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Gloria Gordon facilitated the group which discussed how it feels to live with sufferers of Gauchers disease. Husbands, wives, parents and other relatives attended the Workshop session in March 1998. Gloria reports:
I went along to the room where the group was scheduled to meet and put the chairs around in a circle so that it was easier and more friendly.
As always I have nervous feelings before a new group of people are due to come together. After all these people are strangers and had never sat down together to talk about intimate problems.
Some arrived on time and some came a little late. I was keen to start on time as I only had one hour which did not seem very long.
I began by introducing myself and giving a short history about my circumstances. I had been a carer myself for my late husband Alan who had Gauchers disease and cancer.
I knew through those six and a half years of Alanµs illness that there was no one I felt I could share my difficult emotions with. Some of these feelings I found unable to manage satisfactorily such as anger with the diseases, guilt at me being well and feeling helpless and hopeless despair at the future. And yet there were moments of laughter and a great sense of humour.
I brought my feeling to the Committee of the Gauchers Association and made the suggestion that I would like to be the one to be supportive and be there for other carers who might at times like to share their troubled minds or just have someone to listen to them and to be heard from time to time.
I have over the years talked with people over the phone and have felt connected to them.
Then I let everyone introduce themselves and say a few words as to why they were there.
As one person stated: ?Knowledge is good and it can only get betterµ and being with other people can be an enlightening experience. We hear about other peopleµs skills on coping and gain from them.
Each one in turn was so brave and full of courage to unburden themselves. They were able to let others hear how hard it is to live with a disease, how frightening it is to find out at the beginning, the fear of the unknown and what lay ahead, and the progression of the disease.
Anger was allowed in the room so people could hear it and realise that it does not destroy but gives permission to let feelings go and to move on and resolve itself. Also recognition that guilt too with all its negative agenda is okay to have.
I think the hardest area to allow ourselves, those of us who take care of others, is to find some time to take care of ourselves, to nurture ourselves and to give ourselves kindness.
To be able to take some time to do things we enjoy, to have some quality time, to meet with friends and share laughter, to listen to music which can fill our souls; just to walk in chosen solitude to refresh and renew our spirit so that once again we can carry on with our responsibilities. To learn to care for ourselves with gentleness, to bring some calm to our hectic lives, so we can go on giving with love in our hearts.
There was one lady in our group, forgive me for singling her out, who truly inspired us all. At first she was not sure that she should be there as her children had another disease but with our nodding and encouragement, she continued her narrative.
With a beautiful smile on her face, she told us of how one of her sons had died from Niemann Pick disease and on hearing us discuss anger, she told us how she had felt anger and frustration, not at the disease or her child, but at the people and Authorities who could have done more to help her son and her family. This had made her move on in life.
She seemed to have found a way to keep the precious memory of her child that nothing could destroy. How fortunate we were to have her in our midst.
I would like to thank everyone in that group who allowed me into their very inner fears, who let me see a side of them which I know spends everyday of their lives being there. All were supportive, caring and loving. In one short hour I felt humbled and so much more given to than I was able to give.
I hope in a small way there was a beginning to hear each other, there was a learning and growing from each other and encouragement to face life with care for yourselves.
I would like to give a special thanks to Prof Cox who shared this hour with us and showed us his personal as well as professional side.
As Prof Cox said to me: 'You were a sparky group'.
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Source: Gauchers News July 1998
© Copyright Gauchers Association 1998