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Ruminations with Rumi…

I feel like I’ve been fighting my whole life. There is a war that rages between my physical deterioration and my mental or emotional strength. The weapons used are cruel, there is little respite and the stakes are fricken enormous.

Rumi referred to emotions – all kinds of emotion – as “unexpected visitors”. Rumi thought we should let these callers in and let them visit with us for a while. Give them a cup of tea and get to know them type thing. This concept from the 13th century passed the stiff upper lipped British by. Why do we feel the need to be restrained and remain resolutely defiant when an emotion comes calling?

Rumi writes beautifully. Well, the way he has been translated from Persian to English is beautifully done anyway. I’ve only relatively recently been introduced to his writings and they resonate with me pretty deeply. I read all sorts for all sorts of reasons.

I read because I desire to understand. I read because I want to learn. I read because I need to get lost in a world that isn’t mine. I read because I long to escape. I read because I must. I read because I can. For now, reading is an ability that has escaped the tortures of my mind and body. Reading takes it all away. It’s my shelter and my comfort. It reaches into my soul and makes it laugh, makes it think, makes it feel invincible and makes it forget. Reading nourishes me. Language fascinates me. Evolving language, at once, gives me joy and makes me long for the days when Mr. Marshall taught me that “focussed” has a double s!

When I hear someone describing reading as boring, I can only think it’s because they haven’t found the right book yet. Going back to Mr. Marshall for a minute (he was one of my English teachers at school), he always said there was no such thing as a boring activity only boring people. I’ve turned that over in my mind a lot over the years between him first saying it (he said it a lot) when I was 14 and now when I’m 46. I came to the conclusion a few years ago, that what he was trying to say is that everyone is different and will feel differently about every activity, be it reading, playing football, singing…whatever. That means the activity in itself cannot be described as boring. Boring people, however, are those that choose not to engage in any activity at all. That’s what I think he meant. He’s dead now though, so I can’t ask him. I wish I had at the time. But, well, if wishes were horses, beggars would ride.

Anyway, I’ve digressed. I do that a lot. So, why do we find it so difficult to sit with our own emotions and acknowledge that we have them? Are we conditioned to believe that we should only feel positive emotions? Are we only allowed to feel happy, excited, thrilled, delighted, amused, loved, loving? Why do we feel its ok to acknowledge that we feel angry about something but not that we feel hurt by it? Why do we feel it is a weakness to be able to show vulnerability, but at the same time not be shocked when we get hurt? Why do we see it as inevitable that if we display an emotion that is not perceived as socially acceptable that we will somehow be thought of as a lesser person? Who decides what is socially acceptable??

My experience of showing emotion has not always been positive. I didn’t show my true feelings for years after I was told that my tears were pathetic and weren’t going to be put up with. I was 15. In order to swallow down the emotions I felt (& god knows at 15 I felt them ALL), I built some bloody fantastic walls. My grandad, a builder, would have been mighty proud of my structures. The wolves were not going to huff and puff and blow my house down! My house. There was no door. There didn’t need to be. I wasn’t coming out and you weren’t getting in. Simple. I was described as having ice water running through my veins. Apparently, it was discussed at length by people other than me, that I felt nothing. I felt baffled by this. If I showed that I was upset or hurt or confused or in pain then that was wrong, but if I showed nothing at all then that’s wrong too?

As a consequence of this inner conflict, when my emotions burst out of me as they are want to do, they were generally inappropriate. I couldn’t control them. I tried to channel them in the various sports I engaged in, although I didn’t know at the time that’s what I was doing. I was young, I was scared and I felt alone. So, I stuck everything in my solid house, climbed out the one window and tried to live a life that wasn’t full of anger and frustration. And I did.

I’ve had many, many wonderful adventures in my life. I’ve seen a lot of things others can only dream about. I’ve done a lot of things that others can only wonder about. My memory bank is full to brimming with wonderous colours, sights, sounds, people, noises, feelings, music and laughter. The flora and fauna of many a country are stored away to be brought out in writings or in musings or just to give a little colour to my day. All of this is juxtaposed with my house.

It’s only been in the last 10 years or so, that the window to my house has been cracked open. There is still no door. So if you want in, you have to really WANT it. One of Rumi’s most famous quotes is “the wound is the place where the Light enters you”. I liken that to the cracking open of that window and allowing someone other than me have a bit of a wander around. It surprises me to this day how hard I find it to let people into my life. This blog helps me immensely in my journey toward sorting through my house and throwing out old rubbish. I know now and acknowledge that I’ve been suffering from depression for most of my adult life. Acknowledging that was probably the hardest thing I’ve ever done, but liberating at the same time. For a few years, it was only me and my GP who knew. (When I think about this, it isn’t so. I suspect a lot of people knew that I was suffering, but god forbid they suggested it to me.) When I decided to go public, it was done so casually that when I think about it now it makes me giggle. I would just drop it into conversations. As an adult, I’m better at knowing when it is and is not appropriate to do certain things. So while I would throw out this comment about “my depression” it was always in the right place in the conversation. It had to be.

So, my mental state is on one side and the deterioration of my physical packaging is on the other. The MS diagnosis is still fresh and raw and I struggle every day to find positives in it. At the moment, most days, I don’t see any bright side at all. Well, other than the one that lets me say “it could be worse”. I was at the hospital a few days ago and tried to get answers to the muscle weakness, the internal inferno, the other changes that are happening to my body. There are none. No-one can tell me if the weakness is a relapse. They think it probably isn’t, but they can’t be certain. No-one can tell me if the weakness is the beginning of my MS getting worse. Right now, there is nothing to be done. There is nothing that can be done. Although I feel the time is right to start saving hard for whatever future is ahead and what kind of walking aid I may need. I contemplated building an extension to my metaphorical house. I decided not to. I can’t always articulate my feelings, but I no longer want to bury them. Mainly because I simply can’t be bothered anymore. Its hard work pretending to feel something that you don’t and it’s even more exhausting trying to deny a feeling that is pervading every cell in my body.

So, I know to expect my depression to be with me. I know that the medication I take for it allows me to deal with it, in the main. I know that the medication doesn’t make the depression go away, but it does give me a bit more of myself (if that makes sense) to be able to cope. I also know that, for me, I have to sit with it alone for a while so I can process it enough to share it. I’ve learned there are no hard and fast rules when it comes to dealing with depression. I know that what works for me, won’t work for everyone. I know that just because I’m willing to share my story, doesn’t mean that everyone wants to hear it. That’s ok. That’s actually how it should be. We aren’t all wired the same way. We aren’t all moved by the same things and we aren’t all disgusted by the same things.

Thank goodness!

So back to the words of Rumi…my body may seem meek, but my spirit does somersaults in the sky! At least it will when depression has finished it’s cup of tea and it’s visit is over.

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What’s the difference?

I’ve always tried to be open and honest about my epilepsy and how it affects me and therefore, potentially you. There are several reasons for this, the main one I admit is for a selfish reason – it is better for me if you know that I have epilepsy and so if you see me having a seizure you are less likely to panic as you know its “normal” for me. Secondly, I always offer to talk about the disease, the effect it has on me, my family and my friends; this, I believe, helps to raise awareness and go some way toward dispelling the stigma that unfortunately still surrounds the disease. I’ve talked about my own experience with stigma before (Epilepsy and Stigma…) so I won’t labour the points here, but it saddens me that it is still something that we have to cope with along with everything else. I also, selfishly again, like people to know that a diagnosis of epilepsy doesn’t have to be the end of the world. Although, I admit, sometimes it can feel that way.

Often, one of the first pieces of information a newly-diagnosed epileptic (yes, I know that in this modern world “epileptic” is a label that we shouldn’t use, but as far as I’m concerned I am epileptic, in the same way, that I am brunette and that I am green-eyed. It’s a descriptor in my book and not a bad word) is given, is a list of the things they can no longer do. Driving, swimming, diving, etc. Few, in my experience anyway, are given a list of things they can do. I like to believe that this is because the list of cans far far outweighs the list of can’ts. Even then, what we are told we can’t do is often a slight misnomer. For example. I was told I couldn’t swim anymore. I virtually lived in the pool. I swam every day for my club, I also was a regular high board diver. Being told that I could no longer go to the pool was devastating to me. And, it wasn’t true. I emphasise here, that there are many people who suffer far worse than me from their seizures and for them, perhaps, it isn’t safe. What I wasn’t told, was that providing I was accompanied by someone who knew of my condition and how to help me and that I informed the lifeguards on duty, then there was no reason why I couldn’t continue to swim. I did lose my driving licence and I’ve never been able to get it back. This is because my seizures can be unpredictable and while I have gone the required 12 months (it used to be 24) and so I could apply to have it reinstated, it would not happen as I can’t demonstrate that I am controlled and my GP would not sign it off. I think I miss the freedom that being able to drive would bring on so many levels, however, I balance this with the knowledge that I will never cause an accident through having a fit at the wheel and so potentially ruin another life.

Telling people I have epilepsy usually elicits two responses. The first, the most common, is that there is simply no acknowledgement of the information. That’s totally fine with me. I recognise that while I’m comfortable talking about it, others perhaps aren’t and for a myriad of reasons. The second response, is generally, “thanks for telling me that, it’s useful to know. Perhaps you can tell me about it?” Yet, what I only very occasionally hear, is “I have a friend with epilepsy” or “my xx has epilepsy”. In the 20 years or so that I’ve been extremely open about my disease, I can count on one hand the number of times that response has come. My experience sharing my MS diagnosis has been vastly different.

Telling people I have been diagnosed with MS has been a completely different kettle of fish, to announcing I have epilepsy. Firstly, it took so long to get a diagnosis, that I couldn’t tell people what was wrong, all I could give them was a range of afflictions of varying severity that it could be. The medical debate as to whether my optic nerve issues are MS or something else still rages on, but for the purposes of this post (and my mental well-being) let us pretend that it’s all MS related.

The initial similarities between the reaction to the MS diagnosis and the one for Epilepsy are actually pretty similar. Although, I guess that’s not really much of a surprise. Shock, terror, panic, tears etc were all present on both occasions in the early months following diagnosis. My lack of knowledge about both diseases was a factor. Epilepsy when I was 17 simply wasn’t discussed, I didn’t have Google (this was 1988 people) and I dealt with everything by internalising it. If I didn’t acknowledge it, it wasn’t happening. The classic, as my brother often describes it, sticking your head in the sand and hence leaving your ass exposed. I knew nothing at all about epilepsy and my knowledge of MS started and ended with horror stories, Jacqueline du Pre’s death springs to mind as being the only real story I knew of where MS was the destruction of her career and life. She was younger than I am now when she died. The only other exposure I had to MS was hearing about other tragic stories in the media. So my complete lack of any factual knowledge of either disease was total. As an adult, I think that I dealt with my MS diagnosis in a bit more of a mature way. At 17 I didn’t know what to ask and of who. Being as I’d basically shut down, then chances are I wasn’t going to ask anyway, but perhaps if I’d been pointed in the direction of a support group, then it may have changed things for me. Who knows? At 45, I asked questions. Sometimes, I didn’t get answers, sometimes I didn’t want to hear the answers, but ultimately, I had/have to face up to the facts as they present themselves.

When I did start to tell people I had MS, it usually elicits two responses. The first is along the lines of “oh shit” or “chr*st” or words to that effect. These responders are generally the ones that had the same negative exposure to MS that I’d had. The other typical response was a complete surprise to me. It’s along the lines of “my xx has MS” or “I have MS too” or “I know a couple of people with MS”. I did not expect this. Perhaps I was vain to think I was the only one!! It’s estimated that about 100,000 people have MS in the UK in 2016, while the figure for epilepsy is 500,000. It’s mainly for that reason that I was so surprised just how many people who I know and see regularly, have firsthand experience of living with MS or know someone who does. Given there are 5-times as many people with epilepsy than with MS, I’d have thought I’d know more people with exposure to epilepsy.

Does this mean anything? Does it mean there is less stigma attached to MS and so people are more likely to admit they either have the disease or know someone who does? Or does it mean that people with epilepsy are less likely to acknowledge their condition, especially if it’s well controlled? I don’t know the answer. I find it fascinating though.

The first person to be “officially” diagnosed as having MS – albeit posthumously – was Augustus d’Este, the grandson of The Mad King, George III. Although he wasn’t diagnosed during his lifetime, the diaries that he kept detailing his symptoms allowed for the diagnosis to be made. He kept diaries of his condition for 22 years, with the final entry being made 2 years before his death in 1848. However, the disease can be traced back to the 14th century to Saint Lidwina of Schiedam Although she died in 1433, historical texts tell of difficulties in walking, pains in her teeth and terrible headaches. This gave rise to the probability she suffered from MS. However, epilepsy has been documented as far back as 400BC with Hippocrates, no less, dismissing epilepsy as being no more sacred than other diseases in response to the belief at the time that epilepsy or the falling sickness was some kind of supernatural affliction.

There are long lists of famous people who have lived or do live with epilepsy. Bonaparte, Julius Ceasar, Dostoyevsky, Alexander the Great, Lewis Carroll and Prince to name just a few. Yet, I can’t find a similar list stretching through the ages for MS. The lists for those suffering MS seems limited to those currently living with the disease or those, such as Ms du Pre who have passed relatively recently.

I find the differences and similarities between MS and Epilepsy absolutely fascinating. The stigmas, the discussions and the history of both diseases being a source of both wonderment and inspiration.

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Epilepsy and Words…

Busy busy week, not had much time to write!

There’s been a lot of talk lately as to how epilepsy should be described. Is it a condition, a disease, a disorder or something else? The International League Against Epilepsy, this month, classified epilepsy as a disease. The new clinical definition states that in medical terms epilepsy is a disease. It chose that term because of the range of health problems it covers and the implications of a long-term presence. ILAE didn’t think describing epilepsy as a disorder quite covers the seriousness of epilepsy. Well, it’s caused a bit of controversy and I, obviously, have an opinion about it too.

Disease means, according to my kindle:

“A disorder of structure or function in a human, animal or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury”

I’ve never felt the need to check disease in a dictionary before because I thought I knew what it meant. I always always always associated the word “disease” with an illness that you could catch. So, I’ve never described my epilepsy as a disease, because you can not catch epilepsy. Having read the description, I now understand why the ILAE would describe epilepsy as such and am also slightly humbled that I don’t know what I think I know about an everyday word. A lesson to be learned there. So my initial bristling at being described as having a disease has subsided, but I doubt I’ll ever be able to call my epilepsy such. I don’t like “disorder” either. To me, that makes me sound dysfunctional and I may well be that in certain aspects of my life…I’ll get to that later, but I don’t think of my epilepsy as a dysfunction. To me, “condition” is the way I describe it. It’s not an illness, although it produces effects that are illness-like….headaches, extreme fatigue, confusion etc.

I suppose if I’ve given disease the kindle treatment, I should do the same for condition.

“The state of something, esp. with regard to its appearance, quality or working order….a person’s or animal’s state of health or physical condition”

Bloomin’ heck, I don’t really like that either now I’ve seen it!

So, what about “disorder”….:

“A state of confusion….a disruption if normal physical or mental functions; a disease or abnormal condition”

Well, that seems a bit more palatable to me. Isn’t it all just splitting hairs though? I mean women have colds, men have flu type thing? It’s all the same but different groups of people describe it differently and one definition makes it appear worse than it is…does it add weight to my argument that me stating I am epileptic is just stating a fact and not that it means I’m defining myself?

My trusty kindle describes epilepsy as a “disorder”. But this all got me thinking again about history. No kindles BC! No dictionaries either really. Just poets, philosophers, physicians, warriors, slaves….So, I’ve been doing a little bit of research into epilepsy and how it was viewed in antiquity and the middle ages.

Lucretius was a Roman poet and philosopher, the following poem is attributed to him and is about his observations of those with the falling sickness (not entirely sure it actually is a poem, but has a poetic feel to it)…:

And, moreover,
Often will someone in a sudden fit
As if by stroke of lightning, tumble down
Before our eyes, and sputter foam, and grunt,
Blither, and twist about with sinews taut,
Gasp up in starts, and weary out his limbs
With tossing around. No marvel, since distract
Through frame by violence of disease…

Confounds, he foams, as if to vomit soul,
As on the salt sea boil the billows round
Under the master might if winds. And now
A groan’s forced out, because his limbs are griped,
But, in the main, because the seeds of voice
Are driven forth and carried in a mass
Outward as by mouth, where they are wont to go,
And have a builded highway. He becomes
Mere fool, since energy of mind and soul
Confounded is, and, as I’ve shown, to-riven,
Asunder thrown, and torn to pieces all
By that same venom. But, again, where cause
Of that disease has faced about, and back
Retreats sharp poison of corrupted frame
Into its shadowy lairs, the man at first
Arises reeling, and gradually comes back
To all his senses and recovers soul.

It sort of describes pretty well what happens and proves that these episodes have been documented for many a century. They didn’t seem to have a definitive word describing epilepsy but there have been many “cures” and “treatments” well before drugs came on the scene!

In the 4th century, Diocles used blood-letting as a treatment. He also prescribed drinking vinegar and sneezing before going to bed! Yes, sneezing! I’ve made the wild assumption that sneezing would purge the body of phlegm and of course an excess of phlegm is not a good thing. Lovely. Praxagoras of Cos, from around the same time as Diocles was apparently a bit of a comedian. He shaved the epileptics head and applied a poultice of vinegar….and he also recommended the holding of one’s breath. My favourite of Praxagoras’ cures however, involved compressing the afflicted parts of the body with various substances, such as the genitals of a seal! Yes, a seal! Parts of the body were also burned and incised. Sounds like a bundle of laughs. I think I’ll take my chances with today’s pharmacology, thank you!

In the early Middle Ages, the “falling sickness” was also known as the “falling evil”. Latin texts from the 7th century say that people called epilepsy “demon” and “lunacy”. Isidorus, the Bishop of Seville lived in the 7th century and he claimed epileptics were often called “lunaticus”. Time moves on and us epileptics are associated with having “ecstasies, raptures and prophetic trances” and were hence thought to be possessed by a supernatural being. The centuries haven’t really been overly kind to the epileptic in terms of description and cure it would seem. It seems, to me anyway, that while in antiquity the disorder was recognised as being a disease, the treatment however wild and fanciful was actually hoped to be a cure; as time moved through the Middle Ages it seemed that epilepsy was no longer viewed as a disorder but as a sign that the afflicted was either a demon in disguise or a lunatic suffering from severe mental issues.

It’s the words that are the crux of the issue. The “falling sickness” is actually a pretty accurate description of what happens and does not suggest a failing of mental faculties. The “falling evil” – different matter altogether. Centuries later and it’s the same thing. There is less attachment in the modern world to an epileptic being some kind of demonically possessed psycho, but the argument is about the perception of what it actually means to have epilepsy.

As an extra thought to all of this, maybe we should all be more mindful of what we say to and about each other. I’ve tried to make light of the subject, but it is actually important. I don’t want to be described as a demonic lunatic because I have epilepsy. If you think I’ve done something that warrants me being described as such, then I’ll guarantee you that it had nothing to do with me having epilepsy.

As a further wee note, I’d like to thank Owsei Temkin for the enlightening text – “The Falling Sickness”.