When A Voice Goes

So I found out yesterday that Amy Bleuel died.

You may not have heard her name before, but it’s likely you know what she did. She founded the Semicolon Project. You know, the movement where people who have dealt with suicide, or self-harm, or mental illness of any kind, where a semicolon represents the choice to keep going. Instead of a period, full stop, a semicolon is a pause; it joins two thoughts and keeps on going.

Only Amy full stopped.

This is really hard for me.

My daughter identifies with the rich symbolism of the semicolon. And so, I do, too. For her.

I’m sending my deep condolences to her family and friends, and to the millions of people who have taken comfort in that little punctuation. She did so much, and her project was a lifeline to many.

So what do we do when someone who was a voice of hope, is silenced, and when there are strong suggestions that the voice chose to be silent? If she died by suicide, how do we reconcile that with the message she shared?

I read a beautiful post this afternoon on The Mighty that speaks to this. We keep going. We try harder.

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I feel so strongly that we have work to do. When families suffer the loss of someone they loved so deeply, when people feel like breathing another breath is just too much agony, when there is this pain, we have work to do. When someone who convinced others to hang on lets go herself, it shows us that we still have a long road to walk in combatting suicide.

I’ve been playing with some ideas in my mind about how I can do my part. I still don’t know what that part is, I don’t know what role I’m supposed to play, and I don’t know what it’s going to look like. But for a long time, I’ve felt like I just have to, in some way, work on suicide prevention. I’ve been so lucky. No one I love has died by suicide. But, to borrow another line from another article I read recently (that I can’t find the link to), the difference between being touched by suicide and not shouldn’t come down to “luck.”

We need to do more. I need to do more. I will figure out what that “more” is. Amy’s death is one more that shouldn’t have happened, and has left so many people broken-hearted and questioning, left to figure it out.

And I’m left counting my blessings, counting the love around me.

 

This Day

https://dailypost.wordpress.com/prompts/luck/

When my daughters were small, I would often ignore or gloss over these minor holidays. It seemed like it was just a lot of extra effort to participate in these things. Finding something green, making sure my girls had something green, getting into the whole spirit of it, all seemed like a lot more organizing than I had time for. I’m not particularly regligious, and Easter has never been especially meaningful for me in that way. Halloween is just too much work.

I save my energy for Christmas and birthdays and the every day energy that goes into loving a family.

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The whole concept of luck, though, is near and dear to my heart. I am lucky, and I count my blessings every single day. I have more than my share of amazingness in my life, and don’t take any of it for granted.

Especially because my daughter has an illness that could take her from me at any time.

I work hard at my luck. My job takes long hours, and I enjoy what I do. I work hard to make time and energy for my family. I work at helping my daughter fight her illness, and I work at helping her manage when it gets to be too hard for her to do it on her own.

Some day there will be a cure. I feel that in my bones. There will be a time when something can fix depression, whatever its cause — some new therapy, a different type of medicine, new understanding of how depression messes with the brain.

Until then, we’ll take each day, hour, moment, as it comes, embracing the next day, hour, moment. Breathe deeply, not only to steady ourselves, but to take it all in. We’ll work hard for our luck, appreciate it all, and maybe even today, we’ll wear green.

 

Changing the Course of History

Via Daily Prompt: Massive

For some reason, this phrase has always struck me as odd. Authors boldly proclaim that one person’s actions changed the world, re-wrote history, changed the course — pick your meaningless phrase.

When a course is changed, it means that everything was going solidly in one direction. Everything was pointing in one way, like a freeway without an exit ramp in sight. Suddenly (and it usually is momentous and drastic), someone arrives on the scene and shakes things up, changing the entire trajectory of the world, or whatever portion of the world in which they happened to live.

It doesn’t make sense! History is something you look back on. And trajectories are not changed in hindsight.

Taken as it’s meant, though, it’s as if, had that person never come along, the world would have continued on its merry way, for all time.

That’s an awful lot of responsibility for one person to bear, isn’t it?

When something happens that causes massive upheaval to people and places, it’s natural to look at the event(s) as life-changing, where things can never be the same as they were pre-event. But to say that something “changed the course,” also implies some sort of prescience. It implies that the person, or even the natural disaster, or event, had a clue about the direction in which the world was going.

Third, the phrase also gives a lot of power to the proclaimer. The person uttering the phrase is now assumed to know, with precision, what direction the world would have taken had the event not occurred.

Even the best of us can’t predict tomorrow with that kind of certainty, never mind re-writing how yesterday may have gone if, if, if.

When I look around my home, or my office, or my city, I can be reasonably confident in a couple of things: I’ll very possibly wake up tomorrow, and being in good health and young-ish, I will very possibly continue to have use of my body and brain.

Beyond that, I know nothin’. Even that isn’t guaranteed.

Further, I can’t say with one shred of confidence that had I not had that tea yesterday, I would have gone out for a walk instead, and then who knows what could have happened! I could have happened upon a robbery in progress and saved an entire store full of people. I could have whisked a little old lady out of the way of the speeding bus, averting disaster, whereupon said old lady bequeathed me her fortune, which meant I could quit my job and finance the invention that … changed the course of history!

Right.

Hey, I love “what-ifs.” My whole life is based on what-ifs, which I use to great disadvantage during an anxiety attack. I use them to obsess over what can possibly go wrong having a depressed child. I use them to focus on all of the possibilities, evidence or not, when I consider her future, and that of my other daughter.

Hell, if I could predict the past or the future, there would be no such thing as anxiety, because I would know it all and have no unknown possibilities to fret over.

That might not be such a bad thing, and maybe then I could change the course of history.

Sunrise

via Daily Prompt: Immerse

It’s still dark outside.

I didn’t sleep much last night. I was up every hour, fretting, worrying, anxious, scared. So completely immersed in worry that it infected my dreams, and was the first thing my brain tuned into every time I woke up.

Finally, eventually, I got up, made the coffee, and tried to make sense of it all, tried to write through it. I jumped right in to the very heart of it, hoping that the act of going right to it would help me sort it out.

Not this time.

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But today is a new day. How cliche.

So real, though. Today is a day where we have time for new conversations. We have the chance to try again. We can confront the things that are hurting us, hurting her, and try to do things better. Try to work at healing.

Love always.

Lost? Or Still Looking?

We’ll be getting more assessments, more appointments, more questions, and hoping beyond hope that we get answers. So far we have none.

Counsellor suspects Borderline Personality Disorder, which brings up way more questions than it answers. The suspicion is that, regardless of any traits or patterns I may have noticed from the day daughter was born, because she seems to have separation anxiety, and even a fear of abandonment, the suspicion is BPD.

But? But?

Is that something that can be with you from birth?

Is it something that can be a part of your very soul, your make up? Because whatever it is that she has, she’s always had it. She was bullied in elementary school, and things got worse after that, but she’s always had it. She’s always had separation anxiety, and she’s always always always had difficulty with changes in relationships.

Daughter told counsellor that she has trouble in social situations, and doesn’t really “get” girl talk, and doesn’t really even care too much about it. She said that she will often adapt herself to whatever social situation she finds herself in, so that if a group of kids is talking about a subject, she’ll go along with it like she knows, even if she doesn’t.

Counsellor says that that also leads her to suspect BPD.

But these are ASD traits, too, aren’t they?

Daughter told counsellor that she’ll chase after people who are upset with her in order to keep them from leaving her. She also said that when she’s angry at people, or if they do something to hurt her, she will feel like she doesn’t want to continue the relationship.

That does sound like BPD to me.

But? But?

But it also doesn’t. But it does.

I’m so confused, and kind of lost.

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It is not news to me that my daughter has mental illnesses. Depression and anxiety have been constant companions for her for a very long time, and we’ve been looking for answers and relief for her for just about as long. But counsellor made it sound as though BPD was literally on the edge of psychopathy.

Is my baby that sick?

So I’m afraid.

Daughter says she just wants to know. She just wants to figure it out so she can get her therapy to start actually helping, so she can start working towards feeling better without spinning her wheels all the time. She just wants to feel better. And that is just not too much to ask.

She’s thin. And she has so. many. scars.

I’m scared.

But. Once more, I will be strong. Hell, if she can manage to confront her demons every day, and not let it take her down, I can stifle a few tears. I will keep my promise to her — we’ll keep looking until we find answers, and we’ll work at it, we’ll do everything we can to help her feel better.

Diary

via Daily Prompt: Record

Keeper of secrets but teller of lies. My diary is a safe place, where I can spell it all out, yell it all out, and come back around the calm side. But it’s not real. It’s only my perspective, with no pretense of balance, fairness or self-control. It’s joy, and gratitude, and wonder that I get to live this life, my life. It’s hope for the future, and making sense of everything that got me to where I am. But it’s still just me, writing for me.

Yet it’s also the record of my family and friends. No one else I know keeps a diary. I keep our memories, our events, our lives, imperfect a record as it may be. I’m sure that some day my kids will read them and wonder if they grew up in the family I’ve described. They’ll wonder why I wrote about some things and ignored others. They’ll wonder how I managed to see things the way I do, when they don’t remember it that way at all!

Oddly enough, I write for them as much as for me, because I know that some day they’ll inherit these volumes and volumes of my life. And they’ll be left to make sense of the records I’ve created. They’ll laugh at my quirks, and maybe they’ll feel puzzled, or sad, or melancholic, or maybe even happy that they have the memories, written, made real out of thoughts, the words on the page recording their lives for them.

Daily Prompt: Pattern: Snowflakes

via Daily Prompt: Pattern

Since we’ve been riding this rollercoaster called MDD (Major Depressive Disorder, or, as I call it, Many Dismal Days), I see patterns in behaviour, patterns in triggers, and even patterns in communication.

Parent-blamers would call her a “snowflake,” which they mean to be a delicate type who can’t withstand the pressures of daily life. The implication of the word “snowflake” is negative. Its cause is assumed to be that parents, by not letting their children fail at things, have created patterns of weakness in their children, where they fall apart at the slightest provocation because their parents have traditionally done everything for them.

The reality is far more complicated, as are real snowflakes. Maybe in some cases, the parental influence is a factor. Maybe in some cases, kids are wired in such a way that things seem more challenging for them. Maybe in some cases they’re actually trying desperately hard to face life’s issues, joys and obstacles, trying really hard to succeed, but for whatever reason the weather changes and they melt.

I think that the human tendency is to insist on patterns in order to make sense. Even if the patterns don’t always fit, we force things (and people) into categories because that’s how we make sense of them. Kids who are struggling, be it because of depression or anxiety or whatever, are difficult for us to figure out, and challenging to treat. We want to relieve their suffering, but because the causes of these mood disorders are often elusive, we find easy targets (parents, or even the kids themselves) and impose a structure that may not always fit.

Thus we label these kids “snowflakes” because it makes us feel better to have someone to blame. We see patterns in their behaviour and reduce them to the lowest common denominator.

We forget, though, that snowflakes are beautiful, unique, intricate and complicated. Snowflakes are forces of nature, with immense power in their beauty. They sparkle like diamonds in the sunlight, and they have the strength to bend tree branches under their weight, or even crash down a mountainside in a ferocious, roaring avalanche.

Let’s take some time to reflect on the labels we use, and the patterns we impose. Let’s remember that the people we categorize are exactly that: people. With individual thought processes, unique ways of processing information, diverse ways of making it through life’s challenges and joys.

Let’s remember that even snowflakes can be strong.

A Few of My Favourite Things

Just because sometimes you feel like celebrating a day full of regular things that aren’t drama, no angst — teenage, parental, existential or otherwise, a day of sunshine, curled up with the cat (or dog), a day off work!

So here is my shout-out to regular great stuff.

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Chai tea. I love it! You can make the tea part as strong as you like, and you add all kinds of spices in all sorts of combinations. The flavours are intricate and bold, and you add hot milk and honey. Chai says, “I value you, and I care enough to make it just so.”

Sunshine! It can be underrated, or at least taken for granted. Even on a cold day, it can warm you through your window, and remind you that if it isn’t already, spring is really a thing.

Books. I love fiction, non-fiction, science and art. (Really, science and art are different points on the spectrum of beauty.) I can start one, become engrossed, and finish it by tomorrow. Or, I can choose to put it down and find something else. I can read kids’ books, biology or a study of Emily Carr. With pictures!

Fireplaces. YES! Because when it’s cold out, or even just slightly chilly, there’s something about a fireplace that has “comfort” all over it.

Coffee! Because, it’s, like, the elixir of life. Strong, dark, deep and rich.

Chocolate! Cake, bars, cookies, drinks. Chocolate says that life can be complex and sweet, bitter, solid, malleable and so worth it.

Animals. My dog doesn’t care if I don’t feel like it, and doesn’t judge me when little things make me anxious. My cat doesn’t mind if I don’t get home from work on time, and certainly doesn’t care if I can’t manage more than cereal for dinner. Plus, they give me an excuse to talk to myself, and get me out of the house every day for exercise.

Music. Classical, classic, pop, rock, rap, jazz, blues — whatever moves your soul, it’s the soundtrack, it’s the memory. Music helps us frame our lives and tells us that someone else out there gets it.

Snow. Yes, even snow. You can ski on it, run in it, build with it, move it out of the way. And it’s always there to remind you that it won’t last all year. Plus, it makes all the other things that much more meaningful.

 

You Must Be Joking.

If a “neurotypical,” (?) non-depressed, non-anxious, non-idiosyncratic (???) person were ever to be described in some of the ways I see autistic people described, I’m betting that “ableist” language would pretty quickly become a thing of the past.

(Note: ** I use quotation marks around words that I find objectionable or else don’t have the knowledge and experience to find other words for.)

Consider this one website that claims to “describe” Asperger’s teens. Language such as, “clueless,” about social cues. “Overly logical and rigid.” “Abnormal and intense interest.” “Lack of appropriate social and emotional responses.”

And this is supposedly a “friendly” site.

What the hell?

Or, consider a book I picked up this morning, about anxiety and Asperger’s. The author says he is an Aspie. Yet even in the first chapter I ran into example after example of his portrayal of Asperger’s in a negative stereotypical way. He also insists that life in general is going to be harder for Asperger’s people, and that they just need to be brave and get through it.

How inspiring.

And so, when I’m looking for possible diagnoses for my daughter, I’m sort of wondering if I even should. Is this what she’s up against? What if her diagnosis is bipolar, or borderline personality disorder, or schizophrenic, or something even more reviled by the mainstream?

From what I can tell in my early research, and IF my daughter falls into that spectrum of brain wiring, what I know of her to be true is that Aspie people are creative, intense, generous, loyal, sensitive and highly attuned to their environments. She’s far from “clueless,” about social cues. She may not always interact with people in ways that others might expect, but rather than clueless, she is extremely clued in, and figuring it out with a lot more care and thought than your “average” person.

One site even claims that Aspie boys, because they don’t get the whole dating scene, become obsessed with masturbation. Girls prefer to wear the same hairstyles and clothing they wore in grade school, well into the teen years. Both boys and girls neglect their hygiene.

Part of me is right disgusted that this stuff is even printed. Part of me wants to laugh. Seriously?

My daughter doesn’t fit this stuff.

But you know what? While I think that yes, there may be a very wide range of behaviours, interests and manifestations, it’s the overwhelming focus on the negative that bothers me, as if the only way a kid can be diagnosed is if they fall into these apparent extremes. And if they don’t exhibit negative extremes, what then?

And really, who writes this stuff??

Oh yeah. It’s the “well-meaning” professionals who want to make it “easier” for parents to “manage” their child’s “symptoms.”

My child does not need to be managed, thankyouverymuch. She doesn’t have symptoms of a disease, unless you count anxiety and depression, which are literally DIS-ease, as in not at peace with herself. She has a personality that is varied and intricate. I don’t need it to be easier for ME.

I asked my daughter recently how she would feel if she did find a diagnosis that makes sense to her. Would she feel labelled? Would she feel like she’s being categorized, or would it increase her anxiety? She told me that more than anything, she just wants to know that there’s a reason why she feels the way she does.

But if she were to come across sites and writing like I’ve described above, I fear it would set her back to be described as rigid, clueless and obsessed.

I think this is going to take some time to figure out.

Thankfully, it’s not all like this. Am I naive? Absolutely. Optimistic? Eternally. (See my earlier post about the case for optimism.) Oh there are people who struggle with having been diagnosed with something that isn’t a mainstream brain wiring. I think that anyone who receives a diagnosis must have some processing to do, coming to terms with whatever it is that has caused the diagnosis to be made.

But isn’t it easier to deal with things when you know what you’re facing?

If my daughter has a bipolar disorder, then we need to treat it so that she can live with more peace and more fully than if it’s not treated. If really she is perfectly neurotypical, and her anxiety and depression are just things unto themselves (“just,” she says. Ha.), then isn’t it better to know so we can confront them and help her feel better? She wants so much to get on with the living part of life! Celebrate what makes her who she is, and figure out ways to deal with the negative (anxiety and depression).

Easy, right?