This is a little article I wrote for another Ayr Writers’ Club competition. It deals with the most excruciating part of having ME/CFS – the dreaded Brain Fog, or BrainFrog as I know him…
The Brain Frog
Nobody told me about the Brain Frog when I was first diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) back in the late 1990s. Although it helped to have a label to pin the pain and overwhelming exhaustion on, I was left to discover the little beast for myself.
Now, the Brain Frog loves to cause havoc with all the hoo-hahs and nerve whatnots in the brain. He is not too discerning a soul either as he is quite partial to setting up home inside Fibromyalgia and MS patients too. He has a pathological sense of timing; especially when you’re in polite company. For instance, he senses when important information is whizzing along the brain’s Superthinkinghighway and then ZAP! He flicks out his long, pink tongue, thwacks the connections, and deliberately disconnects the hoo-has from the whatnots. This means that whatever word you’re about to say next gets jettisoned. It is no longer part of your vocabulary. It never even gets to limbo on the tip of your tongue.
One time, while zooming along the aisles of the local Co-Operative, I bumped into a close friend who understood my difficulties.
‘I’m looking for…erm…,’ I said to her. ‘Have you seen him?’
‘Who?’ she said.
‘Erm, him,’ I said, pointing around the shop. ‘You know, the fella. The one with the strawberry blonde hair.’
My friend frowned, straining to decipher my meaning.
‘Nope,’ she said. ‘I’m not getting it.’
Turning pink with frustration and embarrassment, I said, ‘You know, the fella that lives in my house. I see him every day at breakfast. Farts a lot. Paints pictures. There were vows…’
‘You mean Michael?’ she laughed.
‘That’s the one,’ I said, delighted to have the word back in my ownership.
‘Yes,’ she said. ‘Your husband is over there by the frozen pizza.’
This is a typical victory for the Brain Frog.
The Brain Frog is indeed a master of word thievery. Usually, the patient and their loved ones work out a system of communication to outfox the little monster. My own involves Word Bouncing. This is where I take unconnected words and throw them out of my brain like imaginary squash balls. If I fling enough of them into the metaphorical air, it distracts the BrainFrog so the real word can slip off the Superthinkinghighway and arrive at its destination unharmed. For example, I have often forgotten instructions to my husband part-way through a sentence. To compensate for this marital faux pas, I say the first word that comes to mind, or I Word Bounce, until the correct word turns up.
One day I said, while brandishing my empty mug, ‘Honey, would you mind taking this PLIMSOLE through to the BATHROOM? I would like another…RABBIT?’
My husband took the mug from me. He frowned for a second and then said, ‘I’m guessing the blanks are “cup”, “kitchen” and “tea”?’
As a fully qualified Brain Frog translator, he was half-right.
‘Almost,’ I said, ‘but not just “tea”.’
‘What then?’ he said.
‘Ooh,’ I sighed, feeling the little Brain Frog beast zapping away at my brain parts. ‘I would like another…CAMERA, CHICKEN, BOTULISM, PERIWINKLE, TURNIP…to dip in it?’
‘Do you mean a “biscuit”?’
‘Aha! Yes,’ I said, applauding his translation skills, ‘a chocolate digestive, if you please.’
The Brain Frog is complicit in many other exasperations. His interference can make you request ‘turtletoise’ coloured glasses from the opticians or make you put random accoutrements in the freezer. In my case, it was the remote control for the television.
Once, while taking a shortcut through a forest track, I flung a sturdy, oversized branch for the dog to fetch. However, Wooster, our beloved Bearded Collie, was still at home. I forgot I was walking alone. I also forgot there were people walking behind me. I have never shuffled through the leaves so fast or so pink-faced. Well, there was no way I was hanging around to explain to them exactly what the BrainFrog had done to me. No, my pride thought it better to have them think I was the kind of woman who would throw sticks in the forest for an imaginary dog.
As part of learning to live with the BrainFrog, social media has become my external memory drive. So, whenever the dreaded beast steals my words and thoughts, or turns my actions upside down and back-to-front, I upload the incident into the electronic-magic-place-of-people-sharing-ideas – see, it happened again – as soon as I can. So now, whenever I lose a memory, I rely on Facebook to remind me.
By opening myself up on the Internet like this, it’s encouraged other BrainFrog sufferers to share their experiences with me. We’ve gone from feeling alone and foolish to building an online community where it is perfectly acceptable to laugh at ourselves and at our experiences with the little beast. In my imagination, the BrainFrog has diminished in size thanks to this. No longer the size of a Norwegian Troll, he’s now smaller than Kermit, and just as annoying.
So, if you are afflicted with your own BrainFrog, please be assured that you are not alone. There are many of us who know his devious ways and we are very much willing to listen to you and to share our coping strategies with you online or in local groups. Mostly, it just feels good to externalise the little blighter. The more we talk, the less isolated we become, and the less power he has over us.
This is why I feel brave enough now to tell you my biggest, and most embarrassing, BrainFrog moment. A few years ago, Michael and I were living in Portree on the Isle of Skye. Our house was on the main road running through the village; which essentially makes Dunvegan Road the Princes Street of the island.
This Brain Frog production occurred on a fresh spring day. Sunshine filtered through the windows and there was a still a little chill in the air. It was the perfect sort of island day in which to take Wooster, then a 10-week-old puppy, for an outside adventure.
In high spirits, I took my time getting ready. I dried and styled my hair. Thereafter, sitting down until the hairspray-induced coughing fit passed. I then found a good blouse, which was mostly dog hair-free, and put on my favourite necklace and earrings. That day, I even felt good enough to spray some perfume and put a little red gloss on my lips. However, after taking so long, the puppy began to lose patience.
‘Yes, yes, baby boy,’ I sang to him as he bounced about the hallway. ‘Just let me put my sandals on.’
‘Rrruff, rruff,’ he replied.
My husband, engrossed in his breakfast, paid us no mind.
At last, I clipped the lead onto the puppy’s collar and grasped the handle of the front door, ready to step out into the world. By this time, the school and work traffic had built up. The crossing guards were on duty. The tourist campervans were in full flow. But just as I opened the front door onto the main street, I felt a strong gust of wind nipping at my nether regions. Something felt odd, out of place. The puppy looked up at me, not quite sure what the delay was for.
ZAP! The BrainFrog had been up to his old tricks. It took a couple of seconds for what he had done to sink in. As soon as the realisation hit, I slammed the front door, and dragged the puppy back into the living room. This time, the Brain Frog had gone too far.
‘Mmmichael,’ I half-stuttered, half-giggled.
‘What’s up?’ said my husband.
‘I was about to go out…like this,’ I sobbed, pointing to my downstairs ladyparts.
My husband looked up from his cornflakes. His jaw dropped. He shook his head.
‘But you’ve got no knickers on,’ he mouthed, his eyes wide.
‘I remembered everything else but those,’ I said.
‘Brain Frog?’ said my husband, wrapping his arms around me.
‘Yup…BrainFrog,’ I said.
Shortly afterwards, I could laugh about this and I’ve not been able to stop laughing at the ridiculousness of it all ever since. Laughing makes me feel human again. It’s not me that is faulty; it is that blasted BrainFrog interfering with the hoo-has and whatnots in my brain. So, if you have one of these silly blighters inside you, maybe you could try laughing at him. It won’t make him stay away, but this small victory prevents the BrainFrog from claiming ownership of you. Most of all, it helps to remember that it’s his fault; not yours.