Today I heard on the car radio that it is Butterfly Day for kids suffering from E.B. It was the first time I had heard of this disease and so I looked at their website here and in the United States [be prepared for disturbing pictures]. I was appalled at what small children go through with Epidermolysis Bullosa as their skin blisters horrendously and causes them infections and tremendous pain.This is a rare genetic disorder and affects all nationalities.
The wounds vary in severity and although they resemble burns, they don’t heal as burns do. The child with E.B. cannot ride a bike, skate, or participate in sports because normal play causes chronic sores which are sometimes covering 75 percent of the body and can be life threatening. These children are confined to a diet of only liquids or soft food to cope with blistering and scarring which occur in the mouth and esophagus.
Their fingers and toes can fuse due to scarring, leaving deformities affecting their ability to function. Their lives can involve being constantly admitted to hospitals for wound treatment, blood transfusions, biopsies and surgeries. They often have sight problems because their eyes blister. Chronic anemia is another symptom and this reduces energy and retards growth. Life beyond 30 years is not expected.
I found that in Australia there are attempts to raise money and support services for children who suffer with E.B. and for their families. So I hope that I can raise awareness about this devastating illness through my website to help their fundraising and make their plight easier.
I am sure that you too will find it as heartbreaking as I did when you visit the E.B. websites.
In life we need fun and laughter to stay healthy. When it is missing then we turn to substances and or processes that lift our spirits. Unfortunately, using such means results in repetitive behaviour which is not fulfilling because eventually whatever we do isn’t enough. The clown in addiction can be a cover up for immense unhappiness and low self esteem. In other circumstances, the clown is a fun performance for the audience to enjoy.
as she spoke to me about the sadness and abuse
she had experienced all her life up till now
she chuckled often at the most traumatic recollections
as a therapist I was obliged to give her feedback on this
pointing out that incongruous behaviour was not unusual
in codependence and addictions
she quickly understood the message about
the clown in addiction
and this insight, although it hurt a little
no pain no gain they say
helped her to be more authentic about
her feelings and therefore closer
to resolving the turmoil inside
serenity at last
We brought back a Siamese kitten from New Zealand and he settled nicely in our family. This family cat became a loved pet, lifting our spirits. Siamese cats, although aloof, are very talkative and some are very affectionate. When there is a pet in the family everyone learns the art of unconditional love, as well as how to live with grief.
our cat stopped eating and
just sat on the bed quietly
this was unusual so we
took him to the vet who
gave us the sad news
that he was seriously ill
and needed to be put to sleep
we said our goodbyes
and on the way home
the whole family cried
that’s how much that pet
was loved and totally missed
When we are faced with the death of a loved one the pain is deep. The shock can be so immense that we cannot believe it’s true. Sometimes even sorrow is buried by the shock. As time passes we adjust to the reality of the death and grief takes over. Then we flip back and forwards through those stages of shock, awareness of the reality, and grief peppered with attempts to justify our inability to have prevented this outcome. Finally with relief reality takes hold and we accept that we must give up and say goodbye.
last week a dear friend told me of the
loss of her friend as she mourned Verna
then at the beginning of this week we lost
another respected member of the community
Dr. John Hirshman A.M., such a loving friend
and today I found out that our closest friend Sally
was killed by a car on her way to work
all week I was sorrowful but today I kept repeating
“it’s unbelievable” realising that I will not see Sally again
such a heartbreaking week full of death and grief
it made me become aware of my mortality and
that of everyone else near and dear to me
center of a rose, photo by Jan Roger Johannesen, Trondheim, Norway, http://www.janroger.no
Living in a relationship that is unhappy can lead to sickness. Some people sacrifice themselves for the sake of appearances and their children. They think that it is better to stay in the relationship than to break up a family. However, what they don’t realise is that staying in a dysfunctional relationship is a tragedy for the children and all concerned. This only provides an example of how miserable life can be and that we have to put up with it. It is far better that counselling be sought in an attempt to improve things or failing that believing that a fresh start can bring a better life.
she cried as she told me her tragic story
of domestic violence and misery
the fear for her children’s future
was another side to it and
in response to my suggestion that
should she want to move on there are
refuges for the safety of women like her
she stared me straight in the face and
told me that she couldn’t bear the
thought of breaking up her family
“what would people say?”
I wondered what tragedy would be the
outcome of this dysfunctional relationship