Once upon a time, there existed a simpler way of life.
If a little boy wanted to become a musician, his parents would seek out the very best musician they could find, and he would study his instrument under that tutor’s guidance and wisdom, until he himself was a master. There weren’t exams, there weren’t bachelors and diplomas, but there was a thirst to learn and grow and master. Knowledge and arts weren’t passed down en massein lecture theaters, but in the intimate setting of one musician sharing his findings with a younger, aspiring musician.
The Music Lesson - by Gustav Wentzel
And was this antiquated technique successful? I think of Bach, Mozart, and Beethoven...I’d say it certainly was.
Back to the 21st century...When I first became ill as an 18 year old, I was firmly grounded in today’s mindset. I had achieved decent grades in school, and the next logical step was to embark on my Bachelor of Music. There were two main reasons: I wanted to continue studying the flute – as lessons cost around $100 per hour, I really couldn’t afford to learn unless I was at university where this fee is included in the degree. The second reason was that while I dreamt of performing, the reality of needing to pay for food and clothes meant that I’d probably have to teach the flute. And to teach, one needs to have a qualification.
blah. blah. blah.You know the next bit. My body wasn’t impressed by the long hours at university...the early mornings, late nights, stressful exams and performances. It got progressively more fed up with me, so I took a year off to let it settle down.
2012.I felt ready to experiment with a return. I was delighted to be studying the flute with an older lady who is a wonderfully experienced flautist, and whose spirit of music is so huge that it fills up the whole room. She is so very animated and rich in musicality; I feel I’ll explode with excitement over what she is passing down to me. I wouldn’t be bored if my lessons lasted for 12 hours at a time.
As my doctor aptly put it, “You probably did a little too much, too soon. But at least you tried and found out where you’re up to.”
The experiment was positive: I got a result. The result was that I’m still not well enough for the pressures of university. But there was one problem: I needed to withdraw from university because I was so ill, but I was having a love affair with the flute, and I couldn’t bear the thought of stopping lessons. How could we afford for me to continue? We looked at our budget...and squished... and squeezed... and maneuvered ...and decided that we could make it work. We would find a way.
Here’s a fascinating piece of information: I haven’t shed a tear over withdrawing from university. Three years ago I probably would have sobbed into my pillow for a month straight at the thought of ‘giving up my dream’. It's a big change of mindset yes, but I am excited: I get to focus on exercise and rest, which is what my illness requires of me. I get to be a wife and look after my favourite man, I get to invest in people...and I get to study the flute with a master, just like musicians did in an age gone by – passing down knowledge and skills from one to another. My education continues, without that hoop and hurdle jumping so crucial to 'the system'.
To quote my teacher:
"But I must say, I think that a Uni course of any sort can actually be an obstacle to true progress. The reason? Your life is mapped out for you, and you are not necessarily following the most constructive path. It's the difference between a river flowing freely and naturally, and a man-made canal."
There are so many things I’d like to do! I might join an orchestra, or a choir. I’ve done my AmusA diploma; I might do my LmusA too. I might teach the flute. I might try and work a few hours a week in an organic shop which I love. I might learn to cook...or sew.
I'm striving to learn and grow and love to the best of my ability.
When should I let go of something I’d set my heart on? When is it too costly to be worth the sacrifice? What will I do with my talents with so little energy? What does tomorrow look like?
My husband is in his final year of his degree. We often talk about next year when he will be an intern in a hospital, and the following year when he will be a fully qualified Radiographer. I get clucky thinking about his graduation and how proud I will be of him in his black gown....we marvel at how it will feel to have an income at last...how we’ll save for a car, and a home loan, and a holiday...
We have plans and dreams in the bucket loads. Mainly because we assume that he will be alive and capable of all those things. We used to have the same kinds of plans for my life...I was going to finish my Bachelor of Music, do my Honours, possibly go overseas and then work for several years before trying to have a baby or two.
But when we make plans, we really don’t know for sure if they will come to be. The future is so unknown, so utterly out of our hands.
I honestly don’t know what I will be doing in 6 months time. In the past few months, I made huge progress with my health and it looked right for me to go back to university and re-sit my 1st Year flute recital. I was keen to get out of the house after a year of being homebound, keen to have flute lessons and square away the first year of my degree. Infact, I am keen! My whole heart yearns to do this but I don’t know if my body is feeling the same. I wish it could talk to me.
*Croaky voice, “ Deee-ee, I’m not ready. It’s too much...”
I’m only two weeks into this experiment, but so far I’m rather befuddled. I hope my next post will be announcing that I am feeling great and loving being back, because right now I feel that my body has regressed – maybe I’m having a relapse?
Since returning, I have been feeling really unwell. I’ve had migraines every evening, afternoon sleeps, insomnia, nausea, weakness...a whole list of yuckies. To be perfectly honest, I’m ok with feeling like that – if I can stay home on the couch with a blankie and a cup of tea. It’s hard, but it’s tolerable. What I don’t like is lying in bed knowing that ideally I would be at class, or practicing. That’s stressful.
It could be the antidepressants I recently went on, but now it feels like POTS/CFS. And it could be that my recent virus has given my body a bit of a shake. But I don’t know, and only time will tell me. If it turns out that going back to uni has retriggered my illness, maybe I won’t try to finish the remaining two years of my degree. I never thought I’d write that. I thought I would just get better, 100% better, and carry on where I left off, with a few lessons in patience and hardship under my belt. But lately I’ve been thinking that maybe this journey will be longer, with more peaks and troughs than I expected.
It’s a quality of life issue. I could potentially limp through my degree at a painstakingly slow pace, and hobble up to claim my certificate five years later....before crawling back into bed for the next few. But I don’t think I want that. I think I’d rather go, “Alright, things haven’t panned out according to my dreams and plans. I can accept that, and I’m going to pursue a life I can cope with.”
And then I wonder, what could I do with my limited energy? Could I make cards and sell them at markets? Could I write? Could I invest at home more? Could I still have flute lessons and practice?
Could I learn contentment?
"It is a big mistake to boast about what you will do tomorrow because there is really no way of knowing for sure what will happen."
I’m in a dream- like state today. Last night I was still awake at 3 am, pleading with my mind to quiet itself and let me doze off. The night before I was begging my migraine to respond to the ibuprofen and paracetamol I had given it. The hours passed by so very slowly, and I grew tired of the music that played over and over in my head while my fingers played the tune on my imaginary keyboard. “Stop. Okay, imagine a beautiful field with yellow and mauve flowers covering it...you’re lying there, feel the sun on your body and let your muscles release”......Part way through this relaxation exercise, there it was again: that piece of music I had listened to over a hundred times already since hopping into bed. Please! I’m just asking for a vacant mind, why is this not possible? My fingers are busy playing the tune again without me realising, and I feel myself become frustrated. I stop them, and enjoy a second’s peace. Barely a thought hangs in my mind, and then in the blurry background I hear the strains of the music....and a conversation I’m weary of re-visiting. I’m infuriated. How many hours do I have to play this game of stopping the ceaseless noise inside me, to have it automatically restart seconds later? I wish I had some kind of control over my mind so that I could stop losing this battle. Sprinkled among these thoughts are fears for the following day – how will I manage on so little sleep? I tell myself that rest is good for me and yet I barely believe the words I have just pronounced.
I could go some help right now...
This mental battle is one of the reasons I decided to go on anti-depressants...alongside panic attacks, depression and generally feeling overwhelmed. It was only in the past 6 months that I started to open myself up to the possibility of going on medication. Before, I thought I could manage the mental side of life with counseling alone, learning strategies to deal with myself – my post illness self. I feel that I was fresh and optimistic about how much I could improve without needing drugs. I didn’t want drugs. I didn’t want to be dependent on a medication to alter the chemicals in my brain for me to be OK. I saw that as a cop out.
Something changed, gradually. I became wearied by my mind and the toll it was having on me. I desire relief, even just a small reprieve from the fears and obsessive thoughts. Some peace, to simplify my life, to give me a chance at coping. Before I thought that learning a deep breathing technique for when I started hyperventilating was help enough, but now I am dreaming of not hyperventilating in the first place...not crying so often....even having a still mind from time to time. I know the meds won’t eliminate these things, but just a reduction in intensity would be good enough for me, especially as I work out the core issues with my psych.
I have started a new drug because the last one had side effects I wasn’t so keen on. The following warning was on the information sheet:
Persons taking this medication may be more likely to think about killing themselves or actually trying to do so, especially when first started or the dose is changed.
Admittedly it was not what I expected to see on an anti-depressant. Surely it was supposed to do the opposite?! But fear not, I haven’t experienced any such thoughts. I’m just listening to Bach’s Brandenburg Concerto’s and drinking English breakfast tea – and I find it hard to believe I could feel suicidal while so pleasantly occupied. The fact that even that warning and all the possible side effects didn’t put me off show me that I really am quite desperate for some help. And so now I must just wait and pray that this one is a good match for me. I hope we’ll do very well together!
I used to say that, whenever such topics arose in conversation. We had a pool in the backyard for the scorching days, we were free to do as we liked for weeks on end, my birthday and Christmas fell during this period, water melon was regularly served, dresses and shorts could be worn....and I could live a goose-bump, chilblain free life. Nice.
Now I shudder when I hear people say how much they love the hot weather. I look at them blankly. Usually I am capable of making at least some small talk, and surely ‘the weather’ is the most elementary of topics - but their statement fills me with strong emotions. I told the lady in the shop yesterday that I didn’t like hot weather, and she gave me an odd look because she can’t think of anything better. Another lady asked me if I was going to beach. Not the beach, but feet in a bucket at home, if that counts. I went on Facebook, and saw that an acquaintance had written, “37 degrees today, bring it on summer.” And that status update had been liked by numerous personages. But all I can think is, what is to love about lying in a dark room beneath a fan?
I used to practice my 3 hour quota on a 38 degree day, taking dips in the pool between sessions...before CFS moved in. Today, I picked up my flute, determined to play. My flute felt a lot heaver than pure silver – I blew one wispy low G, felt my head sway and leaned back on the couch. I put it away in its case, marked with my sweaty finger prints. Still light headed, I get up thinking that I should just clear some things away in the kitchen. I wonder what my feet have been filled with. They are bulging, veins exploding – in shades of alien green, purple, and cherry red. I walk slowly towards the kitchen (a very short stroll in a one bedroom flat), as though I am 3x my weight and feel sorry for the contestants on Biggest Loser. Once there, I feel like I need to rest – my body is lethargic, swaying and weak. I want to lie on the cold tiles and cry. Sob, because I am feeling so ill, and there is no relief. There is no air conditioner. We can’t drive anywhere because the car is always 10 degrees hotter than the house. There is no ice cream – sugar gives me an enflamed throat. There is nothing to fill the hours with, because I’m too sick to stick at anything for more than a few minutes. I watch some Anne of Green Gables, but have to stop because my headache is blurring up my vision. I check the weather, for the 11th time today. The cool change has not been brought forward, and tomorrow is forecast to be 37 degrees. It will be precisely 6 hours until the sun sets and there comes some minor relief in temperature. I could fit in the fridge if we took the shelves out. I could have a cold bath if I could be bothered running it. But I’ve lost my motivation, and I’m too tired to search for it.
I wish I’d kept my eye on the weather forecast this week. I had no idea we were headed for a hot spell. I had planned to go to an MSO concert with Ben, practice my flute and clean the house. It’s so odd that the weather can cause me to go from reasonably well, to reasonably ill within a few hours – and completely curtail my plans. I think it shakes me up because it comes down to the core issue I struggle with:
I’m not in control.
I don’t get to decide the weather for Melbourne. I don’t even get to vote for when the hot days fall. It’s totally out of my hands.
So it’s really the perfect opportunity for me to practice letting go of my plans and making the most of what has actually happened. Three years of illness...you would imagine that I would have learnt to let go of my agenda, and embrace the life I do have. But I seem to need a regular crash course. I forget so quickly. So here we go for the hundredth time: today has not gone to plan, but it’s a day so I’m going to value it.
We like ‘before and afters’. We like it when the after is better than the before. Like when that pimply, unruly maned girl is transformed into a sleek haired, white teethed, glossy lipped wonder. “That’s better”, we sigh as we gladly rest our eyes on the appealing yet unnatural sigh before us. Uniqueness has been whisked away, and exchanged for a tantalising package of ‘perfect’. Ahhh.
Here are ten commandments I held to, before.
1. Thou shalt be perfect or at least try to be.
2. Thou shalt try to be all things to all people.
3. Thou shalt not leave things undone that ought to be done.
4. Thou shalt do as much as possible.
5. Thou shalt always say "YES".
6. Thou shalt not schedule time for thyself as this is lazy.
7. Thou shalt always strive to work harder at school and flute.
8. Thou shalt be vivacious, tidy, elegant and attractive at all times.
9. Thou shalt feel guilty if standards are lowered
10. Thou shalt not be weak in anyway
I realise now that I tried to follow these commandments to the letter for a few too many years. I am quite attracted to them. They seem to promise wonderful things. I see elegant people, I see helpful people, I see hard workers and want to be all those things, all the time, no exceptions. Perfectionism. Workaholism. I slip into these commands with ease, and ignore their folly and impracticality. But I have had to snip them up and chuck them in the bin because they are no match for me physically or emotionally. It’s not a healthy relationship, and I’ve cut ties...but the attraction remains, and I have to fight it every single day.
I found the following on a chronic fatigue syndrome site and it was love at first sight. I suggest printing off the following rules and blu-tacking them up in the toilet so that you read them a few times each day:
Ten Commandments For Reducing Stress
1. Thou shalt not be perfect or try to be.
2. Thou shalt not try to be all things to all people.
3. Thou shalt leave things undone that ought to be done.
4. Thou shalt not spread thyself too thin.
5. Thou shalt learn to say "NO".
6. Thou shalt schedule time for thyself, and for thy supporting network.
7. Thou shalt switch off and do nothing regularly.
8. Thou shalt be boring, untidy, inelegant and unattractive at times.
9. Thou shalt not even feel guilty.
10. Thou shalt not be thine own worst enemy, but thine own best friend.
This doesn’t rule out working hard, being dependable, striving towards something....it just enforces a rational, realistic and healthy approach to life.
I have not got these commandments sussed. Yet. I still think that having a piece of chocolate by myself is un- self-controlled, I still say ‘yes’ to all kinds of things which stress me out, I still agonise over leaving the house with bad hair or outfit, I still apologise for being blah to people because I’m tired, and I still feel guilty for relaxing some days....But I struggle and fight, and consciously decide to do what I know to be right. And I imagine that if you ask me in a decade how I am going with these new life rules, I will still be struggling against my natural desires – but hopefully, I will be much more relaxed and dare I say it... healthy.
I have to turn back the clock by 14 years to begin the story of my missing hair. I’m seven, and in most ways I am exactly like every other 7 year old girl. I play the piano (poorly), I take ballet lessons, I hate maths and mushrooms and prefer dolls and story writing. The only odd thing about me is that I like to sit on the brick wall outside our house, picking at the moss. And I don’t know this is odd, or what it will lead to. I could stay there for an hour, just pulling out those hair-like growths and letting my thoughts wander over the day, over life.
I am terribly embarrassed and distressed when my family says to me at meal times, “Your eye brows are looking moth eaten Dee...have you been pulling them out?” I furiously deny the accusation. Someone suggests that I am using tweezers, copying my mum. Which isn’t at all true. I’ve never touched tweezers, and I’m not sure why I’m missing so many eyebrows... it’s not a conscious decision to remove them, certainly not an attempt to thin the crop.
One morning on camp, my little friend comes up to me. “Oh Danielle! You’re missing eye lashes! How did that happen?!” I freeze inside. I feign surprise. I say that I didn’t know I was missing them, and that they must have fallen out in my sleep. I had been lying in bed the night before, pulling out lash after lash for no reason other than that I felt like doing it.
I only knew two things about my missing hair at this stage:
I do something which other people don’t do.
This thing shocks people, so I must cover it up.
The only thing which concerned me, was how appalled people were when they observed missing hair. Their reactions seemed to accuse me of doing something naughty which puzzled me. To me it felt like sucking my thumb, twirling my hair – something mindless and comforting. And mostly I was unaware, lost in thoughts, considering things over a thousand times.
By the time I had reached my early teens, my little oddity was developing into a big ogre. It seems that I was just growing into my habit rather than out, and it was poised to wreck havoc with my life. With my age had come a hearty dose of self awareness. No longer was I blissfully unaware of my odd habits and my patchy appearance. I was painfully conscious of my problem. I was conscious that I was the only person in my acquaintance with such an issue, and therefore the only person in the whole world.
I had the very thinnest line of eyebrows. Just a scattering remained. There were a few lashes growing out of my eye lids – only a few. But the worst thing was the right side of my head. I had recently run out of hair other places and taken to selecting the thickest, darkest strands of my long hair to remove. It wasn’t the hair that I wanted, it was the root. I would stick my prize possession, a juicy root, in a place to save it - a book, a table...and then keep pulling, always hoping to find a better one, never giving up.
I had never questioned my sanity until this point. But one day, I heard something which terrified me to my core. My mum had a friend over, and they were discussing the friend’s young child. My memory has stripped me of all the details but the gist of what they said was that the child was losing hair, by twirling it and pulling it out. I heard them say something about ‘psychological problem’.
As a 13 year old, I was naive and uneducated about that word - Psychological. To me it meant insane, mad, not-quite-right. This little child was losing hair, and it could be a psychological disorder.
I pull out my hair by the handful, therefore I am insane.
This tiny discovery about the nature of my issue plunged a weight into my heart. A weak sickness seemed to spread right through me. I was crazy! If I had wanted to Google-search my condition, this was the end of that notion. I didn’t want to know the details of my problem, I just needed to stop right now and let the hair grow back and become ‘normal’.
Unlike other habits I’d managed to stop, this one was resistant. It was cruel to me in its fiery refusal to be gone. I tried wearing hats, making promises, praying hard...but each day there would come a point where the only thing I wanted to do was pull out my hair, and the urge was so overpowering that I gave in.
“Just one hair”, I would promise myself. But that one hair wasn’t good enough. It didn’t have a big enough root. It hadn’t fulfilled the cravings inside me. One handful of hair later, I would drop my loot in the rubbish bin, looking at it with repulsion.
Life had become increasingly anxiety provoking. My balding appearance was now impossible to hide, despite my earnest attempts with hairstyles and hair spray. I avoided swimming at all costs, as wet hair showed the baldness far more than dry. This was very challenging considering we had a pool in the back yard, excuses and more excuses. I steered conversations with all my social ability away from topics relating to hair, terrified that someone would mention it and shame me to my very core. I lied to hair dressers outright about the reason for my missing hair (on the very rare occasion that I actually went). I cried night after night about the ballet concert which was coming up, where we had to have our hair in braids: mine wouldn’t go into braids, and then the secret would be out...and I would ruin the whole concert by not being able to have matching hair. I lay awake inventing convincing stories:
“I’m taking a medication which makes it fall out.”
“My hair is just falling out and I don’t know why.”
“My friend cut my hair which is why it’s so patchy.”
In bed I would realise how miserable life had become, how much I wanted to stop. I was so young that it never occurred to me that there could be help out there, that problems can be solved. To me, it was my burden which I had to bear, and ‘trying harder’ was the only solution.
By the age of sixteen I had a little more control than I’d had earlier on – and for a couple of years I went almost free from my addiction. Because I never pulled in public, my being away from home from 6.30 am – 5.30 pm proved to be very helpful. I simply didn’t get the chance to pull it out. The problem waxed and waned over the next few years. It still caused me terror whenever someone wanted to talk about or touch my hair, but it wasn’t half so hard to conceal.
My first year of university arrived, and I was sitting in an aural class watching a girl take a pair of tweezers from her bag to pluck an eyebrow. Her eyebrows looked very sparse. She seemed rather intent on removing the hair that she had decided on, and pulled until it was gone. I couldn’t tear my eyes from her. I knew I had just met the first person in my entire life that compulsively pulled out their hair. Gradually we became better acquainted, and one day in a painfully drab lecture on Music Theory, we sat at the back of the theatre sharing stories about our bizarre compulsive addiction. Our laughter was uncontrollable; I was weak with joy and relief at finding someone just like me. She had seen a doctor and knew that our psychological disorder was called Trichotillomania. She wasn’t insane - she was lovely, funny, and quirky.
I went home and researched it, finding that 4% of people suffer from it. It’s more common in females. Sufferers often suffer from depression or anxiety as well. Finally my condition was out in the open and I began to deal with the years of terror it had given me. I went to a psychologist to learn strategies, and then an Alexander Technique teacher. It went from being my naughty addiction, to a real problem for which there was help and support. I am now the happy owner of a full head of hair, and while I will probably never be urge free, I am armed with strategies to control it. I have finally learnt that ‘psychological disorder’ doesn’t mean ‘mad’, and as my psychiatrist recently assured me, if I don’t have any mad cousins or great aunts it’s rather unlikely that I will ever lose my marbles. Thank goodness!
