About a week after arriving at Medi Clinic, I was sitting
and painting on fabric, lost in my own world of thoughts when Dr Fanie came and
sat on the bed next to me. I had been so
lost in my thoughts that I was quite shocked to suddenly find a doctor, not
standing by my bed, but sitting on my bed. He put his arm around me.
“I don’t
know how to tell you this. We have your
results back”, he said.
“Just say
it like it is, Dr Fanie”.
“You are
fucked!” he said, giving me another squeeze.
“Really
fucked?”
“Really
fucked! Mada (Dr Ferreira) sent all your
blood work to the Pretoria Research Lab, but I don’t understand enough about
it, so she is coming to see you and will explain it all to you”.
“Is there
a cure?” I asked.
“No, you
got this for life. You are clinically
ill”, he said, giving me yet another squeeze around my shoulders.
When he left, I sat there thinking about what he had
said. At least I was not mental, insane,
faking, lying or a drug addict. There
was some comfort in that. I thought
about asking him for a letter to give to my family and then again, that
stubborn part of me thought, ‘Fuck them!’
About a half hour later, Dr Ferreira arrived, pulled up a
chair and sat down next to my bed. She
also started with the same words.
“I don’t
know how to tell you this, Dianne”.
“You can
say it like it is Dr Mada. Dr Fanie has
already told me I am fucked”, I replied.
“Ja, jy is
‘n bietjie gefok”, she said. She leaned
over and showed me a wad of papers with all kinds of blood results, most of
which made absolutely no sense to me.
“You have Primary Mannin Binding Lectin Deficiency and Secondary Humeral
Deficiency”, she said.
“How do
you spell those things?” I asked. I
could not even repeat them, let alone spell them. Words like these can now roll off my tongue
as though I am a specialist haematologist, surprising doctors and nurses no
end. I wrote them down as she spelt
them for me. “What exactly does that
all mean”, I asked.
“Well, it
means that you have a serious immune deficiency and you are susceptible to
every infection that goes around.
Because these are primary and secondary, it means that there is no way
that we can boost your immune system.
You may have inherited this condition, but we are not sure. You don’t have the building blocks for the
immune system” she explained.
“Is there
a cure?” I asked again. I was forever chasing the pot of gold at the end of the rainbow. I just could not accept a 'no cure' verdict.
She shook
her head. “I am sorry. There is no
cure. You will have to be treated with
Polygam every two weeks for the rest of your life, and you will have to have
prophylactic antibiotics. This will not
cure you, but it will extend your life.
I am sorry”, she said, putting her hand onto mine and giving it a
squeeze.
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