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https://theconversation.com/friday-essay-single-parenting-with-a-disability-how-my-9-year-old-daughter-became-my-carer-in-shining-armour-176013>
"My daughter started to describe me as
disabled long before I was ready to do
so myself. For several years after my diagnosis with remitting-relapsing
multiple sclerosis, the most I was prepared to concede was that I had “a
potentially disabling disease”, and having endured years of misdiagnosis and
uncertainty, I wasn’t entirely confident that even this much was true.
Perhaps the neurologist who had dismissed the right-sided weakness that
rendered me unable to walk without support as “a psychiatric issue” would turn
out to have been right after all, notwithstanding the MRI that had revealed
lesions scattered across my brain, or the lumbar puncture that had detected
inflation in my cerebrospinal fluid.
Anyway, even if I did have MS, I was undergoing treatment that would hopefully
hold it in check. I was sometimes temporarily disabled, I might be permanently
disabled at some undefined point in the future, I was self-injecting my
prescribed medication on a daily basis in order to ward off disability. But I
was not actually disabled – not yet.
Adalya didn’t see the need for this type of tiptoeing around. “I’m sick of the
soft, caring voices,” she complained as our lives were flooded with healthcare
professionals, support workers and counsellors in the wake of The Diagnosis,
but she understood their basic message clearly enough. Her mother was
disabled and she was a nine-year-old
young carer. For which, read:
guardian, defender, bodyguard."
Cheers,
*** Xanni ***
--
mailto:xanni@xanadu.net Andrew Pam
http://xanadu.com.au/ Chief Scientist, Xanadu
https://glasswings.com.au/ Partner, Glass Wings
https://sericyb.com.au/ Manager, Serious Cybernetics
