Category Archives: Diagnonsense

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I Was A Teenage Hoarder

The past few days, I’ve been watching Hoarders on Netflix, a show I’ve never seen before as I don’t bother to have cable.  I’ve been horrified, saddened and thrilled at successes, but there’s another emotion I feel by episode’s end:  empathy.  I could have been one of these troubled individuals, in an alternate version of my life.  I still could be, I suppose.

Hello, I’m Amber, and I’m a bit of a packrat still, but once upon a time, I stood on the precipice of being an out and out hoarder.

Growing up, I remember having a lot of possessions as a young child.  My parents had a fair bit of money, and they loved to spend it.  When I was seven or so, we bought what I call a ‘mini-mansion’, a place big enough that my parents’ friends and their child lived quite happily in the finished basement, joining us for dinners, while I roamed upstairs between my bedroom and my toy room.

Yes, I actually had a separate room just for my toys.  It was meant as a cleanliness strategy – keep all the kiddie clutter to one messy room and the sleeping area neat – but it really seems pretentious now.  I guess they just didn’t know what else to do with that other bedroom.

Our fortunes changed after my dad’s major accident.  Unable to work for well over a year, my mother needed at home to nurse him, and the worker’s insurance board taking their sweet bureaucratic time to settle his disability claim (it was a job injury), we lost our house, our cars, and our dignity, as we became effectively homeless.  My dad filed for bankruptcy, and after couch surfing with relatives, we eventually lived in a shithole of a motel.  I spent a birthday and Christmas there.  It was the year I learned there was no Santa, the very hard way:  I spent Christmas Eve into Christmas morning, after overhearing my dad thank my uncle for buying my ‘Santa’ gifts, waking my father every hour, as his sleep disorder caused him to fall into the refrigerator.  I assembled my massive My Little Pony mansion set, and played until morning light.

I relate all of this because my packrat ways began when we again had a home, modest but pleasant means, and I began doing all of the things teenagers do, like concerts and movie nights.  It started simple enough:  I had a lot of stuffed animals, and as I accumulated more through gifts, I couldn’t bear to part with any of them.  I slept with 40 toys on my bed at one point (a single!), rotating the order so that each could have a spot close to me in turn.  This persisted into my late teens, when I moved out to university (I took about 14 with me). I firmly believe my experience of losing “my things” at a young age left me anxious about parting with belongings as a consequence.

I collected birthday cards, letters from friends passed in class.  I didn’t want to forget their words.  Being a writer, words were of high value to me.  I saved movie tickets, writing the names of those who’d gone with me on the reverse, so as not to forget the day.  As I began taking vacations with family, I saved memorabillia of the trips – amusement park maps, trinkets, even the poncho my grandparents bought me at MGM Studios when it began to pour midday.  Concert tickets became treasures as well, which wouldn’t surprise anyone who had seen my parents’ multiple albums of saved stubs; it was those stubs, and our musical household, that led to my own obsession with live performances.

Magazine clippings began to be saved, filed by TV show or subjects.  I was a devoted fan to the X-Files, and have years of clippings and interviews.  One pleasant surprise several years ago was discovering that, in saving an article about Scott Wolf in the 90s (I loved Party of Five), I had saved a Tori Amos article on the reverse.  Newspapers commemorating World Series wins.  Newspapers about the death of Princess Diana.  I made a collage at one point of female singers, hanging it on my bedroom door.  My walls were covered in clipped photos and posters; that hasn’t changed even today, although it’s much more moderated and higher quality items get the real estate.

When I went to university, a lot of my things were left at home in boxes and totes; I was okay with this, because I knew that I COULD get to these things at any time.  They weren’t truly gone.  When I finally reclaimed them when moving to my father’s place in my twenties, I was furious to find my old My Little Pony toys given to a random neighbour after my sister tired of them.  I snatched back favourite childhood books and my calligraphy set from my sister; my mother had invaded my boxes at a whim and allowed things to be plucked from within.  I carried my treasures to first one, then two, then a third apartment, never once going through them with any success.  Everything just felt…. important.  A part of my history.

I had a hell of a year in 2006:  my fiance left me for a bridesmaid, I had health and financial woes, and I embarked on a phase of searching myself and looking for lessons.  I also had to downsize my apartment in the imminent future.  I was volunteering at a facility offering free groups to eating disordered and recovered individuals at the time, and thought it might be fun to take a group, so I might better describe the program to our drop-ins.  Clutter Clearing With Feng Shui caught my eye. “I have to downsize soon.  This might help,” I reasoned.

Well!  It was one hell of a turbulent 8 weeks… and it did help.

One of the key concepts we focused on was the notion that for us cluttered people, our belongings had an abnormal meaning to us.  Whether it was the sense of ‘meaning’ to do something with 12 sewing machines, not having the strength to go through and get rid of a deceased mother’s items or, in my case, fearing losing a part of myself with the chucked item, we all had the incorrect assumption that stuff had more value than it actually was worth.  By dissecting the emotions underlying our clutter, we could process it and let it go.  And process we did – during most classes, I was the calm and eloquent member, but on one night, I became so angry with myself that when asked to write a list of things I needed to let go of emotionally then throw it in the trash, I stormed over, shredded it to tiny pieces, then slammed back into my chair, mute with frustration.

Another funny truth, proving Feng Shui has more sense than you might think:  we tend to hide our most emotionally charged items in the bedroom closet.  Skeletons.  I realized that the boxes I was most afraid of going through for the move were, you guessed it, on the top shelf of my bedroom closet.

During that move, I went through three enormous totes, garbage bags and boxes.  As taught, I made three piles:  keep it, donate it, trash it.  If you’ve watched Hoarders, some of the organizers use similar tactics.  I asked myself if I really needed 70 stuffed animals and if I was really ever going to get that net and hang it along the ceiling for them.  I donated 45 of them for needy children, keeping the ones with the most sentimental value.  I threw out a LOT of clippings.  Random junk from vacations hit the dust, as I elected to keep only one or two treasures here and there. Board games I hadn’t played in years went into the pile.  For those who have never been clutter collectors, you cannot fathom just how complex the emotions and thoughts can be.  “It’s just a pen!” the baffled family shrieks at the hoarder; “It’s a memento of my wedding night stay at the Hilton,” Hoarder replies, torn and confused.  My one troubled closet took eight hours to go through and sort.  Clutter is hell.

In the end, I donated two garbage bags of clothes, toys and other items, and chucked another two bags in the trash.  And I felt amazing.

Don’t get me wrong: my apartment, aside from tabletop clutter in the dining room, was pretty tidy and clean.  I had never gotten to the point where moving around was an Olympic challenge.  But I could have, had I not weeded down the proper amount of items before that move and learned the skills before it was too late.  My new bachelor apartment would have become a typical Hoarders room, without a doubt.  I threw out tables, small furniture, a TV, CD racks, all on moving day, with a ‘fuck it’ attitude.

Watching this show has reminded me, though, that I do have way too many boxes around the apartment, stuffed high into closets.  Fiance is no better, and although I’ve made him do one round of weeding, his need to keep ancient cell phones in a drawer and refusal to sort his mail and important papers leads to chaos on his desk.  We’re messy, but we keep it in check.  Still, there’s always room for improvement.

I have a scrapbook that’s stalled at 2001 and has been for years.  I have a good 80 VHS tapes I have yet to transfer to DVD.  There are random gift bags of concert tickets that ought to be neatly filed in a book instead.  Baseball cards from my teens, that I ‘mean to sell’.  Photos I ‘mean to hang up’.  And I still haven’t put up that net of stuffed animals.

Clutter is seductive, and I must forever be on guard.

There’s an exhibit this year at Nuit Blanche, my beloved all-night arts festival, where an artist is giving away all of their belongings, as a symbol of having lost everything recently in a fire.  Such dramatic losses are what drive home the things that are truly valuable versus that which we could do without, if we ever tried to.  I wonder how many of us clutter keepers will show up, moths to the flame, unable to resist just one more thing…

I wonder what I will collect.

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The Elusive Unicorn

As I stumble through the blustery winter winds, it occurs to me tonight, while nursing yet another sickness (throat infection) that my immune system is anything but immune.  It’s never reliable, never resilient, and part of me wonder why I even bother attributing one to my body.

From my birth, when I emerged so ill that I nearly died and needed an incubator, I have been a sickly child.  Nothing in my body has ever quite worked properly, so much so that, to spare any dire errors if incapacitated, I have a full page of typed medical conditions and allergies wrapped around my health card.  For me, an immune system that works has been as elusive and mythical as a unicorn – although I sometimes believe the unicorn more likely to turn up in my apartment than good health.

I often wish I wasn’t utterly hopeless at advanced Physics and Chemistry, because I have quite a knack for diagnosing myself and others around me.  Having read a multi-volume medical health encyclopedia for fun at the age of 10, I’ve always been fascinated by the human body’s many potential failings.  I’ve self-diagnosed a few key ailments, correctly diagnosed a few close friends as well.  I’m usually everyone’s go-to girl for medical questions now, and I’m always happy to offer my knowledge and intuition up.

Maybe if I were a doctor, I wouldn’t be in the situation I find myself in now.

This isn’t the first time in my life where I have knocked on door after door, confident of something being wrong with my body and having my personal observations dismissed or disregarded, to my own detriment.  In 2006, I suddenly became extremely ill, having frightening episodes of shortness of breath and dizzy spells.  I could no longer handle short flights of stairs.  My heart would pound and I would feel as if I were dying.  I also had episodes of my face going numb, but that is a whole other matter.  At the same time, my long-existing stomach disorder (IBS) went nuts and stopped responding entirely to my daily medications, drugs that had worked for four years admirably well.  Over and over, I pointed out the stomach angle, only to have it chalked up to stress and get told to double my dose (for the record, it didn’t help).  They checked my lungs, my heart, and found nothing.  I wore a tedious heart monitor strapped to my waist even, and it made me homicidal.  A few months after giving up on the ‘anxiety attack’ touting doctors, I was stricken with the worst heartburn any human has suffered, for 7 straight days.  After initial exams and tests, I was diagnosed with GERD – chronic acid reflux.

I had a two year period of reflux at the age of 16.  My symptoms were consistent, and the excess acid fully explained my stomach’s poor reaction.  In fact, the doctor that finally solved my issues with another handy pill agreed that someone should have clued in from the start.  Thanks, medicine.  I was told I had ‘marked scarring’ of my esophagus, but ‘luckily, no sign of cancer’.  It was that dire.

Almost four years ago, I injured my right ankle severely and, like every other joint injury I sustain, it refused to fully heal.  Again, numerous specialists and physiotherapists prodded and poked at me, with wonderful theories and no real answers.  I have a family riddled with arthrtis, so they tested me for a marker known as antinuclear antibody.  It’s basically a generic red flag for autoimmune disorders, ranging from rheumatoid arthritis to lupus.  I came up as a weak positive, and was sent to a rheumatologist, completely unsurprised by this prospect.  A retest and more in-depth blood work came up negative, and in spite of my symptoms, family history and the rate of false results, I was shooed out the door for taking up said specialist’s precious time and continued to live in pain.

For the last year, I have insisted that my body just isn’t right.  Being unlucky and clumsy as hell, I have injured and now suffer chronic pain in my left knee, right ankle, right hip, lower back, left shoulder and arm and my neck.  Each ailment flares up and down at random, no rhyme or reason.  Physiotherapy doesn’t do shit beyond a certain ‘almost okay’ level.  I can’t take daily anti-inflammatories because of my stomach, leaving me with a developed tolerance for aching.

Puts a serious damper on my love for general admission concerts, lemme tell ya.

I found a new family doctor this summer, a rarity in my city due to its population and the lack of available physicians.  In my first interview, she takes a look at my plethora of symptoms and promptly asks if anyone has ever mentioned ‘Crest’.  Confused about the relevance of toothpaste, I ask her to explain.  Seems there’s an autoimmune disorder out there called Limited Scleroderma, or CREST syndrome (the acronym doles out the five core symptoms).  We review them and I go home, shaking and realizing I have four of five.  My respiratory health has taken a sharp decline without explanation; CREST can create blockages in the lungsm reducing capacity.  Reflux?  CREST causes that too, due to abnormalities in the body tissues.  Spider veins?  Check.  Raynaud’s Phenomenon, an affliction of the hands and fingers where cold sends all circulation running away and leaves them white and icy, is a problem I’ve had since my teens. But it’s the joint issues, where CREST creates pressure due to abnormal collagen, that should have screamed out to someone I saw:  multiple GPs, two rheumatologists, three physiotherapists, and a gastroentologist.  New doctor retests me for that pesky antinuclear antibody:  it comes up positive.

I shake my head and sigh.  Three years ago, someone could have kept asking questions, could have tried to help me as I insisted something was wrong.  Instead, I was shoved out and ignored.  And now, if further tests prove it is indeed CREST that causes my issues, I have lung damage that might have been prevented, if my symptoms are an indication.

Fitting, it seems, that for a woman who’s never been able to develop a strong immune system against anything, even the flu, that an autoimmune disorder would crop up.

The moral of this blog, dear friends, is while armchair diagnosis often veers for the worst possible scenario (and the unlikeliest), knowing all of the possibilities and demanding answers for your questions can often keep doctors working for you, as opposed to working to get rid of you.  Never be passive about your health.  My grandparents were aggressive and still ignored, until the cancer they instinctively knew my grandfather had was terminal.

As for me, I’ll be fine, no matter what the next round of pokes and stabs and scans brings.  After spending so many years dealing with one problem after another, I can only do my best to stay comfortable and healthy.  This isn’t to say that an incurable and, at times, fatal disorder (or one that leads to emergency amputations of digits) isn’t a horrifying prospect; it is, and once in a while, I cry it out for a minute or two.  But until I know what is and isn’t wrong, all I can do is push for more information, now, immediately, yesterday.

And look for that damn unicorn.  Because I know it’s out there.

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