Being boring

A lovely friend of mine is currently struggling with the achingly dull and deeply unnerving process of recovery.

She had her first relapse around this time last year and still feels she is dragging her way through the improvement swamp.

After the initial drama of the damage being done, the hospital admission, the steroids and the crisis management, it’s actually the recovery that proves itself to be the more testing journey.

A journey that manages to be both tedious and terrifying.

There might be noticeable leaps during the process, there might be tiny incremental steps, but at some point in every recovery comes the point at which you begin to wonder if this is it. Is this as much as I’m going to get back?

Sometimes it isn’t and your body will surprise you with a further glorious bust of repair.

But sometimes it is and that is when you have no choice but to start the process of mourning and gradual acceptance.

Every time it happens, it is like a mini death and every time it happens, you have to go through a grieving process.

And it all take SO LONG. My longest recovery (or, more accurately, where I improved enough, but not enough to be as I was before) took a year and a half.

A year and a half of hoping and waiting and watching and bargaining and being careful and declining invitations and being so bloody sensible.

With the end result of, well, what? Damaged vision, painful skin, impaired balance, cognitive mash.

As I said to my friend, the whole process reminds me of a line from the wonderful poet Philip Larkin.

In his poem Dockery and Son* he describes life as “first boredom, then fear” and it’s a line I think that could be stolen to describe the recovery process.

It takes a lot of patience and strength to wade through a recovery. It takes a lot to lie endlessly and uselessly in bed and wait, a lot to live in our own unhelpful thoughts and a lot to drag ourselves up and carry on. Living with the dreadful knowledge that sooner or later this will all happen again.

So we should remember to be proud of ourselves – even in the darkest times.

To be proud of how we make our own way through the boredom and the fear.

:: Being boring by Pet Shop Boys

*Read the full poem here. It’s wonderful.

I first fell in love with Larkin's lyrical discontent as an A-level student, but the full aching sense of loss, disappointment and regret in this poem was lost on an 18-year-old. It’s only on re-reading as an adult that it’s made me cry.

Telling stories

It's a peculiar thing this plundering of my own back pages.

This seeking out of the stories that lie in the past 13 years and searching for helpful or positive or humorous or honest threads to stitch all the pieces together.

The patchwork notion of storytelling has been on my mind a lot lately, sparked partly by the more blogs I write and partly by my current reading material.

As absolutely no one has failed to notice, we're living in turbulent times and today, on International Women's Day, strikes are being carried out in 40 countries in an attempt to highlight women's power within global economies.

This movement was kick-started with the women's march carried out in the US the day after the recent presidential inauguration.

Hundreds of thousands of women and men took to the streets, many of them brandishing placards which quote from Margaret Atwood's The Handmaid's Tale. 

Margaret Atwood is one of my absolute favourite writers – if you've never read her, you really, really should* – and the current referencing of her work has lead me back to The Handmaid's Tale.

I was re-reading it on the train home yesterday, propped up by a scrum of commuters in the less-than-fragrant rush hour carriage, when I came across this potent little sentence: “If it's only a story, it becomes less frightening.”

If you've ever read The Handmaid's Tale you'll know this is not necessarily true, but the whole notion of the 'story' and the process, power and possession of the narrative is one of the key themes of the novel.

It is also one of the key themes in our own lives – what are the stories of our selves? And, as the quote posits, if they are less than palatable, does the telling of them really make them less frightening?

Maybe. Storytelling is as old as speech itself and over time the healing power of it has become recognised in the field of narrative psychology and is a central tool in addiction and trauma recovery.

Being able to reclaim a story through painting or talking or writing is integral to rebuilding, reconstructing and recovering a sense of self.

So with this in mind, I am writing.

If my speech once slurred when I was trying to run training on alcohol misuse, if my spasms kick the cats off the bed or if my Tecfidera-induced hot flashes cause random stripping, they do at least make an entertaining mass of stories.

And they are my stories. And I am in control of the telling. 
Because in the end, as the great Margaret herself said, "A word after a word after a word is power.”

:: Telling stories by Tracy Chapman 

*At-a-glance quotes from Margaret Atwood, but really, I recommend shutting yourself away now with a blanket and one of her novels. Your soul will thank you.

The boxer

I’m celebrating Valentine's Day with a faintly embarrassing outpouring of affection, and here it is: I love my body.

There, I’ve said it. I do.

Don’t misunderstand me: I don’t stand in front of the mirror every morning and evening talking outloud to it and affirming its loveliness, I am British for goodness sake.

I’m also not saying it’s picture perfect even in the kindest of subdued lighting. But on the whole, I think it’s great.

And the reason I think it’s great, the reason I don’t hate it despite all the limitations it has or has the potential to have, is this: my body is not letting me down. A disease is letting me down.

In my mind, they are two very, very different things.

I see my body as an increasingly knackered team member that is still managing to turn out for my side.

In the words of those irritating Prescott botherers Chumbawumba, it’s got knocked down, but it gets up again.

Because even if, as the widely held theory suggests, MS is an auto-immune disease and my body is attacking itself, then I still prefer to think it’s simply a bit bewildered rather than just plain mean.

It can’t help the random spasms, it can’t help the skewed temperature sensations, it can’t help the stabbing face pain and it can’t help the thoughts-in-a-spin-cycle.

It is not my body’s fault.

And while it fails and falters, it also tries its very, very hardest to help.

So far, it’s managed to heal claw its way back from a number of pretty hefty relapses. Alright, it may never have been a 100 per cent recovery and alright, it might hold part of the damage back and unleash it again when I’m too tired/too cold/have a virus/sat in a hot bath for too long.

But generally, it’s on my side and it’s fighting very hard to stay there.

However, I am fully aware that this state of affairs is subject to change and at some point, my body is likely to stop healing quite as well as it has done to date.

There’s only a certain amount of times myelin can repair to an acceptable level before the damage really starts to hit and more significant and permanent disability develops. 

So far I have been lucky, I have repaired to a reasonable degree. Even if each relapse has left a lingering mucky footprint on my balance, pain, sensation, cognition or vision.

I don't know how much longer this ability to mostly repair will last. And honestly, it's best not to dwell.

So while it’s sometimes been on the losing side in the skirmishes, while it can’t always make me completely better, I would officially like to thank my body for repeatedly lacing up its gloves and stepping into the ring.

:: The boxer by Simon and Garfunkel

Hope of deliverance

Continuing my string of hospital visits - four in 10 days, it’s some kind of personal record – I’ve recently had an eye clinic appointment.

This one was to discuss the optic neuritis damage/recovery from my relapse in January.

I’ve hated this relapse. It’s not like I have ones I love, let’s be honest, but this one has been a truly depressing one.

Eyesight is a particularly terrifying one for me: I’m already quite short-sighted, I have posterior vitreous detachments in both eyes and there’s a family history of glaucoma. The cards do not feel stacked in my favour.

I have also failed to find an eyepatch which at once says cutting edge chic and devil-may-care. Although my lovely work colleague did buy me a red lacy boudoir-esque one which may yet come in useful if I’m ever invited to a certain kind of niche party.

The results of this one showed that in the past 10 months I’ve gone from not even being able to see the board on which the eyechart is mounted, to being able to read the third line from the bottom.

My colour vision doesn’t have quite such happy news though – I couldn’t make out any numbers on the colour blindness chart in January and it’s still a struggle to discern half of them. This I knew as I’m aware my left eye sees the world in watercolour not acrylic, but it’s still a bit sad to have it medically proven by the surprisingly old fashioned flip book.

But I’m going to remain doggedly positive as I still have the potential of two more months of recovery, having been told ON can take up to 12 months to recover, if not longer. I cling to the longer.

What astonishes me though (apart from the body’s ability to recover in the relapsing phase of MS) is the time discrepancy between the damage occurring and the subsequent recovery time.

First relapse: 30 minutes for left hand side to be knocked out, six months for recovery.

Biggest relapse: 40 minutes for speech and all motor control down right hand side to go, 16 months for recovery.

Optic neuritis: 60 minutes for vision to go, 10 months (and counting) for recovery.

I say recovery, it’s actually never been 100 per cent, but it’s been okay and to a level I can live with, but good heavens why must it take so long?

Be patient is a mantra you learn to live by when you have MS. Be patient and keep hope.

So that’s what I’m doing for my eye. I will wait and hope and wait and hope until the time shows that recovery will be incomplete. And then maybe I’ll just wait and hope a bit more.

:: Hope of deliverance by Paul McCartney

Ac-cent-tchu-ate the positive

I had an interesting chat with my MS nurse earlier this year.

I’ve had a few of these, but in this particular one we were discussing upgrading my medication.

Background: It took me 10 years to agree to drugs (although when I was first diagnosed, we were still in the watch-and-wait era) but I finally had such a doozie of a motor relapse just after I started my new job that I agreed to Avonex. Twenty months later and another relapse shows Avonex is not working, so it’s onto either Gilenya or Tecfidera. I have yet to decide which side effects I fancy.

This latest relapse took the bulk of my colour and normal vision in my left eye and, because it’s my eyes, remains my scariest relapse yet. I initially panicked then cried a bit and then bought an eyepatch, carried on working and braced myself to wait and hope for recovery – if ultimately only partial.

I thought I’d done quite well with accepting my situation, until my nurse suggested to me that I might be in denial.

Oh.

Initially I agreed – she’s the expert and would know better than me.

But then I did a bit of proper thinking about that particular relapse, and to be honest, a bit more about MS in general than I usually do. And these are my thoughts – bit jumbled but let’s try:

It’s possible there are bits of me that might still be in denial, even after all this time, but I’m not sure that’s the full picture.

Some of my response is simply wanting to appreciate the moments when I’m ‘well’ - or at least the well I’m at now rather than the well I was pre-MS almost 13 years ago.

Some of it is that I’ve just considered myself to be quite lucky with my relapses and recoveries – recovery has never been 100 per cent, but it’s been enough - so I just try my very best to remain as optimistic as possible while also being very mindful to not take those recoveries for granted.

I think when there has been the degree of recovery I’ve experienced – or maybe it would be better described as the ‘degree of recovery that I am very grateful for’ (perhaps not the same thing as an impressive medical recovery) then I don’t like to dwell too much on what might or might not happen.

And I know that bits of me will never recover but I’ve just got so used to the parts that don’t work that I’m mainly just happy with those that do.

So if this is denial, then I guess I’ll take it.

If it’s acceptance, I’ll take it.

If it’s the power of positive thinking, I’ll take it.

Although that very phrase makes my entire body want to cringe.

:: Ac-cent-tchu-ate the positive by Bing Crosby