Thursday, October 27

mrs. non-conformity

I don’t think I’ve ever ‘fit in’ – whatever that means anyway. My life has been a collection of counter cultural decisions, some of them my own and others not. My mum and dad didn’t just go for the usual two or three offspring... they took it to the giddy heights of five. Contrary to common belief, it was not because they were Catholic and scorned the use of contraception – they just liked us, and liked raising kids. My intelligent mum was so committed to us, that she became our teacher after we had tried out school. They wanted to be more involved in our lives, rather than send us off to other adults all day...and fair enough, I salute them for it. Then they dragged us from New Zealand to Australia, where we were regularly reminded that we didn’t speak normally. At sixteen, I finally donned a backpack and trooped off to school – finally something ‘normal’, except that it wasn’t. I was attending a performing arts school in Melbourne, and travelling 1.5 hours on the train from Geelong to do so. Next, I developed an illness which no one could really comprehend because it wasn’t cancer or a broken arm.
“Five! You’re one of five? That’s so many kids!”
“Did you say you’re homeschooled? So you get to wear pajamas all day?”
“ Did you just call them jandals? They're thongs”
“So, do you even do any academics at VCA secondary school?”
 “So, you’re just tired all the time?”
So, you would think that after all that (and many more which I have not the space to recount) I would be prepared for the uber counter-cultural decision: To marry a nineteen year old boy, and become a Mrs. at the age of twenty.
I will never ever forget the day Ben got down on his knee...I was still in the grips of glandular fever, but feeling slightly better than usual. He suggested that we head down to Torquay beach with our thermos and tea bags, and watch the sun set – which if you picture it, is a fairly romantic thing to do, and very fitting for someone who is sick. He was even more smiley than usual, and undeniably excitable. And being a somewhat observant person, I had a very strong inkling that tonight was the night. The tide came up, and we had to move from our cave to a different one because we were about to get stranded. We drank tea and were happy. The sun went down. It was dark – and then Ben said he was just going away from a minute to the other cave, and that I could call out if I got scared....and then he splashed through the water and disappeared. I sat there, and sang a few songs into the darkness to pass the time. Then I got scared and called out because he’d been gone too long, but he didn’t answer or reappear. You can imagine my relief when he eventually came around the corner! He picked me up in his arms, and carried me through the water to the cave.....put his hands over my eyes, and spun me around till I was disorientated. When I opened my eyes, I saw the cave alight with t-candles, laid out in a perfect love heart shape. I won’t repeat his speech to me, but it finished with him kneeling down on one knee and saying that he loved me and wanted to be with me forever – would I be his wife? By now I was crying of course, and too teary to really take note of the beautiful diamond ring he’d chosen for me. There’s wasn’t even a little crevice in my heart which doubted that he was the man I wanted to marry. 

Some candles had blown out by the time I took this photo...

Monday morning came, and after a dizzy weekend of joy, an uncomfortable truth settled on me: I needed to admit my ‘ludicrous’ action to my conventional peers. Engaged, for crying out loud...with a diamond ring on my left hand, unashamedly sparkling the announcement which I was too afraid to speak of. I thought enviously of a couple of generations earlier, where this would have been bang on perfect timing for such an event....I wished that I was 26 years old, as I had always planned to be....
“The opposite of courage in our society is not cowardice, it is conformity.” Rollo May
I did it, and I lived to tell the tale, and even strengthened my ‘courage muscle’ in the process. Some people thought I was mad not to, ‘try before I buy’ and give away my life so soon, one lady thought I was 17, so she was shocked, and others were amazingly supportive. I soon after realised that it is foolish to be afraid of being different from others – do what you believe, and come what may. I decided I only want to conform where society has it right. It’s been said many a time that the people who care don’t matter, and the people who matter don’t care. How true!
While my friends were moving in together until such a time where things were no longer so honky-dory, we were signing a piece of paper saying we were in this life together, till death do us part. We believe the most powerful thing about love is commitment...that’s what makes the strongest relationships: The love of a best friend who doesn’t bitch behind your back, the love of a parent who will pick you up from anywhere at midnight, and the love of my boyfriend who said he wanted to do life with me (even a fatigued, complicated me), and figure it out when it got tough instead of moving on to another girl. So we committed - and I have to say, this non-conformist decision has bought more closeness and joy than I ever imagined possible. Even our fights are more stable due to the lack of the “will we break up over this?” question lingering in the recesses of our minds. While the title 'mrs' is not something I'll ever adjust to, I do love having a husband and being a wife!

Friday, October 21

ramblings on antiques & degas

I have a soft spot for old fashioned and antique things – and it makes sense when I think about it; I’ve never felt that I completely fit into this era in which I live...I’m captivated by period homes with ornate cornices, vintage dresses, antique lockets, old fashioned values and hand written letters. Occasionally I do try to understand people’s fascination and zeal for modern art and architecture, but I eventually give up because it befuddles me – and then I pick up a Jane Austen novel and go back to the ‘olden days’.  
The most delightful antique shop I have ever stepped foot in, is located in the quaint town named ‘Warrandyte.’
“Ratty & Moles Riverbank Antiques”
It’s like a little rabbit warren in the shop, with many small rooms laden with shelves of old treasures. I was enthralled, as was Ben – so many rings with diamonds or sapphires, old Beatrix Potter figurines, pearls, lockets... I wished each item had a little brown letter attached, telling me who first owned it, and the story of its acquisition. I have this slightly morbid thought about the rings: Did an old lady die with her engagement ring still on her? I think I’d still wear it, but it’s ever so slightly creepy.
The Etsy website satisfies my cravings when I can’t go to Warrandyte...

One day I was looking for pictures for a collage I am making for our wall...and I stumbled across this one in my google search.

With my great love of ballet, I was quite captivated by these antique-look gold slippers - and my husband said that if he ever found them, he would buy them for me. I doubted we would ever find it...but hoped dearly.
A while later I was on Etsy searching for ‘Degas’, my favourite painter. He paints the most gorgeous impressionistic works of dancers and musicians. There I stumbled across the picture of the charm, and saw that there was only one dancing shoes necklace left for sale, and that it was inspired by Degas’ sculptures of ballerinas. So, Ben has bought it for me and I’ll receive it on my birthday, which is still several weeks away, but at least my anticipation will build. These little shoes say a lot to me...
“On with the dance! Let joy be unconfined.” Alicia Markova, Prima Ballerina

“Life is not about waiting for the storm to pass, it’s about learning to dance in the rain.”
Below is the collage I’ve been constructing, just a collection of things which are close to my heart - and lots of brown paper.

Monday, October 17


God grant me the serenity to accept the things I cannot change...

On the desk of my doctor there is a poster blu-tacked up, facing the patients. It really hit me the first time that I read it.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.  

 I was sitting there feeling far from serene; there was something wrong with me and it was interrupting life dramatically. I thought it was a nice idea to suggest serenity at the doctors, but really, I could go a bit of sympathy right now.  Don’t tell me to just get over it just like that! The line about “courage to change the things I can” was fine with me – obviously that was why I was at the doctors, to get better ASAP and do anything to bring about that end.  
I now realise that it never was suggesting me to ‘get over it’ or act as though being sick isn’t traumatic and upsetting. It was saying that while I am doing all that doctor’s suggest to improve and change my health, there is still the fact that right now I am sick – and that isn’t ultimately in my control. I am not conceding defeat, or bottling up the many sad emotions...I’m learning (incredibly slowly) to calmly trust that this is happening for a good reason - and with that belief comes peace. Peace that it doesn’t matter if I’m not ‘succeeding’, or studying at uni, or going out with friends, or doing much housework. It’s ok! Because I’d rather trust God and learn patience, serenity, compassion, understanding and numerous other lessons, than fight this whole experience and come out of it bitter and angry. I’m going to jump for joy (for hours and hours) when I am fully well, but until that day, I am striving to accept what has happened and make the most of it.

Tuesday, October 11

dark days

I woke up this morning and from turning over a couple of times and opening my eyes, I didn’t think it was going to be bad day (I used to be able to tell).  Anyway, I couldn’t afford to be sick today – I had an Alexander Technique lesson to attend, I needed to work out on the gym, practice my flute, go to Vic Roads to change my name...but my body had other plans. It told me quite decisively after my workout that I would not be going into the city but would instead be having a restful, home day. Personally, I’d like 24 hours notice. Anyway, it turns out that I am enjoying my unplanned day because I get to lie in pajamas watching The Princess Diaries, ponder what it’s like to be royalty and eat nuts. One day on the couch every now and then doesn’t get me too down. It was a very different story when every single day was like today, but so much worse.
My best friend gave me a scented diary with a teddy bear on the front when I turned eight, and so I began recording my life, and have done so ever since. This year, I’ve filled only a few pages in my diary, and most of these entries have been written when I’ve been depressed and deeply saddened from being so sick. I think back on the first 7 months of this year as the ‘dark days’. Some of the time I could clearly see the glimmer of hope and feel real joy; I knew it wasn’t going to last forever, and was happening for a reason. But knowing something and feeling it are two very different things. A lot of the time, it was like walking along in a pitch black tunnel. No idea when it would end and missing the sunshine so very much.

Below are some blah diary entries...
27th February, 2011
Tomorrow Ben goes back to uni, and work e.t.c. And I’m so scared about being at home, sick...missing my family, flute, friends, energy....and so lonely. And I fully know that studying would be worse and is now impossible for me, but I grieve for it! All my friends are going back to uni. I wish I knew why it was me and not someone else. I just am so sad, I feel like I should be all strong and brave, but I’m not brave. I’m a miserable puff of wind.
24th March, 2011
Ben and I both cried this afternoon as we come to terms with how different life has to be with CFS. Even doing one thing a day, I am barely coping. Life, just doing simple things like showering, doing the dishes, going for a walk, seeing my family – it just exhausts me and I have to go to bed. It’s not so much the tiredness, but all the other symptoms.
12th May, 2011
I really am not doing well with my diary this year! Lying at home sick really doesn’t inspire me to preserve the events of life...I used to have exciting things to record, events, concerts, happy days. Life is something of a drab grey monotone at the moment. Dull. Hope less, and now sort of dreamless. I’ve been really unwell. Can’t sit or stand without nearly fainting. Bored as hell. But I’m not going to write about all that.

 It’s not surprising that people with long-term illness struggle with my worst days, this is what life was like:
I used to wake up at 9.30 am. I tried to sleep in as long as possible, to pass as much of the day as possible – unconscious was the way to go. Ben had left for university or work a couple of hours earlier so the house was dead silent. I would go to the kitchen and have some breakfast – and then take the time to swallow a handful of large pills (which sometimes got stuck down my petite throat, and burned ferociously). Then it was time for my shower. Lifting my hands to wash my long hair had the effect of making me dizzy and faint, so I had to do this squatting or sitting. Unfortunately, the shower was so exhausting that I would put my pajamas back on, and climb back into bed, utterly wasted. At about 12.00 pm I felt ready to get up, and would nearly faint as I hopped out of bed. Now I could either type an email, listen to an audio book, put on the washing, go for a short stroll....something. But in an hour or so it would only be 2 pm. Still three long hours till I got to see a human being and use my vocal cords for the first time that day. I would be beginning to get bored, and really blah. I listened to CDs, I bought paints and I tried knitting (in those dark days I couldn’t read because my eyes couldn’t focus on the words, or watch DVDs) but the latter two were boring. I’m an atrocious painter, and can only really do pictures of badly proportioned ballerinas and toddler landscapes, and knitting is as boring as counting sheep. So when Ben arrived home at 5 pm, I had lost my entire personality, and didn’t know whether to laugh or cry. I wanted to be joyful that I’d made it through another lonely day and he was home with me and would now care for me, but I wanted to cry because it had been so awful and I’d held myself together for so long. And there was that terrible reality that when we went to bed at 9 pm, I would fall asleep for all those hours I could be spending with him, and awake to an empty bed and another long day.

Wednesday, October 5

dear doctor

I have gone to 7 doctors about my illness since I first noticed that something was dreadfully wrong with my body as an 18-year-old. Each time, I tried to control my excitement that ‘this might be the doctor who will help me’. And most of the time, I was either bitterly disappointed right then and there by their misunderstanding and belittling of my pain, or in a few weeks or months after trying their treatments and finding myself as sick as ever. Every sufferer I know has been on a very long journey to find a doctor who can understand and help. Meanwhile, the days, and months, and years tick by – with no one who knows what to do.
Doctor No. 1:
Told me that I was depressed (which I was), and this was causing fatigue. But didn’t explore the million dollar question which is this: was the depression causing the fatigue, or was the fatigue causing the depression? Ah, Doctor No. 1, you did not solve the problem. You did give me a doctor’s certificate, and for that I am grateful.
Doctor No. 2:
(GP & Naturopath) Put me on restrictive diet, prescribed vitamins and other costly concoctions. I am still on these things, not because I think they will heal me completely by themselves, but because I think my body needs every single helper it can get – and diet and nutrients are essential. Told me I had Chronic Fatigue Syndrome –Doctor No. 2, thank you so much for giving my suffering a name, it sounds so much more convincing than, “I’m not well.”
Doctor No. 3:
Told me that I was a stress-head, and asked repeatedly if I had anorexic tendencies. Told me there was nothing wrong with me physically – I just needed to have fun, eat fattening food, enjoy life (ah, but ‘tis hard when so sick). I tried so hard after that appointment; I wanted him to be right, for the cure to be that simple. I ate caramel slice, I went for an enthusiast walk each day, I skipped flute practice, I chanted ‘it’s in your head’ to myself – alas, Doctor No. 3, you were mistaken.
Had appointments with psychologist that Doctor No. 3 had referred me to – psychologist told me that being engaged was making me stressed and ill, too much pressure too young. Told me to just move in with Ben (because living together without a marriage certificate is so much less stressful). We didn’t see eye to eye, so I left.
Doctor No. 4:
Told me I had bronchitis and glandular fever. True, at that time I did. Told me to stop trying to go to uni with a raging fever each day. You were a wise doctor.
Doctor No. 5:
Horrible, humiliating lady. Told me she didn’t believe in Chronic Fatigue Syndrome or my story of being bedridden for months. Told me she wouldn’t give me a referral to see a specialist in Postural Orthostatic Tachycardia Syndrome (POTS) I’d heard of, because she had never heard of it, and was too lazy to find out what it was. Doctor No. 5 made me cry so I didn’t go back.
Doctor No. 6:
Told me she had lots of patients with fatigue and understood the numerous symptoms. Told me that it would be abnormal if I wasn’t depressed, as being couch bound is very disturbing. Gladly referred me to the POTS specialist. Spends most of our appointments talking about the big picture of life. Doctor No. 6, you are a breath of fresh air.
Doctor No. 7:
Specialist in POTS – diagnosed me with POTS and said I had the full hand of symptoms. Made me feel like my case was normal, curable, and certainly not in my head. Actually - lack of blood to my head, due to blood pooling in legs, is the issue. Helped start me on my strenuous exercise programme. Doctor No. 7, now I am a fitness junky, and feeling oh-so-much better. It took a long time to find you, but 7 is a perfect number.

Sunday, October 2


This song completely sums up the grief of being sick, and being many times I've listened to it crying out my pain. Have a listen:  
I grew up as a healthy girl, and I didn’t intimately know anyone with a chronic illness. So, I’d never really thought about what is and isn’t helpful to say to sick people...I knew that people with broken arms get tired of explaining how it happened, and that it’s sweet to send ‘ get well’ cards to others – but what about someone who doesn’t have a story, and who won’t get well in a week or two? That takes a bit of thought. As I quickly realised from being the unwell person, it’s awfully easy to say things to sick people which aren’t really appropriate or loving.
Dee’s what-not-to-say guide: 
“Are you better yet?”
No. Stress-less. I promise I’ll let you know. I’ll host a party, update my facebook status in CAPITAL LETTERS, and return to full time study when I’m better. ‘Chronic’ means long-term– that means years or even decades. And it’s somewhat awkward replying ‘No, I’m not better yet’ – what a conversation and mood killer!
“You’re looking well.”
 Ha! Good I look it, because I sure don’t feel it- that’s my not very gracious internal reaction. It carries this sting: because you look good, I doubt how sick you say you are. “You’re looking pretty” would be so much better; even a sick person can look attractive.
“What did you do today?”
 Um, well....lay on the couch, then, nearly collapsed having my shower, then, lay on the couch and listened to music, then pined after my husband who’s at work. Yes, it’s probably not the best question, because it makes the sick person feel fairly boring and pathetic and lame. Replacement suggestion: what was best/worst moment in your week? Did you get any ‘well’ hours?
“You should do this/’s not too tiring.”
 Sadly, things which don’t tire you out can be demolishing for a cfs/pots sufferer. Thankfully, I am making slow progress, but there was a time where walking to the letterbox was tough. Therefore, coming out for coffee or going to that concert is just unthinkable. Now days, I can do lovely things – go out for coffee e.t.c...But I will suffer for it afterwards and possibly during. So I might have to decline purely because of that.
I even have friends who have been told, “You should look for a job!” If only!
Complicated, you say....yes, it’s complicated because being unwell is not easy - and the way to love a suffering person is to first get inside their shoes, and then spur them on.
There are some absolutely precious people in my life who have understood in a way which shows incredible empathy and sensitivity. I treasure them because they are so rare. What a blessing!