Chiari Malformation: Coming to Terms with a Neurological Disorder- and keeping my sense of humour!

I gave some serious thinkage as to whether to share this or not, and to paraphrase from the legend, Frida Kahlo, I am not sick… though I may be a little bit broken. In the bigger scheme of life, I see where I am today and count my blessings. Life is short, too short to ponder on what others might think of you – that’s not your business as another popular saying goes – so I’m getting on with things. And more thinkage.

I’m one of the millions who deal with pain, often chronic, on a daily basis – always have. Back and spine issues have been the bane of my life, but also migraines, neuroglia and a host of other maladies that would make me sound like a hypochondriac if I were to list them here! I’ve also battled serious anxiety and depression, some of it, though not all of it, I can certainly link to carrying pain, physical and emotional. I am not divulging this information for sympathy. Like I said, I am one of the millions, but if I am to write about this health issue, it has to be done with an all or nuthin’ honesty!

A couple of months ago, I was diagnosed with degenerative disc disease in two areas of my spine, which although is a pretty grim result, actually helped me to come to terms with a lot of the symptoms that have been getting progressively worse. I can handle DDD – I just need to mind my back and take appropriate care to try and slow down the degeneration.

However, other ‘symptoms’ prompted my neurosurgeon to investigate further, and that’s when the real bombshell hit. Something else had shown up, a rare (though the jury is still out on the rare bit, from what I can gather) neurological disorder called Chiari Malformation.

And yes, I was as dumbfounded as you might imagine – WTF??? being the questioning phrase of choice!

So, with this, let’s face it, pretty shitty diagnosis on top of the DDD, and the further examination and treatment plan that lies ahead for me, I decided to try and find out more about this unknown thing that I could quite possibly have had since birth. It can be congenital, with serious complications for infants and young children.

There is a lot still to be discovered about CM, it appears, and information is constantly being updated.

If we are honest, we can all admit to trying Doctor Google for what ails us, but I am steering clear of anything that is not verified and documented by experts. And, I have decided to write about it in the hope that this process might help me to drill down into a disorder I must learn all I can about, but also to share my experience so that anyone else who is presently, or might be diagnosed with this in the future, can at least have a place to check in with a fellow soldier!

So here are the deets! (A brief amalgamation of information I researched from medical websites – without the gruesome graphics!)

Chiari Malformation is a condition named after Hans Chiari, an Austrian pathologist who first described it in the late 19th century. It is a disorder in which the cerebellum is smaller than normal (YES, I do have a rather small head, thank you very much for noticing!) causing the cerebellar tonsils to migrate into the spinal canal. (Mine have travelled 10mm). If the cerebellar tonsils obstruct the opening of the skull that connects the brain to the spinal cord, the flow of cerebrospinal fluid can be blocked, pushing the cerebellar tonsils down even farther and exerting pressure on the lower stem of the brain.

Yes, it all sounds yuck and quite serious, which it is, though I’ve been told that if properly diagnosed and monitored, with accompanying pain relief of the constant and serious type, it can be manageable. An invisible disorder, (because ya don’t look sick!) the condition can cause headaches, fatigue, dizziness, difficulty swallowing, muscle weakness and balance problems. It can also produce hoarseness, sleep apnoea, weakness or numbness in legs or arms, neck pain, pain across shoulder blades, general body pain, ringing in the ear, trouble walking, blurred vision, mood changes, anxiety, and problems with memory or concentration.

Apart from the sleep apnoea, I have been dealing with all of the above in varying degrees for more years than I can count. Insomnia is also another problem for me, and I can only assume that this too is linked to CM.

Searches on pain management and associated issues of fatigue brought up a couple of helpful links. This LINK for more detailed information and also, this useful LINK from writer and broadcaster, Andrea Hayes, who has also been diagnosed with CM. These are not definitive portals of information by any means, but they may help in gaining a basic understanding of the condition, and in Andrea’s case, her personal account as detailed in her book, Pain Free Life, my journey to wellness. 

So for now, I’m dealing as best I can with it all, staying positive, though I’d be lying if I said I didn’t worry about what might be waiting for me down the years. Anyway, I’ll keep you posted! And I’ll keep doing what I do, writing out the thinkage! And if anyone reading this has CM, hugs to ya!

Write. It. Out.

It won’t last. That dull thud in your chest. The lump in your throat that keeps you silent. The sweaty palm thing won’t ever go away, but that’s okay. It’ll happen less and less. There’s a name for it, and you will call it. You remember everything. You are not weird. You are not a reject. You are not bad. You don’t know what you are. It takes time to understand, to channel it into something you can grasp. Something that is yours. But let me tell you, those floodgates will open wide, gushing wisdom and empathy into your blue, blue heart. And you will. Write. It. Out.

Black Dogs and Fuckery

A reblog, for the day that’s in it. #worldmentalhealthday2018

carolinefarrell

More often than we care to admit, sensitive, intelligent and creative souls fall down into the pit of depression sometimes. And I’m not talking the ‘blues’ here, like when your favourite jeans don’t fit anymore, or you didn’t get that job, that ring, that funding for your project; that house. No, what I’m talking about is that big black dog, the silent visitor that comes along every now and again, scratching its ugly claws at the door while you keep pretending, keep trying to ignore it. Keep trying to drown out the hunger of its need to get inside your head, to hang out there with its incessant negativity. You’re not good enough, you’ve nothing of value to say, to contribute, you‘re going to fail and nobody really likes you anyway; you have failed. You’re shit and the world would probably be a better place without you in it.

Complete and utter fuckery with your…

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Dressing His Former Self…

A couple of times a year, usually in summer and in the lead up to Christmas, I replenish my father’s wardrobe with the essentials – vests, jumpers, shirts, trousers and socks. I won’t, and don’t expect to get any thanks for it. He doesn’t know me anymore. He will talk to me as he would a stranger, if he’s in the mood. Pleasant and vacant – the ‘spick and span’ Da in his suit and tie that I grew up fearing cocooned now in mysterious, cruel layers that are painstakingly consuming his former self.

I have this ritual of ironing his name onto everything, an important task as otherwise, it will all get lost in the wash of the care home laundry process. Even his socks will be labelled before I place all of it in his wardrobe, in the bright and clean en suite room that the independent rebel still fighting inside him propels him to spend as little time in as he can possibly get away with. He paces the corridors most of the time. Going somewhere inside his head. Going nowhere outside it.

This ritual, I’ll put off for days, even weeks, the new clothes, still bagged and tagged in the corner as each time I find it harder to psych myself up for it. And even when his name is carefully placed securely on each item, I know full sure that the next time I venture in to visit him, another ritual that grows more difficult with time, some of the clothes will still be hanging, unworn in the wardrobe, and I’ll be frustrated when I see him wearing someone else’s jumper, or track suit bottoms – the latter an item of clothing his former self would, I know for sure, prefer not to be caught dead in.

Such is the experience of living with Alzheimer’s, my father’s personality, his style, his essence, his basic autonomy, slowly devoured by this cruel disease.

I didn’t always see eye to eye with his former self – anyone who has watched my film IN RIBBONS may begin to understand why – but the man I knew then is not the man I know now. The process of watching him disappear to a state of mind that only he will experience but will never be able to communicate to another human being is a dismal, morbid process to witness.

And the rituals hurt like fuck.

Me Too: In Solidarity with all victims, male and female.

I had to give it some thinkage before posting the #metoo hashtag. I don’t think I know a woman who has NOT been affected or harassed at some stage in her life. Every single day we hear of murders, serious assaults, and abuse of women and girls. And I can’t help but wonder if the men involved in the incidents I encountered in my early teens went on to do worse things. That is a haunting thought. And let us not forget that boys and men experience all of this too. And it’s even more difficult for them to tell anyone, or to report incidents and assaults to the authorities. I’m only going to share a fraction of my experiences, but I’m sure that many women, and men, will relate to them.

When I was 13, I was walking home with a friend, when a grown man overtook us. He disappeared and we paid no attention, until a little further down the road, he appeared again, fully exposed and w*nking off, his eyes fixed on us. My friend became hysterical and we ran all the way home, me chasing after her to calm her down. I was so angry, but I didn’t tell anyone. Why? I don’t know.

When I was seventeen, I said a very polite ‘No thanks’ to – again – a grown man, who asked me to dance, up close and rubbing up against me. He didn’t like that I said no, and grabbed me by the neck, pushed me up against a wall, and with his hand still gripping tightly to my throat, spit obscenities at me – until his ‘friends’ pulled him away, though not one of them checked to see if I was okay – I wasn’t! There were other incidents of course, lewd remarks, gropes, but again, I never told anyone. We all just carried on, didn’t we?

Another almost, but really NOT funny incident was when, still a teenager, I was out for a walk in broad daylight, pushing my infant son in his pram, when I passed a gang of boys (8 -10 year olds) and they were wolf-whistling at me. I almost laughed until one of them starting to rub his crotch and asked me to give him a blow job! That’s worrying! Where the fuck does a little boy learn to do that!

Like most women, I am blessed to know some amazing male friends. I am proud of my sons, love my brothers, and cherish my most amazing better half (long-suffering, some might say!) but we all, men and women, know that there are predators out there. That there are cretins out there. We need the good guys to help weed them out. Not through violence, but through calling out the bad behaviour and derogatory talk of their mates and work colleagues. And if that’s not possible, then at least remove these fuckers from your social circles. Diminish their warped sense of power. And, maybe we should consider creating a more inclusive hashtag — for women and men — in solidarity and support of all victims.

Her Whiskey Rose

Many years ago, I bought my mother a present – a whisky rose, named so for its rich burst of colour and translucency, a blend of amber and peachy hues that was even more striking in the setting she chose for it, to the side of the front door, along the garden wall.

Over the years, her much-loved whiskey rose battled for strength against the sapping dominance of the vines and shrubs that overshadowed its delicate nature, binding it, bending it, stealing vital light and nourishment, and yet, her whiskey rose fought on, surviving, year after year to bloom again, brazen, vibrant, smiling at the sun with her unique blush.

My mother is nine months gone now, and after her funeral, my brother, Austin, dug up her whiskey rose and brought it home to replant it…and there she is, our whiskey rose, resilient as ever, turning her face to the light, proud and vibrant, and she is there.

LET IT BLEED

So there’s a part of this story that will remain untold for now, but there’s also an amazing episode that can’t NOT be told. When I was a small child, I went to live with my Godmother, Auntie Kay, a genuine fairy godmother in a time of enormous upheaval, she nurtured my little self generously with the help of my uncle and her four teenage boys and only daughter, who was 19 when she had to share her box bedroom and single bed with me! The youngest, my cousin Derek, was sixteen at the time, and would let me sit with him for hours, listening to music from his vast array of LPs. Very early on, I remember being able to sing the lyrics of songs that he played over and over from the likes of Bowie, Zeppelin, Hendrix, The Doors, Pink Floyd and The Rolling Stones. One LP I particularly remember because the cover depicted what looked like a cake, was Let It Bleed, but of course, on closer inspection, as was mandatory for the times to examine every detail of the art work, front, back, and inner album sleeve, I was distracted from my misery for hours at a time, figuring out what I was looking at and what it all symbolized while listening to lyrics so totally inappropriate for my young age as I tried to decipher their meanings. I could sing You can’t always get what you want before I had even made my first communion!

Fast-forward to the present day. My son Lee, an old soul with impeccable taste for classic retro, had purchased a proper record player, complete with custom cabinet and speakers from the 70’s and an older friend of his gave him a bundle of LPs that had been gathering decades of dust in his attic – low and behold – originals from the likes of Bowie, Zeppelin, Hendrix, The Doors, Pink Floyd, The Who and The Rolling Stones. There was one in particular that Lee wanted to show me, the Stones’ Let it Bleed, released in December 1969 by Decca Records, it was the last record to feature Brian Jones before his untimely death. Lee particularly wanted to show me the handwritten notes and the Christmas dedication on it, as his friend had told him that he used to go to school with a guy called Derek and that this particular album had been his.

Yes, this is the very same album that I held in my curious little hands all those years ago. You can see Derek’s handwriting on the album, and his sister’s message. Imagine his utter joy on receiving this just released album from his big sis at Christmas! I’m not an overexcitable person, I don’t think I’ve ever squealed for joy or anything like it, but I did get a shiver of nostalgic solace when my son handed me this album, so many decades after I’d held it, pondering the grown-up, compelling strangeness of it all. To see it again felt like a big old blanket of comfort had just been returned. I’ve always believed in serendipity – and resilience – both themes that revisit me often through my life and creative work. Another irony is that I am currently finishing the final draft of my novel, LADY BETH, a tough project to write, and have recently listened to the lyrics of the song Let It Bleed for inspiration. WTF? Now that is serendipitous!

“You can’t always get what you want, but if you try sometimes, you might find, you’ll get what you need.”

Jagger and Richards: 1969

Spilling personal

I guess I’ve been a bit quiet for a time. It’s been a relentlessly difficult month, battered with grief of many shades, and though it’s rare for me to get personal on here, sometimes, as a writer, you have to spill in the way of words to deal with the pent-up emotions that hurt your throat in the anticipation of those dreaded explosions. The ones akin to those David Ferguson speaks of in his heartfelt piece in the Guardian, ‘We don’t ‘lose’ our mothers – the reality is more violent than that.’

For want of a better expression, I ‘lost’ my mother last month. Lost her presence, the sound of her voice, her wit, her humour, her shuffled gait, her complaining, her phone calls, her wants, her needs; her smile. She was eighty years of age, and you think you’ll be ready when they survive the battering of life to such an age, and many a personal battle she fought, but you are never ready, especially when they are still of mind as sharp and clever of those half her age, and with an equally strong willpower to stick around.

Detta 1

Not that I didn’t have enough test runs. Dashes to hospital for falls, broken hips, accidents, breathing problems, the list goes on – and yet, the endgame was sudden; no time. No time to say It will all be okay, like all those other times, Sure you can’t kill a bad thing – and she’d give me That Look. Ya cheeky pup! That look, always followed with a smirk and the page would turn as she did, doing a Lazarus in health and resilience and all was calm again.

Apparently, I have inherited That Look. Or so I am told.

Reduced to just the items in the pockets of the cardigan she was wearing in the moment of her death, from the second I kissed her cold forehead, I lost my peripheral vision. I could do what I needed to, I would, for her. I would have it all sorted, just as how she would want it to be. But I would only see straight ahead, whoever, whatever was in front of me and nothing else. That was how to get it done. That was how I wouldn’t crumble.

Mam and Dad 1

And now there is my father. In dementia; that fucking frightening and cruel place of Alzheimer’s, and she is gone, and there is stuff to do. And it will be done. I grieve for him also. Fit as a fiddle in everything but mind and memory.

I see shadows now. Ethereal shapes in my returning peripheral vision. Nothing there; and there they are. It is the essence – the only thing that can never be lost. My mother, the beautiful, complicated woman she was. Fragile yet fierce. My mother, the woman she became. Fragile and frail. My father, the meticulous, temperamental, well-groomed man he was, distant and fierce. My father, the man he has become, distant and fragile. And the memory wandering. Reduced of his innate independence. Reduced to helplessness, to the present ten minutes of his life. Reduced to the man who someone else must wash, who someone else must groom. Reduced to the man in the clothes that someone else must launder, that someone else must dress upon him.

Oblivious to what the short-term future held, at the end of last year, I read, on the recommendation of John Lonergan, a small, yet magical chronicle, Tuesdays with Morrie by Mitch Albom. I kept the book, mostly because John had signed it for me. Meant to be. And no doubt I’ll be dipping into it again over time. No lessons on living from me to end this spilling though, just my own hard-learned observation. We crumble. We move on. We reduce. But in between, the light gets in.

Detta

Rest easy, Ma. Or race on, graceful as a gazelle.

12 imperfectly perfect observations…and not just for Christmas!

 

  1. Not everyone is going to agree with you; they don’t have to.
  2. You are not going to agree with everyone; you don’t have to.
  3. Normal is unfathomable, therefore, unattainable, therefore, unimportant.
  4. Difference is unique, therefore human, therefore, precious.
  5. You look the way you do, you are who you are; stop apologizing.
  6. See, there, in the mirror; that is beauty.
  7. You are your best company; be kind to you.
  8. Respect is a gift. Refuse the alternative.
  9. Empathy is everything. Make it your religion.
  10. Learn from your blackest days. Your imagination lurks there.
  11. Embrace the crazy. Write it down. Don’t lose it.
  12. You are imperfectly perfect; so are they.

Intruder

It goes by many names, the space invader, the infiltrator, the head fuck, to name a few. Arrives unannounced and unexpected, taking residence in your comfort zone, droning on incessantly with negative speak, the stuff that hurts your head, while you hover uncomfortably in your own space, out-of-place. Welcome overstayed when none has been offered, sapping strength as the clock ticks and panic builds because you have things to do, life to live, but you can’t turf it out because you don’t know how, and you’re not that strong anyway. So the invasion prolongs  and it grows darker and your brain grows numb with the pointlessness of it all, and your chest hurts, and your stomach feels hollow; but finally it grows tired of your boring, catatonic company and you brace your exhaustion against the portal through which it slithers away; the portal that opens ever so slightly to let the light in. Sighs of exhaled pressure leave your chest and you swear that you’ll be ready the next time, braced and protected; but that’s all just fuckery thinking, and well you know it, for it will be there when you are not looking, when your guard is down; when you are content – or think that you are. It will come again alright, but you just hope that it won’t be for a long while yet.