Your Arguments Don’t Make Sense and I’m Still in Pain

I’ve been in a funk for the last month. Which is an extension of the funk I’ve been in for the last six months, which is an extension of the funk I’ve been in for the last few years.

I’m in pain.

This isn’t new, of course — pain started for me in my early 20s with my ulcerative colitis, increased with my diagnosis of ankylosing spondylitis in my late 20s, jumped higher still in my late 30s with the development of Crohn’s fistulas, pushed even higher in my 40s with degenerative disk disease in my neck and the spread of my AS to my shoulder joints, then reached what I thought was a complete tipping point a few years later with the development of peripheral neuropathy from my diabetes. And then I developed fibromyalgia, which although not present every day of the year, comes in several-month long waves where it takes over every. single. joint and muscle. Add that to the everyday pain I was already suffering and I thought I was going to lose my mind (spoiler alert: I’ve already lost my mind and I don’t have any more to lose).*

IMG_0583

I hear the gallop, gallop, gallop of my heart.

My pain was so bad that beyond my subjective reports of how bad it was (which, to be honest, don’t amount to a hill of beans in the medical world), that my blood pressure had gone from its previous normal of about 110/70 to about 140/100 and rising. We were starting to have conversations about blood pressure medications.

Instead I convinced my family doctor to refer me to a pain specialist and in the meantime, we switched my pain medications to a different and more powerful narcotic.

Suddenly my blood pressure was normal again.

This isn’t a coincidence. Blood pressure is a pretty standard measure of pain in hospital settings: It’s one of the reasons they take your blood pressure in the ER and then ask you if it’s different compared to your ‘normal.’ About five years ago I had pancreatitis and refused pain meds and my blood pressure started going so high that they gently but firmly insisted I accept morphine. It settled back down. My pain decreased. Until the fibro started and things got tricky again, of course, and I asked for more help.

Pain causes stress on your body. That emotional stress causes stress on your heart. This is one of the reasons why it is so important to manage pain. In spite of that, there has been a growing movement in the pain management community to turn away from narcotic painkillers in chronic pain management care.

The goal of this new movement is to focus on the quality of life of the patient and the changes which can be made to accomplish that (rather than focusing on completely extinguishing pain). These options include non-narcotic drug options (in the case of neuropathy and fibromyalgia – anti-depressants such as Cymbalta or anti-seizure medications like Lyrica), exercise, psychotherapy (cognitive behavioural therapy), group talk therapy and a variety of other techniques. The goal of the non-drug therapies is not to eliminate pain, but to learn to live with the pain.

Actual advice from my pain doctor:

NON-DRUG THERAPIES

“Stronger pain medications exist, but since they are unlikely to work, we will not give them to you.

Narcotics have the potential for abuse and have withdrawal symptoms.

“If you talk to others about your pain, at least you won’t feel alone.” But you will still feel pain.

“Physio, massage and talk therapy are temporarily helpful but some people still appreciate them.” Of course the benefits are completely defeated by the stress and pain of the ride there and ride back, and emotional stress of dealing with yet another doctor.

DRUG THERAPIES

Anti-depressants don’t work for everyone, but they might work for you so you should at least try them.

Reads black box warnings: Lyrica has the potential for abuse. Use with caution.” “Many Cymbalta users experience serious withdrawal symptoms.

“Yes it’s possible that taking Cymbalta could send you into a manic episode, but we can deal with that when it happens, and maybe give you other drugs to counteract that.” “No I can’t see you every few weeks to monitor you.”

“Yes some patients on Lyrica gain weight, but not all and it’s not that big a deal.” Except that doctors check your weight and BMI every visit, so clearly they think it is important. Zyprexa made me gain 40 lbs. I have diabetes. And joint pain that is worsened with weight gain. And I also suffer from body dysmorphia triggered by weight gain. But no big deal.

*

Doctors: You are not making sense. Get your arguments straight, stop applying double-standards that are associated more with the stigma of prescribing narcotics than they are with the actual risk (or benefit) of narcotics to the patient. You can’t use one argument against narcotics and then ignore the exact same argument when it suits you.

All you are telling me that it creates an easier standard of care for you.

/rk

*This roadmap of pain doesn’t include all the other little side trips along the way like pneumonia, asthma, costochondritis, bursitis, general fatigue of autoimmune disease, vitamin D, B12, and iron deficiencies, pernicious anemia, bipolar disorder, anxiety, OCD, major depressive episodes, schizoaffective episodes, Achilles tendonitis, brain fog, POTS, possible Sjogren’s (still waiting on that one), yadda yadda yadda.

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Things That Are Making Me Anxious Right This Second

IMG_1785-EFFECTSaka. I HAVE PLANS
(p.s. This is only an example… it could really be anything at any given moment)

I am worried because I have plans for later today.

I am worried that something will come up and I will have to cancel those plans.

I am worried that maybe those plans already got cancelled and no one told me.

I am worried that maybe I got the day wrong and those plans aren’t today anyway.

I am worried that maybe I got the day right but it’s a prank and people are going to make me look foolish in some way.

I am worried that I never had those plans in the first place and somehow dreamt them up.

I am worried that if I go I will have to be around other people.

I am worried that I will say or do something to embarrass myself.

I am worried that I will say or do something to hurt or embarrass someone else.

I am worried that I will not know whether to take off my shoes or not.

I am worried that once I do take off my shoes and I will be cold and my feet will be numb.

I am worried that their house will be cold and I will be cold and I will get sick.

I am worried that I won’t wear the right clothes and I will be cold and I will get sick.

I am worried that I am already sick.

My jaw hurts.

My head hurts.

My heart is beating too quickly. I am worried that it is beating wrong.

I am worried that no one likes me.

I am worried that people pretend to like me but talk about me behind my back.

I am worried that anyone who thinks they like me just doesn’t know me well enough.

I feel tired and I want to sleep. I want to take a nap to calm down.

I am too worried to sleep. I am worried I will oversleep and miss my plans. I am worried my alarm won’t go off.

I am worried I didn’t get enough sleep from my nap and now I am more anxious and I’m worried I’m too tired for my plans.

I’m worried that I’m not spending enough time with my pets. I’m worried about leaving them alone.

I’m worried that if I take the car I will get into an accident. I’m worried I’ll hit someone else. I’m worried that I will suddenly and uncontrollably drive head-on into a traffic barrier and die.

I’m worried if I take the bus, I will miss the bus. I’m worried if I take the bus, I will have to talk to someone. I’m worried that my bus pass will be rejected. I’m worried there won’t be any seats left. I’m worried I’ll get hurt because standing on the bus with a cane is difficult. I’m worried the bus will get into an accident.

I’m worried that people will see how anxious I am. I’m worried I’ll start shaking. I’m worried that I’ll cry. I’m worried that I’ll run to the bathroom and not come out. I’m worried that they’ll think I’m a crazy person. I’m worried that they’ll KNOW I’m a crazy person.

I am worried that I have to cancel my plans RIGHT NOW because I CAN’T GO because I am TOO ANXIOUS and I need the anxiety to STOP RIGHT NOW before it is time to leave.

I am worried that by not going, they’ll be angry and they won’t trust me and they won’t invite me again.

I’m worried that they will.

/rk

What’s You is Mine

I used to steal things.

It was wrong, certainly, and I felt a tremendous guilt over it at the time, but largely because I didn’t understand why it was only directed towards the people I cared about. I think people take things for a lot of different reasons, and while kleptomania is the clinical label we put on it when people do it compulsively, trying to paint every person who has this compulsion with the same brush ends up dismissing the very real dysfunctional thought processes which underly it.

I didn’t steal things very often, but it occurred enough times as a child that I was convinced that I was a ‘very bad person.’ I took a swan-shaped perfume bottle from my best friend (and forever added water to it, trying to get it to last for as long as possible). I took a tiny drummer boy pin from my grade two teacher’s desk at Christmas time. I occasionally took tiny mementos from my mother’s desk or jewellery drawer.

I didn’t do these things because I was angry or wanted to hurt them. I did it because I loved them. But I cannot deny that these acts must have hurt them, and would have hurt them even more to know that I was the one that did these things, because you (especially) don’t steal things from people you love.

I think to understand why I did these things, you need to look at the behaviour that accompanied the theft.

stealingI was an anxious child (who grew into an anxious adult). I didn’t have any outlet for that anxiety, so it was up to me to develop my own self-calming techniques (calling them techniques suggests way more self-awareness than I had at the time — it’s taken me years to recognize these patterns for what they were). One of these strategies was (what I thought of as) treasure-hunting. If the opportunity presented itself, I would go through hidden spaces and look for little treasures: items that made me happy and calmed me through tactile stimulation. It started with my own things — it was always possible in my messy room of hoarded things to dig through my piles and find things that I had forgotten about. Finding those things anew and touching them, rubbing them between my fingers, putting them in my pocket or even touching them to my lips (or putting them in my mouth) would calm me.

But sometimes my own things weren’t enough. The older I got, the better my memory was and the more that I needed novelty, and I needed to branch out. I would sneak into my mother’s room and go through her drawers or her closets. On her upper shelves she had some collectible dolls — I would take them down carefully and look at them, touch them, but never remove them from their case. I wasn’t allowed to play with them and I although I did gently handle them, I never risked damaging them by taking them out of their boxes. For the most part, I’d just dig about and put things right back where I found them. It wasn’t until later, when my anxiety was no longer satiated by looking that I took things.

I didn’t take a lot. Usually just one thing would be enough. Somehow having something of my mother’s (and later my best friends or favourite teachers) was enough to bring me comfort when I was anxious. Those items held extra power because they belonged to the people that I loved. It helped when I was scared, and certainly helped when I was apart from them.

I didn’t steal from strangers. I didn’t steal from my brother or father — the idea of doing so never even crossed my mind.

I think I recognized after taking the perfume bottle from my best friend and the pin from my teacher that it was wrong to take anything that they would miss or that was too precious. I didn’t want to hurt anyone, I just had this need that I couldn’t suppress. I tried to only take things from my mother that seemed lost or forgotten to her already.

I don’t remember exactly when the habit passed — somehow I graduated from being a child to a teen and I wasn’t stealing any more (other than borrowing clothes from my mother, but that wasn’t something I hid).

I thought it was past me until all of a sudden in my late thirties, I found myself at my mother’s house one day while she was at work, going through drawers and cupboards. I didn’t realize it at the time, but I was in the upswing of a manic phase (the one that ended up defining my bipolar disorder). I had been sleepless for weeks at this point. I had gone over to my mother’s house to pick something up and ended up pacing room to room, looking for nothing that I could verbalize.

I ended up finding some paintings that had been tucked away to the side of her dresser and just knew that I had to rescue them and they needed to be in my house. Suddenly the only thing that mattered to me was that these beautiful paintings were being ignored, unhung and forgotten.

A week or two later, when my mother came over and saw one of the paintings hanging at the top of my staircase, she was furious and (not surprisingly) hurt. She demanded them back and when I got upset and tried to point out that she hadn’t even noticed they were gone, she took them and left. I tried to plead with her and explain that I was trying to save them, but we were both hurt and angry and not really listening to each other. I cannot deny that what I did was an aggressive act (or that it seemed so to her), but my defensiveness was in part out of confusion that she thought I did it to hurt her, which in my delusional mind, I hadn’t.

It wasn’t until later, long after the incident (and after drug therapy had treated the manic episode) that I began to question why I had done it and how it related to a larger pattern of behaviours.

Any person who experiences anxiety (or any other mental illness) will tend to develop calming strategies, many of which are potentially self-destructive (like smoking, alcohol or drugs). Unfortunately, with something like kleptomania or drug abuse, the symptoms of anxiety can mask the underlying cause, which will inevitably go untreated. More clinicians are recognizing this fact, which is why there are more dual diagnosis treatment centres opening, thankfully.

For myself, I’ve tried to learn to identify which of my behaviours are related to my anxiety, and which are acceptable and helpful outlets for those feelings (this list is only mine, and the things that I call risky or bad are simply that for me):

RISKY

  • alcohol
  • drugs (some, potentially)
  • stealing
  • violating other people’s personal boundaries (going through their things)
  • lists
  • exercise
  • looking at the scale

SAFER

  • window shopping
  • walking
  • magazines
  • flowers
  • looking at bright, pretty things

The top list will confuse some people, I know, because it has lists and exercise on it. For me, the problem is that besides anxiety, I am prone to obsession and compulsion. If I keep things light and not too focused, I’m okay, but unfortunately that’s not how things tend to unfold. Things with numbers or lists or goals tend to push me into overdrive and I compete with myself. In the past that has resulted in compulsive exercise and anorexia.

Sometimes though, colour and design are enough mental stimulation to calm me. If I can walk through a HomeSense or Ikea, walk the aisles one at a time and pick up each little knick knack, turn it around in my hands and put it back, that’s enough to settle those feelings in the back of my brain. Without realizing it, I’ve had this habit since I was a child — first at the toy store and then at any store at the mall. kIt’s such a simple thing and it doesn’t hurt anyone. The challenge in the past has usually been that I haven’t been able to express why I needed to do it. This has led to whoever I’m with growing impatient with me and rushing me through the process, leaving me feeling unfulfilled and even more stressed out.

One of the constants of living with bipolar is the lack of psychological or psychotherapeutic counselling. With drug therapy as a catch-all for treatment, we as patients are forced to be explorers of our own psyche, trying to dissect each little action or behaviour and figure out how it relates to the whole. With each new realization I feel like I take a step closer to being a whole person, but I am also filled with growing regret over the time I’ve lost and the people I’ve hurt because there was no one to step forward and guide me through this process years ago.

/rk

If a Crazy Person Falls in the Woods and No-One’s Around, Do They Make A Sound?

The other day in the car with a family member, we were having a discussion about how hard it is to access adequate healthcare (specifically pain treatment) when you are mentally ill.

“Is it?” they said.

“I’ve seen it happen countless times with other people I know, and it certainly has been for me,” I said.

They looked at me with confusion. “But you’re not mentally ill?”

I was gobsmacked.

I asked them what they meant, since they knew I was being treated for bipolar, and they said, “But you’re not crazy crazy.”

It’s a weird thing that family and friends do — even if they can bring themselves to acknowledge your diagnosis, they still don’t lump you in with (what they imagine to be) the raving lunatics who get locked away in mental wards. The thing is, not everyone who is mentally ill ‘looks’ like a raving lunatic. But some do. And some people can be both of those things. The point is, you do us a disservice by trying to candy-coat our disorders.

It’s not that I want to come down too harshly on the people that support us, the mentally ill. A huge number of people in our lives (possibly the majority) will turn around and walk away because they simply can’t handle being around someone who is mentally ill. Maybe because all they see is the stereotype of the maniac. So the last thing I want to do is alienate those who can see past their own fears and are game to stick it out.

But you also don’t get a free pass for your ‘altruism.’ I mean, when it comes down to it, caring for and about your family members or best friends should just be a normal thing that you do. The fact that they suffer from mental illness is certainly a challenge, but we all come with our own bits of baggage and as long as your mentally ill friend is a putting work into the friendship too, the fact that they are mentally ill shouldn’t be something they need to constantly apologize for.

If you are going to support someone who has mental illness, you need to acknowledge all of their parts. Glossing over their illness or pretending it’s not really there isn’t helping them.

show my crazyThis whole business of playing down people’s mental or physical disabilities seems to be something that is culturally ingrained. Parents play down illness when kids complain because they think they’re just doing it for attention. Doctors play down symptoms and refuse to apply labels because they are convinced that it will become a self-fulfilling prophecy and patients will develop somatic complaints or hypochondriasis (the nocebo effect). But this can have a devastating effect on people with genuine complaints who end up feeling like no one believes them, which in turn can lead to self-harm and avoiding much-needed medical attention.

When you care about someone, avoiding using labels or acknowledging their mental illness feels like you’re being kind. Certainly the last thing you want to do is to bring it up every time they behave erratically or use it as a weapon in arguments. You can’t blame everything that someone does on their illness. So it might seem like the kind thing is to avoid the label entirely, to prove that you see the person beyond the illness.

The problem with acting like their illness doesn’t count or that they are some special case is that it a) is not recognizing the whole person, b) suggests that you think that part of them is somehow unacceptable, c) makes it extra hard for them to get help or talk to you about their illness.

In terms of c), getting help can be in big ways or little ways. It can mean that they feel safe calling you when they need help getting to the hospital, or it can just mean that they feel safe telling you that they can’t meet up today because they feel extra anxious. It is really hard maintaining friendships when you have bipolar and anxiety, for example, for the simple fact that you end up having to cancel or reschedule plans based on your mood. If you are someone I feel I can trust I would simply explain what my issues are that day and reschedule. If you are someone I don’t trust with my mental illness, I just might not make plans at all, for fear of disappointing you or having to deal with uncomfortable questions.

There is a growing trend for public acceptance of mental illness (depression specifically), with lots of public campaigns to increase ‘awareness.’ I remain slightly skeptical about such campaigns, mostly because what I see is a lot of people sharing memes and pre-scripted platitudes with very little actual one-on-one support of people in need. It seems to me that we’ve traded the public erasure of mentally ill people for public awareness and private erasure. Now when people try to speak up about their mental illness, other people pipe up with “well I have depression too, so you’re not special.” It’s great that more people are coming forward with their own struggles, but the last thing that should be allowed to happen is for it to result in a watering down of the significance of mental illness. That more people are experiencing mental disturbances should not make it less significant. It should make it even more apparent that it is an important issue.

It is crucial that we do not create a further hierarchy or caste system of mental illness (depression, anxiety and bipolar are treated in a much more favourable way than schizophrenia or Tourette’s, for example), and playing down someone’s illness as if it is not ‘one of the bad ones’ or ‘doesn’t count,’ hurts not only them, but the mentally ill community at large.

/rk

I Dub Thee XYZ

IMG_0057To say I have never felt the need to define my identity would not be fair or accurate. It has simply never seemed to me to be a thing that is static or definable. At any point in time I may present a certain way, or think of myself in certain terms, but these labels always feel transient and insufficient. I resist being pinned down. I fear being labeled one thing forever.

It might be an easier prospect if any one label had ever possessed any sense of ‘rightness’. Instead I’ve spent a lifetime feeling like an enigma even to myself, and that’s a lot less sexy and mysterious than it sounds. While labels may not be important to everyone, they are useful tools in explaining what you’re (at least superficially) about to the outside world. More important than the labels themselves is what they represent — a clear sense of self — which I don’t have. Or is it that I am just afraid of saying the words out loud and committing to being unchangeable from this point on? What if the thing I think I am today is wrong and what I really am doesn’t even exist yet?

~~~~~~~~~~~~~~~~

My earliest identity was pretty typically defined by my relationships: I was a child to my parents and a sister to my brother. That I was a sister and inherently female didn’t actually establish itself as a thought process for me back then as much as that we were different from each other. I was older and he was younger. I was not him and he was not me, and therefore his role was brother and son and mine was sister and daughter. There was a certain logic and balance to that and it didn’t feel overly clouded by sex or gender, especially given that we dressed pretty similarly most of the time (hand-me-downs in the 70s meant a lot of plaid shirts and cords or overalls for both of us).

Beginning daycare and school brought new and confusing questions about my identity. Suddenly gender roles became an unavoidable part of my existence, and my less-than-skillful ability to decipher and mirror them led to alienation from my peers. Nothing felt natural or right. I knew I wasn’t like the boys (all the boys I knew were either athletic and confident or cruel and violent). But I also didn’t feel like I was one of the girls. Kids (male and female) would tell me I wasn’t pretty enough to be a girl and that my freckles made my face look dirty. I was simultaneously fascinated and terrified by the other girls in my class; they could also be cruel, but usually through emotional manipulation or shunning. I would try to fit in with them by mirroring behaviours, or giving them gifts, or dressing the same, but that just ended up painting me as the weird stalker girl. So I switched from trying too hard to not trying at all.

For a long time after that, my identity was… nothing. Invisibility. Most of this was self-preservation. Being invisible protected me from bullying at school. It protected me from abuse at daycare (It was a sickly mixture of pride and relief that I felt when one abuser said, as he repeatedly whipped my brother and I across the legs with a wet towel, “Why can’t you be more like her, you don’t hear her crying, do you?”). Being able to be quiet and disappear into myself saved me from what I was sure would only be worse abuse. It made me a boring target. I got very good at stifling my emotions and not reacting. No jumping at sudden noises. No flinching. No me. Being no person and having no identity seemed like the safest identity, even if it wasn’t a real identity at all.

Obviously I couldn’t stay invisible forever, and I made various attempts throughout my childhood and teens to reach out and form connections. Even though I feared the inevitable rejection when I was bound to screw something up and alienate them, I still ran into the occasional person who lit up my senses and made me want to know them more than my fear warned me against it. This meant locking down my gender identity. Well, sort of. It was more by a process of default than anything else. Heteronormativity was what presented itself, and so that’s what I was, at least on the surface: A girl attracted to boys. It was the only option that seemed viable in the environment I was in (or so I thought at the time: naivety might be responsible for my narrow view of the world at that time). If I wanted my friendships with girls to thrive, I needed to be straight. I’d already learned in the past that coming on too strong would put them off. I sure as hell wasn’t going to risk crossing any lines and losing my one friend (There was always only one friend. It might have been a different one friend at different times through the years, but I have always been a best friend kind of person. And that’s not necessarily a good thing: I tend to put all my expectations and desires in one pot, and that’s a lot to live up to.) Being ‘normal’ (at least on the outside) felt safe and reassuring. Spending my time with girls while mooning over the occasional guy felt right. I liked girls and boys in different ways. I just wasn’t sure if the different ways were the same as my girlfriends. I did know that I didn’t seem to be attracted to the same kinds of guys that everyone else I knew was.

IMG_0162Looking back, it feels a lot like I just put thinking about my identity on hold. I just assumed I was cis-gendered. Okay, that’s not entirely true. I assumed that cis-gendered was how I was going to live and that no other option was really viable. Not being female didn’t feel like an option. I also knew I wasn’t gay because I liked guys (well, some of them, anyway). But in my private explorations and masturbatory fantasies, I knew that I fantasized about both men and women sexually.

It wasn’t until my 20s when suddenly I was very strongly attracted to a friend of my best friend that I came out as bisexual to her (the best friend, that is). After that point I felt no qualms about sharing this fact with boyfriends or anyone who would ask, but it didn’t actually yield much in terms of relationships with women other than being invited into a few foursomes in college.

Once I married for the first time, I felt like any chance at being anything other than an outwardly straight woman was completely gone. Having a child left me feeling even more locked in. In a similar way to when I was a child, my identity was once again defined by my relationships, except now there was an added burden. I felt I needed to be those things out of responsibility to them. It didn’t feel possible to change who I was without causing irreparable harm to the people around me.

When that marriage fell apart, and the one after that as well, I still felt confused and dissatisfied with the image I was projecting to the world. An unfortunate choice of treatment with anti-depressants for what turned out to be anxiety due to bipolar ended up pushing me into hypomania (and inevitably full-blown mania and delusions, followed by a horrible crash of severe depression). During this period I started chasing the numbers on the scale (and on my clothes) downward. I became obsessed with the number zero, or even better, less than zero. I got my weight down to 103, sure that I could crack the lower side of the 100-mark. I made it to zero in clothing sizes and counted it as a victory when I fit into my first piece of clothing in the 00 size (and then even a pair of jeans in the juniors department). It was more complicated than anorexia or body dysmorphia. I was experiencing a recurrence of my childhood identity crisis and my desire to disappear, but with a new twist. I couldn’t be me unless I could see my bones. The only way to truly get to the truth of who I was inside would be to bring the inside out. The flesh was getting in the way of my real self. For so many years I had avoided cameras and reflections of myself because what I saw looking back at me didn’t match the image in my mind. Suddenly I could see the real me peeking through. I didn’t shy away from cameras anymore (Although ironically, there are almost no pictures of this period of time because when you develop a reputation for not wanting your picture taken, people start to take you at your word).

In spite of being a fundamentally unhealthy thought process, it was the first time in my life that I felt like I was finally coming close to understanding who and what I was, and what I was meant to become. As the pounds fell away and I lost the more obvious characteristics of being ‘feminine’, like breasts and curves (and having regular periods), and could see what lay underneath, I felt more comfortable in my body. I still didn’t feel like I knew what I was, gender-wise, but I no longer felt so locked into decisions that had been made for me before birth. My body wasn’t forcing me to be a woman.

Of course, delusions (and there were many more than just those tied into my body) generally can’t be allowed to continue unchecked, and I eventually had to be treated for my mental illness, a process that involved a cocktail of drugs that fortunately/unfortunately caused me to gain all the weight back (and much, much more). I wouldn’t say I was healthy physically or mentally (I mostly felt emotionally and sexually castrated). I felt trapped by my body again, and thanks to my crazy-person shenanigans, I had no job and anything approaching any sense of personal identity had been obliterated.

~~~~~~~~~~~~~~

This is getting to be an awfully long story of personal discovery for it to have no personal discovery at the culmination of it.

I’d like to say that seven years from my breakdown I’ve had a revelation and finally have my shit together as far as my sexual and gender identity are concerned. In terms of sexuality, I finally became part of a community where being bisexual or gender non-conforming is accepted, but it hasn’t yielded any serious relationships with women. I did fall in love again and marry a man; although I confess that what initially attracted me to him was the fact that he didn’t entirely fit a 100% masculine mold (he’s definitely cis-male, but the first man I’ve been with who is more heteroflexible than heteronormative).

For a while, I thought I was beginning to grasp my sexuality and labeled it pansexual, outwardly explaining it as being attracted to people without regards to gender, but inwardly being pretty sure that what attracted me most was both of those things in one person, especially gender-fluid people and specifically persons with both male and female sex organs/characteristics. This set off a whole series of confused shame feelings while I tried to parse whether what I was doing was simply fetishizing transwomen. I don’t think there is a simple answer to that; ultimately I think that fantasies are fine (and private), as long as you treat real people with respect.

This revelation didn’t interfere with my relationship with my husband, since we are polyamorous and thankfully I could be open about it. But it still didn’t entirely answer questions I still had about my own gender identity. I didn’t feel male or female, but as usual I just let people assume I was female because not only did I not want to have to explain how I felt, I also didn’t have the words to explain how I felt.

Then my sexuality up and slipped away.

I know that this is not unique. There are people all over the world that experience sexual dysfunction, and while I know that technically this is what I am experiencing, it doesn’t feel like that. It feels like transformation. Whether it’s from the drugs I take or from nerve damage from my diabetes, I started losing sensitivity; gradually at first, until one day I realized it was just gone. But it’s more than that: I don’t feel any sexual attraction at all anymore. I have zero interest in sex. I am still romantically attracted to people (I think? When you go from a hypersexual being to no longer having any sexual feelings, it can be a bit tough to separate sex and romance for the first time in your life). At first this terrified me, not because I missed sex, but because I didn’t. And that hurt, because I didn’t know how to explain that to my husband. I felt a bit like I had committed fraud in marrying him and then turning around and completely changing the deal.

Claiming an asexual identity also feels like a betrayal. Coming out as asexual means more than just claiming something for myself, it is a reflection upon him and on our marriage. It also turns us into a cliché: the couple who is poly because the wife is frigid.

I’m still not even addressing my gender identity, am I? I put it off and put it off because I always have this sense that anything I lay claim to and change later on then becomes a lie. When I say I don’t have the words or terms to express who I am, that also isn’t as true as it once was: we’re smack in the middle of a gender revolution and treating my own situation like I’m some special snowflake only hurts me, because my struggle is invisible. No one knows that they mis-gender me, because I don’t correct them. Stewing over things other people say because they don’t understand me makes me sound like some emo teenager pouting in my room. But I spend a lot of time feeling “what’s the point” of coming out when it will just increase the pressures and expectations upon me to conform to a new ideal. Being cis is easy. It’s a cop out and you shouldn’t be a thing just because it’s the easy thing to do, but that it is easier no one can deny.

I don’t want to be male or female. Or at least, I don’t feel like I am either of those things. I joked to my husband that “I’m male in the winter and female in the summer,” but that was really a simplification and doesn’t suffice as an explanation. I think gender-fluid or agender feels more correct, but even those words don’t cover it properly. Maybe I’m just androgynous and it isn’t a gender thing at all, but I don’t think so. Certainly I present as mostly femme, but I can’t figure out how much of that is down to socialization: I don’t fully have the confidence to let myself not be female and explore what that might look like. Much like being openly asexual, I feel scared about what the implications are to my husband and son if I explore my complicated relationship with gender openly. It should be stated, clearly, that my husband, rather than freaking out at my revelations, has been very supportive. But it’s one of those things that you don’t really know how it will go until you’re in the middle of it, you know?

There are no great revelations here. It feels a bit like running internal diagnostics. All I can do is rule out what I’m not and work closer to the truth. I’m not straight. I’m not male or female. I don’t think I’m trans (although the trans* umbrella feels closest to correct). Asexual agender polyamorous panromantic feels something like close to right in this moment, but that might change an hour from now.

I just want to be allowed the same freedom granted to every new age hippie to ‘find myself’, at my own pace, and by my own terms.

/rk

Insane, Got No Brain

Insanity is inconvenient.

There is this impression which ‘normal’ people have that insanity is somehow a result of personal deficiency.  As if somehow having your shit together can prevent it from sneaking up on you.  That having money or friends or a good family will offer some sort of protective barrier.

It certainly seems that way, right?  Because the really crazy people you know are separated from family.  They’re destitute.  They’re those lunatics on the street, mumbling under their breath and yelling at no-one and everyone.

It doesn’t occur to them that many of ‘those people’ might have had all of those things.  It’s simply that insanity pushes those things away.  It pushes them away and takes you away and discards you.

It is really hard to form connections with people when you are mentally ill.  Doing that requires opening up.  Not just opening up and revealing who you are inside (which in itself is terrifying), but opening yourself to damage from the outside.  Because other people are dangerous, even if that isn’t their intention.  When you are mentally ill, your wrongbrain tries to steer how those interactions are going to go.  It sabotages.  It distracts.  It exhausts.

~~~~~~~~~~

About a year ago I started feeling things that weren’t there.  Burning sensations.  Popping sensations.  Vibrations, numbness and even feeling moisture on my leg when I could clearly see there wasn’t anything there.

I was diagnosed with peripheral neuropathy, caused by my diabetes.  Unfortunate, but normal.  Normal to feel things that aren’t there.

~~~~~~~~~~

I’ve been having auditory hallucinations.  This isn’t new.  I’ve had them to some degree on-and-off since I was a child and it’s probably why I was originally thought to have ADD.  I could sit for hours, staring off into space.  I remember performing really well on tests (at the gifted level), but struggling to focus while I pushed the sounds and images out of my head.

Hearing sounds that aren’t there means you’re crazy.  Not normal to hear things that aren’t there.

~~~~~~~~~~~

Wshhhhh shhhhhhhh whisper shhhhh wuhhhhh shhhhh

Why? Shhhhh whisper why shhhh no no oh shhhh

Sounds filling my head in a quiet room is not quite so bad.  But it wears on me.

Stick me in a room with other people, all competing to be heard, and the sounds in my head do battle.  I can’t focus.  I can’t keep track of my spot in the conversation.  I can’t sing in the choir when there are two voices; the one that comes of my mouth and the one I hear in my ears.  It’s wrong.  All wrong.

I know that I can’t trust myself to be with people when I start to see them as antagonists.  I feel the stares.  I hear whispers and can’t tell if they are from inside my head or behind my back.  People’s looks feel aggressive.  Their words feel dismissive.  I don’t want to be around friends because I don’t want my brain to tell me lies about them.  It’s easier to hide where the voices can lie, but at least my eyes don’t confirm my suspicions.

But I can’t hide completely.  What do you do when your lover reaches to kiss your hand and the nerves endings in your skin send your brain a message of burning and your brain answers back with a mental image of melting, sloughing skin?

~~~~~~~~~~~

My body is sending my brain the wrong signals.  My brain is sending my body the wrong signals.  Those two things should be the same and reasonable.  But I don’t kid myself that they are.

On a drive to the doctor’s with my mother, we make casual conversation.  “Do you miss your car?” she says.

“Once the neuropathy and the muscle spasms got bad I didn’t feel it was safe to drive.”

“Ah.” she says. “Good point.”

“I also kept finding myself thinking about driving into oncoming traffic.  I couldn’t get it out of my head.”

She says nothing and just presses her lips tightly together and keeps driving.

~~~~~~~~~~~

Insanity says “fuck your schedule”.

Insanity says “you’ll never achieve anything”.

Insanity says “I decide”.

/rk

A Writer Writes

Except for when they don’t.

TWENTY THINGS I DID LAST MONTH INSTEAD OF WRITING

I’ve often said that even when I’m not writing things on paper or online, I’m still actively a writer because I am concocting stories in my head. It’s always been part of my process to mull things over for a while (sometimes a very long while) in the safety of my mind before I birth them fully-formed onto the page.

But in June I didn’t write. Not even in secrecy behind the shroud of my subconscious. I was a blank slate. And my feelings about this alternated between apathy and frustration. But mostly apathy, if I’m honest. I became rather resigned to it.

What I did instead:

1. I moved downtown. I made a bit of a disastrous decision to move out of town last year, for all the right reasons. It didn’t stick. Luckily it was fixable, but not without considerable upheaval for my loved ones. It helps that we moved to one of the most vibrant neighbourhoods ever.

2. I unpacked. In like, 48 hours. I really like our new place and I couldn’t wait to feel settled after feeling out-of-place for so long.

Leading up to our move, I had rapidly devolved into a useless lump who crawled into bed and refused to come out. I barely packed. I barely did anything. Some of this was due to physical pain, but I think it was mostly emotional. The stress of having to move and pack became this insurmountable challenge and each time I tried to fight inertia, I had a meltdown. If this infuriated my husband, he didn’t show it. I think he was just really, really concerned I was having (another) nervous breakdown. Or possibly was too busy packing to properly have time to deal with his own feelings of frustration. Either way, it wasn’t exactly a good time for either of us.

But then, with moving done, I unpacked everything. My stuff, everyone else’s stuff, all the stuff. And it was a relief. I still don’t feel perfectly settled, because there remains some art at our old house that needs to come over, but I feel more… me.

3. I stopped taking my bipolar meds.

MarketFoodMedley

4. I bought fresh produce. One of the best parts of living less than 10 minutes’ walk to a historic marketplace. Truly. I don’t even know whether the quality of the food is better… but the experience is lovely. I like strolling along outside in the open air and the fact that there are different choices every week. Grocery shopping usually bores me. This doesn’t.5. I thought about drinking.

6. I baked a lot of bread. I’ve owned a breadmaker for many years, but it had been stored away, unused for a long while. I dug it out and tried to get back in the groove of things, with initially disastrous results. First I used the wrong kind of yeast (which was a rookie mistake, and made me feel pretty stupid). Then I followed my old favourite recipe and the bread didn’t mix properly. Then I followed the same recipe, but added some water to the mix and mixed it by hand. That worked, but the bread was edible but not amazing and I was still frustrated at having to hand mix something that was supposed to be an automated process. I then tried adding a bit more water from the beginning and bingo! It finally worked. And was delicious.

The whole process annoyed the hell out of me, because my memories of making bread previously were that I was flawless at it, and I had very little tolerance for my newly discovered failures. It probably helped that my husband insisted that it was all delicious, and kept eating it… even the bits that I wanted to throw out.

7. I argued with people on Facebook. And Huffington Post. And the Ottawa Citizen. Less so face-to face.

8. I struggled with arthritis pain.

9. I bought a bench for the shower so a) I can sit down when I’m too weak to stand, and b) I don’t fall over and break my bones.

9. I craved tequila and Coke.

compotecollage

10. I made compote. I cannot explain the unreasonably huge feeling of accomplishment I experienced over this mundane achievement. Maybe it’s because it is the closest I have ever come to making jam on my own. Maybe it’s because I discovered a jam substitute which I can make without added sugar (something I’m supposed to care about as a diabetic, but usually fail at). Husband and child also loved it, which probably had something to do with said feeling. I mean, I would have gladly eaten it all myself, but I am a recognition junkie. Apparently.11. I started losing vision in my left eye. First I started seeing a lot of spots in both eyes. Then one night after being out with friends, I came home and suddenly found myself with a blurry splotch in my field of vision on the left side of my left eye. It would make sense, given my various immune disorders, that this was optic neuritis, or retinal detachment, or any number of things. I have since been to the ER and to an ophthalmologist, but they can’t find anything physically wrong. I have been referred for more tests.

12. I shaved my head. Not the whole thing, just the sides. Arthritis in my shoulders is making it harder to deal with styling my hair and I am rapidly getting more and more impatient with hair brushing against my face and neck. I also made the decision a while back to stop dyeing my hair and the whole process of ‘waiting’ for my grey to come in is going entirely too slowly.

13. Two weeks later, I cut most of the rest of my hair off, too.

bakingcollage14. I baked all the things.

15. I saw a bunch of plays at the Ottawa Fringe Festival. No acting for me this year, but I volunteered for a few shifts with my husband. With my physical health being so unpredictable, this was a scary commitment, but having him do it with me helped make it go fairly smoothly. I had to use my cane a lot, which always makes me feel self-conscious, but ultimately I enjoyed myself and it was good to be doing something theatre-related, (especially when my own acting future seems somewhat uncertain right now). Volunteering has its perqs (besides free theatre) and we also got free pizza from ZaZaZa and free poutine from Smoke’s Poutinerie. By the end of 10 days, I was exhausted, but well-fed.

16. I wondered if my eye problems were in my mind. The spots haven’t gone away. But they get better and worse. Maybe they’re in my imagination. Maybe they’re bipolar hallucinations. I don’t know what to do with that information.

17. I bought some brightly-coloured pillows for our black couch. I like them. They please me.

photo

18. I cooked a lot. I think I’ve always been a pretty good cook. But in the last few years my energy and ability to cook has been pretty erratic. Somehow the combination of fresh local ingredients and a gorgeous new kitchen has spurred me on to create. And perhaps create is the key word here — ever since my illness has made acting next-to-impossible (and with my ability to write on hiatus), I have really felt a rather excruciating loss of identity. Food has become my canvas. Which is great, really. I’m eating better. I’m feeding my family. I just worry that like most of my obsessions, this one will only last a few months before I completely lose interest again.

Or maybe it won’t. There is a constant stream of new and interesting ingredients flooding the market. At least until winter. Maybe then we’ll be back to tv dinners and takeout. I hope not.

19. I felt guilty for making everyone move. They’re happy to be here. They’ve said so. It’s a fantastic neighbourhood. We have had beautiful walks, eaten at great restaurants, met some lovely neighbours, watched fireworks on Canada Day (a 10 minute walk from the house!), and played games at the local board game lounge. But I still feel guilty.

20. I broke my toe. It hurt like hell. It still hurts on-and-off and is swollen and a sort of grey colour. Walking on it causes a purple bruise to spread on the underside of the toe and the top of my foot. It is remarkable how much one little toe can cause discomfort while walking. So I’ve been mostly stuck at home for the last few days. Whenever I venture out, it makes it worse. I try to sit with my feet up on the coffee table, but then it aches. I try to sit with it on the floor, but it aches.

So I gave up and crawled into bed.

And started writing.

/rk

(originally posted at http://medium.com/human-parts/a-writer-writes-except-for-when-they-dont-76a82f6c3331)