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Friday essay: single parenting with a disability - how my 9-year-old daughter became my carer in shining armour

Hussein, S ( 2022-03-18)

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.