ADI 2001 New Zealand -
Presentation by Christine Bryden - Slides 13 to 17
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Slide 13
Jack Kornfield in “A Path With Heart” says we can
change our inner attitude, and this is enough to transform
our life. We can choose how we will react to our new life
in the slow lane, realizing that: “Transforming the patterns
of our life is always done in our heart”.
So our first step is to find out what we can celebrate. We
choose to find joy in being sensitive in our relationships,
in being open to our spirituality, and finding positive aspects
of living in the slow lane.
For me dementia meant retiring from work and being able to
pick up my daughters after school in the light, rather than
race to see them in the dark after a long day at work.
For Betsie Ten Boom in the concentration camp horror of Ravensbruck,
the fleas were a Godsend, keeping away the guards.
As Charles Swindoll has said, “Life is 10% what actually
happens to us, and 90% how we react to it.”
It is through finding meaning in life, even in dementia, that
we can create a new sense of becoming and overcome fear of
loss.
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 Slide 13 |
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Slide 14
What you can’t feel, you can’t heal. Rachel
Renman says that the part which feels joy is the same that
feels suffering. By working through our fear, we can begin
to feel joy. We are on a path to healing, through feeling
and acknowledging our fear, anxiety, and the ebbs and flow
of confusion. By casting aside the lie of dementia we can
work towards creating a new future. We need to realise that
our passage through diagnosis, drugs - and now through to
determination - will be a struggle of feeling to achieve
healing. Most importantly, on this journey, we can come
to realise that we are uniquely qualified to reach out to
you, our families and friends walking alongside us on this
journey with dementia.
We have been where you are, in the world of normals, and
know what that feels like intimately. But you have no idea
what it feels like for us. We are bi-cultural, bi-lingual,
speaking and knowing the language and mores of normality
as well as dementia. So we can bridge the gap between the
world of normality and the world of dementia, and help you
to understand us and our needs.
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 Slide 14 |
Slide 15
In reaching out to you, we must maintain a fine balance between
pretending at normalcy or withdrawing into helplessness. What
is normal in this abnormal disease? We can be tempted to maintain
a cheerful facade, and deny anything is wrong. You may either
go along with this and deny dementia, or assume we lack insight
and take over our lives.
We cannot win. If we both pretend at normalcy, remember that
increasing energy is required to maintain the self, so less
is available for you, and for coping with stress. We may show
a catastrophic reaction to what may seem to you to be a simple
challenge.
If you take over our life, then it is so easy for us to withdraw
into helplessness. Life is so hard anyway, and you can make
it so much easier for us. But in so doing, we who need constant
repeating of actions and thoughts to keep remembering, lose
functions daily.
The challenge for me is to reclaim my life with realism and
humour, with you alongside me as a partner in this endeavour.
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 Slide 15 |
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Slide 16
Determination
is about getting back into the driving seat of life. We
are confronting the fear of a living death, drawing on our
inner resources. We can overcome our feelings of inertia,
of exhaustion, as we face this journey of dementia with
courage.
We need to find the pearl hidden within us. Like a pearl
formed through the irritation of a grain of sand within
an oyster, our pearl has formed through the challenge of
living with dementia.
Finding this pearl within is the key to “transforming
the patterns of our life” and creating a new future
of life in the slow lane.
We can work together as PWiDs in discussion groups, such
as happened at the Australian National Conference and is
happening at this ADI Conference, or in support groups in
our home countries, or as part of the Internet-based Dementia
Advocacy and Support Network. As a group of people who share
the same world, the world of living with dementia, we can
find our hidden pearls, working together to build a new
future, by sharing, supporting and encouraging each other.
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 Slide 16 |
Slide 17
We PWiDs are looking towards new horizons of hope, as
we seek liberation from internalising the oppressor of dementia.
As persons with dementia we can relate so well to what Nelson
Mandela said in his inaugural speech: “As we let our
own light shine, we unconsciously give other people permission
to do the same. As we are liberated from our own fear, our
presence automatically liberates others!”
To live with “the fear of ceasing to be” takes enormous
courage. The precious string of pearls, of memories, that
is our life, is breaking, the pearls are being lost. But by
finding new pearls, those created in the struggle with dementia,
we can put together a new necklace of life, of hope in our
future.
We need to express our voice together, from our different
perspectives of this interdependent struggle to live with
the unpredictability and irrationality of dementia.
We seek a new paradigm of dementia survival with dignity walking
with you on that journey from diagnosis to death.
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 Slide 17 |
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