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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My Hypochondria Is All in Your Mind

Hypochondria all in your mind

Any person who is eventually diagnosed with a chronic illness (especially autoimmune disease) will have likely been first labelled a hypochondriac. The likelihood of that happening at least doubles if they are gendered female.

The medical profession has a long history of labelling women as emotionally labile and as unreliable reporters of their own symptoms.

HYSTERIA: A psychological disorder (not now regarded as a single definite condition) whose symptoms include conversion of psychological stress into physical symptoms (somatization), selective amnesia, shallow volatile emotions, and overdramatic or attention-seeking behavior. The term has a controversial history as it was formerly regarded as a disease specific to women. (source: Google)

For women, complaints of headaches, generalized aches and pains, and the feeling that ‘something isn’t right’ with their bodies are dismissed as somehow illegitimate, either because of the emotional state of the patients reporting them, or simply the perceived propensity towards emotion by women as a whole. Even if the symptoms are given some credence, the phrase “somatic complaints” gets thrown around: Either the complaints are fake because women are over-emotional, or they are real but are caused by women being over-emotional. It’s a double-bind dilemma from which there isn’t an easy escape: Either way, genuine issues end up being delegitimized and important diagnoses end up being missed.

SOMATIZATION: Conversion of a mental state (as depression or anxiety) into physical symptoms; also : the existence of physical bodily complaints in the absence of a known medical condition. (source: Merriam-Webster)

If a doctor is convinced that a patient’s complaints are mental in nature, then by all means pursuing further evaluation to determine the source of those psychological issues, whether it be depression or anxiety, is warranted. However in many cases, that doesn’t seem to be the next step — a doctor will dismiss the symptoms as emotional manifestations and provide no further treatment; which begs the question as to whether they would do the same if the patient was male and presented with the same complaints.

Part of the challenge, undoubtedly, is the fact that women routinely have to deal with unpredictable aches and pains which are considered to be a normal part of our lives. Hormonal swings and surges, headaches, monthly bleeding, childbearing, childbirth, menopause — the list goes on. Women are constantly subject to changes in our bodies which we are expected to accept without question. For the most part, we don’t complain (to our doctors, at least), except when something is different or unexplained.

This is not something for which we should be discredited.

If anything, women should be (in general, as a whole) given special credence when it comes to self-reporting. Most women are taught and groomed to be more aware of their bodies and the changes that occur: It’s perfectly normal that we become aware of changes, and become aware of them early.

Of course the problem with catching wind of things in the early stages of illness is that not all of the diagnostic signs may be evident yet. That takes time. That takes testing, and ruling out multiple hypotheses before you lock down the right diagnosis. Which is all the more reason for not dismissing what may seem like vague and non-specific complaints: Further monitoring is necessary to determine what will develop.

If somatization is by definition physical symptoms in the absence of a physical cause, for it to be labelled as such, you have to wait long enough to determine that no cause will present itself.

Hypochondria image 2bUltimately, even if nothing else physical does develop: A patient who is in distress needs to be monitored and needs to be treated, no matter the cause.

Hysteria and somatization are labels which have reached such widespread use that it has become an almost universal assumption, both within the medical profession and in the public at large, that the cause-and-effect equation works in one direction only. The reality is so much more complicated.

The assumption is that anxiety or depression are causing the physical symptoms, when the reality is that for many, anxiety and depression are themselves symptoms of their illness.

MALAISE: A general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify. (source: Google)

In the early stages of disease, the physical changes which are happening within the body cause anxiety in the patient both due to the unexplained nature of their physical symptoms, as well as from very real physical changes and damage. Many diseases, especially autoimmune illnesses, involve whole-body changes that affect the systems which control cortisol levels, adrenalin, and mood.

“Just because I’m paranoid doesn’t mean they’re not out to get me.”

When your body is quite literally under attack, being hyper-aware of that fact and taking note of what may seem like innocuous changes is just good crisis management. What gets misconstrued for hypochondria is really just a form of hypervigilance.

For many chronically-ill people, the notion that they are hypochondriacal is reinforced by their conversation patterns and behaviours. They readily talk about each new ache and pain, and rattle off the results of their latest doctors’ visits. For the people around them, this can seem both self-obsessed and a self-fulfilling prophecy: If you keep talking about being sick, you’re going to get sicker. [NB. That’s not how that works.]

But again, it’s a no-win situation for the sick person. As patients we are trained to rattle off our symptoms to each and every medical professional we meet. We are expected to be self-aware and to advocate for ourselves. We have to do research into our diseases and be ready to steer our care in the appropriate direction. Being aware and informed about our bodies (and about illness in general) is about self-preservation. It’s not that unusual that we might want to talk about it and share information, just as anyone would share other parts of their lives with the people closest to them.

HYPOCHONDRIA: Abnormal anxiety about one’s health, especially with an unwarranted fear that one has a serious disease. (source: Google)

Hypochondria is a clinical term. It describes an abnormal obsession with sickness. Labelling someone who is anxious about their health (or who presents with an as-yet-unidentified illness) a hypochondriac is akin to calling someone who likes a tidy house obsessive-compulsive. When it’s done by a medical professional, it’s harmful and dismissive. When it’s done by your friends or family, it’s hurtful and ostracizing.

Anxiety isn’t something to be so quickly dismissed — while clinical levels of anxiety can be paralyzing, anxiety in its initial stages is often a warning sign. It’s your body’s way of signalling that something is wrong and needs to be addressed. Listening to that signal can save your life.

/rk

The Elevator of Grief and Acceptance

When you’re first diagnosed with a chronic illness, there is, quite understandably, a period of adjustment. There are the physical changes that are now an undeniable part of your life. There are treatments, doctors’ appointments and medications. You are likely to be more tired (if not thoroughly exhausted); whether it is from the side effects of medication or from the inevitable toll that illness takes on your body as it tries to heal itself. But perhaps the hardest adjustment is the mental processing as you come to terms with these changes.

elevator

(photo/www.forms-surfaces.com)

ONE

Your first chronic illness hits you the hardest, but can also (down the road and after much introspection) be the easiest to bounce back from. Obviously the changes to your life are hard to take, but the biggest hit is to your identity. Going from being a healthy ‘normal’ person to a ‘sick’ person is a devastating blow. There is a lot of crying and “why me?” and feeling sorry for yourself. Accepting that this is your new normal can be very difficult to accept, especially as you work your way through the available treatments for your illness and they prove ineffective.

Ultimately though, you’re faced with two options: giving up or moving forward. Some do give up. Or resort to substance use. Or commit suicide. But for most, I think that the feeling that you can’t possibly go on fades a bit when you discover that you are going on every single day.

So while you may not recover physically, you recover mentally (if bruised and battered under the surface).

TWO

Your second chronic illness feels like a betrayal. The first one was a betrayal too, of course — bodies should be able to be trusted to do what they are designed for — but the second illness carries with it a meanness that catches you off-guard. You faced your first illness head on and survived it! You put in the work from grief to anger to acceptance! How is this possibly fair? 

Pushing through the grieving process the second time goes faster because you already know the drill. You know there’s no point in fighting it. There’s nothing to be gained by being a drama queen or asking for sympathy. You’ve already lost some friends with the first illness and so losing some this time around doesn’t feel like a surprise, just an inevitability. You accept treatment options, but without the same optimism you had with your first illness. Time has taught you that treatments for chronic illnesses are hit and miss. Publicly you are stoic. You cry in private.

You find your new normal and accept it, but there is an underlying bitterness that wasn’t there before.

THREE

With your third chronic illness you start to feel paranoid all of the time. Your body feels like the enemy. With all the drugs you’re on it’s hard to distinguish the difference between symptoms and side effects. You don’t expect treatments to work, but you go through the motions anyway, because you can’t quite bring yourself to give up. You have almost no friends now (and you’re not a very good friend to the ones you have), your marriage(s) have disintegrated and you’re worried you’re going to be fired because of missing so much work.

You feel out of control. Every time there is stress in your life, whether it’s a change in dinner plans or moving houses, you freak out and have a panic attack. You find being around people emotionally taxing.

You don’t feel safe. You wait for the other shoe to drop.

FOUR

When your fourth chronic illness is diagnosed and it’s a mental illness, you’re not surprised — it only confirms your shame. By now you’ve long since suspected that your physical deficiencies are your own fault. You know that it’s your personal shortcomings and the poor choices you’ve made that have initiated this reign of terror. Whether it’s God or the universe or karma or just some sort of subconscious internal justice, you deserve what’s coming to you. The battle lines have been drawn and the war is on. You feel sorry for yourself, but you’re inclined to lie down and take it.

It takes a long time to push through this one. But you keep not dying and life gives you reasons to care so you try again.

FIVE

Your fifth chronic illness feels strangely anti-climactic. By now you’ve become an expert at spotting the signs and knowing when something’s not right with your body. You know the diagnosis before it’s given. Hearing it is still upsetting, but in a strange sort of detached way, like it’s happening to someone else. You’re not sure if you’re just in denial or if maybe this is your new, more mature way of handling these things.

SIX

Fuck being mature. Fuck being reasonable. Your life is over. You’re not dead but you’re in a state of limbo where you’re trapped in your body and even your mind won’t even cooperate. You think a lot about suicide, but mostly about how mad you are that it’s not an option. You feel bitter and angry at everyone.

Then things ease up a bit and you think “Now’s my chance. I have to act quickly to get the things done that are important to me.” And by doing those things you start to have some hope. You think maybe you can just pretend that things are normal.

SEVEN

“This is how it is,” you think. “I am never going to escape this.” You try to look ahead to the future and all you see is your useless body, crumbling before you. You know that you are falling apart. Organs are going to continue to fail. You see a pain specialist who tells you that there is no solution and that you are going to have to learn to live with the pain, just like you have had to learn to live with all of the other unfair tricks that your body has played on you.

None of the illnesses you have come with cures, except for that one time you had cancer and they could just cut it out of you — you hold a certain fondness for that cancer for at least coming with a clear solution. Now your illnesses are causing other illnesses, like a cascade of evil dominoes spreading throughout your body. You hate your flesh and bones. When the pain is very bad you want to cut off the offending limbs; except the pain is so widespread you’d be left with nothing.

You try to remember the stages of grief and find your place back at acceptance, but acceptance isn’t the problem. You accept that this is reality. You accept that the eighth illness is coming (and for that matter nine, 10, 11…). You just don’t know how to be happy about that. Or at least during that. You don’t know how to not be bitter and angry all of the time, when everything is a struggle. You don’t know how not to guard yourself and close yourself off from the world. You don’t know how not to be scared.

It’s not that you haven’t learned how to do these things before — it’s just that with each successive illness, there isn’t much space left in your mind to do the good things. You’re so busy fending off each illness from all sides on a daily basis, that trying to also connect with people, and being trusting and relaxed feels impossible.

How do you relax in the middle of a war? How do you ignore the pain in your limbs and the screams in your ears (and new threats all around you) and try to be happy in spite of it?

/rk

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

Poly and Crippled: When Your Other Partner is Your Disability

Managing your polyamorous relationships obviously becomes exponentially more complex with the more partners you have. Whether you believe in hierarchical relationships (primary, secondary, etc.) or not, there are still times when having to prioritize is inevitable. Everyone has times when they are a squeaky wheel, and as long as it is not part of a pattern of emotional manipulation, I think that’s completely reasonable. After all, if you add kids to the picture, or other situational stressors like death of a family member, or loss of a job, a little extra attention or comfort may be needed that can, in turn, impact the time you spend with other partners. Certainly this is where having metamours that are friendly or understanding with one another’s needs is important, and hopefully there is some give and take and flexibility with scheduling, so that everyone feels their needs are being met fairly.

broken heartBut what if your wheel never stops squeaking? When you suffer from chronic illness (in my case, both physical and mental illness), and you spend much of your time trying to deal with the day to day issues associated with that illness, it can feel virtually impossible to dedicate any kind of emotional energy to multiple partners, never mind one. It is much easier to speak in philosophical tones about polyamory and your theories on ethical non-monogamy than to actually follow through with seeking out and maintaining multiple relationships. The entire process seems impossibly daunting. When your main focus each day is the struggle of getting out of bed, showering (maybe), finding ways to deal with intractable pain, etc., the acts of communication and caring for the emotional and physical needs of another person seem insurmountable. And quite frankly, like work.

It cannot be discounted either, the stress that this puts on the partner of the disabled person. If you are their squeaky wheel, how can they possibly meet the needs of other partners? I have sometimes thought that the solution to this is to seek out partners during periods of stability, but of course as anyone can tell you, finding partners isn’t quite so convenient that they appear out of the woodwork on request (in spite of what some people seem to think on OkCupid). Even if that were possible, who is to say that the new partner would be willing to put up with an over-demanding metamour? It certainly has never been my intention to sabotage my partner’s other relationships, but I cannot deny that it may have occurred in spite of that. When you are dependant upon another human being for many of your daily needs because of disability, it’s a pretty normal reaction to be a) fearful that those needs will no longer be met, and b) filled with guilt over that fear.

A good deal of the stress I have personally felt because of my situation dissipated when I accepted the fact that, at least for now, the only other partner I can manage is my illness. Right now, it requires my time and devotion. Accepting that, and setting some goals as to how I can satisfy some of the needs that it represents (like learning how to manage pain and gaining further independence) have allowed me to slowly get back to being a better partner in my primary relationship. I had spent so much time obsessed with ‘poly failure’ guilt, that I hadn’t been tending to either my partner or my disability. I also spent such an enormous amount of time worrying about whether he was unhappy because he wasn’t seeing anyone else that it clouded my ability to deal with anything else that needed to be tackled in our relationship. It’s hard to build emotional stability when you’re in self-protection mode.

Whether it is due to disability or some other life change, it’s tremendously important to take the emotional time to process and if necessary, withdraw. It’s a natural byproduct of polyamory that we check in with others around us in order to determine their needs and how we can best accommodate them. The problem for some (i.e. those of us who are naturally co-dependent and ‘fixers’) is that we don’t always look inward (or rather, if we do, we do not allocate the time to mend our broken bits the way we try to with others). I know a few people in the community who have declared themselves ‘their own primary.’ There are certainly some who, upon hearing such a pronouncement, might consider that a selfish act, but really, it’s pretty hard to attend to other people’s needs when yours are constantly nagging in the back of your mind. Being your own primary, to me, seems like an excellent way to communicate to others that you declare yourself valuable and hold yourself accountable to your own needs.

Obviously some of this can be mitigated by being honest (and forthcoming) about your own needs so that others can help — but I think it is even more important that we try to figure out ways (even small ones) to help ourselves. There is absolutely no shame in asking for help, but there is also a lot to be gained in terms of feelings of self-worth and independence, by taking control and allotting time for yourself.

The first step is acknowledging that those needs exist. And sometimes, the second is acknowledging that your illness is your life partner — you need to take care of that relationship so you can take care of the others.

/rk

Why Do Gimps Get All the Best Parking Spots?

get well soon

                           Get well never

You would think that being disabled would be the worst part of being disabled, but it’s really not. Being disabled is the most painful part, the most exhausting part, the most depressing part and the most tedious… but it’s not the worst. The worst is other people and how they treat you (or refuse to treat you, as the circumstance may be).

It is virtually impossible to go through a single day without being negatively impacted by the attitudes that society holds towards the disabled. Even if the impact of those negative attitudes is as (allegedly) benign as neglect.

I am disabled because society disables me. (Social Model of Disability)

I have disabilities, and I choose to claim ‘disabled’ as part of my identity, but the reality is that it is society that de-values me and places obstacles in my way which cause me to be handicapped. When I visit an office building or a friend’s apartment and there is no elevator, it is the lack of an elevator that causes me difficulty, not my mobility issues. Because if it had an elevator, those same mobility issues wouldn’t hinder me. Everyone appreciates elevators, whether they have mobility issues or not. They may make the choice to take the stairs, but that is still a choice. The difference for someone with extreme mobility issues is that it leaves them with no choice.

When people balk at accommodations, the elevator is the first example I always bring up. We all appreciate accommodations that make our lives easier, or quicker, or more comfortable. We just don’t always think of them as accommodations.

Public transit is an accommodation for people who cannot afford a car (and is subsidized by municipal government). Grocery carts are an accommodation for those who cannot carry all their groceries in their arms (and are provided free of charge by the store). There are countless further examples, but the point is that everyone, whether they consider themselves disabled or not, has received an accommodation or subsidy in some form throughout their lives. It has made their lives easier, and it is unlikely they’ve ever felt (or been made to feel) guilty about it.

So why is it that the disabled constantly has to justify or apologize for the accommodations which will (at most) equalize the quality of their lives? Why is it that, as a disabled person, I am deemed to have less value than a non-disabled person.

Because I don’t work. (Capitalism and Work Ethic)

Oh Capitalism, this is your fault. Thanks to capitalism, we live in a society where we equate (hard) work with personal value. If you have nothing to contribute financially (because money = value), then you are worthless. Worthless people don’t deserve accommodation. Worthless people certainly don’t deserve charity or financial support, because you need to work to earn money (so again, no work = no money).

Because I am different. (Normalization and Social Role Valorization Theory)

Normal is good. Normal people are those who work, those who are able-bodied, those who do not suffer from mental illness, etc. Being different in any way means that you have less value. Having less value because you are not normal means that you are not worthy of the things that normal people have.

Society uses both of these reasons to not only justify crippling me and other disabled persons, but also as a means to regulate our lives. Social Darwinists cite biological imperative and ‘survival of the fittest’ as excuses to justify segregation and refusal of accommodations or support. Any increases in social services, charity or assistance that do occur tend to be accompanied by an increase in the regulation of disabled persons’ bodies and lives. We are treated like children, forced to beg for financial assistance, account for how we manage our meagre finances, and repeatedly prove our disability. We are perpetually reminded of the burden we represent (and asked to push ourselves to our limits to ‘do our bit.’). We are an itemized list of our disabilities; our other characteristics and talents irrelevant. Disabled people, as non-workers, do not merit a separate identity.

If I worked, even a little, I would have value. (Marxism)

Marxism at least allowed for the fact that disabled people had value even if the output they produced wasn’t equal to the purported ‘norm.’ Marxists saw that work wasn’t a value to be solely idealized on its own, but rather as a means of self-actualization. While this certainly helps justify the inclusion of subsidized work programs within disability support for those who want them, it leaves those who are unable to work without perceived value.

If I can’t work, do I still have value as a human being? I certainly think so.

Delicious Barium

              Delicious barium shakes. Yum.

First of all, I challenge the idea that I don’t work. Everyone works, whether in the traditional sense of earning a salary, or through the performance of labour in other ways. I perform household chores (my partner and I divide the labour such that we can each complete jobs according to our abilities and strengths, like any other couple). I complete the (seemingly endless) list of tasks that are required due to my illnesses and disorders: doctor’s appointments, physiotherapy, medical tests and treatments, blood draws, prescription refills and pill-dispensing. I parent. I do volunteer work. I engage in social activism. I write. All of these things are tempered by my physical and mental abilities — as are all forms of work, for all people. A doctor cannot perform the task of an engineer, and vice versa. That makes neither of them less valuable in their own work, it only reflects a limitation in their abilities.

As for having value separate from work: There are a multitude of reasons why we value the people around us. In terms of people who are not wage earners (beyond the disabled), that includes children, senior citizens, stay-at-home parents, spouses without work visas, students, and more. All of these people contribute to our lives in ways that are not financial, but still have value. Even when we speak of people who are wage earners, when we describe their importance to us, their professions are unlikely to be the first thing that we cite as valuable, but rather their characteristics and what it is that they bring to our lives and the lives of others. A teacher isn’t valuable only because they teach — they are valuable if they connect with their students and create a safe space to learn.

Disabled people are obviously no different than any abled-bodied person in that way: We all possess characteristics that bring value to the lives of those around us. We can be creative, funny, sexy, supportive and clever. We can be nurturing, and we can be nurtured.

The problem with a society that equates value with the ability to work is that it ignores the individual and ends up hurting not only the disabled, but everyone. It is why we have a class system, with one individual being worth more than another solely based on the (sometimes random and unfair) distribution of wealth. Which makes everyone vulnerable to losing their value, whether temporarily or permanently.

When that happens, you could ask a disabled person what that’s like. We’re valuable for stuff like that.

/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