FIBROMYALGIA or My Guide to the Big F: A beginner’s guide

So you’ve just been diagnosed with the fibro, and you aren’t sure exactly what to make of this.  Congrats!  It’s designer – very bougie – no two cases exactly alike. That makes you completely unique.  You are about to become an expert in, well, you.

Let’s get the tough question out of the road to begin with. Yes, you are going to die.  Everybody – except Cher – is going to die, because the soul of Cher inhabits a silicon sex robot…maybe not, but that’s a good working theory, isn’t it?  I digress. Cher may die.  You and I will die, BUT not from fibromyalgia.

The good news is all those weird ass symptoms that drove you to insanity and then to your doctor are now confirmed as legitimate, so rest easy, you are not going mad.  With luck you got a good PCP – primary care practitioner, whether a GP (general practitioner) or a RNP (registered nurse practitioner), who referred you to a specialist for diagnosis.  Chances are, the specialist just sent a report and a plan of action to your PCP, who will be monitoring your care.  For a while, you may find yourself still having regular visits with your PCP, so if you don’t like them, now is the time to DTMF (ditch the motherfucker), because you need someone you can trust.  It is ok if they say, “you know what?  I don’t know much about this, but I’m willing to learn.”  Most PCP’s have a sentence or two’s worth of knowledge on a myriad of diseases.  There are, unfortunately, a few idiots who have not updated their knowledge and believe that the cure for all of women’s issues is a hysterectomy… or if you’re a guy, that you’re just overworked, and should take up golf.

  • Rob’s Rule #1 – get a PCP you are comfortable talking with openly, and who is open to learning with you.

Fibro can cause a lot of different symptoms in different people.  I wasn’t kidding when I say it was bougie!  As you read about it FROM REPUTABLE SOURCES (cough, cough), keep this fact firmly in your mind or you can end up scaring the living shit out of yourself.  And for gods’ sake (all of them) stay the fuck away from any website that is simultaneously selling you shit, as they give little bits of info.  Those are snake-oil salespeople… they have the cure for what ails every man or beast.  If their shit really worked, they and all the televangelists would be adding to their flocks daily by walking through cancer wards, COVID wards and all the rest crying out “be HEALED!”  Don’t get me wrong, I’m a spiritual guy, and I do believe in miracles. I just don’t believe in people who perform miracles for money.

Likewise, people’s personal accounts – including the one you are reading right now – are just that, their personal accounts.  See the common threads that folks have, and you may get a good inkling of what works and doesn’t work.

What you can’t afford to do is play ostrich and stick your head in the sand, and pretend this isn’t happening. You don’t have to learn everything in a day, but you can’t be ignorant either.  Do you have any medical expertise or training?  Then by all means, read the heavy-duty research stuff.  But don’t take one research study to your doctor and say “SEE? SEE?” because they could pull out a dozen more to refute it.  Unless you have studied science, you are not doing research, you are researching, which is different… one is something with scientificky charts and test tubes and mice and stuff, and the other is what you did in high school to writer a good paper.  Even though I work in the medical-social sector, my eyes glaze over on numbers as I am mathematically challenged, so even if a paper is intriguing, I ask someone smarter than me about the math. 7 times out of 10, the numbers are wrong, or even made up…. 83% of people know that…

  • Rob’s Rule #2 – A.S.K.:  Always Seek Knowledge. Learn what you can, so you can understand yourself better.  Do it at the level you are comfortable with.

Despite being bougie, there are some common symptoms of fibromyalgia.  Deep breath, we’ll look at the symptoms first before discussing what to do about them! (now exhale. Repeat.  Keep inhaling and exhaling, and you will prolong your life.  If you quit doing one or the other, well, that’s problematic…)

First up, pain.  Unexplained pain is THE defining symptom of fibro.  It typically feels muscular in nature or in soft tissues.  It is widespread.  Widespread in medical terms means you feel stuff on both the left and right halves of your body, as well as above and below the beltline.  The guidelines used to specify you needed pain in 11 of 18 specific trigger points, including back of head, tops of shoulders, upper chest, hips, knees, and outer elbows (both sides of bodies).  You need to learn how to describe pain.  Don’t say it hurts:  how much does it hurt in relation to other pain you’ve had?  Worse than childbirth?  That’s bad!!!  On a scale, how much does it hurt? What does it feel like?  Deep, like a pulled muscle? Achy, like you worked out the day before? Throbbing, like a bad headache? Sharp, like a papercut?  Papercuts are the freaking worse, especially when you don’t find them until you are sanitizing your hand. Get to know what is your ‘normal’ because that will tell you when you need to get your ass into your PCP with something more serious… this is why you need a good PCP, so you aren’t dismissed as ‘well, you have fibromyalgia’, when meanwhile it is your evil parasitic twin coming to life and chewing through your insides, and they could have found it if they took an xray or something. (Obviously, I watch a lot of horror movies, but hopefully you get what I am saying…) 

Fatigue and/or sleep issues are next.  For me personally, my journey started with getting sleep tests, as they thought because I was a fat dude, I probably had sleep apnea, and wasn’t getting a full sleep.  (For the record, I’m still chubby, and we’ll cover that later.). Sleep tests – all three of them with different specialists, as I got fed along the specialist chain – showed the same thing:  I wasn’t hitting REM, or if I did, wasn’t staying in REM. Specialist 1 and 3 agreed that I was having pain in my sleep, not enough to fully wake me, but enough to ensure I wasn’t getting rest.  Specialist 2 decided I was experiencing grief, wanted me to come to his private clinic for hypnosis, and medical marijuana… none of which was covered by OHIP.  Specialist 2 worked for Specialist 3.  Past tense. We will leave that there, suffice to say I am strong advocate, and know where to push in the medical-social sector.

The last common symptom would be mental health symptoms:  depression and/or anxiety, and/or concentration issues.  The concentration piece is often referred to as fibro fog.  Thankfully, I have experienced life as a blond, so I know when people are realizing I’m a little extra dense on those days.

So here is the kicker with these three:  they form a triangle of interconnected problems.  Think about a time you may have had a bad sunburn or toothache.  You might be able to cope during the day, but you couldn’t get a comfortable sleep.  Pain interrupts sleep. Or you were dealing with depression/anxiety, which kept you tired all day but, godsdammit, they kept you awake all night.  Now if you don’t sleep all night, you neither have the mindset to deal with your pain or depression, and if you are depressed, your pain may be harder to cope with and then…. Big clunky triangle slowly turning with one sharp ass point up at any given time.  Uggh…. 

In my opinion, the worst is all three of these symptoms are SUBJECTIVE…there’s a joke there, did you get it, huh? Not funny, but it’s there.  While aspects can be measured (i.e. are you hitting REM sleep), the effects are subjective in terms of impact on your life.  I know lots of young parents running on very little sleep, and functioning beautifully (or faking it). I on the other hand could go to bed for 12 hours, and nap on weekends and still be exhausted.  Because they are subjective, you have to be able to advocate the intensity of each symptom, and relate it to the effect in your life.

What you may have to do is tackle one of the Big 3 at a time, usually the one YOU feel is worse.  If you try treating all three at once, you may be dealing with med side-effects heightening the other symptoms, and not knowing what is better or worse, and hating your doctor….again, why you want a good PCP to work with.

You may also have other symptoms, and it is important to know what is fibro, and what is not.  See, I had to hit 7 specialists in total before getting my official diagnosis, as I finally had a neurologist isolate one particular symptom as not being fibro, but a pinched ulnar nerve. That’s your funny bone…ever hit that?  Now imagine putting on a winter coat and having that sensation while your arm was bent.  Once we had that symptom isolated, the rest of the diagnosis fell into place for fibro. For the record, the bulk of the doctors I saw were excellent and compassionate.  The sleep experts and neurologists agreed that it was likely fibromyalgia, but wouldn’t officially make the diagnosis.  The rheumatologist, bless her heart, wrote a beautiful 12-page report, along with different avenues of treatment to pursue, and medication schedules to try; however, she didn’t put a diagnosis down, as she was progressive and didn’t like labels.  My PCP sent me back to her, to ask what was wrong with me because he still didn’t know, and she told me some doctors didn’t believe in fibro and others would dismiss future symptoms out of hand as just fibro, so she didn’t want a label.  I read her beads on the spot, as she was slightly younger than me, and let her know that without a diagnosis, I had no protection legally for having a disability, and if my condition got to the point that I could not work, I would need to have something down before the insurance companies would cough up, and that it would’ve been easier to discuss this with me as a way of preparing me for future self-advocacy, because if I had a dickhead for a PCP, he would have said nothing was wrong and dismissed the report out of hand.  She had her “OMG” moment right there, and apologized profusely.  I completely respect her expertise, because she didn’t claim to know it all, and that one interaction will improve things for all her future patients, so was totally worth the stress to me. 

Whoops, off on a tangent.  Blame the fibro-fog.  Oh yeah, she also said she was mystified by the arm pain, but didn’t discount it: she said there was something else going on AS WELL and sent me over to the second neurologist who took a look, as opposed to the first neurologist, who had done nothing. 

  • Rob’s Rule #3 – know your own body, and be able to describe subjective symptoms properly
  • Rob’s Rule #4 – be able to communicate effectively with doctors.  They all have to shit in the a.m. too.  If they don’t, it’s probably what’s wrong with them.
  • Rob’s Rule #4.5 – learn to intelligently self-advocate, or bring along someone who can intelligently self-advocate for you
  • Rob’s Rule #5 – learn to take notes, or bring along someone who can take notes for you.  Fibro-fog + learning medical jargon = you will forget shit

We are winding this stuff up… pretty easy so far, amiright?  Let’s talk prognosis and management.

Fibromyalgia is a chronic condition, meaning it could last a lifetime, or just a long time.  It is not degenerative, meaning systems in your body are not going to breakdown.  It is not fatal, so it ain’t gonna kill you.  But I’m not going to lie: it’s always there. Potentially, you could have flare-ups, where you are trucking along nicely, then WHAM you are down on the couch going which of the gods did I piss off today???  Often, flare-ups are tied to triggers, so doing some journaling of symptoms can be helpful to learn what your triggers are.  Stress can be a big one.  Other illnesses can worsen your symptoms.  Being an ostrich can worsen your symptoms…if you don’t know your triggers, can’t describe your symptoms or advocate for yourself, you will suffer. 

How are you going to manage?

If you don’t like medications, diet, exercise and sleep are a great way to start.  Start with light exercise, and gradually build up. When I started weight training, I got a trainer, and FatBoy was in the gym lifting one 2lb dumbbell.  I can deadlift 110lbs now, and I can do leg presses of 140.  I don’t run, but I walk the track and built up to longer periods of time. I still got a gut, but I also got a butt.  I’m in the gym for health, not beauty.  When I started exercise completely, a friend suggested belly dancing:  it’s low impact and less cardio intensive than other forms of dance, plus it was learning something new, and a lot of fun.  ‘Aquafit’ type classes, or swimming are also popular, as water buoys most people up… for all the fat, I sink like a stone.  Tai chi is good.  Low power yoga is good. You don’t have to do HIIT or be in the gym every day.  Too much exercise actually will cause pain, which is why some people avoid it, but you do need to move your body.  If you gain weight, you will gain pain, as it becomes harder to move.  Exercise is good for sleep and mood as well.

Sleep hygiene is important.  The bed is for sleep and sex.  No watching TV in bed, working in bed, etc.  If you are having a ‘bad body day’, and need to lie down, lie down on the couch or get a yoga mat and lie on the floor. Keep on schedule of when you go to bed, and when you get up, and keep to it even on weekends/days off for at least a month or two. Train your mind to understand “time to sleep” when you get into bed.

If you aren’t eating healthy, eat healthier.  If you aren’t moving as much, all the extra calories will build quickly, which is how I gained a shitload of weight in short order. But I still eat cake and carbs.

Diet, sleep hygiene, and exercise are options fully under your control, and it is good to get control of this from the beginning.  Honest.  They are also very much scientifically proven natural remedies, so if people are suggesting natural remedies, go with the ones that are scientifically proven!

  • Rob’s Rule #6 – don’t say diet, sleep hygiene and exercise doesn’t work until you have genuinely tried each for a month each.  It will have at least some positive impact, though like medications, the effects could differ from person to person.

Speaking of natural remedies, about as natural as I personally go for are multivitamins to supplement cake, and larger doses of vitamin C and D, as lots of Canadians don’t get enough sunshine all year round, and it can help with sleep & mood as well.  On very bad body days, I will smoke a bit of the devil’s lettuce…because GODS BLESS CANADA, IT’S LEGAL HERE J However, I do need to function and pot + fibro fog means forget thinking for the day, so I don’t tend to do it regularly.  Doctors may be limited as far as medical marijuana, and many hospitals where specialists are located may have non-medical marijuana policies because of doctor insurance arguments. Sigh.

Again, avoid taking any magic cure sold online.  There’s the cure for blindness, cancer and evil eye online as well, if you have coin to afford it.  Also, ALL-NATURAL doesn’t equal NO SIDE EFFECTS. Hemlock is all-natural.  Opium is all-natural.  I don’t recommend trying either of those for different reasons.  

  • Rob’s Rule#7 – just give me your credit cards/money, as it will be as effective as most ‘natural’ remedies available online.  Or at least do some investigation of the product and/or seller.

Does that mean I blindly trust any new medication coming to market? Hell, no! But at least there are reported studies and an approval process, unlike natural products, which are sold in Canada under food legislation (that fact makes me shudder that there is less accountability to our food supply… but I digress).  Where new medications often go awry is that they are strictly tested on one group i.e. white men of a certain age, and don’t account for effects on PoC or women.  Or the sample size is so small that until it is prescribed in larger numbers for a longer period that rare but deadly side-effects are known.

The number one thing I will say about meds is that people take them wrong.  This is not “ooh, I got a headache”, take an Advil and 20 minutes later you are feeling better.  This is taking a medication consistently every day, in order to maintain a therapeutic dose in your body.  If you are told to take a pill three times a day, you need to set it to the waking hours of the day, and take it e.g. 8am, 2pm, 8pm.  If it is once a day, take it at the same time every day.  Don’t skip doses, and don’t double up. Take as an example, birth control:  if you take it once before sex, chances are you will still end up pregnant (yet teen boys have been stealing their sister’s pills and trying to feed them to their girlfriends for years), or if you miss a pill, you can’t double-up the next day. Doesn’t work like that. 

When it comes to meds, there isn’t a one-size fits all approach, but as I said before, don’t try to treat all your symptoms at one.  For me, I tackled sleep first.  I did end up on a sleep medication for some time; I never went past the prescribed dosage; and I eventually was able to wean off it, because exercise + sleep hygiene, say no more.  Some people may find their depression or anxiety to be the most problematic, and medication-wise, it can take a while to find the right med to work on that, quite often because it starts at a low dosage to build up from, in order to prevent side-effects, then you have to be on it for a few weeks before you know it is working, and then you have to slowly wean off it before starting all over again.  Certain antidepressants have also been used off-label for certain types of pain quite effectively, so this may be the route your PCP suggests as well and why.

Antiseizure medications have worked very well in some people with fibro, and are often used in neuropathic conditions effectively like shingles.  There may be side effects before you get to the therapeutic dose. All meds run the risk of side-effect.  Your usual brand of off the shelf headache med has side-effects up to and including death, you just never read the product monograph before. Some side effects of meds you take may be temporary, which is why you start at a low dose. Some may continue, but be better than pain, and easier to manage… for example, you may get constipation, but increasing your fibre intake, and exercising a little more will off-set that!

Now here is where I really get on my soap box: do not, do not, do not, DO NOT try any opioid medication until you have tried absolutely every other last avenue, including diet, exercise, and maybe even the magic pills from the interwebs, AND unless you are under the careful eye of a speciality pain clinic.  Opioids are overly prescribed in fibro for people who are too lazy to try diet and exercise, and don’t try to work through side-effects of other medications. They are addictive.  It was allegedly (because I don’t want to be sued) a lie that certain pain meds were supposed to be able to manage pain 24 hours with only 1 pill every 12 hours.  That benefit wears off rapidly, and then we need to deal with you in an addiction clinic as well as a pain clinic.  They do have a time and place – terminal conditions or severe degenerative conditions, where muscles, bones or nerves are literally rotting away – however, no PCP should be offering them without a full consultation and assessment by a pain specialist.  There is very little data that supports the use of opioids in fibromyalgia.

  • Rob’s Rule #8 – understand why you have been prescribed something, the best schedule to take it on, the common side-effects and the benefit vs. side-effect.

Now, studies have shown that HOW you deal with stress will also predict your symptom levels with fibromyalgia.  You can try to avoid all stress in your life… but there is always stress lurking.  I walked away from a job I had been at for 10 years, because my stress levels were going through the roof, as were my symptoms.  I now work in a very fast-paced, high stress environment, but it isn’t the same type of stress.  I go in, do my job, and leave on time, and leave my stress there.  I used to worry about straightening up for company, but now if people complain about the mess (a messy kitchen table full of stuff that needs sorting level, not an episode of Hoarders level) and they don’t offer to help clean, they ain’t a friend, and that’s one less new year’s card to write.  I spend less time on stuff, and more time with people. 

If you haven’t tried – seriously tried, not just giggled about – something like mindful meditation, yoga (the meditative kind), or spiritual practices, if you are a spiritual person, try it.  Carve out time in your day to do so, even 5-20 minutes.  There are lots of free guided meditations on YouTube, both guided imagery, guided physical relaxation, and spiritual.

Be aware of how you deal with stress, and find new ways on how you respond to stress. Guess what?  The science supports meditation and stress response as being beneficial for chronic conditions in general and pain specifically.

When I have a ‘bad body day’ now, I remember my worst day now is better than my best day used to be – that’s not lying, because I have whiny Facebook memories popping up continuously that remind, WHOA, I shouldn’t be belly-aching!

  • Rob’s Rule#9 – get a new attitude…and learn to let shit go.

Almost done. Life’s not worse now, it is just different. Nobody plans to have a chronic condition.  Nobody plans for most shit in life, or if they do, it’s not quite what they imagined. If you aren’t making the efforts where you can to change things for yourself, and if you aren’t finding ways to enjoy life still, you are going to be very miserable and mostly alone.  But you’ll have pain regardless, probably worse than anyone else with similar symptoms but a better view on life.

You may have new parameters to work under.  I used to work all week, and go out Thursday – Sunday… weekend started a bit early, LOL.  Now, I might get one night out dancing a bit on a Friday or Saturday, because it will take me a full day to recover my energy levels, and my body will ache fiercely. But for me, it’s worth it. I’ve had to cancel a few social engagements here and there, but strangely, because I’ve made focussing on relationships a priority, I actually have more social engagements than I used to have.

I got a new job.  I’ve dated more in the last few years of my life than in my 20’s and early 30’s combined.  I’ve travelled to two countries (I didn’t exactly get out much before, so that’s a lot). Yeah, I have to put some planning in place here and there, but I’m doing stuff I never dreamed of before!  I’ve learned to not say no right away. Because I had to force myself to think about the way I was living, I slowly learned to make changes to accommodate fibromyalgia, and in the process, have done a lot more living.  I don’t recommend people get out there and get a chronic condition, but if you, dear reader, are finding that you have a new obstacle in life, find a way to get around, over, under or through it, or change paths and go some place else.  Just don’t sit by the obstacle waiting for death.  Death finds us all eventually, and you aren’t dead yet.

  • Rob’s Rule #10 – don’t forget to LIVE life

SEAN

Oh, here where cold meets hot, wet meets dry, stillness of the sand by the drumming of the surf


To throw yourself into the wave and unknown and return again and again to the ever-shiftingsame secure shore.


Color still vivid as Eden’s first hues riot against white sand blue sky and reddened skin.


Helios’ last true follower, peaceful in still worship amongst raucous beach revelry offering body as sacrifice to the sun god.


Stress burns away, purifying: a chaotic soul at peace.

In the Cathedral: Images & Confessions

Prelude

I recently found back something I thought lost for ten years – a collection of poems from my youth, paper copies of my earliest work, when ideas and imagination went merrily unchecked, until at some point they were fewer and fewer between. My brother had scrapped my ancient computer for me, and drilled holes through all the floppy discs to ensure that nothing could be found.

When my love died and I moved, this had been carelessly thrown into the bottom of a box of assorted old but necessary papers, taxes and the like. I was devastated thinking this had been lost.

Sharing it, as a way of rekindling creativity.

Shopping: A rant.

I work with people living with addictions and mental health issues. Sometimes they cannot manage their behaviours because of this, and I do my best to diffuse the situation to work with them to find solutions. It’s tough, especially right now.

I’m on planned ‘staycation’ this week (I was supposed to be visiting Korea) and had to do a grocery shop. I went for 10am, to allow those in need to go first as requested. 3/4s of the people in the store were at the minimum courteous, responding to ‘excuse me’, ‘so sorry’, etc. The last 1/4 could do with full psychiatric work up before being allowed in public.

It’s like they haven’t seen the news of what’s going on, freaking out on staff and other shoppers about barren shelves and high prices. Some I’m sure were just desperate for conversation. Some a-holes had procreated, brought their brats and were letting them run free and touch everything with hands in their mouths, whilst parents (men and women) either were on a work or personal call in the middle of the aisle. One dude had the audacity to berate someone for not social distancing from his free range brats, and his cart was blocking the aisle while he was on the phone laughing with a buddy. If you’ve been to Maple Leaf Gardens Loblaws, they have a great racially diverse staff, and being right in the gay village, lots of LGBT+ staff too. It’s a point of pride. But I saw a couple of Karens and Beckys and Chads (sorry, to my friend Chad!) were working up to ‘I want to speak to a manager’. At 10am. OMG. The poor staff.

Your. Privilege. Is. Showing. You. Nasty. Racist. Homophobic. Spoiled. Non-Essential. Cretins.

You are not the end all and the be all. You’ve missed the “We’re all in this together” understanding that the bulk of Canadians are getting. If this is what staff are dealing with daily, the store needs to start handing out lifetime bans.

I got pretty close to getting what I needed, but had to give up, as the store was filling up, as was my panic meter. Got through self-checkout, having brought my own sanitizer. Then struggled back through people, as there was only one entrance/exit open, to manage the flow.

The door was being blocked by a privileged Becky throwing a full tantrum at the doorway, as the store was at capacity, and she was technically first in line, except she was already out and had forgotten one thing, and was arguing with the guy at the door that he could watch her bags on the street while she ran in to grab it. I kid you not. I said excuse me three times, until she went ‘just a minute’, and then I just moved through, forcing her back.
When I go out in public in general, I am not being employed to be the human service worker that I am. I am not there to manage your emotions, outside of socially accepted conventions: be polite i.e. excuse me, please, thank you, sorry – all things your parents/guardians should’ve taught you.
There were good parents, who were being mindful of their kids, and people who were just putting things back due to cost (not just handling for the sake of handling.) I heard quiet discussions of ‘we will sort out the bills later’, and my heart broke. I accept I am privileged on many levels, one of which currently is having a full-time job with benefits, and know some of my friends are struggling at the moment. I was fortunate as well that I got what I got for only $48 and change, as I had saved up $220 in points. I’ll be making another donation to the local food bank shortly.

I got home on auto-pilot, and then safe behind a locked door again, let the panic attack come to get it over with – full sweats, tears, choking, chest pain and gasping for air. Scared littlest puppy, as she has mercifully never seen me this way. Zylly, my trooper, just calmly came and pressed against me, and is still pressed against me as I write this. I have seriously never had a panic attack this bad in at least 14-15 years, when I was off work, after getting attacked on the job.

My clients for the most part admit where they messed up, and either apologize for their actions, or accept the situation and move on. You people I saw today, you privileged people who can’t see your privilege, you are not the pillars of society that you think you are, when you cannot treat overworked grocery store staff with the basic respect for the absolute stress that they are working under at the moment.

I don’t even want to imagine the store later today when there will be more people trickling in: those who are currently working, in over-stressed positions of their own, who may have fraying nerves after dealing with similar idiots all day.

For the love of humanity, show some basic curtesy right now, or stay home.

Letter To Tera

(Tera was a friend from university, who I finally got upset with in person and cut contact with. She reached out to a mutual friend to establish contact. First two paragraphs are what she sent.)

Sigh. I don’t want him to get mad at you for asking. And i don’t want to put you in a position that makes you uncomfortable in any way. If you are okay asking him, that would be great, but like I said it’s just to satisfy my curiosity, which in the grand scheme of things, isn’t really a big deal, you know? As I mentioned I think about it from time to time and wrack my brain trying to figure out what happened, and I just come up with nothing. 

I mean, if I did something that was so horrible, i would like to know so I can try to make it right, although it doesn’t sound like he even wants that. If it’s some kind of huge misunderstanding, I don’t understand why he wouldn’t have clarified with me before utterly losing it on me.

*****

Tera, 

Of course, I’m not mad at her for asking: I knew you would sooner or later do so. I am not even surprised that it is later, and that you consider it no big deal, because you want to satisfy your curiosity first and foremost, instead of trying to reach out to repair the hurt that I clearly evidenced. 

And within that lies the entire crux of the situation. Allow me to explain how in almost 30 years we got to this point.  

Twenty-eight years ago, you dragged me out of the closet. Twenty-seven years ago, you convinced me to move to Toronto. Twenty-six years ago, I was lucky to see you as a friend once a month. Twenty-five years ago, I realized that I was only interesting to you as a project, and as I gained new insight into myself and my own independence into my life as a whole, your continued go-to was the naive country bumpkin you rescued.

Because of the way you painted me when I first moved to the city, a good swath of your friends didn’t want me around. I was the albatross around your neck, because clearly, i wasn’t understanding the ways of the world, because they didn’t add up to your perception of what a gay should be like.

Just like you resented Deb “stealing” your style – one she excelled in and grew, up to her death – and began to mischaracterize her, you would dismiss my comments and corrections about your misperceptions of what gay lifestyle entailed, because as you put it to me once “you wouldn’t have any clue about it, if I hadn’t brought you here.”  

Heck, when I went to do drag for the first time, you told me how I couldn’t possibly, because real drag queens were artists, who spent thousands on their outfits and they had talent. I was so glad for your support then.  Even after you saw some of the pics, you told me how terrible I looked…despite the fact I was offered a regular gig.  At that time, I still had a level of naivete about me that I was somehow lesser, and I looked to you for counsel. You were key in me not pursuing that path. 

But it was still hurtful, so I then chose to spend less time with you in person. I followed you on LiveJournal and later Facebook. It was fascinating watching you live in another country. I for one had actually looked forward to hearing more about certain things when you returned, but I remember when you came back you resenting that no one wanted to hear about your time there. 

I was kind of shocked since that was ALL we talked about that first afternoon I got together with you upon your return.  When I said to you “well we’ve now talked for two hours about your year, and you haven’t asked how I’m doing,” you scoffed and said, “everybody here is doing the exact same things as when I left, dancing to the same music, in the same clubs with the same people talking about the same boring stuff and I’ve just come back from having the most amazing life experience and no one is interested in hearing about it. My cousin warned me people would be like this.”  

I don’t think I felt my life be that devalued by someone I called a friend up to that point in my life, or since. 

So, I spent even less time with you. You would dip in and out of my life at your convenience, mostly to satisfy your curiosity. You wanted to visit when I was with David not to meet my significant other, but to observe Rych’s uncle, who you were fascinated with and had taken pictures of through the window meeting his son for the first-time years prior. When I tried to change the topic, you took it back to “omg Rob, this is my history: I met him before you did.  I just have so many questions!”

Your wanting to get together over the years was always at your convenience, and demanded, never asked. If I did ask to get together, it was an inconvenience, you were busy, work, boyfriend etc., with no alternative offered.  

Think I am exaggerating?  Let’s go to the recent examples prior to me “utterly losing it” on you.

This was the penultimate conversation on Messenger, just prior to us meeting:

You: “hey, did you get a new dog?”

Me: “What the, one I’ve been posting about about for a year?”

You: “I don’t have time to keep up with people.  What kind is it?”

Me: “Chihuaha”

You: “Great. I need to bring (my son) to see it.”

Yeah, I didn’t respond, as there was little point in you getting the obvious. 

So, beyond the fact that you have no time to keep up with people, my pet is to serve as your son’s entertainment, and I should be good with that?  Well, sweetheart, the last time I entertained you and your son it was just after my husband died at our old apartment. You couldn’t have been bothered to listen for more than 10 – 15 minutes of what I had been through without telling my you didn’t want to hear anymore, as it would be too upsetting for your non-verbal, not quite a toddler son and you just couldn’t deal. You kept it pretty much focussed on the dogs.  And you fucking had the audacity to remind me that you were so glad that you brought me to Toronto so that I had the opportunity to meet Jaymz.

I bawled for hours after you left.

In that intervening time, I still tried to maintain a friendship with you.  On several occasions, eventually with your father entering hospital you would reach out for help with questions regarding the social service and health care systems.  Your response on those occasions was a variation of: “I took the same course you.”  

Goddamnit, I have specialized far beyond college.  As you pursued several more different degrees/diplomas in areas you never used, In the last 15 years I was getting additional certification in what I do; in the last ten years, I have been a consultant on a series of books on system navigation; I was tapped to sit on round-tables with the Ministry of Health for redesigning dementia and palliative care; I sat on the Board of Directors of the Ontario Caregiver Coalition, and lobbied to get the family caregiver leave that now exists.  I reached out to share step by step what you needed to do when your dad went into the hospital, to make sure that you were prepared for next steps: you dismissed my entire message with “yeah, he’s not leaving the hospital”, and lauded your friend’s advice about how they got private long-term care…which doesn’t exist. No such thing. That’s pay-for seniors’ care, and people are dying in those situations, as it is non-medical care, which people can be charged what the market will bear, and falls under a completely different section of legislation.

My entire line of work at the time for ten years, but you took the same course in college…

I have always been grateful to you for supporting me as I came out.  And for convincing me to move to Toronto. But while you may have been a support at that point in time, you haven’t actually been around for the tough bits since, so don’t kid yourself on how big of a role you have had in my life.

See, everyone who is gay at the point they come out wears a shield identity that they navigate the world behind.  You once made a comment that I was like I had just hit my teen years and was just figuring stuff out. That was actually true.  But beyond the trials and travails of transitioning from childhood to adulthood, a gay person has to weigh and come to terms with their own identity and every relationship that they have ever had, and how the revelation of their orientation will either strengthen or weaken those relationships.  They have to chip away at their own shield identity to figure out which part of them is really them, and which part the facade. As they gain acceptance for themselves, they begin to rebuild themselves, almost like people have to rebuild themselves after a bad breakup, except it is continuous until they can say ‘fuck it, I’m okay with myself’.  To put someone back in the context of a previous identity without being able to acknowledge the current identity (i.e. “I can’t believe how much you have changed since when we first met; you’ve gone from the shy closet case to living your truth”) is not just dismissive, it is nothing short of damaging…if not to the person, then to the relationship.

As far as moving to Toronto, that had always been on my agenda.  I would have gotten here one way or the other. But it isn’t like you fed and housed me and got me a job.  In fact, some of the advice you gave me for resume prep and job search – e.g. “be a stripper, it’s good money” – is the worse I have ever received in my life.

Then the ultimate conversation.  Here is what set things up:

You: “hey, boyfriend and I were just at Storm Crow Manor for dinner.  Now at Woody’s. Come.”

I showed that message to the friends I was with hanging out with that night, a few doors down.  Their comments included “what a rude b-h”, “does she think you have no life”, and “don’t go. What kind of a c-t doesn’t plan?”

Still don’t get it?  You had an opportunity prior to say “I’m going to dinner with my boyfriend in your neighborhood.  I’d love if you can come join us afterwards at Woody’s if you’re not doing anything.” But you don’t ask, you demand. You don’t consider, you control.

But I went.  Thought maybe you might have gotten it, since I hadn’t replied about the dog, but that was the second thing out of your mouth as an introduction to your new dude, “he’s got this little dog I’m taking my kid to see”.

The first thing out of your mouth was “this is the gay I dragged out of university and moved to Toronto.”

That’s when I started recording you on to Facebook live.  I needed to know that what I was hearing was the gospel truth, and that anytime my heart started thinking “I should see how she is doing”, I could watch that, and spare myself some tears.

For a while in my life when I moved here, I just thought it was me.  As I struggled to navigate my coming out in Toronto, and being continually told at first how naive and dumb I was about the ‘real world’, I missed the fact that you treat a lot of people like this.  The most disparaging conversation I have ever witnessed was you telling your childhood best friend, ‘what do you know, you haven’t been to university’ while you got your stripper gear out.  You could strip, because it was going to your tuition.  She was ‘just’ a stripper. 

And you never seem to get it when someone else is embarrassed.  I can’t believe that you were telling guests that you accidentally got pregnant, because you stopped taking birth control, because you didn’t have sex very often…while your boyfriend at the time is just in the bathroom. I’ve heard you several times suggest that you should hold an intervention for different people, while downing a beer.  I’m also very cognizant of the fact that you currently have the evil stepmother role down pat. 

You wonder why I didn’t say anything?  I have given you almost 30 years of conversation, hints, outright statements and explanations, which have gone over your head, so this isn’t a little misunderstanding one time in a bar.  

You wonder why I don’t want to talk with you anymore? Encounters with you over the years have left me feeling horrible, devalued, and questioning myself.  And I refuse, after working on my own self for thirty years and feeling okay with myself, to be dragged backwards by someone who is that toxic.  I’m even going to give you the benefit of the doubt for past gratitude that you are being intentionally cruel; I believe that you have a narcissistic personality disorder.

From the Mayo Clinic, traits of narcissistic personality disorder include:

  • Have an exaggerated sense of self-importance
  • Have a sense of entitlement and require constant, excessive admiration
  • Expect to be recognized as superior even without achievements that warrant it
  • Exaggerate achievements and talents
  • Believe they are superior and can only associate with equally special people
  • Monopolize conversations and belittle or look down on people they perceive as inferior
  • Expect special favors and unquestioning compliance with their expectations
  • Take advantage of others to get what they want
  • Have an inability or unwillingness to recognize the needs and feelings of others
  • Be envious of others and believe others envy them
  • Behave in an arrogant or haughty manner, coming across as conceited, boastful and pretentious

I am sure that you are going to dismiss this letter right out of hand.  Also from Mayo:

At the same time, people with narcissistic personality disorder have trouble handling anything they perceive as criticism, and they can:

  • Become impatient or angry when they don’t receive special treatment
  • Have significant interpersonal problems and easily feel slighted
  • React with rage or contempt and try to belittle the other person to make themselves appear superior
  • Have difficulty regulating emotions and behavior
  • Experience major problems dealing with stress and adapting to change
  • Feel depressed and moody because they fall short of perfection
  • Have secret feelings of insecurity, shame, vulnerability and humiliation

Source: https://www.mayoclinic.org/diseases-conditions/narcissistic-personality-disorder/symptoms-causes/syc-20366662 

In conclusion:  I do not regret having you enter my life three decades ago.  I believe that people come into your life for a reason, season or lifetime.  Yours was a reason, but the solution was achieved shortly after I got to the city.  Again, I am also grateful for you introducing me to some of the most wonderful people on the planet that I remain in close touch with for the same period of time.  They are also some of the same people who you have belittled, hurt and disparaged over the years.  I feel sad for you, because they are some of the most supportive and loving people I have ever met.

I hope you learn and grow from some of what I have written here.  Sadly, I feel like you simply dismiss it all, and continue to damage your relationships and not even know why.

I wish you well in life, but I do not want you in mine.

(Edit: From the mutual friend I got her response – She read it can’t understand where all the anger is coming from remembers things differently from you. Comments from mutual ex-friends of hers include: “of course she didn’t….eyes roll hard”; “She will dismiss it of course but its brilliant!”; and other descriptions of her that I won’t share here.

I’m actually not angry with her, and wasn’t angry when I wrote this: I was only angry that night, and by the time I got home the anger was at myself for allowing myself to feel beholden to her. I tried to give clear examples of memorable moments, so that I wasn’t dismissed out of hand, but she would like to try and gaslight, even when there were others present who can vouch for the conversations. I feel sad for her that she continues to damage relationships with so many wonderful people.)

Snooze

I hit snooze
And move close

This here this now
Perfection

Warm in your arms
Safe in your heart

Doggies sigh with puppy dreams drowning

All of us knowing that this day will start

Not knowing what strife may strike
Uncertainty, upset, unrest
The news will bring over coffee
Business over breakfast
Rushing out
Hair messed
Weatherman’s light rain
Torrential downpours
Missed emails and deadlines
Pings and vibrations of
Everyone seeking attention
Crises, crying, calamity

I hit snooze
And move close

This here this now
Perfection

Warm in your arms
Safe in your heart

Dean


Soft twilight of 24/7
Coffee scented spot
Waiting forever in two minutes he
Walks in smiling
Brief, familiar hug
Kind eyes, serious face, quick smile, smooth skin, taut muscle
Summary of a glance.

Words lost in the din around us
Laughter and loud conversation
Knives on plates, glass to floor, wine to cup
Scents, incensed, swirling
Dance of the servers between tables

My ears strain to the quiet passionate description
Of worlds seen through his eyes
Told through a quiet husky voice
Moments of meditation gone awry, with the bestowing of blessings
The peacefulness of daydreaming over coffee
Creating.
Completion.
Closure.

And hints of pain under the surface
Life longings, and love
The summary of the complexity of a simple life
Lived to the fullest.

In the middle of a busy room
Quietly alone
Wondering
A million questions left to ask,

Perhaps, again?

Sang Yong Sighs

Sang Yong sighs

His calm visage leaning to a frown

Pen marking the page of a word unknown

A phrase devoid of context.

Twenty-five years part of one world

Twenty-five years part of another

And while he has spent years here struggling to learn

The base culture beyond the vocabulary,

his peaceful rate of speech

Carefully conceals

His self-perceived

Accented

Word choice.

Thoughts

Turn then

Back towards

Half remembered

Childhood memories

Family traditions.

But while his memories are fragments of time sealed in amber

The world has continued to move

Culture evolves and reference points

Are fewer and further between

He is a time traveler drifting between worlds

Seeking to understand an unlived past in both world’s presents

A visitor in homeland and chosen land both.

Unanchored.

Sang Yong sighs.

Evaldes

I’m jealous of the ant

Crawled up from the grass where we are laying

In a public park where we are having a private moment

Dogs racing down the hill to catch thrown balls and

Pause

Near to us smiling as only dogs can

No judgment as I lie back his arm beneath my neck

Summer sweat slicking skin

Scenting sweet musk, his smile

Stirring my thoughts, my heart, and lower

My eyes spy the ant moving along his skin and along each hair of his leg

Moving determinedly along the length of him

Along muscle lines beneath I wish to touch too