Cast your mind back…
Can you remember the very first time when your body began acting independently?
Was it an unexpected stumble, a bout of double vision that mysteriously came and went or a spell of numbness?
And your reaction? Confusion, disbelief or even fear?
Pre-illness, we take our bodies for granted. As healthy adults we move through the day, confident our body will simply “follow” our lead. We sit down and don’t doubt we will stand up. We reach for a spoon and know we will grasp it.
As the philosopher Havi Carel writes in the Phenomenology of Illness: “The fundamental bodily experience of health is one of harmony, control and predictability.”
And when it comes to the unity of body and mind – with the mind firmly in control – we accept it without hesitation. Why shouldn’t we?
Then we begin to (unknowingly) experience symptoms of multiple sclerosis (MS) – fatigue, numbness, tingling, limb weakness, balance and bladder problems – and that relationship begins to split.
This is reinforced when we go to the doctor who invites us to view our body as a separate entity. What was our first symptom, they ask? Which part of our body was affected? Show me where…
Next, we undergo a series of diagnostic tests: blood is taken from our arm; fluid is extracted from our backbone and images of our brain and spine are taken in the MRI scanner.
Very swiftly we learn only our bodily presence is required during these investigations. No one is interested in our lived self – just our (malfunctioning) body.
Then comes the diagnosis of MS. Our immune system, we are told, has mistakenly been attacking our nerve coverings – causing scarring or lesions – which may lead to serious disability.
To illustrate, we are invited to view the MRI images of our central nervous system. For a small group, seeing these lesions brings relief: proof the puzzling bodily sensations they have been experiencing was not “in their minds” – but due to a bona fide disease.
But for the vast majority of us, looking at these images – especially of the brain riddled with damage – is devastating. After all, as the eminent neuro-philosopher Patricia Churchland points out, the brain is the very essence of our self, our personality, our mind.
“It was a complete out of body experience. Surreal denial was my initial response,” says Kristina Penny, who is 39 and has relapse-remitting MS.
What makes it more difficult to accept is learning the destruction has come from within. We can’t point the finger at an accident or a traumatic injury. Rather we must acknowledge our own body has turned on us; wreaking havoc for no reason.
And considering most people diagnosed with MS are young, healthy adults – this is a particularly bitter pill to swallow. “I still don’t really believe it’s true,” says Damon Aggersberg, who was recently told he had MS. “I treated my body pretty well for most of its life. It feels like it’s betrayed me.”
After returning home we quickly realise the biomedical description of MS captures little, if any, of the experience of living with an unpredictable, unreliable body.
For many, it becomes an insistent presence in our everyday life. “Against the background of bodily uncertainty… a person with MS may find herself almost always in a mode of permanent bodily alertness,” writes academic Hanneke van der Meide.
We monitor it relentlessly: constantly checking our energy levels while also regularly scanning for any new sensations – fearful they might herald a relapse or a worsening in our condition.
Some also, hardly surprisingly, come to view their body negatively – seeing it as “an oppositional force which curtails activities, thwarts plans and projects, and disrupts our involvements with the surrounding world,” as the philosopher SK Toombs writes in The Body in Multiple Sclerosis: A Patient’s Perspective.
Discovering “I can” must now be replaced with “I might be able to” or even “I can’t” – thanks to our MS body is a brutal blow.
In an attempt to soften this, many of us resort to metaphors. Toombs refers to her MS as “an alien.” Theresa Wright-Johnson, an MS advocate, calls it an “uninvited guest” while the author Nancy
Mairs felt she was being “haunted by a mean-spirited and capricious ghost” who tripped her and knocked a glass of water out of her hands.
That said, it’s important to understand the relationship with our MS body does not have to remain static. Over time, many of us find ways to reconnect with our body. Some find therapies like mindfulness, dance and yoga, which aim to unite the mind and body, to be helpful.
Others embark on new challenges such as learning how to sail with the charity Oceans of Hope or take up a new sport like wheelchair rugby which Mark Webb, who has advanced MS, has done.
“While I accept my MS is very likely to keep progressing, I’ll just keep adapting,” said Webb, who is 52. “I’ll keep celebrating little wins and milestones.”
Then there are the rest of us who, as time passes, adjust to their changed body – and even learn to embrace it. I know I have.
I am not always happy with it (I miss spontaneity vs always planning), but I have come to “re-appreciate” it. I pay more attention to it – and listen to it – and I find my bodily victories are that much sweeter. Plus, it’s the only one I have.
Rachel Horne, London