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| Laurette's photography |
The first year after being diagnosed with MSA I tried to
avoid reading about the disease. The symptoms
I could expect in the future were too dreadful to deal with and I needed time to
do that.
After the first year I slowly, tentatively made contact with
other patients and got involved in awareness campaigns. This mostly had a positive effect on me. Seeing these patients and their families cope
with the many and varied symptoms of MSA gave me hope that we would be able to
do the same.
I now have contact with many patients
who are at a more advanced stage than me.
In the ‘closed group’ discussions on facebook I get tips which will come
in handy when I have speech and swallow problems etcetera in the future. I also get to see and hear about the worst side of the disease; bladder and bowel incontinence, severe breathing problems
and death. Death, I’ve learnt, can
happen anything from 1 to 12 years after diagnosis. There is no common pattern of degeneration;
unlike me, some patients can still walk, but unlike many of them, I can still
talk.
It is easy to lose oneself in the quagmire of all these symptoms
and become depressed. The fear of losing my dignity
in the future sometimes overwhelmed me, but now that I need help with functions
like getting dressed etcetera, and have to deal with the loss of privacy, I realise
that dignity isn't necessarily what I thought it to be.
I have to aspire to a new kind of dignity; a spiritual dignity
that transcends physical dignity. As I
slowly take leave of my once graceful body, I hope and pray to acquire an
everlasting spiritual gracefulness.
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A rose after the
petals have dropped - Laurette's Photography
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As the petals of the rose are dropping to bare
the last remains of the flower, the rose hip, I’ve come realise the importance
of the fruitfulness of this inner core for the survival and continuance of the
plant as a whole.
Gal 5:22
But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness
My thanks to my dear friend Laurette for allowing me to use her beautiful photos.
http://laurettesphotography.wordpress.com/
http://laurettesphotography.yolasite.com/