My mum was diagnosed with Primary Progressive Multiple Sclerosis (MS) back in October 2007. The NHS website describes MS as “a condition which can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.”
What it doesn’t reference is the humiliating degradation of the sufferer’s abilities: their loss of continence, eyesight, and the ability to care for themselves. What I should note here is that no two cases of MS are the same, my mum is likely at the very extreme end, and her particular type of MS, primary-progressive is the hardest to treat and manage. If you or a loved one is newly diagnosed with the condition, the MS Society have an excellent website with some wonderful forums for further support and information, and this blog might not be the thing you need to read right now.
At the time of my mum’s diagnosis, the symptoms affected her eyesight and her hand-eye coordination only. Apart from giving up driving and needing some assistance with fine motor skills, like handwriting, she was fully functioning. Fast forward ten years and my family have witnessed a slow, painful and heart-breaking decline to a point where my mum is asleep for most of the day, cannot walk, stand or speak and is entirely dependent on others for her care. Of all of this, the thing I struggle most with is her inability to speak. I long so much to have a conversation with her that it physically hurts sometimes; to tell her that I ended up working in the sector I have always wanted to, and that after a few years of moving around South London post-uni, I have finally found somewhere safe and secure to rent. Most importantly, I miss her response; I miss her advice, her questioning and her encouragement to keep going.
Like everyone else, I have problems going on in life, but these feel like the problems that only a mother’s advice will solve – relationship problems, mental health problems and the like. I never understood how much I needed her input and guidance until it was gone.
My mum is very much still here; she lives in the front room of my childhood home and my stepdad is her main carer who does a fantastic job of making sure she is well looked after, alongside the healthcare professionals. But it doesn’t change that sense of loss; my mum was a battle to be reckoned with when she was well. She was the type of person who could walk into a room and immediately be the centre of attention, she was outgoing and brave and not scared of voicing her opinion. When it came to me and my sister, she could be like a brave lioness protecting her cubs. Obviously there is a flip-side to that too; she could be argumentative and stubborn as hell, meaning home could be a battlefield sometimes. But from all that to complete silence, to being asleep all the time, to needing carers five times a day and to needing to be tube-fed, the loss is staggering.
And what’s worse is that she can’t even tell us how she feels.