sound simple? Yes, it can be!

If you are not a member of a local support group and do not yet know any one else who has dystonia, a good place to start is in your treatment clinic. Talk to other people there. Ask someone in your treatment team to introduce you to another person with dystonia. Look up web sites for support group contacts. Enter an on-line discussion forum and introduce your self as a first time on-liner. Email this 'distonic' writer so we can get to know each other. Creative thought focuses our attention on identifying solutions. This leads to wonderful outcomes!

Those of us who belong to support groups are well aware of each others experiences - we find we share a lot in common! Read many of the excellent dystonia sites. You can find them through your search engine. In addition to this article, previous blogs on this site all have highlighted links to informative sites just waiting for you to explore them.

Watch this site for information on our local Atherton Tablelands and Cairns Support Group meeting in two weeks. I hope the ideas in this article are helpful to you. Thank you for spending time here and sharing this space with me.

Sue Bayliss. Cairns, Australia.
s.j.bayliss@bigpond.com.au

Dystonia: revisiting grieving and symbolic loss

Symbolic loss is how we describe feelings reflecting the loss of what we previously expected our life, health or relationships to be at any particular point in time. This is in a sense different to the intense feelings of loss associated with the death of a loved one. Although there is also a huge element of symbolic loss accompanying bereavement of loved ones, people coping on a daily basis with the symptoms of dystonia live with their mind's eye image of what they had hoped their life to be. Following diagnosis of a non-life threatening yet incurable neurological disease comes the inevitable cycle of coming to terms with how life will be from that time on. There are recognized stages of grief regardless of whether or not we are grieving the actual loss of physical ability and health, bereavement, or any kind of symbolic loss like changes to what our hopes and dreams had meant for us.

Five common elements in the stages of grief identified and named by well respected Elizabeth Kubler-Ross are denial, anger, bargaining, depression, and acceptance. In relation to dystonia, we may think of these stages as follows.

Denial – Initial sense of numbness when we say things like “I could be knocked over by a feather! This can’t really be happening, can it? It must be a mistake."

Anger – We may say things like “how dare this happen to me!" Blaming God, a loved one or some previous situation.

Bargaining – Believing we may influence a change in what has happened in our life by trading things like "There is no way I will be intolerant of others again if only I can be healed of dystonia.”

Depression – When ‘stinking thinking’ takes a hold in our mind and we just can not see any sense in doing anything or seeing anyone.

Acceptance – Well now. Life goes on so I had better get on with mine!

The above mentioned stages do not necessarily occur in the order described here. Each stage may mean very different things to different people. Some people may experience all of these identified stages, others may experience only two or three.

The grief experience may also be described as feelings of shock, anxiety, guilt and loneliness. The physical component of grief may have the effect upon us of a disturbed sleep pattern quite at odds with our normal routine. We may feel nauseous, lethargic, and unable to eat or enjoy food. When affected by these experiences we gradually become aware of how we need to make lifestyle changes, accepting that our life may never be quite the same again. We may look at how we have dealt with changes previously, how we can learn from those past experiences and what we need to do to adapt our lifestyle now.

Hopefully, the above links will lead you on a path of personal growth. Achieving a greater understanding about how to recognize and cope with feelings, pain and social isolation, associated with dystonia empowers us to accept our situation and collectivize our experiences through contact with others. This link will lead you to local, national and international, support groups.

Sue Bayliss. Cairns, Australia.

Dystonia: grieving symbolic loss

It is with heartfelt sorrow and love that I say, it is impossible for me to write today about symbolic loss in relation to people with dystonia. My thoughts and prayers go out to all involved, especially those who lost their lives in the dreadful events at the Virginia Tech in the United States of America. The great loss and the grief that goes with those losses is of such magnitude.

Our world can be such a beautiful place. It is hard to accept the behaviour of people who are so intent on their own self destruction and also the destruction of others. Tragedy has the potential to blow family structure apart and yet can bring out great collective strength and love from within local, national and global, communities. I can not say ... I can only feel, think and pray.

God bless. Sue .B.