My Life in the Slow Lane

Dear Pop,

It’s been so long since I’ve seen you. It feels like a decade; it’s been 3 years (and two months and four days) since you left. So much has happened in that time… I’m like a totally different person now… There’s so much I want to catch you up on: The Midnight Cat is now a permanent fixture in my home, I’m living with Janek now (and three others), I’ve resigned from one job and have another one now, and I’m having one of these blog posts published in a book in April.

So for a start, I turned twenty-six on Monday. I am now officially hurtling towards the outer edge of the “mid-twenties”. When you were twenty-six, it was 1940. You were married, had a daughter and another on the way, and (or so I thought when I was little) the world was eerily in black and white. You were working full-time, a fully qualified draftsman in a small firm in Martin Place in the city, living with your wife and daughter at your parents’ place in Hammond Ave. You were soon to leave for Port Moresby in the Royal Australian Air Force during the war. When my dad was twenty-six, it was 1981. He had already been married for three years, though I wasn’t to come onto the scene for another three. What is it about thinking of you and Dad as young men my age that makes me feel vaguely inadequate? The trippy thing is that the twenties are generally regarded as “the best years of your life”—full of parties, live bands, sex, drugs, alcohol, and very little responsibility—and that’s where I am (though without some of these features, admittedly). This is where you were in 1940!

So Janek and I took the plunge and moved in together. After The Proposal, it was kind of a foregone conclusion that we would eventually move somewhere together, since our respective leases ended at the same time. They were due to finish in November, but we were lucky enough to find a room in a sharehouse without really trying. We moved in during October. It was interesting. I suddenly had half as much space as I was used to, with twice as many things to cram into it. Janek, God bless him, has been incredibly patient with my messy tendencies and has even promised not to clean up my stuff because when he does I can never find anything. He has revoked this promise twice thus far, when it got too much for him to ignore.

We live with three other people: The Child, The Writer and The Clubber. The Child is gay, twenty, totally incompetent in that fresh-out-of-home way, and totally annoying on a daily basis. He doesn’t do the dishes without being asked, doesn’t clean the bathroom or kitchen at all, and his personality grates on me. The Clubber is the only girl in the house, so she has the bedroom with the ensuite. She’s a lot of fun and we really get on well together. The Writer is my favourite. He’s straight, my age, and works by day as an accountant. He’s like Clark Kent in that way: at night he is a party animal and a writer, working on a novel and writing short stories. He’s amazing and great to be around.

The fourth roomie is the queen of us all. I am referring, of course, to The Midnight Cat. After we moved I missed her terribly. I even cried on a few occasions because I missed her evening cuddles. Though by the time I moved she was spending most of her time either with me or Janek, technically she wasn’t ours so we had to make the difficult decision to leave her behind. One Saturday, I arrived home and was greeted by Janek’s enormous grin. “Guess what!” He said, beaming, “I have a surprise for you!” I was about to ask what it was when I saw a movement in the kitchen, just behind his left shoulder. I focused my vision. The Midnight Cat meowed and sauntered over to me. It turned out that Janek had been driving home, feeling miserable after spending the weekend with his family, when he decided to stop by the old place because he wanted to see her. She materialised at the sound of the car’s engine, Janek picked her up, chucked her into the back seat, and drove her here. We called the owners, of course, and were told they hadn’t seen her in three months, and had assumed she’d found a new home. She had. She now rules the house with an iron paw, which she swipes at The Child when he gets too close to her. You’d like her. I know that everyone thinks their cat is the best, but mine totally is.

I resigned from my job a month ago. After clashing heads with someone else in the organisation, Ada, my (former) manager resigned in November. I was determined not to resign on a knee-jerk, in perverse solidarity with Ada, although I did know deep down that my time there was numbered. Janek begged me to resign months before I actually did, always asking me “Did you resign today?” when I got home. It was starting to affect my health and I knew I couldn’t work there any further, which is very sad because until recently, it was my dream job. Ultimately, I clashed heads with the same person and resigned. That day was contacted by a lady at uni that I have worked with in a voluntary capacity and she offered me some casual work over the next few weeks. I have since got a little more, and though it’s all short-term contact work, so it likely won’t last, it’s a step in the right direction. The pay is better, the people are nicer, and I’m really enjoying it.

Finally, I have some big news. I received an email in October from an editor at a publisher, asking if I would give permission to publish one of my blog posts—“Reality and Truth”—in an anthology. I said yes, if I could combine it with another post—“Retraction”—and it was accepted. I’m currently trying to write a short bio… It’s really, really hard! I can easily spurt out 1000 words, like this little letter, but for some reason I seem incapable of only 150.

I miss you. I love you. I still want to call you up and talk to you, tell you everything that’s been going on. I just tried your telephone number, in fact, and it rang. I want to know who has your phone number now, but I chickened out and hung up after one ring.

Well I should get to bed. Night.

It’s a scary thought to think that right now I am living in the proverbial Best Years Of My Life™. Even though I’m twenty-five-and-a-half, I certainly don’t feel like the Grown Up™ that I am supposed to be, and I certainly don’t feel like the Grown Up that my parents appeared to be at this age. I look back at photos of my parents from back then, circa 1979, and cannot believe that I am, in a way, at the same point in my life that they were back then, given that in many ways I really don’t feel it at all.

Twenty years ago, as a child, I poured over the same photographs—they were only ten years old at that point—and seeing my parents’ twenty-something faces smiling back at me I thought to myself that they were just the same as the parents I knew, only slightly younger and presented in colours slightly faded. But they were Grown Ups, that was for sure.

But nonetheless, here I am, Grown Up™ (at least on paper), and living life smack bang in the middle of the Best Years Of My Life™:

I’m halfway through a degree at university. Although at this time of year (and again in November) I am generally loathe to talk highly of academia in any way, shape or form, I am really enjoying it at uni. Currently I have two 2000 word essays due within the next three weeks: the first about the assimilation “experiment” in relation to Indigenous Australians, the second about the ways that the Catholic Church prescribes heterosexuality and gender roles in society. Both topics I’m interested in and passionate about, particularly the second one, but it’s a lot of work!! I also have a 100 question multiple choice exam for psychology to study for. Terrifying.

I’ve got a job I love. It is very stressful lately, I grant you, because we are undergoing a process of Quality Improvement which entails us filling out 17 evidence-based competencies. This, in turn, involves us wanking on about how we do or do not meet said competencies. It’s necessary, yes, but a very stressful endeavour for all involved. Ada, my manager (so named because she bears an uncanny resemblance to Ada Nicodemou), and I have been pulling out our hair and smoking out our lungs trying to get it done on time. It’s due today (being the end of the month). It’s not done. It will be handed in, late, on Monday. We both worked late on Friday, including locking ourselves out of the office at around 5pm when we went for a smoke break.

I have a cat I adore. It seems the slippery slope has been slipped, and the cat is now, for all intents and purposes, mine and Janek’s. I was explaining the situation to my grandfather, by far the most morally upstanding man I know, and he pointed out that what is important here is that as far as she is concerned, she is ours (or, as he put it, we are hers). This means I can now take her to the vet to get her claws clipped with a clear conscience. More about her incredible cuteness at another time. Probably with photographs.

And finally, though by no means least(ly), I have a boyfriend I love. It’ll be a year in six days. Wow. Things are great; nothing much to report really, but then no news is good news. Or so they say, whoever “they” are.

So that’s me. I look back at the faded faces of my twenty-something-year-old parents in those photos from 1979, but I don’t feel as Grown Up as they appeared at the time.

May will be upon us in one week. With May comes the nine year anniversary of my various illnesses and trials. Last year I wrote a rather difficult post, Sick cycle carousel, documenting the progression of my various conditions, depression, and to a small extent my coming out journey. Below is the next part in the Sick cycle series. You might want to read parts one and two.

It seems that the ending of part two was a little bit too optimistic. Don’t get me wrong, I am happy (and I certainly was at the time I wrote that) but I can’t really say I’m all that content anymore. My back has been a lot of trouble lately, I’m downing drugs at an alarming rate, and I’m still kinda upset about Sister’s attitude in The Talk.

January 2007
After the loss of Pop, life was less sunny. I shepherded in the new year with Liz in a quiet ceremony with sparklers, champagne and Roger Rabbit. I spent most of January with The Beach Crew at Cal’s parents’ holiday house up north and on the Central Coast. My health waxed and waned, I was still popping pain killers left, right and centre, but for the most part I was excited at the prospect of starting at Sydney Uni in March.

February-April 2007
I turned 23 on the first and on the nineteenth we celebrated Pop’s birthday for the first time without him. Then I started uni and met a lot of really intelligent people who intimidated me very quickly. I had classes on three days a week, and as a general rule I was able to make the journey to Sydney at least twice a week. I did well in both subjects, gaining high distinctions in both. I enjoyed my time but the extra stress, walking, and sitting up took a toll on my already fragile health. Many nights I felt trapped, a youthful spirit caged up in an aching, ailing prison of a body.

I met Kate in March and we quickly formed a close bond. Within no time I began to refer to her as my sister, and her son, Lance, refered to me as Uncle Dan. Along with Liz, whom I consider my sister also, Kate is one of my best friends.

The day after St Patrick’s day I came out to Mum and Dad, which was, as you can imagine, a huge burden off my mind. After some initial teething problems, Mum came around; Dad didn’t give a shit from the start…finally I felt more myself in my own home.

May-August 2007
As the realisation that coming out to Sister was inevitable dawned on me, I suddenly suffered a bout of migraines at a rate of nearly two per week. Dr KHS, whom I started to believe was loosing his touch, advised cutting pain meds to see if they were the cause. Within a week or so I knew this wasn’t the case and went back to the normal dosage, however the migraines persisted.
As well as being migraine-prone, I found myself becoming depressed. The reason wasn’t clear at the time but with the benefit of hindsight I can see that it was all related to the intense sense of foreboding welling up inside me about Sister’s reaction. I sought shelter from the migraines and the depression in sleep. I was also struck at about this time that I forget how it feels to be totally healthy. Having been sick for eight years at this point, my last healthy memory was at the age of 14.

I came out to Sister on the 27th of May. We never spoke of it in any meaningful way for ten months. The migraines stopped soon after. The depression, on the other hand, continued. I felt trapped by illness and circumstance, hopeless, locked in a constant battle between my heart and my head.

September-October 2007
As the pain in my legs got worse and worse, Dr KHS switched the anti-convulsant (which I take as it blocks neural pain signals in the brain). I had every side-effect that the package warned against. I was nauseous, my knees were constantly inflamed, I was dizzy, spaced-out and all-in-all did a fabulous Anna Nicole Smith impression. I felt like a lab rat. The pain did go away after some time but the side-effects were way too much to bear. I couldn’t function at all and ultimately after a fortnight I switched back. The pain came back, followed by the vicious cycle of pain-drugs-nausea-sleep-pain. The high dose of pain killers left me in a perpetual haze. To add insult to injury I picked up gastro at some point.

I outed myself to the Family-at-Large by a rather cunning plan involving step cousins, the FAL’s natural propensity to gossip, and Facebook. Finally everyone knew and I didn’t have to lift more than a finger.

We sold Pop’s house. That was difficult.

November 2007-February 2008
I went to a neurologist; it was a waste of a morning. He was an odd little man and he told me nothing I didn’t already know. I did, however, get some stronger pain killers which made like a lot easier to deal with. I also changed anti-depressants from an SSRI (which I had been taking since the age of 17) to a tricyclic, which blocks pain signals as well as stabilising mood. I changed pain killers again and finally had a winner. CTs and X-rays revealed nothing. I started smoking weed to help with the stabbing pain in my back and shoulders. It helped too, it was a lot of fun in fact, but all in all no cause was found, nothing really helped in any permanent way… and so it continued. I struggled to get my head above water for a time but after I found my footing with the tricyclic antidepressant, my mood did eventually even out.

February 2008 onwards
I moved to Glebe into a house full of strangers. The Space Cadet makes life interesting. The Optimist and I are becoming good friends. The Guyanan and The Accountant I don’t have much to do with. Though my depression seemed to be under control, I was suddenly gripped with anxiety at having to fend for myself.

The pain in my back and shoulders continued to get worse; I continued popping pills (and have made a few faux-pas while under the influence…). As I write this, I am doped up and as soon as the effects wear off I will be writing again. Last night I got no sleep. I’m going to a chiropractor or physio on Monday. Someone has to be able to do something.

Life has to be better from this.

Your Personality is Very Rare (INFP)

Your personality type is dreamy, romantic, elegant, and expressive. Only about 5% of all people have your personality, including 6% of all women and 4% of all men You are Introverted, Intuitive, Feeling, and Perceiving.

Cool huh?

Maybe it’s the migraines, maybe it’s the pain killers, but I am feeling very introspective today. It occurred to me that my “about me” needed some updating so I started writing a list of things to describe who I am. By the time I got to number 46 or so, I thought I may as well go the whole hog and try for 100. I hope it isn’t as self-indulgent as these things can often be.

1. I pretend that it doesn’t matter to me, but the truth is I do care what people think of me.
2. I feel sorry for Aunt Agony and Rick; they seem so unhappy and it breaks my heart.
3. I enjoy helping people, but only if they are willing to help themselves.
4. If I could change one event in my life, I probably would do it; I just wouldn’t know which to change.
5. I genuinely don’t understand people who are threatened by love between two women or two men.
6. I enjoy smoking, but I regret having started.
7. I didn’t get the real meaning of ANZAC day until this year.
8. I don’t cry often, but when I do I really cry.
9. I yearn for independence, but I miss being a child.
10. I am more a cat-person than a dog-person.
11. I believe in love at first sight, simply because it has happened to people I know.
12. I had a crush on my (female) art teacher in year 9.
13. I am not scared of spiders, snakes, rodents or insects; they just piss me off.
14. I hate being treated like a child by Sister and my mother.
15. I think I look good in brown and blue.
16. I think I could pull off wearing a pink shirt, but I’m afraid to try.
17. I’ve never broken a bone in my life.
18. I genuinely don’t understand people who believe that same-sex relationship recognition is a “special right”.
19. I had two ingrown toenails removed when I was a teenager and had a panic attack each time.
20. I can go from being secure to being wildly insecure very quickly.
21. My favourite colour is bright blue, but more on the aqua side of blue.
22. I can’t help but hate pumpkin and green beans.
23. I like Tía’s pumpkin soup recipe better than my mother’s.
24. I like Grandma’s chicken livers.
25. I hate that people use “gay” as a derogatory term, but don’t often speak up when I hear it.
26. I was most afraid of coming out to my aunt, Tía, because I was afraid of her rejection more than anyone else’s.
27. When I was little, I wanted to be a “tattooist”.
28. I loved Astro Boy when I was a kid, but I rented it on video as an adult and thought it was lame.
29. I am a little scared of Sister’s reaction to my being gay, but not as much as I used to be.
30. When I was five, I thought the (male) school captain was hot.
31. Bad use of grammar infuriates me.
32. I love reading good poetry, and secretly wish that I could write good poetry too.
33. I generally believe myself to be a good writer.
34. I generally believe myself to be a good person.
35. I carry a photo of Luke, Sam and Zoe in my wallet.
36. I truly believe in marriage, just not as a political wedge or as an elite institution, yet I respect others’ decision not to get married.
37. I can’t help but believe in God.
38. I can’t help but believe in the Catholic Church.
39. I saw my first porno magazine at the age of 10.
40. I don’t drink much, but when I do I don’t know when to stop.
41. I had a crush on Cal when I first met him.
42. I hate it when people say things like “I’m not homophobic, I just hate gays”; I would much prefer that people owned their homophobic, racist or sexist ideas.
43. I feel like the black sheep of the family.
44. I believe in the concept of “the family” being important, even though I feel stifled by my own.
45. I hate Macs, if for no other reason that their mice only have one button.
46. I love reading a good novel on cold winter nights.
47. I can knit, and I’m pretty good at it.
48. I genuinely believe my mother had no idea that I was gay; I don’t understand how, but I believe it.
49. Even though I’m 23, I still have teddy bears on my bed.
50. I genuinely don’t understand people who think that God hates me, simply because I am gay.
51. A good male singer makes my knees weak.
52. I am generally attracted to blonde surfers or dark Latino men.
53. For the first year or so, I only looked at straight porn. It didn’t occur to me that gay porn existed (or that I would like it).
54. I often wonder what life would have been like, and what I would be like, if I wasn’t sick; I wonder if I’d like myself.
55. I prefer summer to winter.
56. Increasingly, I’m ashamed to be Australian.
57. I am ¼ Spanish, ¼ Slovak, 3/8 Australian and 1/8 German; I identify more with Spain than with Slovakia or Germany.
58. I love to laugh so hard it hurts my stomach.
59. I am proud of Sister’s achievements, even though she does a lot of things I don’t agree with.
60. I wish I had a brother.
61. I am afraid of never getting better.
62. I am afraid of being alone.
63. I am afraid of having access to Luke, Sam and Zoe denied me.
64. I am afraid of the end of the world.
65. I say things without judgement; if I say “that shirt makes you look fat” I mean it as a statement of fact, not as a comment on your worth.
66. I often wonder if people love me as much as I love them.
67. I get really, really disappointed when people say they will call me and then don’t.
68. I believe in the ideal of “turn the other cheek”, but often thirst for vengeance.
69. I am comfortable in the knowledge that people who use God, the Bible and religion as a basis of hatred will get their just deserts.
70. I love Australian slang like “wig-wam for a gooses bridle”, “you’ve got Buckley’s”, “pearler” and “no flies on you”.
71. I generally believe myself to be fairly good looking, but some days I feel so ugly.
72. I generally believe myself to be fairly intelligent, but some days I feel so stupid.
73. I can’t listen to Mr Jones, by Counting Crows, without a stab of pain.
74. I vividly remember meeting Luke for the first time, but I cannot remember meeting Sam or Zoe that well.
75. Even though I’m 23, I still enjoy cuddling up with Grandma on the lounge when we watch TV together.
76. I am often embarrassed by my memory problems.
77. I try to forgive people; I think I do a pretty good job at it.
78. I am loyal to my friends and I expect nothing less in return.
79. For a long time before I accepted my sexuality, I considered myself bi even though deep down I knew that was a lie.
80. I feel comfortable swearing in front of my parents and grandparents.
81. I don’t pray as much as I’d like to, or as much as I think I should.
82. I was always good at maths but hated it.
83. I generally believe myself to be a good cook, so I don’t understand why baking cookies is beyond me.
84. I’ve lived in two houses in the same city my entire life.
85. I’ve never been overseas; the only places I want to go are Madrid, to the church in which my grandparents married, and to Rome to see the Pope.
86. I considered Pope John Paul II a third grandfather.
87. I felt personally betrayed when my uncle left my aunt for another woman.
88. I have a high pain threshold for generalised pain, but a low one for localised pain.
89. I don’t really have a favourite food.
90. I love playing monopoly, even though I’m not very good at it.
91. When I get depressed I just want to sleep and forget.
92. Of all the people I know, my grandma has the best laugh.
93. Of all the people I know, my pop has (had) the most amazing mind.
94. Of all the people I know, my cousin Lala has the biggest heart.
95. Of all the people I know, my friend Liz is most like me.
96. I love the beach but hate the ocean.
97. I probably swear a little too much.
98. I have no qualms with using the word “cunt”.
99. I wish I had the kind of skin that tanned easily, instead of burning.
100. I don’t really have a favourite band, TV show or movie; I have lists.

The other day a friend, whom I greatly admire, said to me “you get worked up too much about things”. This got me thinking.

I’ve always prided myself on being easy-going; easy going people don’t get worked up unnecessarily, right? It seems that while I am myself easy going in many ways, I get impatient when others are equally easy going.

One of my pet hates is when people don’t do what they say they will do. In fact, I often take it personally when someone says they will do something for me and then don’t (usually through no fault of their own). It shits me to the point of distraction. Is this the action of an easy-going person? When this kind of thing happens I sit there fuming silently to myself and get, as my friend said, totally worked up. The person in question invariably apologises and explains that they had ran out of phone credit, had been working non-stop, had been ill or any number of other totally understandable reasons. Boy do I feel like the fucking arsehole afterwards.

What about my own (in)actions? My health being as “fluctuatory” as it is, I have been known to miss appointments and commitments. Does that make me a hypocrite? Could it be that the people who annoy me so are simply as equally easy-going as I? My mother constantly gets upset with me when I stay with Lala and Cal because I genuinely forget, or am unable, to call her as promised for whatever reason (some more “legitimate” than others). When I stay with them I always leave my departure date open-ended for as long as possible to avoid nasty situations of “you said you’d be coming home on Monday and now you’re telling me you want to stay till Wednesday”. Even with this open-ended system, I still upset her somehow because she usually assumes the standard holiday period will be one or two weeks. When I decide to stay for three or four she feels I am going back on my unspoken word.

Does this prevent me from getting worked up when I am in my mother’s position? Nope.

Does my friend’s pointing this out to me mean I will try to be more easy-going all the time, and not just when it suits me? Yep.

Part one: Sick cycle carousel.

After the watershed night on the beach, and the ensuing unpleasantness, life picked up. It was my rock-bottom. There was nowhere else to go but up.

2002
2002 was, predictably, difficult. My health improved slightly one month then bombed the next. I was dealing with losing my best friend so dramatically (and publicly) and with the rest of my friends dispersing to their various tertiary institutions. The loss of everyday-friends was very depressing.

22 February, 2002
Luke was born that February. I remember the first day I saw him. I slunk out of the car, tired and down, and went into the house. His parents brought him out and handed him around, each getting their turn to hold the baby like a pass-the-parcel. When the music stopped and it was my turn I held him and looked down at his tiny face. Although he was asleep he gripped his tiny little hand around my thumb. I realised as I stood there holding him, that he was so vulnerable, at that point in time he was depending on me for his safety. I was struck by how much I loved this little life in my hands, after only knowing of him for nine months (and knowing him in person for all of ten minutes). I saw the miracle of God’s creation in Luke. I knew it would all be ok.

I wish I could say that from that moment on, life become rosier and more palatable. But it didn’t, at least not in a Hollywood-ending fashion. School continued and I attended when I could, battling exhaustion and an acute lack of motivation. The depression abated after some time (it was more a case of becoming hardened and numb than any actual healing), and I started to smile now and then. I graduated from high school in September, accompanied by Lynne and my family. Many teachers said “it’s about bloody time” as they said their congratulations. I sat the HSC exams and got a university entrance rank of about 72. It was proportional to the amount of effort I put into studying, so I was happy with it.

2003
I had no clue as to what I wanted to do with myself after high school; the last four years had been consumed with finishing it so I hadn’t given a lot of thought to what to do once I got to that point. Without any clear aspiration to tertiary study I chose to take a year off from education (a “gap year”) and concentrate on getting better. My health picked up fairly dramatically in 2003, to the point where the fatigue wasn’t crushing anymore, but more of an ever-present, mild nuisance. I travelled down to Sydney once a fortnight to stay with Grandma, who looked after Luke on Mondays and Tuesdays and I visited Tía and my cousins often. I travelled to Melbourne for a week to stay with new friends who were involved in an ME/CFS charity and met many new people. Some of them were taking a somewhat experimental medication and they told me about it. I started taking this on the first of September, the first day of spring, and have been taking it ever since. The new medication took hold and I started to notice improvement. Spending so much time with Luke and my cousins staved off the depression until it was a mere bad-dreamlike memory. I was still taking anti-depressants, petrified of what would happen if I stopped.

2004
2004 was similar. My health remained at a fairly static level of not-quite-fixed-yet. I still didn’t know what to do at university so I extended my gap year by another 12 months. I continued to see Luke every two or three months and became involved with an ME/CFS charity group, joining the management committee in May.

2005
During 2005 my health took a dive. I became more exhausted and worn down and began noticing pain in my legs and back. I continued working for the Society and seeing Luke occasionally, usually once a month. As my health declined I was revisited by depression. It was often quite mild, certainly nowhere near as bad as it was in high school, but it did occasionally get bad. One night it did get to that low point and I cut myself again with a razor blade in the shower. This lasted for a week and ended when I saw the bloody cuts while getting dressed. It shocked and repulsed me. I couldn’t do this to Luke. I haven’t done anything like that since. I still have these scars on my arm, a constant reminder of that dark time. The pain became steadily worse and completely confounded Dr KHS. I asked him for stronger pain killers but he was reluctant to give them to me, since I was only 21.

I battled constantly with misconceptions. The FAL didn’t get the realities of my condition. I always put on a brave face and smiled at family get togethers. I resented their lack of faith in my word, they believed what they saw, not what I told them.

October long weekend, 2005
Cal and Lala took me to the north coast holiday house over the Labour Day weekend. I left my tablets at Tía’s, which meant that after the first day I began getting withdrawals. I could barely walk from the pain, barely stay awake for the exhaustion and ended up spending the whole weekend in bed or on the lounge. Cal and Lala took excellent care of me, bringing me tablets (over the counter pain killers) and breakfast in bed. It took two weeks to get back to “normal” after that.

November 2005
I continued popping pills and eventually bought the walking stick in November. It served the dual purpose of supporting my pained legs by taking weight off them (and allowing them a chance to rest to some extent) and reducing pain as I walked. It also gave me something to lean on when I was exhausted and walking like a zombie. I was diagnosed with Fibromyalgia.

January 2006
2006 came with little fanfare. I was staying at Tía’s one week in January when I got a phone call from Sister. She had found a new uni degree and was going to transfer. She was so excited about it and it was infectious. I started thinking that I would like to go to uni too. I started looking at mature age entry requirements and found out about the course at UNSW. I enrolled and got a place and began my tertiary career.

In early January, I came out to Liz, Lala and Cal in quick succession. I was so happy to finally be honest with them. My friendship with Liz, which had been on the backburner for the past year or so, became stronger and closer than ever. The acceptance of these three, whom I love and respect more than anyone else, buoyed my mood. I was finally happy.

March 2006
The course was one day a week but it took a lot out of me, especially considering that I live on the opposite end of Sydney from the campus. After the first two weeks I decided that I couldn’t do all the travel in one day, it took me days to recover from it, so I asked Pop if I could stay with him one night a week to break things up a bit. He happily obliged. My health slowly picked up. I was still exhausted and worn down but I managed. I enjoyed my evenings with Pop and I know he enjoyed my staying with him. It broke up the monotony of life for us both. Towards the end of winter, Dr KHS finally relented and agreed to give me a new medication that would block the pain signals in my brain. It began working quickly and I was relatively pain free (certainly less pain than I had experienced in a long time) but the effects wore off after a few weeks. The dosage was adjusted and while the pain has not gone away, it has lessened.

August – September 2006
The pharmacy that sells me one of my medications messed up my order, so I was without an important medication for 3 weeks. Like the Labour Day weekend debacle, these weeks were spent largely in bed. I bounced back fairly quickly. Perhaps this means that I am getting somewhere? I was still involved with the Society although I had less time to give them because of my school commitments. I decided to resign from the committee in November, so that I could concentrate fully on my school work in 2007.

November – December 2006
Pop went into hospital in mid November. I knew what was coming, but I did not get depressed. I grieved the loss before it happened, and then felt guilty for thinking that way. I visited him at least every second day until the end. My health suffered, from all the walking and all the worrying. My world changed on the 3rd of December, the day after Liz’s birthday. I lost my hero. I was half expecting to go into a deep depression when he died, but I didn’t. After the initial period of being numb I started to grieve with such intensity that I didn’t know what hit me. This, of course, affected my health and I spent a good deal of time in bed during December. Christmas was a sombre affair; my legs ached and I was exhausted. But I enjoyed it, and drank a toast to Pop at 1pm on Christmas Day (a family tradition).

2007
The rest is, as they say, history. 2007 brought entry to Sydney Uni and an increase in the pain signal-blocking drug. I was also prescribed a high strength anti-inflammatory drug which works wonders. Despite the odd pang of grief for Pop, I am happy. I am still in a lot of pain on a daily basis and I still feel run down a lot of the time but I am happy. I am content.

The night before Pop died, Dad said to him “Tomorrow will be a better day, Dad.”
“Yes,” Pop replied, “it will”.

And it still is.

This time of year marks the eighth anniversary of contracting ME/CFS. I don’t know an exact date because it crept up on me, but it was around this time in 1999. Every year at this time I reflect on my life from that point, on my history of depression and illness and the progress (or lack thereof, as the case may be) of my life. Like all good histories, this is a long and complex story. I have tried to edit it down as much as possible, but I couldn’t get it any shorter. I’ve divided it into two posts, each describing life on either side of a watershed moment in December 2001. It’s a disturbing story in many ways, but ultimately the ending is happy.

1997
The story actually starts two years before the official starting date. In 1997, I had a bad bout of what I thought at the time was the flu, but what in fact was an acute case of glandular fever. I was in bed for a week or so with a fever and all manner of unpleasant symptoms. At around this time my friend Calla was very sick with ME/CFS. I would dutifully visit her every Wednesday after sport, sit on her bed with her and chat for a few hours and then go home. I felt I understood what she was going through; I had no idea.

Autumn 1999
Around the middle of autumn 1999, I noticed that I was getting tired all the time, feeling run down and I had the odd pain in my legs. Dr KHS was dismissive: growing pains and flu he said. “Rest up and it’ll all be ok” he told me. I rested up. It wasn’t ok. I took weeks off school at a time. Upon my return, my friends were overjoyed to see me. At that time depression was another major problem I had. Looking back, I think it was partly unrequited love for a girl I was in love with and who treated me like dirt, and partly chemical. I never told my parents about the depression.

July 1999
In July, I crashed in a fairly spectacular fashion after a church weekend. Again I was feeling tired and rundown. I didn’t have any pain, but I did have headaches, dizziness and general malaise. Blood tests were ordered by Dr KHS, who was confident that a few weeks of rest would fix my troubles. Blood tests revealed that I had had glandular fever two years earlier, so he ordered strict rest while at home and minimal exertion at school. I was allowed to attend every second or third day and didn’t have to participate in sport. I sat the school certificate exams in November and passed, by the skin of my teeth, despite attending only a third of the classes. I couldn’t visit Calla as much and I reflected sombrely that I was now beginning to understand how she had felt all this time. I learnt that you can never truly know this illness unless you live it.

I met many new friends during the church weekend. The only friendship that has endured is my friendship with Liz, whom I now consider my best friend. When I first met her I thought she was a little strange but that quirkiness quickly grew on me. Liz has never known me without this illness; she didn’t expect me to get better and go back to the way I was. She accepted me the way I was, and for that I love her fiercely.

2000
As it was becoming increasingly clear that I was not getting any better with rest, Dr KHS diagnosed me with post viral fatigue syndrome. This is medal jargon for we don’t know what the fuck is wrong with you syndrome. I am ashamed to admit I was happy in a way. I wanted some attention for once and now I had it. After discussions with the principal, it was decided that I should attend school part-time, doing half the subjects of my cohort. Although my symptoms continued to fluctuate, 2000 was an ok year. My depression subsided and was promptly forgotten about. The crushing fatigue continued in waves and my memory problems developed. Peripheral friendships became strained, but my best friend Lynne’s devotion to me never wavered. A new member joined our little group, after being kicked out of his former group (such is schoolyard politics). We quickly became close.

2001
This year brought change. My subject load consisted of year 11 subjects with another cohort. My health continued to fluctuate between states in which I was barely-functioning and not-really-functioning and I was diagnosed with ME/Chronic fatigue syndrome. My friendship with the boy grew stronger and after he got his driver’s license he would come around to visit me when I was sick in bed. He’d sit on the end of my bed while I lay there, barely able to move for the exhaustion, and chat. We were close; he was kind to me. Slowly I started falling for him.

As my symptoms ebbed and flowed, so too did my depression. I became increasingly depressed at the pitiful state of my life. I was confused about my feelings for this boy and fed up with being stuck in bed so much. It got to the point where my happiness depended on his presence. When I was sick in bed and he came to visit, my mood would instantly brighten, only to take a dive when he left. This all came to a head in May when he promised he would come over and then changed his plans at the last minute. I sat in bed, crying, and took a pocket knife to my wrists. I wasn’t trying to commit suicide, although I thought about that daily; I was trying to purge myself of these thoughts and feelings I hated.

After having reconciled, I expected things to get better but he continued to disappoint me. In hindsight, his actions were perfectly justified and without malice; it was my perception of reality, warped by depression, which led me to be disappointed. I knew my depression and constant thoughts of suicide (something which I kept well hidden from my parents and friends, in general) were spiralling out of control. I was very ill, often in bed or, if I was at school, I walked like a zombie. I was still cutting myself regularly. I knew something needed to be done but I didn’t know what. I was only 17. I called my friend Brian’s mother, whom I knew from the church youth group, and asked her if she would be at church on Sunday. She said yes and I told her I needed to talk to her about something.

June long weekend, 2001
I was exhausted that day but I went to church because I needed to tell Kathy my truths. After the service she caught my eye and smiled a smile which said “ok Dan, what’s on your mind?” I walked towards her and she led me outside with her. We sat on the ground and she said nothing, waiting for me to begin. I told her everything. She nodded sagely as I told my story of exhaustion, depression and dependence on the boy. She drove me home and held my hand as I told my parents about the depression and the cutting. Dr KHS started me on anti-depressants and my moods slowly evened out. I had a psychological evaluation the next week (I was diagnosed with moderate depression) and went to see a counsellor. The counsellor was, for the most part, totally useless. I didn’t feel it was getting anywhere so I stopped going. I started smoking as a way to deal with stress and depression.

December 2001
The watershed of my depression, illness, and life in general came in December 2001. I went to Byron Bay for schoolies with my group of friends, even though I was still one year from graduating. On the first night everyone who was over 18 went out, leaving me, the boy and his girlfriend alone in the house. They snuggled on the lounge and watched TV and I seethed quietly, my depression and jealousy bubbling away below the surface. I took a full bottle of vodka to the beach and downed three quarters of it in the space of half an hour. That night, after being “rescued” from the beach, I told him I loved him (I was convinced it was platonic, but now I know better) and that I hated him when he let me down all the time.

He didn’t speak to me again after that week.

Part two.

… but I’ll always love you.

Sister has gone to a three month residential leadership course for World Youth Day 2008. This means I can breath easily for the first time in a long time.

This song, I may hate you sometimes, by The Posies sums up our relationship beautifully. The problem with any relationship like the one between Sister and I is that it is so multi-dimensional, so multi-faceted, that it cannot easily be explained. Nonetheless, I’ll give it a try.

Here we are, only been a couple of years, maybe longer.
Yes it’s true, I’m no good at being the strong man, you’re stronger.
But I think maybe you should take a good look at my feelings.
Can’t you see I’m another one just like you, a human being?

While she’s always been difficult to live with, it’s only the last few years that she’s been on the religious warpath. She’s always been a force in this household, stronger than me by far. In many ways I am at the bottom of the food chain in this house. Usually I don’t mind, to be honest, because everyone leaves me alone to do my own thing. The problem with this setup is that when I do try to assert myself, it often takes Mum and Sister by surprise. Mum and Sister always, for example, ask Dad and I to get them things–a glass of water, a piece of paper, a pen–even when they are closer to the object in question. Dad and I are the servants in this house. I could be lying in bed, resting and watching TV, and get called upon to get a drink because Sister doesn’t want to get up off the lounge. I’ve tried to explain the disparity in this arrangement but she always gets shitty with me. So I just do it, to keep the peace. Similarly, I try to explain my point of view on more existential questions and she either doesn’t get it or brushes it aside. Take, for example, the time that I stood up for gay marriage: Sister has the pope on her side, who can argue with that?

I don’t want to have to sacrifice to have to get along
I don’t ever want to be the one to say I’m wrong
I may hate you sometimes, but I’ll always love you

So often times I just relent and say “Yes, sister, you’re so right, what was I thinking? That gay people should get the same rights as everyone else? How stupid of me.” I feel like a traitor to myself and to all of the gay Australians fighting for equality, but at least I won’t be arguing in circles for an hour. She seems unable to see new points of view at times.

What did you say? It’s so hard for me to remember what you meant.
How did it happen? Was it preconceived or a complete accident?
I still recall we were once happy together, smiling faces.
But things have changed and now you’re only happy when I remember where my place is.

When we were younger we weren’t a picture of perfect siblinghood: we fought over little things like any siblings do. I called her ugly, she called me stupid. We loved each other fiercely: I protected her at school when she was teased because her teeth were crooked and she let me play with her teddy bears. There are still vestiges of that childhood connection today: she is a strong advocate for ME/CFS, constantly informing her friends about it, selling merchandise to raise money for ME/CFS charities and freely giving her time to the ME/CFS Society. There’s no question that Sister is a generous and compassionate person, it’s the other dimension of Sister that I don’t like.

I don’t want to have to live up to your expectations
I don’t ever want to be the one to end relations
I may hate you sometimes, but I’ll always love you

That dimension is that she expects me to be like her: to believe her beliefs, the way she does, and to do things the way she does them. If I take something out of the oven using a tea-towel instead of an oven mitt she will tell me I’m doing it wrong, I should use an oven mitt. The irony is that one of the few things we have in common is our attraction to men yet that commonality is not going to be accepted with open arms. I recognise that I am part of the problem here. She expects me to believe as she does because I haven’t given her cause to doubt that I do believe what she does. After years of lies and half-truths, digging myself out of this hole isn’t a simple process.

Do you think you could treat me
Like somebody special
I can’t be everything to everybody
Could I at least be something to you?

Few people have the ability to make me feel like shit like she does. Perhaps this is because I love her so? I’m a people-pleaser; I don’t want to talk myself up too much but I do think I am a pretty selfless person. I’d much rather help others than help myself. In some ways it’s a strength, in others it’s a flaw. She treats me like a child. If I spill a glass of water she’ll yell at me, “Daniel, be more careful!” She doesn’t see that a spilt glass of water is no big deal. You just mop it up and get on with life.

Don’t look so surprised, I’m a little smarter than every other weakling.
Say no more. I know exactly what you’re going to say without you speaking.
A familiar phrase. I’ve heard it said often before, “Please forgive me”
Don’t be a fool, If I can’t live with myself how could you live with me?

Sister often realises she has hurt me after the fact, and asks for forgiveness. I always give it. I have no problem forgiving her, that is what you do for people you love. I just wish she would learn from her mistakes; she is always seeking forgiveness for the same transgressions. She doesn’t seem to learn. But then all humans are like that, creatures of habit. I know her so well I can predict her reactions to nearly any situation. Most, that is, except the most important one of all–my coming out. I have no idea what she will say or do. I can imagine several possible scenarios, but I can’t ever decide which is most likely to happen.

Now that I’m filled with emotion you’re dispassionate
You only live for yourself while I live to regret
But don’t ever think that I could easily forget
Because I’m damned if I do and I’m damned if I don’t
I said that I would but now I know that I won’t
And the chance of being right is looking kind of remote

So what to do? If I come out she will react badly. If I don’t come out, I will be living in this prison of lies forever. Until recently I was willing to just let it go, tell her nothing and live in a state of semi-peace with her. But I’ve realised that that won’t serve anyone. She will be clueless and I will be anxious all the time. It’s time to grow up and be selfish for once. I need to get out of this prison of my own making and start living life for myself for once.

I may hate you sometimes but I’ll always love you

So what it all boils down to is that I love her and hate her at the same time. But that’s not entirely true, if I’m honest, is it? I don’t hate her. I hate her actions, her beliefs, her way of doing things. I hate the way she treats me. I love the way she loves me. We are just so different that friction is inevitable. Something has to give though, and soon.

I may hate you sometimes but I’ll always love you

So the plan is this: come out to Mum and Dad while she’s away and then (hopefully) come out to Sister with their support once she returns. I’ve always wanted to tell my parents separately but I’ve never had a chance before. This is my golden opportunity.

No matter what happens, she will always love me. Maybe that’s the problem?

… make me red cape; I want to be superman.

Yesterday’s post was a little more depressing that I had originally envisaged. Here are some happier memories that I have remembered since last night. I didn’t have a very happy existance in my early high school days

Eighth grade. Library. English class.
We were all sitting in the annexe of the library reading silently. The teacher, a man who resembled Peter Coombes with startling clarity, sat at the front. I was reading a book which wasn’t in and of itself funny. The main character of the book, a fifteen year old girl, was invited to the house of the hottest boy in school. He was rich and they had a large house with a large garden, complete with tennis courts. It was dusk and he suggested they go to the tennis courts to play some tennis with his parents. She had never played but thought “how hard can it be” and agreed. She was standing there, in the twilight, raquet poised for action, when suddenly something came flying at her from the darkness. Assuming it was a tennis ball, she swung the raquet at the object. It wasn’t a ball. It was in fact a fruit bat, which now hung limp and lifeless from her raquet. The girl hid the raquet behind her back and tried to shake the stunned fruitbat off. It clung fast. She was mortified. The hot boy and his parents were haughty and pretentious; this was not the propper way to play tennis. She wanted to die from embarasment.

I snorted. The silence of the room was oppressive after my sharp outburst. I laughed silently, both at the story and the resonance of the snort. A short peal of laughter escaped my lips, clenched tightly closed immediately after to prevent further embarasment. I was turning an alarming shade of crimson as I tried to quell the laughter that was building up inside me so I covered my face with the book. The room was filling with the murmurs of the other kids; I could feel the teacher’s stare on my forehead–the only part of my head exposed to the light of day. I was quivering in my seat from unrequited laughter. It wanted to get out. Some minutes passed with me quivering from laughter, crimson-faced, behind the book and my classmates whispering to one another: “what’s wrong?”, “is he ok?”. One friend thought I was crying. My eyes were watering. I let out another short laugh which could be legitimately mistaken for a cry. I got up, gasped “sorry” in the general direction of the teacher, and ran from the room. My concerned friend followed. When I got out of the library I let loose and burst out laughing. My friend didn’t know what to think. After the laughter subsided and I wiped my eyes dry I returned to the annexe with my proverbial tail between my legs. After class I tried to explain the situation to my annoyed teacher. “I’m really sorry about that sir,” I said, “you see I’m reading this book and the main character was at a guy’s house playing tennis and …” I could get no more out as the laughter started again. He seemed to understand.

Eighth grade. Quadrangle. PE class.
My friend and I were arguing. It was a fun kind of argument; I don’t remember what it was about but it was the kind where we were both laughing the whole time. The argument reached a crecendo of “fine then!”, “fine then!”, “well I’m going!”, “good! see if I care!” I turned to sweep away magestically and landed flat on my face on the cement. My friend had sneakilly taken a half-step forward and put her toes on mine so that when I went to turn and sweep away it turned into more of a swooping motion. I lay on the ground, winded, laughing uncontrollably. Being winded, no sound came out. Everyone around, including my friend, thought I was terribly injured. I could hear their concerned voices around me as I fought for my voice.