GRRR

A hundred more points of privilege

BuzzFeed puts out a quiz, apparently to raise awareness about privilege, and the quiz itself betrays remarkable ignorance about privilege. How about starting at the beginning:

  1. I have access to clean water.
  2. I have access to clean food and a sanitary place in which to prepare it.
  3. I have access to medical care, even if I have to pay for it.
  4. I know who my parents are.
  5. I can remember my relationship with my father(s), and those memories are mostly positive ones.
  6. I can remember my relationship with my mother(s), and those memories are mostly positive ones.
  7. I had parental figures in my life who were not my mother or my father.
  8. My memories of my childhood are mostly happy ones.
  9. Neither of my parents was absent from my childhood because they were incarcerated.
  10. I have never lost someone in my family to an act of violence.
  11. I have had the experience of positive relationships with people who are my family beyond my siblings and parents.
  12. There are members of my family who I consider role models.
  13. There are members of my family who have been recognized publicly for their professional success.
  14. I still have family members who are alive and who I know I could count on for help if I needed it.
  15. I have had the experience of a romantic relationship.
  16. I have had a romantic relationship with someone I considered my spouse or partner.
  17. I have never had to fear rejection by a romantic partner because of my mental health or disability.
  18. I have never had to fear rejection by a romantic partner because of my physical health or disability.
  19. I have never experienced the isolation and grief of losing a spouse or partner to death.
  20. I have friends.
  21. I have friends I know I can turn to for support if I needed to.
  22. I know that there are people who will miss me when I die.
  23. I know that I am loved.
  24. I have experienced unconditional love.
  25. I know that there are people who trust me.
  26. I have access to social spaces with other people in which I can feel comfortable.
  27. I feel I have a community to which I feel comfortable saying I belong.
  28. I have never felt burdened by being the primary caregiver for someone with a lifelong disability or illness.
  29. I have never lived with fear or guilt because of the possibility that others may see me as a burden because of my disability or lifelong illness.
  30. I live in the country which I consider my home, or could choose to live there without serious threats to my safety.
  31. I have had the experience of living in a place where most people look like me.
  32. I have never had the status of an immigrant.
  33. I have never had the status of a refugee.
  34. I do not live in a place where my ability to function is limited because I am not fluent in the language that is commonly spoken.
  35. I have never been in a situation where I directly experienced or was at real, immediate risk of, gun violence.
  36. I have lived in a place where there was a stable government.
  37. I have lived in a place where I could vote if I chose to.
  38. I have never had the experience of fearing for my safety at the hands of police or security forces.
  39. I have never had the experience of living in a place where police or security forces regularly patrol the streets with automatic weapons.
  40. I have never lived in a place where people die regularly from bombing.
  41. I live in a place where rioting is rare and unusual.
  42. I have never felt helpless and vulnerable while surrounded by a protest or riot.
  43. I have never lived in a place experiencing direct war.
  44. I have had the experience of living in a house with sound walls, real doors, and a roof.
  45. I have never been forced to live in a dwelling whose walls and roof had holes and gaps that we had to regularly patch.
  46. I have never been forced to live in a place where my safety was at regular risk because of flooding.
  47. I have never been forced to live in a place where my safety was at risk because of poor public sanitation.
  48. I do not have to fear serious illness from diseases that are common where I live.
  49. The dwellings that were my home have always been wired for electrical power, and at least some of the time, had electrical power.
  50. I have lived in a house with indoor plumbing, such as running water or a toilet.
  51. I have never been forced to live in such a way that there was nowhere private to bathe, clean myself, dress, or void bodily waste.
  52. I have never been forced to share a bed with someone else for a period of months or years because the alternative was to sleep on the floor.
  53. I have had the experience of owning a piece of clothing that was new.
  54. I could always wear shoes when I needed to; I have never walked barefoot because I did not own even a single pair of shoes.
  55. I have never had the experience of being wet or cold for weeks because I could not afford appropriate clothing.
  56. I have owned a mechanical means of transportation.
  57. I have driven in an automobile.
  58. I, or someone in my family, has owned an automobile.
  59. I know how to drive an automobile.
  60. I can speak.
  61. I can speak English.
  62. I can understand English.
  63. I can write English.
  64. I can hear.
  65. I can see.
  66. I can walk without assistance from a person or machine.
  67. I have never been confined against my will.
  68. I have never been aware that I am under observation because the medical establishment doubts my sanity.
  69. I have never seriously doubted my own sanity.
  70. I have never had the experience of being psychotic.
  71. I have never had the experience of doubting whether I would be believed because of my mental health history.
  72. I have never lived in fear of homelessness or destitution because of my mental health status or disability.
  73. I have never had the experience of not being able to communicate to those around me for days, weeks, or more, even when I desperately needed to.
  74. I know how to read.
  75. I can write.
  76. I have had the experience of going to school regularly.
  77. My ability to attend school was not determined by my gender.
  78. My ability to attend school was not determined by my skin colour.
  79. My ability to attend school as a child was not dependent on my family’s financial circumstances or need for labour.
  80. I never went hungry at school because my family lacked the ability to feed me.
  81. I know how to perform basic arithmetic.
  82. I have a bank account.
  83. I have, at least at some point in my life, been able to keep money aside for more than a month or two.
  84. I am over the age of 21.
  85. I am under the age of 40.
  86. I am under the age of 70.
  87. I have had the experience of holding a job.
  88. I have had the experience of holding a job that paid me enough that my daily needs for food, shelter and clothing could be met.
  89. I have held a job that gave me pleasure.
  90. I have held a job at which I felt competent and appreciated.
  91. I have had the experience of shopping in a supermarket.
  92. I have never had the experience of walking into a place where food was sold and seeing large numbers of bare shelves because food was so scarce there was simply no food available to place on them.
  93. I have never lived in a place affected by famine.
  94. I have never had to ask someone else for financial assistance.
  95. I have owned a telephone.
  96. I have owned a television.
  97. I have used a computer.
  98. I know how to use a computer to access the internet.
  99. I have owned a computer.
  100. I have an email address and I know how to use it.
  101. I have travelled in a plane.
  102. I have visited a large, modern city.
  103. I have lived and worked in more than one city.
  104. I have lived and worked in more than one country.
  105. And so on …

The thing is, when you define privilege by the top rungs of the ladder, you are implicitly invalidating the status of others. You are also making their disadvantage invisible. Privilege is not an inherently bad thing. Ignorance of it is.

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Understanding ADHD … especially for parents and non-believers

A couple in front of me are having a chat. The engine hums steadily but there are creaks and shudders with each hill and turn. Now, behind me, more talking … is that a language I don’t know, or just a strong accent? Random electronic noises meaninglessly disrupt the comfort of strangers. The scenery changes around me and I watch as the morning shakes off the rain and the sun pokes lazily through the clouds; sloth appropriate to its namesake day of rest.

I struggle to write this but the process calms me as I become more engaged. Narrative is a brush that paints pictures that thousands of years of storytelling have trained our brains to see. I am eventually less distracted by everything around me as my bus makes its way from one city to another.

The common belief about ADD is that it is an inability to pay attention. Depending on how you define attention, this can be true. It is also possible to see ADD as the opposite: ADDled minds notice everything. Our attention works like that of a photographer constantly seeking to be enthralled. Her camera has a focus that is sharp and revealing, but if a subject does not engross her, she moves on because she hungers deeply for one that does. Once she becomes engaged in a subject however, she will become so immersed in it that everything around her disappears.

The need for a stimulating subject is a powerful one for us. To describe it as a hunger is not really strong enough. Interest and engagement are like oxygen for the minds of those of us with ADD. If we are not keenly interested in something, the fact is that our minds do not work very well, or at least they do not at all work like neurotypical  brains do. We search for stimulation because our brains need it like air. And we examine and are distracted by everything around us because our minds require that we search for stimulus.

If you do not have ADD spend a few minutes reading the last two paragraphs. Instead of saying “yes, well, everyone’s mind works better when they are interested in what they are doing” think about it from the opposite perspective. What if your mind barely worked at all unless you were intensely interested in what you were doing.

The ways in which we experience ADD are diverse (I don’t use the ‘H’ to describe myself because I can usually sit still, though staying seated can be quite difficult). Within that diversity are experiences that are so distinct in their commonality that when those of us with ADHD meet one another, we immediately recognize our kin. While the pathologizing and medicating of childhood is something to be deeply wary of, my life would have been much, much easier had I understood how my mind works when I was seven instead of thirty-nine. The signs were certainly all there from early childhood.

For parents wrestling with what seems like a daunting diagnosis, take comfort in the fact that a diagnosis, especially if accurate, is not a curse. And there are significant benefits to embracing, rather than trying to escape, the condition. I would suggest learning to recognize that photographer in your child. Notice the subjects that are enthralling and engross their attention. If you think that nothing does so, take your child out into the world and expose them to as many new activities, interests, and ideas as possible. (Actually, that’s a great idea for all kids, but there are so many challenges to being a parent.) Eventually, something will absorb your kid in a way that astounds you. Find ways to support them in pursuing these interests constructively, and celebrate their achievements as they do. Explore careers that build on their passion. Also teach them to feel a sense of pride when they complete and accomplish anything, but especially things that are mundane, which they likely don’t feel passionate about.

All of these approaches are especially important if your child is struggling to demonstrate success in more conventional pursuits. Be gentle with your children and teach them to be patient with their capacity for distraction and its consequences. Teach them the importance of working with others so that they can get help with the apparently simple tasks that they may find challenging. Often simply working with others is stimulation enough to get our minds to function in a more typical fashion. As team-members people with ADHD can contribute our excitement, our energy, our eagerness to get started, our ability to scan and notice everything around us, and to focus keenly on a problem until we find a solution. But often we must rely on the help of others to see a project through to completion. And we must practise how to mediate our capacity for disruption and how to work with others constructively. It does not hurt us to learn and accept these things about ourselves.

One of the distinctions between ADHD as an adult and ADHD as a child is the corrosive effect of the frustration that comes with decades of perceived failure. This is particularly harsh on adults who were not diagnosed as children or teens.  Without a diagnosis we cannot understand why simple tasks like making one’s bed (which can take me half an hour, even when I am actively trying to keep focused on doing so) are so maddeningly difficult. Misplacing our keys in the three seconds between when we get into the car and when we need to start it is deeply unsettling when we have no understanding of why it happens. When we accept that our minds simply work differently, our lives become much less stressful. If we are fortunate we find a career in which we are outstanding, and we come to understand that the mind that enables us to focus so keenly on our areas of passionate interest is one that will inevitably struggle with the mundane.

With that understanding we are much more able to handle the frustrations that come with the irrationally daunting challenge of laundry, and the extra half-an-hour (or more, if we are unlucky) that we must spend every day finding things that we put down in the most ridiculous of places. We develop the habit of being forgiving and gentle with ourselves when we need to be. As I must be now because I realise that my bus is slowing down but I am too late to get off at my stop, and must settle for exiting at the next.

Deeply saddening

I recently wrote about never having experienced the feelings of isolation or despair that enable people surrounded by love to commit suicide. There is however one situation that I can understand in which the more people love you is the more isolated you become: when you believe that the “you” that others love is not who you really are, because you believe you have never allowed those who love you to see who you really are.

That is the plight of people who have not been able to share some deep truth about themselves with others. Sexual orientation and/or gender identity are examples of such a truth, but there are others. When society does not value who you are and places you in a position where it is dangerous to be yourself in the world, no love can ever be enough. And even when you love others deeply, that love itself becomes a terrible trap.

This amazing young woman is dead. I cannot know what that choice was about for her. But there can be no doubt that she was surrounded by people who loved her, and that she had a great deal of love for others. And when I think about the tremendous loss to all of us that her choice created, I cannot say any more. There are no words.

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Things I don’t understand about suicide

The last week has been unusually difficult for me. Rest assured  I would score quite low on scales used to measure suicide risk, and I don’t think there is any real chance of my harming myself in any way. Nevertheless thoughts of suicide have not only lurked but lingered, and that is an indication that things aren’t good. So, among other things, off to see my doctor this afternoon, and I’ll be seeing another on Friday.

Neither one of them is a psychiatrist, for which I am thankful. One does have extensive experience with mental health and more counselling training than most psychiatrists do. No doubt we will discuss possible medication changes, but I have no fear of loss of control over my own care, and it’s possible nothing will change on the pharmaceutical front. At a minimum I will know that I have done something fundamental to my own self care in reaching out (as I am also doing in writing this), and pride in those actions will itself be a bulwark in facing all the real challenges [regarding my strikeout of 'real' -- it's funny how even those of us who struggle mightily with them still see mental health problems as not real] that are the cause for my despair.

Much more than medication, someone in my state of mind needs increased companionship and physical affection, problem-solving support, fun and amusing distraction, things to do that are intrinsically rewarding and positive like exercise, helping others, completing simple tasks, making something. The mainstream psychiatric establishment is rarely a welcoming or desirable place for someone dealing with what I am dealing with — real and daunting, but solvable, problems in the context of a serious mental health condition. Accessing the most visible mainstream mental health services brings with it valid fears of unwelcome over-medication, confinement (though that alone is not frightening to me, were it not for all the things that may come with it), skeptical and suspicious observation, and artificial empathy.

That is one of the things I don’t understand about suicide: how as a society we (fail to) provide effective options for support. It does not surprise me that few people speak up and seek help until it is too late. Even without the direct experience of the mental health system that I have, the fears of how others will perceive us and what will happen to us if we access mainstream mental health services are strong and valid. Thankfully there are places, such as the Gerstein Centre, which offer a more accessible preventative approach, but their public profile is not as great as it could be, and the philosophy which the Gerstein works from is nowhere near as accepted or well known as it should be.

Another thing that I don’t understand about suicide is the journey to isolation that enables others to embrace it as an option. No matter how despairing I might feel, I have never been able to bring myself to make a choice that I know would leave so many people feeling deeply hurt, desolate, guilty, and remorseful. Sadly many who commit suicide do so in no small part because their social ties are limited or non-existent. But I cannot (thankfully) grasp the degree of despair, pain, and emotional isolation that those with loving families and friends must face when they choose to end their own lives.

Certainly some, particularly those facing chronic illness, make a careful and deliberate choice that engages their loved ones and seeks to minimize the distress to those who are left behind. But stories of those who end their own lives and who leave bewildered and distraught families and friends behind are deeply saddening to me because they speak of how little we know and understand about how to effectively connect with and support people facing that kind of pain and despair.

I did once write a poem describing the closest I have come to being in that place. I’ve shared it before and will again, because it speaks explicitly of a kind of love for others that is invisible, and not heartwarming in the way that love often is. And yet it is powerful for me to bear in mind in the face of the kind of emotional anguish and despair that can lead to suicidal thinking:

No comfort
love that binds me here,

no solace
keeping
in its care
my selfish thoughts
arrested
must
be silent threats
of broken trust

no testament can silence give
of love

nor make
a will
to live

they cannot know,
nor understand

and yet my love
will stay
my hand

a love
that does not satisfy
can still usurp a wish to die.

© David Mordecai 2002

Thank you to the many people in my life who leave me with no doubt that I am greatly loved, and valued, and would be deeply missed.

 

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a friend’s simple intervention

On a recent weekend, despite the wonders of modern medicine, my mood was heading for the down that usually follows an up. I reached out to several people to make plans, my goal simply being to get out of the house. In the end I went grocery shopping with a friend and thus avoided the risk of staying in bed for the day. I didn’t say why I wanted to go shopping together, but he knows me, so chances are my friend had some idea.

Another friend had witnessed my unusual upswing earlier in the week and when I called him in the hope of getting together I told him that I was trying to make sure I got out of bed. Although he couldn’t meet me that morning, a few hours later he did a very simple thing.

He called and asked if I’d gotten out of bed.

When he called he was clear about why he was calling; but he was also very matter-of-fact in asking the question. Perhaps because for years he’s watched others close to him deal with mental health challenges he realised how easy missing that fundamental first step in your day can be for us. Perhaps he intuitively gets that for those of us living with long-term health challenges it is important to see those challenges as significant, but there is a benefit to recognizing that many of them are also mundane.

His call cemented my connection to the outside world, and enabled me to carry on with a healthy and productive day. The fact that he so obviously cared was important, but what was as important was that he didn’t ask the question as if my life might be on a dark path to deepest despair. I wouldn’t presume to say the challenge of getting out of bed is any greater for me than it is for most of us. What may be different is how often I fail and why. But that’s the nature of my life, and being able to talk about it in a matter-of-fact way was no small part of why the call was so helpful.

See this post on another blog for more on what you can do for a friend dealing with depression.

Credit and license for original photo

My daily list

Mental health starts with the little things …

I don’t know which comes first in terms of one affecting the other: emotional state or action/behaviour. To me there is much less value to trying to tease that dynamic apart than in thinking of them as one thing looked at  from different directions.

I wish modern mental health professionals thought more in those terms.

Saw this article recently about botox as a treatment for depression — it stops you from frowning . Sounds ridiculous that this could have any impact on depression. When I read the article it reminded me of my deep love for William James. While I am still learning about his beliefs, from what I know he had insights that match my own experiences of mental health in startling ways. To me there is no divide between thinking, acting, and feeling. They are not the same thing, but they are different faces of the same shape. How you are and behave in the world are inextricably connected with mental health.

This may not seem that profound to those who have never struggled mightily to maintain our mental well being. For those of us who have experienced serious mental illness sometimes “how you behave in the world” means triumphing over tasks most take for granted: getting out of bed, washing the dishes, or sweeping the floor. Given the degree to which grooming and personal hygiene can deteriorate when things are tough, I was reminded of how much such small and basic things like cleaning your teeth and nails are a profound start to a journey back to wellness. Or how failing to stay on top of such simple things can be the start of slide into some very unpleasant places.

This is a picture of the template [I try] to use for my daily to-do list. I edited it for the first time in a couple of years today and in doing so realised how connected it was to this post, which I was about to write.

My daily list

My coded reminders of the routine that sets the tone for my day:

R = medication

Eat, Teeth (clean), Clean (house)

Some may be surprised that I need to be reminded to do such basics.  However for some of us mental health starts with staying on top of remarkably little things …

 

A harsh truth about depression

Upon persistent examination I have always found that I am depressed for a reason. That is not the harsh truth that motivated this post. However identifying the reason, and recognizing a need to do something about it, is a significant step in improving. There are certainly other paths to feeling better, but understanding what is provoking a depressive response can create a significant foundation upon which to build lasting, improved mental health.

Determining what needs to be done is rarely easy. In the simplest of situations there is a problem — more often several — that needs solving. The problem may not immediately be evident. The solution is usually even less so. Sometimes the situation is one in which current circumstances provoke an excessive response because they resonate with a past experience which was especially painful or traumatic. The work of identifying origins is rarely easy. The work of setting the past aside is even harder.

However, until a reason is found, the harsh truth that it important to confront when I am depressed is that if I do nothing, nothing will improve. If I grasp this truth carelessly I can wound myself deeply with self-blame. But if I grasp it gently, with compassion for myself, it becomes a tool with which to cut myself free.

This is a harsh fact to confront because so often depression is the experience of feeling incapable of doing. One loses both a sense of motivation and of agency. Doing nothing becomes a habit of mind from which it feels impossible to escape. However seeing the opposite of doing nothing as making even the smallest, most incremental of intentional choices is an approach that can enable things to change for the better.

If I recognize my capacity for intentional choice, without burdening myself with judgement about all that I am not doing, I start a process of healing. Sometimes the first step is accepting that I am choosing to withdraw and retreat from life, rather than feeling powerlessly drowned and overwhelmed. Owning, without negative self-judgement, a choice to make that retreat is still an improvement over being trapped in a belief that I am powerless.

Accepting, and actually validating, the choice to take a break from the perceived intensity of life is still a far healthier choice than actions that are more immediately harmful. And for those who suffer from serious depression the capacity to turn away from drastic actions like suicide, or reckless substance use, is an achievement worthy of celebration, even if the alternative is a period of time spent achieving little else.

 

Lamotrigine…

Almost two months ago I started medication that I haven’t taken in years. A drug called lamotrigine that is both an anti-epilectic and mood stabilizer. After gradually increasing the dose for two months this is the first morning that I take what is considered a therapeutic amount.

Lamotrigine’s two advantages are a very low side-effect profile (provided one escapes Stevens-Johnson syndrome — the reason for the gradual increase) and a benign mode of action which is mildly (at least mildly for me) anti-depressive. It is the only mood stabilizing drug I have ever taken that does not have any noticeable negative effects on cognition or emotional response (lithium, antipsychotics, and clonazepam all noticeably affect both thinking and feeling in ways that are often disturbing) .

I started lamotrigine primarily so that I could once more try medication to deal with my challenges with focus and attention. Although I’ve been on meds for ADHD before, and they have never precipitated mania, it is a rare doctor who would prescribe them to a patient with a medical history such as mine, if that patient was not also taking a mood stabilizer on a daily basis. Indeed the reason I stopped using ADHD meds in the past was partly because the psychiatrist who was prescribing them to me did not believe that I was manic depressive and so was not particularly worried about the possibility that the meds he was prescribing might end up making me manic. One of my more unsettling observations has been the degree to which doctors frame my symptoms and diagnosis in terms of their area of expertise or therapeutic philosophy.

While my primary reason for starting medication was to facilitate further trials with meds for ADHD (and whether this will work when I go to see a specialist  remains to be seen as lamotrigine is not a recommended medication for controlling acute mania) I was also curious about the impact it would have on my mood, which, while relatively stable, was often noticeably on the depressive side. While I’m hesitant to say it has had an effect, it certainly has done no harm (not always true for drugs like the anti-psychotics), and I am beginning to feel hopeful. Because the effect is subtle it can be hard to tell, but in time perhaps an improvement will be clear.