This is my collection of ‘nonsense’ that I compiled as I rehabilitated my brain after Medulloblastoma (aka brain cancer) nearly wiped out my balance and co-ordination center. I learned a lot about how to learn to walk, write, eat, enunciate, get out of bed…and fall down seven times, get up eight.
Not that I want you to fall down. I just want us all to know that we can fall and get up again, and again. I’ll share all my falls and my recoveries. From learning the basics to hitting the ice, the slopes and a dance studio or two.
Day 145 of the Baby Aspirin Challenge. I have some interesting things to report. I’ll start with later, pretty good stuff and finish with the earlier bigger thing.
Since Day 21 I have had no ‘balloon brain’: this is not a medical term, just the simplest way to label the sensation of my head floating and bobbing, dislocated from my shoulders. AND no visual vertigo: as in no horizon teetering or walls wobbling.
On Day 23 I ran down the stairs from the second floor to the ground floor — hands free. That’s a big deal because I usually take stairs slowly and hold the railing of press my hand against the wall. That little extra freedom of movement is a gift; a little bit of me (before brain cancer) being returned to me.
On Day 2 (that’s right, we’re going backwards) the really big thing happened: I woke up with the distinct sensation of clarity. I’d forgotten how that felt. For nearly 10 years, I’ve been tired and blunted and caught in the hazy veil of Chemo-brain. I assumed it was the price I had to pay. I had brain cancer and lived. So, no suck-holing.
I didn’t have Chemo and I’d never heard of Chemo-brain. But Chemotherapy isn’t the only cause of Chemo-brain. As Dr. Patricia Ganz (UCLA) puts it:
From many sources of data, we now know patients experience impairments not just after chemo, but after radiation, hormonal therapy, and other treatments.
IMPAIRMENTS: fatigue, slower or reduced memory, information processing and concentration. AFTER may be months or years after treatment — up to 20 years, according to Tim Ahles PhD and his colleagues at Memorial Sloan Kettering Cancer Centre.
Did you catch that? twenty years. It’s been 10 years since brain surgery and brain / spine radiation. And yeah, I had full-fledged Chemo-brain. Now I have something closer to My-brain: clearer, less fatigued, and better focused brain function. I think I still struggle with word finding, but I’m a writer and finding the right word is always a struggle.
Dr. Ganz at UCLA is doing work in this area, and one of her team’s findings is a link between the fatigue and cognitive complaints (i.e. Chemo-brain) and inflammation…in the brain! Here’s how she described it:
…if somebody says ‘I’m really forgetful, I can’t find my words very easily, I can’t concentrate,’ when they’re telling us those things and it hasn’t gotten better 6 months or a year after their treatment, they’ve had some kind of injury.
An injury: it makes concentration and memory recall more difficult, and us more challenged. We have to work harder, but we are not intellectually deficient And thankfully we have Dr. Ganz and others looking into this. But they’re mostly looking at how to prevent it. (What genes or pre-existing conditions make this happen to as many as 45% of cancer treatment patients.) For us, the ones who have already done the treatments and have the brain-fog, prevention is not an option. We did it and we got it.
And this is where my not even remotely scientific Baby Aspirin Challenge may come in handy. My doctor-of-a-husband did research on this very thing and linked it to some more general studies about post-injury inflammation and baby aspirin. And that’s why I started taking baby aspirin: one a day for the last 145 days.
When I started, I was hoping for some improvement in my balance and co-ordination; especially the proprioception in the soles of my feet, but I got something better. Maybe you can too…and most definitely, pass it on!
research for this post was done via the National Cancer Institute. ‘Understanding “Chemobrain” and Cognitive Impairment after Cancer Treatment.’
Happiness shared is doubled, grief shared is halved; Swedish proverb
In this spirit I’m dusting off my blog and posting the ‘Baby Aspirin Challenge.’
An experiment: one baby aspirin a day for 150 days (the number of tablets in the bottle) to see if the anti-inflammatory effects of the aspirin can help my ailing post-radiation brain.
Today is an anniversary: ten years since my medulloblastoma (aka brain cancer) was taken out of my head. That is reason for celebration, but the surgery left me with severe balance and co-ordination deficits…the biggest thing was walking: I couldn’t without a walker. It took me more than a week to be able to sit up in bed. And then it took 20 minutes. Eating was difficult: spoon-to-mouth plus chew and swallow was a challenge. Vertigo, nausea, vision tracking…a pretty long list of things going wrong after surgery. But a month later, I was making real progress: no walker, spoon-to-mouth aim solid, etc.
Then six weeks of head and spine radiation: 4 weeks of head and spine, then a 2 week boost to the tumour bed. All of my rehab vanished. I thought so what, I did it once, I’ll do it again. But I didn’t. Not fully and not always reliably. I never need a walker, but my feet cross when I walk, or stumble over nothing. Or I wake up and the room is spinning (not just light-headedness, I see it spinning). Sometimes there’s just a fog; I can’t understand what I’m reading or find the chords on my guitar that I know I know how to make. And there are words I can’t find, or catch hold of…like they’re a bunch of minnows in a bucket; I keep plunging my hands in the water but they keep slipping through my fingers.
That’s the worst one, and what lead to this post. A couple of months ago at my last MRI follow-up my radiation oncologist asked, “Do you have any trouble word-finding? A lot of brain radiation patients find that to be a problem.”
I sat up nice and straight in my plastic chair and said, “No,” in some twisted version of never tell a grownup the truth…because they can’t help you anyway and worse, you might get in trouble.
A couple of nights ago I cracked — 10 year anniversary of brain cancer diagnosis, half a bottle of wine, a weepy movie and KA-BAM! Sloppy, sobbing confession of all the little things that are always going wrong with my brain’s vestibular system. My husband heard it all, tried to give me some advice, got yelled at for it, (I’m mercurial, ok?) then went to his computer to do an all night search on — here, you should know he’s an MD, Chief of Staff, former Chief of ER etc etc — post radiation microvasculature inflammation, and effects of low dose, daily acetylsalicylic acid (aka baby aspirin) on inflammation. Here’s what he found:
1. Years after radiation therapy there may be intermittent inflammation of the microvasculature. What the #%$&??? In English: When the tiniest of for our blood vessels — the ones dropping off the oxygen the red blood cells carry — get zapped with radiation, they get inflamed. The inflammation means that the passageway is too small and tight for any blood cells to reach the tissue (in my case brain tissue) to deliver the oxygen that body part needs. No oxygen = low /no performance of duties.
2. A daily low dose of aspirin (baby aspirin / 81mg ASA) reduces inflammation.
Will one baby aspirin a day calm my frazzled microvasculature so that it can deliver the oxygen my brain needs to function reliably every day? I don’t know…I’ll keep you posted.
Merriam-Webster defines “SING” as follows:
- to use your voice to make
musical sounds in the form of a song or tune
- to make pleasant sounds that sound like music
I have a problem with that because (1) I can’t make pleasant or musical sounds and (2) the grand old dixtionary (hear it with a fusty old marbles-in-your-mouth English accent and it makes sense) used a derivative of sing to define sing. A no-no, as any of us that passed (or failed because you probably heard the rule repeated a billion times) grade four dictionary studies knows.
Actually, I’ve never met anyone who believes they can sing well — except maybe my guitar teacher but he’s practically a rock star and I’m not counting him. If you’re like me, you will only sing HAPPY BIRTHDAY in a bar full of drunken, tone-deaf friends. We feel the same way Colin Firth feels about his singing voice: my singing voice is somewhere between a drunken apology and a plumbing problem.
Colin Firth, the guy who won the Oscar for Best Actor for The King’s Speech. Do you remember that movie? It’s about Prince Albert, who had a speech impediment – I bloody well stammer – is how he / Colin Firth puts it in the movie. But then he has to be King, because his divorcée-snogging, Hitler-loving brother is forced to abdicate. (aside: it was strange that most people blamed the scandalous Wallis Simpson relationship for the forced abdication when I think being a Hitler fan is the better reason for a forced abdication). Anyhow, with World War II raging, the newly crowned King Albert has to make a lot of speeches to lift the spirits of the poor commoners. And he’s terrible at it; even with the fate of the free world at stake he just can’t get the words out. It turns out, that’s a bit of a problem when you’re king.
Actually, it’s a bit of a problem when you’re a regular person too. We all need to be able to speak and be understood, even if the fate of the country isn’t doesn’t rest on your shoulders. You’ve got phone calls to make, Doctors to debate, children to read to, meals to order…the list is simply endless (another fusty old brit accent here).
In the hospital after brain surgery I couldn’t do any of those things. I understood what everyone said and could form language-based thoughts and answers but I couldn’t verbalize them. I grunted out monosyllabic words or truncated phrases like:
Vomit bowl please…Ice chips please…Sleep now…sorry
The formation of speech requires the co-ordination of our breath with our vocal chords and our mouth-tongue-teeth shapes. In other words, it’s complicated; more than one thing is happening at the same time and any glitch in timing, placement, or co-ordination and the sound that comes out of your mouth doesn’t do what you want it to do. It sounds wrong, to quiet, too loud or aggressive. I sounded like a Neanderthal grunting out monosyllabic requests for the most important things, otherwise I was silent. The medical staff began to whisper about ‘permanent, irreversible brain damage’.
By the time I got out of the hospital I was speaking in sentences, but new problems surfaced with my speech: I didn’t sound like I was a member of the Clan of the Cave Bear, but I was still forcing air through my vocal chords and the sound was something like a lilting high pitched leprechaun…pink hearts, yellow moons, orange stars, green clovers and blue diamonds!
And I sounded like a drunken leprechaun at that. I couldn’t sort out the ‘voiced’ and ‘unvoiced’ pairs of consonants. Sounds fancy, it’s pretty simple:
If you press your fingers lightly on your throat and say the list of consonants in the left-hand column you’ll feel your vocal chords vibrate – the sounds are ‘voiced’. Do the same thing with the words in the right-hand column. You won’t feel any vibration from your vocal chords – the sounds are ‘unvoiced’. If you do one half of the pair and then the other, you’ll notice that the mouth-shape is the same for each letter in the pair. I could say the voiced letters easily, but not unvoiced letters – they came out as their voiced twins, so…
“Cookie cutters are essential for perfectly baked cookies”
“Googie gudderz are ezzendial vor bervegdly baged googiez”
…hence, a drunken leprechaun with a cold. Speaking to strangers, speaking on the phone, speaking in public places was a mix of hard work, frustration, misunderstanding and embarrassment. Even now, when I’m very tired, my S’s turn into Z’s, and I worry that I might sound like I’m picking up my daughter from school after downing a bottle of somphin-somphin. On those days I try not to speak to anyone; I nod and smile a lot and appear even more shy than I really am.
Just out of the hospital, I was the mother of a toddler reluctantly learning to speak and I wanted to set a good example for her. In speech therapy I learned to stretch my vowels á la Bill Clinton “Aah did not have sexual relations with that woman.” It works partly because stretching the vowel sounds slows down the speech; both the sound and the inner-workings. As an added bonus, it can help relax the speaker / you.
When I was a kid I used to do tongue twisters with my father (a very competitive man) as fast as each of us could. So I did some on my own after surgery; not as fast as I used to, but they loosened up my jaw and tongue and allowed me to focus on only the words and not worry about meaning or making sense. Less pressure makes for better practice (in my opinion). And ‘regular’ people screw up on tongue twisters too, so a little boost in the ego, I find. When you’re feeling good about it, challenge someone else, make it fun and silly. ie try anything that will help you relax.
A similar strategy is to read aloud from a favourite book. Saying words that you love to say for no reason at all helps take the pressure off: you don’t have to think about what you’re saying, or if the person listening is understanding you. You’re just working on the mechanics of speech. Like a sports drill, or musical scale not meant for anyone to witness.
That can really help; the whole no witness thing. Once I got past the basics, I searched out a singing coach. Now let’s be clear: I cannot sing. At all. In fact I never really sang in those lessons. I did scales and lip-bubble scales: ma-ma-ma-ma-ma-and back down. Or with fa-fa, or la-la. Always with one hand on my sternum so I could feel the vibration as I moved up the scale. Give it a try: start with the vibration down in your chest (the deepest your voice will go) then move that vibration up: collarbones, throat, cheekbones, forehead and if you’re really daring the top of your head. It takes time and control and it strengthens the muscles and mechanics of speech without actually speaking. Let’s call it the joyful noise. And let’s raise our voice in sound and rejoice, unafraid of telephones, microphones, crowded rooms or national anthems. Ahh-men!
The human voice is the organ of the soul…Henry Wadsworth Longfellow
Do you ever watch reruns from your favourite TV shows? The really old ones, like when you were a kid…the ones you might not have fully understood but loved anyway. Maybe even binged on them in your jammies all day, all night, all weekend.
Sometimes they’re awful, like watching Fonzie jump the shark and you know you will never go back there again. Then you remember WKRP in Cincinnati was the coolest TV show ever and you start with the Thanksgiving Turkey episode when Herb Tarlek convinces the station manager that releasing live turkeys from a helicopter would be a really great Thanksgiving promo; thinking the turkeys would fly over the city spreading good will in the market place of rock radio. Then you laugh your ass off while his man-on-the-street, Les Nessman does live commentary of the turkey carnage. Then the early 80’s bender ends and you wonder why TV can’t be that funny anymore and why the witless Kardashians are on TV. And you get stuck looking back at those halcyon days of primetime television and forget about Amy Poehler and Tina Fey.
Some of us think holding on makes us strong, but sometimes it is letting go…Hermann Hesse
Does that ever happen to you? I feel like it’s been happening to me. This holiday season it’s been happening a lot. Nine years ago today I was in the hospital after surgery, trying to walk with a walker, and hoping to be out of the hospital soon soon soon so I could really learn to walk. This time of year always reminds of that – the diagnosis, the surgery, the decimation of my brain’s balance centre and the cancellation of my trip to China to bring home our new daughter.
Every day I look at our daughter and I am beyond grateful that Tom went to China and brought her home. But three, maybe four times a week I look back further, to the before…before brain surgery, when everything was easy. When I was awesome; fearsome really. When I could drop into a bowl of powder on my snowboard, ride my mountain bike through gnarly single track, when I could drink a glass of wine and not worry about stumbling around like I’d had a whole bottle. When I could drive my car after yoga because I wasn’t vertiginous, or wasn’t frightened on a ski hill because my balance centre might crap out and leave me stranded…or when my husband didn’t watch me with worry in his eyes, when he watched me just because.
Looking back, bingeing on the reruns of my life before – the WKRP of why can’t I do this stupid thing like I used to! – has been a load of rotting dead weight. After getting out of surgery I looked back to my sporting days and found things that were helpful; things I used to rebuild my balance centre: drills, attitude, grit, strategy. But lately it’s been an impediment looking back at what I was. I need to move forward as I am. With my limitations, but also with my experience, confidence and strength that I didn’t know was there before. Some of it came from the good old days, but a whole lot came from me – it was there, just waiting for me to dig it out and use it to blaze a new unexpected path forwards.
What lies behind you and what lies in front of you pales in comparison to what lies inside of you…Ralph Waldo Emerson
I’ll bet you have your old reruns too – some WKRP cool, some dreadful and best left forgotten like Fonzie jumping the shark. Indulge in the ones that give you a boost. The ones that remind you what you are made of, what you know, what matters to you know, and how to move onward, forward, upward. I know, it’s a little cheesy, but like a good grilled cheese sandwich there’s a simple honesty to it.
And in case you don’t believe me, or you don’t like the comparison to late 70’s / early 80’s TV shows, I included some timeless words from people way smarter than me to help you out.
Start by doing what is necessary; then do what is possible; and suddenly you are doing the impossible…Francis of Assisi
Even if you fall on your face, you’re still moving forward… Victor Kiam
One cannot think well, love well, sleep well, if one has not eaten well ~ Virginia Woolf
A whole bunch of years ago I decided to take up snowboarding. On day one I refused the free helmet and got a minor concussion. Day two was a mandatory rest day and on day three I was back on the slopes without the free, strongly recommended wrist guards and broke my wrist. (I know.) On day four I walked to my favourite après food hut at the base of Whistler Mountain. I wolfed down a large order of steaming fries, eyeing my poutine-eating neighbours, wondering if I should order some of that… was that real gravy? My stomach groaned. When I got up to go my knees buckled and by head throbbed. I was sure I was going to vomit up those tasty frites. But not like ooh I ate too much too fast, more like my body was violently objecting to the food I just fed it.
In a stupor of hunger and pain I staggered across the village to the base of Blackcomb Mountain and into the old-school glam Fairmont Chateau. I’m pretty sure I hadn’t brushed my teeth or hair, and I know I didn’t shower that morning but the good folks at the swank lounge are used to serving sweaty mountain sliders. I plopped onto one of their couches and started on the ‘sharing’ platter. Paté spread thick on wafer thin bread, then cheeses shoved into my gob when all the meat was gone, olives and such were left untouched. I immediately felt better. The enraged body / stomach revolt was over. It would start up again in a few hours and I’d have to feed it more protein and calcium, every meal, every day until my wrist healed was like that.
This is how I figured it: my body was mending a bone and it needed building blocks: protein and calcium
Years later, after brain surgery I was hungry again. Not for paté and cheese, but something not hosptital food. (I know, me and every hospital patient ever) My mother-in-law sent me dinners she cooked at home just for me: every meal came with soup with Chinese greens and walnuts*. After I ate it, I always felt much much better. Not just yummy my tummy’s full, but better, as in my near debilitating headache abated, my breathing evened out and I could try things like focusing my eyes on objects or people instead of just staring at my IV line.
* The walnuts were important: in Traditional Chinese Medicine, or at least at its grassroots, any edible item that resembles a body part is good for that body part. Walnuts look like brains, ergo walnuts are good for brains. With this logic my Chinese mother-in-law fed me walnut soup to heal my broken brain. (This also explains some of the illegal poaching of predators for their schwanzes.)
Strangely, or serendipitously, one of my rare university A’s was in neuroscience and I remembered (being an A-student and all) that the brain is mostly made of fats. It is in fact, the fattiest organ in the body at 60% fat. To maintain its fattiness it needs fats – OMEGA-3 essential fatty acids, to be precise – to build and maintain every component of neurotransmission: the hard-wiring of the brain that allows it to send signals, and increase the speed and accuracy of those signals. That recalled information + my mother-in-law’s soup + my broken wrist diet drove me to invent my own brain recovery diet…
…Four fish oil capsules three times a day, full fat yogurt, avocadoes, cashews, pecans, almonds, deep cold water fish like salmon, tuna and black cod. It was experimental, sometimes my food choice helped, sometimes it didn’t. Whenever I ate something that didn’t feed my brain’s need for building blocks, the scar that runs up the back of my head, cinched over the hole in my skull where the tumour was removed and it hurt. It was a dead accurate barometer for what food was helpful and what food was not.
As long as I consumed the helpful foods in robust quantities, my scar stayed silent and supple, otherwise it was Lord Voldemort and Harry Potter’s scar.
I’m guessing that not all of you have holes in your skulls with surgical scars running along them, so I asked Liane Wansbrough a holistic nutritionist what foods would be most helpful for anyone building a healthy (recovering) brain diet. Here’s what she had to say about finding foods rich in Omega-3 fatty acids:
“Modern dietary practices and milling techniques have make the omega 3 fatty acids scarce. Here’s a list of foods that contain omega 3 fatty acids:
Alpha linolenic acid (ALA): flaxseeds and oil, hemp seeds and oil, chia seeds, walnuts, Brazil nuts, green leafy vegetables, omega 3 enriched eggs, grass fed meats, wild game (bison, elk), grass fed butter.
Docosahexaenoic acid (DHA): salmon, cod, haddock, halibut, scallops”
Liane also suggests adding antioxidant rich fruits and vegetables and phytonutrients to convert the ALA foods to DHA Omega-3 building blocks for your brain and its neuropathways. ALA’s on their own don’t cut it…who knew? (not me) [But Liane Wansborough knows stuff like this and so much more — and if you need more, I strongly suggest seeking her out.]
In my experience, fueling up with the building blocks just before and immediately after an attempt at a new brain skill – any kind of physiotherapy or new brain adventure – gives your walnut what it needs to lay down or strengthen the pathways that promote brain health, resiliency and recovery.
Eat, drink and be merry!
The only time to eat diet food is while you’re waiting for the steak to cook. ~ Julia Child
Vertigo is the conflict between the fear of falling & the desire to fall.
Salman Rushdie either has vertigo or he loves roller coasters; because that is the most accurate and honest description of vertigo I’ve ever read. If you like roller coasters, you like vertigo. Like roller coasters, vertigo is fearsome (when you’re on a staircase, or driving) and also seductive. Like when you’re lying on your back about to fall asleep and you feel like you are actually falling…down through the mattress, floor, basement. But you can’t keep picking that scab; the wound won’t heal.
The Merriam-Webster Dictionary defines vertigo as:
- a sensation of motion in which the individual or the individual’s surroundings seem to whirl dizzyingly.
- a dizzy confused state of mind.
So vertigo (a) causes vertigo (b).
About a year after brain surgery and radiation, my hair was growing back and I was walking pretty well. There was a gala at a fancy ballroom and Tom (husband extraordinaire) was sure I was ready to return to the social side of life outside of our apartment. I like dressing up and getting all beautified. I even went out an got a new dress: a one shoulder, pin-tucked Greek goddess kind of dress. Very Marilyn.
The thing is, you can’t wear a bombshell goddess gown with ballet flats. I hadn’t worn heels since surgery, but – I told myself – I used to wear heels nearly every day, I’d be just fine. I wore my faves for good luck (gold peep-toe 2 1/2 inch heels if you must know).
The elevator doors opened and we stepped out into the atrium: sparkling chandeliers, plush regally patterned carpet, music and happy champagne glass clinking attendees. I knew immediately I’d made a mistake.
My heels sunk ever-so-slightly into the carpet, my brain sloshed and my stomach fluttered. The lights twinkled and the room faintly swayed. Tom threaded my arm through his and led me across the room full of people who’d been asking him how I was doing for the past year and now wanted to see for themselves…the floor did a little spin and I clutched Tom’s arm in panic. He led me to our table – in the dark dining room, illuminated by fake flickering candlelight. A band was cranking out gawd-awful ‘tunes’ and the carpeting was even more plush than the one in the atrium. I felt like I was walking a squashy tightrope in a Cirque du Soleil strobe-lighted tent. I needed help not just to walk, but to sit in my seat, I was so discombobulated.
A few minutes later one of Tom’s colleagues came over to say hello and introduce me to one of the top editors of Canada’s national newspaper. He’d read the little piece I’d written about being diagnosed with brain cancer and wanted to know if that’s what I wanted to do – write essays. Hell yeah! But my brain did sort of a stutter step, what? did he say write…I stared at him unable to find words. He asked again. I searched what was left of my mind and stammered, “um…yeah?” He blinked in that way that signals this conversation is over because it is a complete waste of time. He nodded and he was gone. And with him, the opportunity of my writing lifetime.
Messrs Merriam and Webster are right. Vertigo is both (a) a sensation of motion where the surroundings or person whirls dizzyingly and (b) a dizzy confused state of mind …and (c) often at the same time.
But what to do!?
Survival first: find something or someone to hold onto, or at least stop what you are doing. Good. Now take a breath. Okay… mind over matter. This is your brain — gone rogue, yes but it is still yours and you can influence its behaviour. Find the horizon, just like you were on a boat and seasick. If you’re indoors, look to the place where the ceiling meets the wall. Anything stable that you can focus on. Visualization also works for me: whenever I feel my stomach drop, or my head floating off my shoulders, I visualize a hot-air balloon landing in a forest clearing – I don’t know why it’s that image it just is, you can make-up your own or use mine — and as the balloon touches down, my vertigo dissolves.
Sometimes the vertigo is so bad that I get nauseous. I’ve never actually thrown-up but I get close. To prevent the barfiness I keep ginger lozenges, ginger ale or plain old ginger on hand. It’s a good idea if you’re at the beginning of battling the vertigo monster or, later on provoking the beast.
That’s right, provoking it – deliberately taunting it, luring it out of its hidey-hole so you can slay it. I started early, spinning in my desk chair – the room always spun for longer than I did; after a few weeks it stopped when I stopped. Then standing with my eyes closed…walking and turning my head…yoga (always with ginger lozenges)…sometimes sprinting to the loo certain I was going to lose my lunch. It was worth all the discomfort. I’m not exactly as strong as I was (balance-wise) before surgery, but I’m leagues better that I was after surgery. I can skate, ride a bike, ski and I’m learning to tap dance — reawakening the beast with every new combination of steps.
This is your vertigo and your journey. Go as far and as fast as you want. And ,as I was told when I was lamenting the limitations of my vertigo, have patience and compassion for yourself…
…and carry ginger (and maybe barf bags).
I shall state silences more competently that ever a better man spangled the butterflies of vertigo.
body movin’ body movin’ A-1 sound and the sound so soothin’
Three days after brain surgery — three bizarre hallucinatory days of spinning tilting rooms, predatory plaid disengaging from its shirt to waffle in mid-air, hospital beds with trap doors and bottomless chutes — my husband Tom brought me a few things from home so I’d feel like my old self. One of them was an iPod shuffle loaded with my favourite songs – the 21st century version of a mixed tape. So I know that man loves me.
I put in the ear-buds and hit play. The opening notes of the White Stripes’ Seven Nation Army played — one of my all time faves – I smiled, I felt normal. Jack smashed out the chords of the solo and a trap door behind me opened and I was swallowed-up by the music. Electrical currents shot up and down my spine. Hot needles sizzled. Flashes of light dazzled my closed eyes. I was Jack White’s bass string, or inside the string, or it was inside of me. I never wanted it to end. Track after track, the rockers rocked on – Stones, Clapton, Aerosmith, my hands and feet tingled, more needles sizzled. Then Alicia Keys and her piano washed away the tempest. I floated on the music, small calming tingles on my face and lips, like a musical facial. Then Louis Armstrong and Ella Fitzgerald crooned about the river flowing and cotton growin’ high, and I drifted down that meandering Mississippi on a raft, the currents ebbing, flowing and swirling along with Ella’s voice and Louis’ trumpet.
At first I didn’t tell anyone; it was mine and it was special and I never wanted it go away. I woke up every morning and went to sleep every night on the magic carpet ride of my music. And while it played I was out of the hospital, out of my malfunctioning body. I was floating, twisting, sizzling through the waves of melody. A week later, when I left the hospital, my magical music ride was over. My brain was healing.
The medical term for the phenomenon is ‘synesthesia’: when one sense is interpreted by the brain as another sense. As Oliver Sacks points out in ‘Musicophillia’, synesthesia “literally means a fusion of the senses.” Like when music is experienced as colours, lightning bolts, or floating down a river on a raft.
I was home, ten days after brain surgery; I wasn’t all better, but I was getting better…And missing my trips down Ol’ Man River.
My friend Jennie visited and gave me a CD of Bach’s Goldberg Variations. She handed it over like Obi Wan giving Luke his light sabre with the cryptic words, “Bach is more that music.”
Jennie is a cellist with degrees in music and nursing, and I should’ve known that this wasn’t just a pleasant bit of music to fill quiet hours. She had a plan when she gave me that CD.
One morning I woke up shivering and weak. My spine trembled as if detached from my torso. I sat at the dining table and dug into my yogurt and my spoon ricocheted off the sides of the bowl. On its way to my mouth it wobbled and swerved through the air like a giant magnet was pulling it left, right, down, up. The steaming cup of coffee looked downright treacherous. Then I remembered Jennie’s CD.
I put the Goldberg Variations into the stereo and hit ‘play’ then stood, clutching my walker, my spine undulating and my teeth chattering unable to take another step. By the seventh track – eight minutes and 36 seconds later (I counted, timed and wrote down everything) – I had stopped shivering, my spine was still, and my headache gone.
I started to listen to music to steady myself to stand and eat, then later, to balance and walk. I wasn’t aware of music therapy or how it worked. But Jennie’s cryptic message that Bach is ‘more than music’ felt true. Maybe Bach more than others, but all music is more that just music; or it can be if you let it. Here, in the most simplistic explanation is why:
The layout and organization, of the brain’s functional regions is key. The sensory-motor region of the outer ‘walnut shell’ looking thing, the cortex, shares neural circuits with the neighbouring auditory centre where music is processed. Body movements are planned and processed alongside the processing of musical rhythm; it’s a harmony of input (music) and output (movement).
The beat and rhythm of the music helps activate the motor region of the brain and initiate movement; especially movement of the legs. Music provides cues to for timing and helps drive orderly, synchronized movement, or a kinetic melody, as Oliver Sacks and other neurologists call it. The effect outlasts the music itself and can result in neural re-wiring and a permanent change in the brain’s functioning, the brain’s healing. And the patient’s mobility. Patients with Alzheimer’s , Parkinson’s, stroke and acquired brain injuries have been treated with Rhythmic Auditory Stimulation – an exciting frontier in brain re-hab and health.
I still turn to Bach when I’m having a tough ‘brain day’; when my balance isn’t quite what I need it to be, or when I know I’m going to challenge my balance centre at a tap class or on the ski hill: I pop in those ear buds and let the music do its magic; even thought there’s no flying carpet or great meandering river.
Now let me get some action from the back section…we need body rocking not perfection…let your spine unwind, just take a risk…body movin’ (the beastie boys)
Not that kind of feet first — I mean let’s talk about feet, first. I’m coming at this from my experience: from the first time I tried to stand up after brain surgery until now my feet have been both the limiting and the liberating factor of my balance and mobility…
I failed, bombed my first balance test in the hospital; my feet just wouldn’t sit flat on the padded mats meant to break the inevitable falls of the neuro-patients that used the space. Nine years later, at last week’s tap class, my feet twisted and rolled while I tried to learn how to do a variation of the ubiquitous shuffle-step; a stomp shuffle step. After a couple of respectable tries, my right foot rolled onto its side producing a slow motion, arm flapping pirouette. Everyone pretended not to notice, or smiled like yeah, I know …except they don’t know, because I didn’t tell them that brain cancer wiped out my balance centre. I just wanted to tap to boppy, happy music. An unpredictable wild step now and then is my price of entry and I pay it gladly… then I go home and practice practice practice to get my feet on board.
In the very beginning, I couldn’t walk without a walker. And it wasn’t proper walking — more like shuffle walking. When I tried to stand or walk without the walker, my feet curled and turned on their sides. Think of a toddler careening around the house, loaded diaper wagging, knees high, feet alternately rolled onto their outer edges with toes tightly curled or up on tippy-toe. Now superimpose that image (minus diaper svp) onto a 38-year-old woman re-learning to walk . Without the soles of my feet in full contact with the ground, I couldn’t control my steps. It was ambulatory chaos.
The physiotherapist suggested exercises: walk backwards and forwards on your toes, heels and sides of your feet. Exercises, I’m sure, that have been scientifically tested for success. But when your brain doesn’t understand where the soles of your feet are, and you don’t have access to a gym with parallel bars, the exercise is rendered useless. Without my walker I could stand for a maximum of twenty seconds. I couldn’t walk, so I couldn’t do the exercises, and if I couldn’t do the exercises I’d never be able to walk…
…insert obscenity here. I really can’t remember which one I used, but I bet it had and F in it, like fffffffeeeeet!
Because there was a time when I was a pretty good athlete. Quick and nimble with an epic sense of balance. Then I remembered Miss Anna and her magic string.
Miss Anna was my stern, suffer-no-fools, bun-headed ballet mistress. Well into her fifties, whippet lean in her leotard and be-ribboned dance shoes. As we all lined up at the barre for pliés, Miss Anna would remind us of our magic strings attached to the tops of our heads. Pull your string up, long neck, back straight, shoulders down, bottoms tucked…
I’ve always believed those pliés in Miss Anna’s basement studio were the foundation of all my future balance and athleticism. And that’s where I started when I had to re-build a new balance centre. Maybe they can help yours too.
- First position: Stand with your feet together (either facing or sideways to your support/barre tall enough so you don’t tip over). With your weight slightly on your heels open up your feet from the toes as far as you can (the balletic ideal is 3 and 9, but 10 and 2 or even 11 and 1:00 is fine).*
- Turn-out looks like it’s all about the feet, but it comes from the hips the ball and socket joint of your thigh bone and your pelvic girdle.If you can’t feel your glutes, push your heels forward until you feel the head of your femur in your hip joint (you will know it when you feel it). Or, when you see it: what ‘Ballet Bob’ my first adult instructor called ‘the wrinkles of turnout’. As in, your yoga pants will pucker around the outside of your beautifully clenched bum-cheeks. (Bonus: this can result in a rock hard nut of a ballet butt) Proper from-the-hips turnout can be intense up around the hip and glute region, so if it hurts, leave it and do what works for you body — it’s already been through some stuff, listen to it and trust it.
- Plié: When/if you’re ready, move onto the plié. The demi plié: Your heels never leave the ground. Before you move check your magic ballet posture string, pull up from the top your head; lift your chin ever so slightly and take a regal inhalation. I am the sugarplum fairy…or the nutcracker prince (whichever suits you)… Slowly bend your knees keeping your heels on the floor and your spine vertical – or Miss Anna will swat your tush. At the point when you feel your heels about to lift, straighten you knees and return standing. This is a slow deliberate movement.Take your time. Dancers take eight beats to do the entire movement; four counts to the bottom of the plié and four to return.
*If turnout isn’t possible just stand en parallel, as Ballet Bob called it (BTW he introduced himself as Ballet Bob I’m not mocking the man who helped me re-build my balance centre): face your ‘barre’ feet together in parallel; as Miss Anna would say, pull your string up, stretch your neck, shoulders down, back straight…you regal ballerina you.Try bending your knees into a demi plié. And whenever you’re ready, try turning-out into first.
If my instructions aren’t clear or if you’re ready to do more (there is always more, grande pliés with heels off the ground, arms added, the other four positions, the finishing relevé) try this YouTube channel with a series of adult beginner ballet videos:
Click on ‘playlists’ and find ‘adult beginners class’ & click again.
I’ll figure out how to do a proper link soon, promise. Stay tuned!