The Kingdom Of The Sick

My friend and author of the following piece has kindly allowed me to reproduce it on my blog. I asked if I may as this is one of the most well-written and powerful pieces I have read with regards to having Multiple Sclerosis.

It was originally published on 14.7.2020 here: https://multiple-sclerosis-research.org/2020/07/the-kingdom-of-the-sick/

By Rachel Horne

For all of us with multiple sclerosis, our story is the same. 

One day we got sick and we never got better.

Instead we were plunged into the strange hinterland of chronic illness – located between a headache and terminal cancer – where our disease won’t kill us, but it will never go away; where we will undergo treatments, but never a cure – and where we will always be a patient. 

In her seminal essay Illness as Metaphor, Susan Sontag describes this transition. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick…  sooner or later each of us is obliged… to identify ourselves as citizens of that other place.” 

The writer Nancy Mairs, who had MS for more than 40 years, is more succinct, calling it in her book Waist-High in the World – “a country to which no one travels willingly.” 

It is a crossing more of us are taking. Dramatic improvements in public health and the widespread use of antibiotics and vaccinations have meant fewer people are dying younger  (data from ONS) – which means more of us are living longer with chronic, life-altering diseases such as MS. 

And our MS lives are better and more ‘normal’ than ever before – thanks to earlier diagnoses and a host of effective disease-modifying treatments. We stay in careers, have children and raise families. Remember it wasn’t so long ago young women with MS were emphatically told not to have children as it would cause greater disability. Now we know this is not true (Dobson et al. BMJ 2019).

Yet one could argue the experience of living with a permanent illness is poorly understood and little discussed. It has even been neglected by philosophers due to its “unwelcome and demanding” nature, writes UK philosopher Havi Carel in the Phenomenology of Illness. This, she believes, should be rectified as the study of  illness sheds light on ethics, political philosophy, and human experience.

So what is the experience of permanent illness like?

Physical and mental

For one thing, the mental part can be just as difficult as the physical. People with MS not only endure a raft of bodily symptoms, but also mental ones that remain long after the disease has been controlled. 

“In cases of illnesses such as MS, patients must live a lifetime of uncertainty, anticipating what may or may not come next – a state called ‘limbo state’ loss,” says Mila Tecala, a grief and loss counsellor in Washington DC. “And most people don’t handle the limbo state loss well for a long time.” 

Having MS also dramatically increases the risk of depression, according to the American Academy of Neurology. Part of this extra risk comes from MS damaging nerves in the brain, and part comes from the experience of living with a complex disease. 

Relationships

Relationships change. With MS you are likely to take time off work, cancel arrangements at the last minute and be overwhelmed with symptoms like fatigue – which makes it impossible to be the same employee, friend, partner and parent you used to be. Some relationships end while some become stronger – as you find your true support network.

But, it’s the relationship with yourself that undergoes the greatest shift. Suddenly you are confronted with an image of yourself that no longer exists, while long-held goals and plans are overturned. Gradually a ‘new’ version of you emerges – but that takes time.

Doubt

The rules change when you are diagnosed with a life-long illness. You become, as the Canadian sociologist Erving Goffman wrote, stigmatised – an outsider in the world of the healthy: an object of pity, fascination and even doubt. 

“To be ill is to be suspect,” says Katie Willard Virant, a psychotherapist in Missouri. “What did you do you cause your illness? What aren’t you doing to cure it?”

For example, how many times have you been told with MS “But you look so well!”? At its best, this statement is dismissive of the myriad of symptoms you may be experiencing inside – the pain, the fatigue, the vertigo. At its worst, it implies you are not actually ill, because you don’t look it – ie no wheelchair.

This chimes with Barbara Stensland, the MS blogger and author of Stumbling in Flats. After her MS diagnosis, she was surprised and hurt by the reaction of the parents on her son’s rugby team. Despite being a single mother and struggling with bone-crushing fatigue, dodgy balance and wonky hands, no one asked if she wanted help. 

By comparison, another mother was diagnosed with breast cancer at the same time and was overwhelmed with support. Stensland’s conclusion: “There is an illness hierarchy and MS languishes somewhere near the bottom.”

Advice

We discover people are keen to give us advice on how to heal our disease. Over the years I have been urged to try yoga, acupuncture, positive thinking, a diet free from (fill in the latest fad) through to a faecal transplant as a way to fix my MS.

When I reply that MS is an incredibly complicated disease (the word ‘multiple’ is apt in more ways than one), and I am happy with my neurologist’s treatment plan, some become quite insistent they are right. So please – no more unsolicited advice. Which leads me to… 

Support

Having a chronic disease like MS can be very lonely. While those around you try their best, it is so valuable to connect with fellow MSers who intimately know what it is like to be permanently sick. They will also answer questions, connect you with other resources – and provide you with a safe stigma-free space.

Living with a chronic illness does make every day more difficult. Sontag aptly described it as “a more onerous citizenship.” And given the chance, I would return to the kingdom of the well – a place I happily resided in for 43 years – in a heartbeat. But that likely will not happen. So instead I take each day as it comes – and appreciate it all the more. 

Rachel Horne is a journalist who has MS

It Is My Cargo

I wanted to hate it and I am told that I should hate it. Hate it like one hates a sworn enemy, that I must fight it and that a true fighter calls themselves a warrior. However, I do not hate it and I am certainly not a warrior. Truth be told, I always feel much closer to a devout coward than any sort of warrior.

Hating it and fighting it consume so much of the energy that I ought to conserve to manage my life, and who wants to live life on a permanent war footing anyway? That must be tiring and living is tiring enough; I am idle and lazy, and am not getting any younger so where is the fun in that?

If it is a war, it is an unwinnable one. Given that we often work so hard to deny the inevitable endpoint by avoiding the topic of the hard stop faced by all of us, we end up skirting the unwinnable part of any war on It.  But the journey always ends, for everyone. That is the only certainty. That and taxes. However bumpy the journey and whatever the cargo we carryif it is treated as a series of skirmishes and not a grand battle (the kind that needs a warrior) then it becomes far more manageable and far less tiring.

Reverting to the topic of youth for a moment longer, there are benefits in getting older and it is worth noting that when skirmishing with it, youth and enthusiasm are rarely as effective as age and guile. It is the application of cunning and intelligence, combined with a good dose of backstabbing and trickery, both tactics of age, that are more effective and can be a great deal more satisfying at times.

To manage it effectively one must first understand the classic ‘How do you eat an elephant?’ conundrum. You cannot do this in one sitting. Instead, you must cut it into bite-size pieces. And (to stretch the metaphor we’ll make it an everlasting elephant), in order to keep things interesting, you must learn to make a variety of dishes. Some are grand efforts and others are best served to the dog. That is the way of things and the way of life. Whatever additional or different wrinkles get added to your life, the tactics remain the same. Deal with it piece by piece. Long-term plans are for fools. Ask anyone who has tried.

The additional cargo can also be viewed as interesting, because it is. It grants us a journey that stands out from the other boring and regular ones that most of our fellow travellers have. It requires a special understanding, a greater level of engagement. And, if you do engage and do not look away then it makes a better person out of you, it sharpens you. It does not dull you.  It may be a biological bully of an enemy, but it is the type of enemy that I want to keep closer than any friend.

I want to know its strengths, its plans, and I really want to know its weak points. We will not stand off against one another posturing on a battlefield of prejudice and misunderstanding. I will speak sweetly to it, wrap my arms around it and bring it in close whilst making soothing sounds. Then I will hit it hard, where it hurts the most and where It is weakest. It is a bully and a they are never swayed by verbal bluster, they are defeated with by your actions, your lack of fear. Even if, underneath, you are petrified. Soon you become less afraid and that is liberating.

My actions will bend it to my will. I will poison it with the most potent elixirs that science can find, and I will adjust my life to hurt it and hinder it at every turn. This is not a one-time event; this is an ongoing series of skirmishes. I may not win them but if I can hold it to a score-draw then I will take that.

After all, the journey ends the same way for all of us, despite the different and interesting cargoes we carry. I intend to enjoy the rest of my journey. It is not all about the cargo. The journey through life itself is a many splendored thing that I can shape to my will. If I do not, then it will become heavier and heavier and I will see and feel nothing but my cargo: and I will have lost.

Dominic Shadbolt May 2020

The Centurion

So it’s my one hundredth post and I feel that I ought to go above and beyond to delight your eyes and tickle your neurons.  Am not sure if length compensates for quality, but here goes nothing…

This post will look back over the last year or so and may even cast an eye to the future. Mostly though it’s going to be a fun if slightly rambling ticklist of what has happened and what I have learned, about myself and others.

Let’s start with the big stuff then. On Boxing Day 2011 we took the very difficult decision to get divorced after fourteen years of marriage. Having eloped and gotten married three weeks after meeting I figured we had done pretty well considering. Our biggest surprise was at how shocked others were.   The one ginourmous issue was our daughter and making it ok for her. As we weren’t fighting terribly it wasn’t the down tools and storm out with loads of screaming and shouting scenario so we tried very hard to go about it like grown-ups and included H in almost all of the discussions and very patiently and carefully explained it all to her, because we felt it was much better to be open, honest and to be seen to be acting cooperatively rather than adversarially. So far she appears contented with the fact that we are happier not being married, which is better for her as well. I like the fact we do the odd meal and movie together as a family.

As an aside; I am baffled at how others could even consider using their kids as a weapon to wield against the other person. That is just inexcusable selfishness.  Despite our differences I know that L is a great Mum and is a thoroughly decent person. H knows we both love her, we live close to one another and she is always welcome at whatever house she chooses. She is approaching teenagedom so it’ll get more interesting I am sure. I was a ghastly know-it-all. Gulp.

Until the decision to divorce I had been a stay at home dad for the previous four years so essential to effect the divorce was for me to go back to work. It took a a few months but I landed a decent job as a – get this for a mouthful – Global Strategic Account Manager in the publishing industry. This started in June ’12. It was hard fought for but I won it and was given a decent salary. Result. Oh, and by the way, I was a publishing industry outsider which was the alleged reason why I was hired. Fresh eyes, new approach, we need to turn around a decline etc etc… Ha.

Paddy Wagon

Look Ma, no gears!

Having have had v. mild MS for the last 20 odd years I am fortunate enough to still be very physically able and am still a bit gullible when silly challenges are suggested. I agreed, with a mate, to enter a 24h, 240 mile (386km for you metric folks) cycle ride from London to Brussels. After all, who wouldn’t see this as a way of raising money for the local MS research team? Oh yeah, we decided to do it on single speed, fixed gear bicycles ‘cos who doesn’t like to up their game by making it a little harder? Uphill? Cowboy up cupcake and pedal harder. Downhill? Relax Grasshopper and spin.

Climbing took a back seat, as did other stuff and I upped my swimming for the cardiovascular benefits, got a proper bike fit and started entering events and training hard. I recall May 27th 2012 being a quite lovely morning. I woke early and as I had an hour or two before the day started proper I went for a ride to make this my first 200 mile week on my fixie. Wham, threw away banana skin (stop laughing) and unsettled myself so much I hit the floor. Hard enough to crush my helmet, shatter my right collarbone and snap my right femur just below the head. I have covered this before but 3 ambulances and 6h of surgery later I was not a well chappie.

Tecfidera Product Shot

Tecfidera (BG-12)

My other big MS news is to do with drugs. I have been on a two-year trial and am one year into the follow-up of an oral MS drug. It turns out that it is the hot new thing and had just been approved in the US (approval by the FDA is the big hurdle in drug development). Catchy name as well. Tecfidera just rolls off the tongue. Still, it’s better than Dimethyl Fumerate I suppose. Additionally, it beats the bejesus out of injecting daily. That was no fun carrying around all the paraphernalia.

Me and my beloved daughter

I got out of hospital after just a week (sheer bloody-mindedness is a powerful thing and being in hospital is really crap) and pushed very hard to start my great new job as it was all part of the “gain economic independence so we could get divorced” masterplan. I was v scared that it would all end in disaster but I didn’t really appreciate just how badly I had banged myself up. Life loves it’s little curve balls though and disaster duly struck! I lost the job after only 2.5 months. Pushed or made redundant? All I can remember is that it was a combination of circumstances, but I certainly didn’t help myself by being very drugged, to the point where I had started to perceive my perma-stoned state as normality. BEWARE long-term opiates. It is v insidious the way in which your reality is altered, firstly with big hits of pharmaceutical grade heroin – much needed roadside and post-operative relief – and then I was tapered onto seemingly harmless Co-codamol tabs. They worked magnificently well as pain control but whilst taking them I was a sleepwalker in my own life and it took quite a while for the after-effects to go. Knowing what I know now I’d go for the pain every time. On the bright side I made some interesting new friends.

2012-10-02 13.18.28

The Spitfire – loads of gears.

Another bike was required but with gears and somehow I came to own a Spin Spitfire, which is c 7.5 kg of titanium awesomeness.  A minor hitch is that after the big injuries have abated a bit the smaller niggly stuff is here. My right ankle is still so messed up and I can’t ride this thing of beauty. Still, with the shit winter we have had it is a blessing in disguise. If it had a bell it would sound like “Bllliiiinnnggggg Bllliiiinnnggggg” !

Freshly unemployed I was really feeling at a loss but also felt like I was at a significant juncture in my life, and shouldn’t waste it. On my bucket list has been to earn a degree. Not really to do something with, as that’s a bit late now, but just to do one. I know I am bright but it would be putting my money where my mouth is. Long story short I have been offered a place to read history at Ruskin  College in Oxford. I have been told that saying “Oxford” is tantamount to “passing off” and it isn’t part of the university proper, although  I’m not that bothered as it is better than going to an ex-poly. It is sort of kind of as there are interrelationships with some parts of “proper Oxford”. Most importantly is that I know I should do it and, short of being offered an awesome job (that is one that is better than just being well remunerated but is actually interesting, with interesting people), I shall.

A history degree from Ruskin. How cool is that? I don’t care if it is from one of the newest colleges. Besides, as an Oxford student an entire years swimming at the groovy Rosenblatt Pool is just £80. That alone is a great incentive.

pool

A great place to unwind.

2013-03-23 15.29.32

Thing of beauty.

The other bucket-list item I ticked off was getting a 911. It is not as whimsical as it sounds as it has been the only car that has captured my attention ever since I was a kid and, without being too melodramatic, I reckon the MS will get me at some point so before I toddle off to Switzerland I need to know I have had one, once. So I decided to get a decent one that had been well loved and wasn’t going to do its brains in depreciation. It costs less to insure than the massive estate car (station wagon for you dang foreigners) I was driving around in. It requires a steady diet of premium petrol (that’s gas for you dang…) and tyres so I expect to be buying shares in the oil & rubber companies to mitigate the expense.

Who knows what the future holds. I have a good feeling though as I think all sorts of previously unforeseen avenues will show themselves. I am grateful to be here and happy and surprised at the way things seem to be turning out for the better. However, before I get too contented I must never forget that life is a cruel mistress and is probably just waiting for the right moment to bugger things up again.

If there is a lesson then it is only for me, as it smacks of a kind of arrogance to start telling others what to do just because that’s what worked for you. However, it seems to be the formula for many a lucrative line in self-help books so perhaps I am missing out.

My only advice would be the following; Illegitimi non Carborundum which translates as Don’t Let The Bastards Grind You Down.