Sometimes I am the water

My last post felt pretty personal, and I liked it. I feel like I took a little part of me, washed it clean, and put it back in place – just a bit more shiny, a wee bit lighter.

And that, there, is what I’m seeking these days – a bit of lightness.

The funny thing is that it’s there, but I forgot to notice it. I’ve gotten into the habit of lurching from one drama to another, to stewing in chaos and tripping over obstacles that jump out into my way, without warning. What I’m learning, though, is that this is really just a viewpoint. It’s not how things “really” are. It’s all linked to how I’m looking at it. This isn’t a “turn that frown upside down” blog post – don’t get me wrong. It’s never as easy as just pretending things are good.

What I’m talking about is my habit of seeing the worst, of waiting for another shoe to drop (and lots of times? It does drop – that’s what makes it so difficult – there’s no way to anticipate). This is about my temperamental and situational predilection for trying to harden myself up, to be prepared for anything that will jump out of the shadows at us. I’m talking about my high-strung-cortisol-pumping nervous system reacting to the world in a way that has made me clench my teeth in my sleep, use sugar as  a mood enhancing drug, has carved worry lines in my face, and made me sort of unpleasant to be around sometimes.

You know what lowers cortisol levels? Laughter. Tears.  Both work, so it seems to me that I can choose which one I want to use, right? I’m going to choose laughter a lot more from now on.

Now that I’ve let the disability cat out of the bag, while I promise that not everything I write will be about it, I have to tell you that my daughter’s disability touches almost all parts of our life. That’s the thing about it – you can’t just shut it off for a day, right? She can’t say “hm, I don’t feel like needing a lot of care today“.  It can be maddening, and scary, sometimes, having this person rely on me for everything.

Like her, I can’t take a day off – no parent can, really – not unless we have someone reliable to take over. See Vicky’s amazing blog post of the other day to see her side of this.

All of that said, while I worry and fret and clench my teeth and have little melt down tantrums, I forget. I forget that it’s not all about waiting for that emergency. Sometimes I feel like the lifeguard, unseen in the photo above – standing, literally guarding life. And yes, sometimes I am.

Sometimes, though? I am the oars of that boat.

Sometimes, I am the boat.

Sometimes I am the water, buoying it all up.

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Don’t you love the photos, above? My very talented friend Patty Maher took that photo. Go to her site and look at the amazing photos and read her wise and elegant, spare prose. It’s well worth your time. Today, her photos reminded me that it’s sometimes all about reframing something, making a choice in how to look at things. Thanks Patty!

Since it is World Photography Day (how serendipitous!) I’ve made her the official photographer of Box 761 today. Here are a few of my favorites of her photos:

   

          

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Box 761: Special Needs Edition

One of three most precious to me, and the centre of my biggest silence

More interesting than what people write about, sometimes, is what they don’t write about. All sorts of things can inhabit those silences.There have been whole months when I’ve written nothing, and there’s usually a reason for that. And when I do write, there are some things that I don’t mention.

The yawning silences in Box 761 have been largely constructed to obscure disability: my (step)daughter’s disability and how we all work together to accommodate it, and our reactions to a world that doesn’t always accommodate itself to her needs….

One reason I didn’t write about it was that it didn’t really feel like my story to tell — it’s hers, right? And I kind of wanted to make “Box 761” a place where that particular issue wasn’t always at the forefront – a place where my story lived.  So, when I started writing here I was just coming off a long period of working in the disability community, volunteering in the disability community, and mothering in the disability community of Box 761, and I wanted to write about all the other things that are me.

Disability has a way of taking over if you let it.

I  was also uneasy – worried about falling into a “mommy blog” pigeon-hole. Or into the even smaller, deeper “special needs mommy blog” hole. It was important I carve out a spot for myself, somehow.

I forgot, though, that mothering has become who I am, not only what I do. It’s not all of me of course, but it’s a big lovely rewarding frustrating boring challenging awe-inspiring part of what I do every day. It’s a privilege to do, especially since these gorgeous women who I mother aren’t my biological children, but are instead a gift given to me first by Mr. 761 and second by those amazing children themselves.

Jeez. add the husband in Kandahar and you’ve got a Lifetime Movie of the Week!

(Daughter Number Two will warrant her own post later — she’s leaving us to go away to school soon and no doubt I’ll be in a teary empty-nest mood one day and write a sappy love post to embarrass and secretly please her. Plus, we need to discuss how much of her I can, you know, discuss.)

Here’s the thing, though. Being a (step)mother has completely altered my life. Vicky’s disability has completely altered my life, altered how I see the world, how the world sees me. So it is also my story,  and I guess it’s time to talk about it a bit.

Vicky and I talked about it the other day, and she told me that she didn’t care what I wrote about, and that she’s fine with it all. She just started her own blog, too, so if you’re interested click here to meet my fine (step)daughter in person…. Today she wrote an especially fabulous, funny poignant and strong blog. It made me run back here to this  draft and start working again. I’ve started this more than once, and it’s tough slogging for some reason.

When I read specialneedsmommyblogs I tend to think they fall into a few different categories: the ones that make mommy seem like a Saint (and while my halo is a bit shiny, I’m definitely no Saint, lemme tell ya); the ones that are all about how Inspirational and Special their child is; the ones that have an overt religious message (like, “Billy’s being born with his eyes turned inward and flippers instead of knees is a Gift from God”… um, yeah, some gift, Thanks a lot God. Did you keep the receipt?). There’s also AngryBlog (with a lot of “why’s?” and not enough “how’s), the SappyBlog, the CheeryBlog….

You get my point. I know I’m not being entirely fair here, and I think that what I mean is that none of those felt to me like blogshoes I could fit into. I’m just not sure how to be authentic, how to fit all of these different sides into one blog space. I  knew that writing was therapeutic for me, and wanted to explore that first. What’s funny is that writing about her is probably the best therapy in many ways. Wonder what took me so long to get to that point?

So, as much as I may not want to be a “mommy blogger” (whatever that is – and many  heartfelt apologies to all those women out there who want the label), there are days when I want to write about this very important part of my life. It is important, and it is worth talking about. And let me tell you – “stepmother” is not always an easy role. And while I’ve been  so utterly fortunate in that – there was a hole to fill, and I stepped  right into it, into their arms – there’s a whole book in that, I can assure you.

All that said, “Special-needs-step-mommy-blogger” seemed just a little too unwieldy, yeah?

some days, it's just there - it is what it is and it's part of the normal routine.

Vicky’s disability is both straightforward and very very complicated.  She was born with cerebral palsy, which is a sort of catch-all phrase for “we’ve ruled out everything else but see motor skills issues, etc.”. Her CP affects all four of her limbs, so they call her a “quadriplegic”. That does not mean she can’t move or feel — she’s not paralysed. It’s just that the messages she tries to send her muscles are often slow to get there, or get crossed somehow. She cannot walk, nor can she hold a pen or get herself in or out of her wheelchair without help.  There’s a whole long list of stuff that she can’t do.

There’s also a long list of what she can do of course, but in our culture, we often really focus on what people can’t do. We do this for a variety of reasons – in V’s world, doctors, teachers, waitresses, passersby… all of them tend to focus on what she can’t do. This is a convenient way to pigeon-hole her, to classify her. Certainly I do it myself sometimes – there are shortcut terms that we use when talking to doctors or nurse managers or social workers – she  “needs help with almost all of her ADL’s” we’ll say. (That’s “Activities of Daily Living” to you uninitiated.)

She also has a pretty severe learning disorder – called non-verbal learning disorder (NLD). I find this the most challenging part of her disability, largely because it means that her brain isn’t wired to “read” non-verbal communication. She is very literal

image courtesy of ClipartOf.comsometimes, and social/cultural idiom can be difficult for her to understand. She has had to learn her world in a way that would be challenging to anyone. Luckily, she was born with a really big brain and a sense of humour. I have learned to try harder to say what I mean, to rely less on lazy language, and to keep an eye out for potentially confusing situations that we’ll need to discuss later. These are useful tools for anyone, so yeah, it’s not all bad.

Vicky would, though, prefer very much not to have NLD, if given the choice. Navigating the world in that chair is hard enough, without not understanding all the signs along the way while she’s at it.

Some days, it's ALL there is.

Lately we’ve had trouble with the people who are contracted to do her care. She and I have been talking about this frustrating situation, and this morning she wrote about it (see above link). She understands very clearly, the primal link between herself and me, her caregiver. Probably in a way that I don’t always even register, she’s twigged to the concept that her very survival depends on there being someone around who will – reliably and safely – be able to do those things for her that she needs to do.

I’m just a nice lady whose kid has a disability. I’m trying as hard as I can to help her and the world naturalize this disability. I want her to leave my house and be a full citizen. I want her to be unafraid of saying “this care is not adequate”. Hell, there’s a LOT of things I want for her, same as I want for my other daughter — I want them to be citizens of the world, with all the rights and obligations that entails. I want them both to be pain free, as much as can be arranged. I want them to have safe places to live. I want them to have friends and secrets from their parents (not big ones, though, okay guys?). I want them to live in a world that is free of their feeling guilt or panic because they want to, say, get out of bed in the morning. Or, I dunno, not sit in their own filth because their care is unreliable.

See? Simple.

But I digress. I do that often when Vicky’s care is concerned. It’s pretty complicated. And it’s not just her, you know? It’s stories like this in today’s paper. It’s worrying about everyone else on that missing Aide’s roster — who went without food? Who slept in their chair that night? Who couldn’t get in touch with their emergency contact? Who didn’t want to complain for fear of reprisal of some sort?

This is the kind of stuff that literally keeps me up at night. Every time I start to bitch about something in Vicky’s life I start to think about other people less fortunate than Vicky, people who don’t have enough money or any family support. I’ve basically made her quality of life my full time job at present and I still can’t guarantee she’ll have it. It’s enough to make one weep. It’s what makes me keep doing this grinding, frustrating, agonizingly angry-making daily struggle to make the world see.

It’s why I was on anti-depressants for a while and felt like I wasn’t good enough. It’s why I often felt guilt that brought me to my knees – I wasn’t doing enough, doing it well enough, doing it nicely or politely or in a way that wouldn’t make me crazy. I’ve become a kind of weirdly earnest,  annoying zealot. Did you read what I wrote earlier? “I’m just a nice lady whose kid has a disability. I’m trying as hard as I can to help her and the world naturalize this disability.

Who the hell write that they just want to help the world naturalize disability? hee hee. Only the parent of a child with a disabilty could write that with a straight face. Why don’t I just try to cure world hunger and bring about world peace while I’m at it, eh?

I’m working on that.

How? Well, this blog today, for one thing. There were days when I wanted to write – felt positively itchy with the need to write something, but didn’t. I didn’t write because I was afraid: afraid that I couldn’t concentrate on the task at hand because I was dealing with day-to-day life for Vicky; afraid that writing about it would seem whiny, or that it would make me angrier, or weepier, or make her feel bad.

How is it that I live in a world where my daughter feels bad because of a condition that none of us had any control over creating?

So. Everybody has that something that is their cross to bear, you know? What writing and reading about this does is put it all in perspective. All those blogs I mentioned earlier? They may not be “me” but you can bet that I read as many as I can find. I may not always agree with them, but they sure as hell made me realize that I’m not alone in this ridiculously complicated world of parenting a child with special needs.  Writing one adds my  voice to the mix.

Vicky is empowered by the internet and is finding her voice, there and out in the “real world”. I’m trying to do the same, and the only way I can do that comfortably is to turn up the volume a bit, make those silences disappear. What I can tell you is that the daily work of making the world see and hear my daughter is more accessible all of a sudden. And I’m not alone in it, because I’m following her lead now.

“homeless troubles”

I live in a wee little town in Nova Scotia; we used to have a weekly Town paper and then it was consolidated to cover the entire County. I like the paper — I like that I usually know someone in one of the photos. I love that it’s local, and I like that there’s a whole half page above the fold of “From the Cruiser” police reports that never fail to keep me entertained for quite a while. I read them every week, and it never fails to amuse. Part of the fun is that they seem to be randomly listed (perhaps in order of occurrence?), and they’re pretty funny. Big City news, it ain’t.

Here are a few examples from this week’s column:

  • “a Wolfville resident reported a tradesman for making rude comments”
  • “a Centreville resident reported off-road vehicles driving around at 2 a.m.”
  • “an old vehicle without a windshield was doing donuts on the Morden Road at 6:50 p.m.”

See what I mean? ha ha ha it’s all kind of quaint and harmless — goodness gracious! A rude tradesman! Golly, we should call Gomer and Andy and have them give that tradesman a  talking to!


Oops, I did a donut!

And there’s also this weird conceit where all of the vehicles seem to be driving themselves; I picture a bunch of innocent vehicles ambulating and doing donuts on their own. It’s all weirdly depersonalized.

Would it be too judgmental to say “hooligans were driving ATV’s at 2 a.m. in Centreville”?

So, that’s not the big deal, really, though it would be an interesting sociological study that I will be happy to undertake at a later date.

What grabbed my attention today was this small article in the “from the cruiser” section. It rated it’s own subhead, that of Homeless troubles“:

wtf?

I hope the scan is clear, but in case it’s not, or you’re print-restricted, I’ll type in the article:

Among the 11 calls about a 41-year old homeless man in the past 10 days, two concerned him being in the vicinity of New Minas businesses to avoid rain Oct. 1.

The man, who suffers with a mental illness, had previously been reported camping on municipally-owned property in the Greenwich area.

The man phoned 911 himself at 6:37 a.m. Oct. 3 to report rocks were being thrown at him  by two males who had been drinking.

There. Charming, isn’t it?

We live in a community/county where people actually feel they can call the police because a tradesman is rude, but at the same time a man with no home can’t shelter himself from the rain? More than one call a day for 10 days, and the man still has no place to shelter himself?  I’m surprised at how clearly the article was written — that it actually stated people were throwing the rocks. Though, like the ghostly donut-driving cars and ATV’s in the notices above it, it too is weirdly depersonalized.

Is this what happens when one of our community has a mental illness? Where is his family? Where are the social services that are in place to help this man find some dignity, some shelter from drunk assholes throwing rocks? Why is there no place out of the weather for him to stay dry? Or, even, why can’t he just be left alone to sleep in peace without fear of being stoned?

I don’t know that guy in the article, but my heart breaks for him. I’ve spent the last 10 years of my life advocating for persons with disabilities in Nova Scotia, and honestly, had taken a bit of a break… it’s hard, and I was very tired and a bit burnt out. Except for what I do for my daughter, I wasn’t going to do anything else — no more committees, no groups, or councils or articles or position papers or politicians. The personal that had become political became personal again. It had to — it was just really hard to do everything that I thought needed to be done. I’m not going to throw my hat into that ring again, not for a while I don’t think. It doesn’t necessarily  have to be my fight this time. I will, though,  be making a contribution to the local Canadian Mental Health Association,  that’s for sure. It is the least I can do.  Here is a list of all the Nova Scotia CMHA branches.

Let’s say, for argument’s sake, that this particular man did not want help. He did not want to be incarcerated/medicated.  Surely there must be something else that can be done? Some sort of sanctuary or shelter? How can we have homeless people in a community this  generous? Last week, our fire department had a fundraiser for a woman who has lung cancer — and those in our community at large raised over $10,000 for her.  This man has an illness too… why aren’t we raising money for him? Or, at the very least, not throwing rocks at him?

Want to throw some stones at her, too?

Mental health issues freak people out. Disability in most forms does, to varying degrees. My daughter has Cerebral Palsy  and is really very beautiful — now that’s a disability that people can wrap their heads around. It’s not scary, you know? People can feel sorry for her and pet her and can really feel like they’re helping her if they do something — like,  pick up something she’s dropped, or open a door for her so she can get in out of the rain.

If someone has a mental health issue, it’s not as cute, is it? And it feels much, much harder to help.

Thing is, it’s not as if anyone asks for it, right? He asked for this no more than my daughter asked for her CP,  or that woman for her lung cancer, but we’re helping them while we shoo him away for “being in the vicinity” of a business.

I worry, all the time, about how to care for our daughter; how to juggle our needs with hers, and how to get her the care she needs without the burden of care-giving falling solely on us. We worry, and plan, and re-jig plans — we try to roll with every punch that seems to come her way. One thing I do know is that she will always have us to love her. She won’t always live with us; that would just be weird. But she will live somewhere that she agrees to be. She will live somewhere.

It will be over my dead body that someone throws rocks at her.

This article, sitting quietly there at the end of the “from the cruiser” section (and ironically placed beside a call for proposals for a “Wellness Initiative Fund” from our Health Boards) really worked me up. The disabled in this province are the most disenfranchised group there is — poorer, less educated, every single determinant of health scores on the lower end of the scale. We work very hard to take care of our daughter, to give her the opportunities that she deserves, and she is a very lucky girl to have us.

Otherwise, she might be the subject of an article like this some day, who knows?

That we’re just as lucky to have her goes without saying. But I say it here because I want to make sure that it’s said, and out there. Everyone deserves to have their person-hood seen. She is not only her disability, that man is not only his mental illness. He is a person, a person living out in the open with nowhere to go, and having rocks thrown at him. I know that somewhere, that man has people who love him, who are worrying because he lives on the street. Maybe they respect his choice to live as he does, but worry about people throwing rocks at him early on a Sunday morning. I don’t know, and can’t begin to presume to know his story, or theirs, but see a responsibility in the community at large to help one of it’s own.

I’m not even sure what I’m getting at any more. I just think of those eleven calls to 911 and feel like there were ten too many calls. I wonder why there wasn’t a report of two males who had been arrested for trying to stone a disabled citizen. I wonder why there isn’t a shelter in our community. The article was called “homeless troubles”  —  a title I take issue with. While it is true that homelessness is one of this man’s “troubles” right now, I feel that it would be more accurate to say the troubles run a lot deeper than that.