E.B. (Epidermolysis Bullosa)

DebRA Queensland logo, Butterfly DayIn Australia you can help by reaching the support people for E.B (Epidermolysis Bullosa) at DebRA Queensland. As a result of my post about Butterfly Day and E.B. there was a comment by Gena which I believe will help the E.B. campaign, so I’m including her comment in full here. Hopefully this will inspire people to become active in Gena’s work too. Children especially suffer such pain and life threatening illnesses because of Epidermolysis Bullosa so please consider pledging your help.

Comment by Gena:

Hello! I receive “google alerts” for anything about EB, and your blog arrived in my alert today. I just wanted to write and say “THANK YOU!” for spreading awareness about EB! My Mom suffered from Recessive Dystrophic EB, Hallopeau-Siemens subtype. She was a marvelous woman, and a warm and caring mother to me and my two siblings. She is one of the few with her severe subtype to have children, and we are all EB-free. She lived to the age of 65, and serves as an inspiration to others with EB because of her long life and courage in the face of this disease. She endured many infections from chronic wounds, had many surgeries to improve her mittened hands, developed squamous cell carcinoma which resulted in amputation of an arm and a leg, and yet she loved life and was in all ways a child of God. I wrote an article after her death for the DebRA organization, which you can view here: www.thedenslaws.com/personalstories.html

In the U.S., I am working with volunteers to pass a Bill for National EB Awareness Week, Bill H.RES.335. The companion Senate Bill, S.RES.180, has already passed. If one of your readers knows folks in the U.S., they can write, fax, email or phone the House Majority Leader, Speaker of the House, and Majority Whip, and ask them to bring this Bill to a vote under the 109th Congress, before they finish in December. They can ask the same of their own Congressperson, and they can get all contact information at www.house.gov or www.congress.gov.

I also work with DebRA International, helping people in countries to find resources. Currently, I’m working with a family of four siblings in their 20’s in Iraq who have no bandages or wound care treatment, to go to Israel to be diagnosed and receive instruction on bandaging, and a couple in Pakistan with a 2-year-old son – all have a more severe subtype of EB. There is just not enough help for these people, and spreading awareness as you have done is a great gift to our community!

Thanks for the opportunity to leave a comment! Gratefully, Gena Gruschovnik

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Grief

center of a rose, photo by Jan Roger Johannesen, Trondheim, Norway, sorrow, tragedyWhen 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

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Lonely

lonely, photo by Hipolito Alonso, Rio Gallegos,  Argentina, alone, singleHuman beings have an innate need to belong. This includes being in a union with a significant other and groups such as family, friends, community, work. Happiness also comes as a result of activities carried out alone such as walking and meditation. Then again sometimes being alone can bring on feeling lonely. This may not last long but it is a feeling which is unsettling. Nevertheless, without this feeling we would not socialise, so it has its value even though it is a nuisance.

it was a relatively happy day for me
then out of the blue I felt lonely
so I sat with the feeling for a moment
am I isolating? have I socialised lately?
then I realised that I am faced with a
necessary but unpleasant task to do now
which made me miss having fun with others
so feeling lonely was more manageable than
feeling self pity!
better get on with it I guess and
if I still feel lonely I’ll call someone

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Love addiction

breaking, photo by Len Nguyen, Bloomfield, United States, soulmate, hostageHow often are we amazed at how we are held hostage by loving someone who does not return that love. Unrequited love is very potent and keeps us hooked. We become unaware that the other person does not feel for us as we feel for them and just because they show interest we interpret that as being what we want it to be. This is called denial and the core issue is love addiction. When we can see it for what it is: purely friendship, then we are able to stay real. But when we make something of it that it is not then the end result is pain. Love addiction is experienced by both the giver and the receiver.The receiver (victim) is the one who hopes that what they want is truly happening. The giver (perpetrator) is blind to the needs of the other and keeps them hopefully dangling. The whole process causes intrigue and is in itself love addiction.

she smiled, joked and had a sexy look
he thought he had found his soulmate
they thought alike but when he tried to
get closer she ran away
when he gave up, she was back
promising more than before but then nothing
he decided that was it, never again!
but she looked at him and he melted
what was he to do with this joy and pain?
she couldn’t understand why he was making
such a big thing out of nothing
she wanted just friendship and
was not ready for anything more
yet she couldn’t stay away!
they call it love addiction

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the loss of a parent

It is a very sad moment when a parent dies, especially after appearing cheery on your last visit in hospital and they give you a warm hug. What makes it harder is if you had a good loving relationship and experienced unconditional love. The pain stays with us at different degrees for the rest of our lives.

You said “Mum’s gone” and burst into tears
I said “oh no, I’m so sorry for your loss”
we had hoped for more time
even though we both knew that it could happen
because she had been so sick,
it was still a shock and it threw me back
40 years ago when I lost my Dad
here I am up at 2a.m. thinking about
how much it hurts at the loss of a parent
my thoughts are with you at this
very sad time

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