Severed

S

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.

Diagnosis

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.”

Body shift

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 Patients 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

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Rachel Horne

18 comments

  • Good post. You’re reminding pwMS to be as positive as they can. To take action from where they are, not yearn for what they no longer can be.

  • “Rather we must acknowledge our own body has turned on us; wreaking havoc for no reason.”

    I never felt that way at all. It always seems to me that my body is fighting hard to mitigate damage, compensate. Perhaps against a virus.

    • One can also say the same regarding cancer. Tumorigenesis, autoimmunity as well as neurodegenegerative disease are areas of medicine that science has not yet provided a clear understanding.

    • Thanks for this… I remember feeling utterly bewildered -and trying to think what could have triggered it. Took me a while to take your route: nurture and support.

  • Most insightful, every line rings true

    I’m beginning to understand what Yoga is supposed to do
    Yog means joining or connection or unification; the word has the same root as the English word yoke

    So perhaps I should start Yoga to help ‘reunite mind and body’

    • I completely agree!
      Your contributions to the Blog Rachel are invaluable.

      ‘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.’

      I could highlight so many parts of your article that brilliantly sums up our relationship with MS. However the element that resonates with me is this sentence: I think it exquisitely sums up the reality of becoming a patient as opposed to a person. I was knocked sideways by my initial experiences of this! It is something I still find is a struggle; to live with a malfunctioning body and brain is enough in itself, but to be reduced to mere bodily functioning can add insult to injury.

      • Thanks… yes, I do find it difficult sometimes to be a hospital number. I wonder if Prof G found the same thing when he was hospitalised after the motorcycle accident last year?

  • I liked reading this. It resonated. I absolutely felt betrayal and confusion at diagnosis and on reflection I realise how incredibly disconnected I was from my own body in the years before diagnosis, just got up and ploughed on, that’s why in the earlier days post diagnosis I was so upset when ppl, including ms professionals would say ‘listen to your body’…. I felt like I didn’t know this body, or which end was up! Had I not been listening? What do you mean these symptoms aren’t actually normal or something everyone experiences? Although I don’t think I am quite where this lady had got to on her journey of acceptance, I am getting there. As a result of my diagnosis I am def more tuned in to my own body than most, perhaps a trauma behaviour, but I think more in terms of understanding what keeps me feeling good and what pushes it too far , too much exercise, or not enough, sleep, good food, stress etc….

  • The very first time when my body began acting independently was over fifty years ago.
    It was Clonus, resulting in up / down movement of one or both heels when sitting. Involuntary at the time but not now, although I can still make it happen. Felt normal then, and I only recently discovered that it is associated with MS.

    Moving on and now aged 65 with SPMS for many years and on no DMTs, I have just had a relapse, which I feel is Covid related. Worse MS symptoms, especially muscle stiffness, a month or so after the second AZ vaccine jab. Got even worse after a spell of over exertion and was diagnosed as a relapse. Thought – Is the vaccine somehow lowering the threshold for relapses so that my SPMS has become RRMS? My reaction this time is is as you suggest – confusion, disbelief and fear.

  • The very first time when my body began acting independently was over fifty years ago.
    It was Clonus, resulting in up / down movement of one or both heels when sitting. Involuntary at the time but not now, although I can still make it happen. Felt normal then, and I only recently discovered that Clonus is associated with MS.

    Moving on and now aged 65 with SPMS for many years and on no DMTs, I have just had a relapse, which I feel is Covid related. Worse MS symptoms, especially muscle stiffness, a month or so after the second AZ vaccine jab. Got even worse after a spell of over exertion and was diagnosed as a relapse. Thought – Is the vaccine somehow lowering the threshold for relapses so that my SPMS has become RRMS? My reaction this time is is as you suggest – confusion, disbelief and fear.

    • I had a pretty major relapse in May, 5 weeks after second AstraZeneca vaccine, am still trying to recover. I’ve been relapse free for the last 5 years. Makes you wonder…

    • It was a brainstem relapse, confirmed by mri, although relapse clinic originally said it wasn’t a relapse. It’s been a nightmare of a summer.

  • The very first time when my body began acting independently was over fifty years ago and was up / down movement of one or both heels when sitting. Involuntary at the time but not now, although I can still make it happen. Felt normal then, and I only recently discovered it was Clonus and is associated with MS.

    Moving on and now aged 65 with SPMS for many years and on no DMTs, I have just had a relapse, which I feel is Covid related. Worse MS symptoms, especially muscle stiffness, a month or so after the second AZ vaccine jab. Got even worse after a spell of over exertion and was diagnosed as a relapse. Thought – Is the vaccine somehow lowering the threshold for relapses so that my SPMS has become RRMS? My reaction this time is is as you suggest – confusion, disbelief and fear.

  • Honestly I thought it was nice seeing my brain. I wanted to ask my neuro if mine was “above average”, but I forgot to ask as I busy was crying

  • Great post, thank you. I was certainly bewildered but somehow heartened that my body had held up so well to the damage before the huge relapse that led to diagnosis. Moving forward has been difficult as it is a constant balancing act between staying active and not overdoing it. Dealing with unpredictable pain every day. The psychological impact has been deeper and I’m not quite there in terms of acceptance. My life has changed so much. There is alot of good in it, still, but I feel unfulfilled. No health professional is interested in this aspect of the MS journey, in my experience.

  • I was diagnosed with having an episode of MS, lasred 5yrs Ataxia , numbness, pins
    n needles whooping swoops of diziness.. Larer 2 episoded Opric Neuritis different eyes, years apart.Cannot feel my feet r95% of the time with neuropathy, coelia disease at 36, REFLEX SYMPATHETIC DYSTROPHY 37, broken bones, memory(sht term) shall i go on. Make everyday a good day in yyour mind do things that make you happy or you enjoy as small as they maybe.
    Longlasting severe stress, has it’s day.
    Lowered immunity, chickenpox, inflammation of the brain at 28, rest is history.
    Best advice ive had: keep moving
    eat like a bird not a boa constrictor

By Rachel Horne

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