* PHOTOS LIE *
FB showed me this memory today. My first thought was: “wow, I wish I hadn’t gained 15lbs and that dress still fit.” … My second thought was how much photos LIE. In this picture, my hubby and I look like a handsome, happy couple enjoying a wonderful evening.
But when I look at this photo I remember how awful things were in our lives at that time. This was 4 years ago today. Our lives were caving in. Our daughter was experiencing a terrifying medical condition where she inexplicably regressed in fine motor, gross motor and language skills. She went from a chatty almost 3-year-old to a toddler who could not longer say the word “raisin” properly. Things were unravelling fast… We were devastated and terrified and staring into an abyss so dark that I can’t describe it.
We’d been in the weeds for weeks here, in-and-out of Children’s Hospital. Genetic tests, metabolic tests, MRIs, EEGs, bloodwork, and more. We were awaiting results that were being sent to a lab in Germany. Our pediatric neurologist said to us: “there is nothing more medically that I can do for you.”
We’d been house- or hospital bound for weeks at this point. Our friends tentatively invited us to their birthday party. It was her 40th.
We wanted to go, but I also didn’t want to see anyone. I couldn’t talk about what was happening to us. I didn’t have the words. I didn’t have the ability to talk about it without cracking open like a raw egg. But I couldn’t talk about anything else either. It was TOO PAINFUL to talk about what mattered, but TOO TRIVIAL to talk about anything else. We were not great company.
We went to the party.
I don’t even know why. Maybe just to feel normal for a bit?
Our friends know us well and know that – when life is falling apart for me – I don’t reach out. I say please leave me alone right now, I can’t talk. I don’t want to engage or ask for help. I want to cocoon. I want to turtle. I completely withdraw.
So at this party, I mostly sat and listened to my friends make pleasant small talk, and I smiled along and sipped my martini. I got longer-than-usual hugs, and no one asked what was up when we left quite early.
What this photo did for me today is help me reflect on a few things:
Support doesn’t have to be LET’S TALK ABOUT IT. It can be: you’re not ready to talk about it, so let’s sit here in silence or whatever you need.
Different people need such different things. When life falls to shit, I withdraw completely. I need to lick my wounds in private, and then emerge when the time is right for me. My husband is the opposite. He wants to talk. He needs verbal support, a shoulder.
Funnily enough, gender-based friendships flip this. I knew that any of my girlfriends would be a shoulder to cry on if I wanted one… But I didn’t. But in male friendship, Dan’s friends assumed he didn’t want to talk about it, and most didn’t even ask how he was doing. He was dying to talk about it, but didn’t have the same kinds of outlets that I did.
With the recent suicides of Kate Spade and Anthony Bourdain, I’ve been seeing a lot of “why didn’t they reach out” messages. I even said to my husband something along the lines of: if people with seemingly infinite resources can’t hit the pause button on work and life to reach out and get help, what hope is there for people without such means?
But maybe they’re like me. Maybe they turtle when things are going to shit. Maybe they firmly DID NOT WANT TO TALK ABOUT IT. I don’t know either personally, so I can’t say.
But this is not a post about suicide. I am no expert in that arena… It just breaks my heart that it happens at all.
What I am a bit of an ‘expert’ in is APPEARANCES.
Like the photo above that LIES in the happy story it is giving off, I am no stranger to happy appearances when all is falling apart.
After all, we went to the party. We look nice. We probably looked like we were managing okay – all things considered.
We were not.
It was at least another two years after this photo before I sought help to deal with the pain and the trauma and the PTSD I had experienced as a result of our daughter’s medical issues. Therapy (specifically EFT – emotional freedom technique – if you’re interested) helped me heal and get through a quagmire of emotions and fears and anxieties. I didn’t even realize how much I was drowning until I was able to surface and breathe for awhile.
Yet, while I was drowning I was still working as a consultant, and building our house, and being a mom, and a wife and a friend. I was “doing it all.”
I’m having a friend over for dinner tonight. I sent her the menu this morning to make sure it worked for her, and she wrote back “amazing! I don’t know how you do all that you do”… And I cheekily wrote back “MAGIC.”
And the truth is – I DO do a lot. I work, and I am very good at my job. I founded GIRLS CLUB and it is thriving. I have a wonderful marriage, and lovely daughter, and amazing friends. I’m a good cook, and a good mom, and I run a household in a home that I designed inside and out. I AM VERY CAPABLE… and I am really PROUD of how capable I am.
And I am ALSO a person who experiences the occasional panic attack. Mine now come in my sleep. Some nights, about 20 minutes after I fall asleep, I come gasping up for air and scare the hell out of both Dan and me. My heart is pounding, and I feel unable to breathe for about a minute. Then it passes.
I hate them, of course, but they are better than the panic attacks I used to have before therapy. Those were less sharp, duller, and would last for 2 - 3 days with a dull ache in my chest that made it hard to breathe. With only two exceptions, I went to work, did the mom / school thing and went about my days with the APPERANCE of everything being fine.
Can it be true that one person can be both UBER CAPABLE and ALSO suffer from panic attacks, insecurities, and petty worries?
YES. I can tell you that is true because I am that one person.
I am very capable, and my life is mostly shiny + great, and it is ALSO true that my life has shitty parts and challenges, and I often doubt whether I’m doing everything WELL ENOUGH… Especially motherhood.
I’m sure social media makes it all worse because there are glamourous selfies to be shared and “congrats on your promotion” stories to mention, but I’m also sure that APPEARANCES are nothing new.
No one likes to expose their underbelly; everyone likes to be admired or even envied… to look like they “have it all” (even if that is impossible).
I am guilty of this. I definitely want people to see me and think:
Wow, Vicky is so capable and shiny and happy and pretty
Not: poor Vicky; she used to be such things, but now she is just a mess:
dropping the ball, and haggard and fat… It’s so sad
Why I care about what people think, I couldn’t say. Sometimes I don’t, I really don’t. But I often do. It’s maybe 50/50 at this point.
I’m hoping to get to a point in my life where APPEARANCES are nothing – not my physical appearance: there is nothing wrong with wanting to look nice… I mean the kind of FALSE APPEARANCES that project a shiny, happy, all-is-well BS story like the picture above.
Until I can evolve to that point I’ll leave it at this:
This photo shows a handsome, happy couple.
And – yes – we are happy: our life is blessed 1000x over
It also shows a moment in time.
A really, really shitty moment in time when I didn’t think I could cope with the pain…
Both are true.
*Embracing the word “DISABLED”*
I never realized that I had any reaction to the words “disability” and “disabled” until they hit so close to home.
I worked for the Olympic and Paralympic Games in 2010 (VANOC), and I considered myself an informed and enlightened person. I had attended accessibility awareness training, and I’ve even delivered it, too.
Funny how a topic can be easier to wade into and accept when it is “other” to you.
I remember one of the accessibility experts at VANOC referring to mobility as something that is temporary for everyone. Meaning, of course, that the aging process strips away our mobility over time. For many, this happens slowly, and is just taken for granted as the ‘aging process.’
For others, mobility may be impacted by an accident or an injury… It comes at an unexpected time and in an unexpected way.
I reflected on her words every time I pulled a muscle or rolled an ankle. Once I broke two toes, and became suddenly VERY aware of how the world caters to the able-bodied. I was struck many times at the inequity of that… and, then, as bones and muscles healed, I was able to put that awareness on the backburner… Not totally GONE, of course, but not ever-present. I would silently ‘tisk’ when I would see a situation that I realized was inaccessible. I might even point it out to the “authorities,” like telling event staff that the elevator was out of order, or insisting that a something be moved to be better reaching distance.
I probably felt pretty proud of myself in these moments. Look at me, I am a Helper. I am an Ally. Yay me.
And then disability came into my life, and it suddenly felt too close to home. I didn’t want it. I didn’t want any part of it.
I didn’t even ask myself why for a long time. I wasn’t even in a place where I could ask myself that question. Like: why didn’t I want the association? What was the trigger? Was I ashamed?
At first, I just told myself that “disabled” didn’t feel like the right word. My daughter wasn’t “disabled” – she was just unique. Yes, she had challenges, but I wouldn’t say “disabled”…
Since I never liked “differently-abled” (it felt like an awkward mouthful straining to be politically correct), I just kind of coasted along, not referring to my daughter’s disability at all. We couldn’t ignore it, but we didn’t NAME it or LABEL it either. We just talked over and around it. “She will need some extra help / time / assistance with xyz…”
I can’t remember WHEN I started to use the words “disabled” and “disability” to refer to my daughter and our life…. But I *can* remember WHY.
First, I started to read more about what actually autistic (#actuallyautistic) people had to say about being autistic. From there, I’d find comments from and links to other autistic writers, and then disabled writers (sometimes autistic, sometimes not). And here is what I realized:
Many disabled people are not afraid to call themselves disabled. And, I realized – rather belatedly – nor should they be.
If you are reluctant to use the word (as I was), you need to ask yourself WHY.
So I asked myself WHY. I didn’t like my answer.
I wanted to say it was because I didn’t want to pigeonhole my daughter. That it was because I didn’t want people to see her limitations and challenges, but to see what she CAN do… And – honestly and ultimately – that is very true. But what is ALSO true, is that I was ablelist AF.
I was afraid of those words. I was afraid that those words would make her FEEL less or BE less. I was afraid that it would change the way that people look at her, and look at me.
I didn’t want pity.
I didn’t want to feel labelled with something that didn’t feel fabulous.
I shunned the label and all that came with it.
WHY? Because society (and I am a part of that) stigmatizes disability. It doesn’t embrace it. It doesn’t celebrate it. It pities it. It “others” it. At the best times, it uses it for “inspiration porn” (https://en.wikipedia.org/wiki/Inspiration_porn)
I didn’t want ANY part of that.
Until, I did. Until I realized: F that – I’m flipping the script on this.
Now, I am not a trailblazer. I am not the first, and it was not my idea. I am merely following what disability self-advocates are already doing. I am trying to learn from their example, and jump on board.
So, I am claiming the words “disabled” and “disability” for my daughter and my family. I want to raise her to feel PROUD of who she is: strong and amazing, and – yes – disabled too, so what?
Why have we demonized a word?
I refuse to buy into that any more. There is nothing wrong with being disabled. There is nothing wrong with having a disability. I will not take on any shame or feel awkward or weird about it.
My daughter is amazing: beautiful, smart, silly, sassy, fun, loving, wonderful, autistic, disabled, fantastic, musical, lyrical, strong, hardworking, and more.
Her disability is part of her: a huge part. Some may say “she is just her, not her disability”, but she cannot extricate herself from her disability. It is not something she can choose to have / not have, not something she can hide / not hide.
(Don’t get me started on the emotional costs of hiding disability, autism, mental illnesses, invisible illnesses, etc., because this post is hella long enough already, and I will save that for another day.)
And, so, we EMBRACE it. We “kiss the ground that others have cursed” to steal a line from another. And, there was so much RELIEF and LETTING GO, and STRENGTH from going there, from embracing the words “disability” and “disabled”… It was like a power switch. It happened when we switched from the highly euphemized “on the spectrum” to “is autistic” as well… but, that’s another post for another day 😊
So, this post was much longer that I expected… I’m searching for a profound way to sum this all up: to DROP THE MIC with a truth bomb so rad it blows your hair back, but I’m coming up a little short. Instead, I’ll just say: THANK YOU, thank you for reading and being a part of our journey.
GIRLS CLUB 2017:
Our Triumphs & Highlights
Dearest GIRLS CLUB Members,
I'm so honoured to write this letter, recapping our first year together, and setting the stage for what is to come.
It seems surreal to me that this time last year, GIRLS CLUB didn’t exist at all. It was a just niggling feeling in the back of my mind that I wanted to do something for my Charlotte and girls like her. But what? But…. What?
I was reading the book What Every Autistic Daughter Wishes Her Parents Knew, and many of the chapters echoed the same central ideas:
- We are awesome just as we are
- We need a place we can be ourselves
- We need each other – we need to see other girls just like us to know that we have a community, and share a sense of one-ness, same-ness, and belonging
GIRLS CLUB grew from these ideas, and the strong desire that I must do everything possible to strengthen and cement my daughter’s sense of self, her self esteem, and self-worth. That is at the core of what GIRLS CLUB is all about.
Our year, in review:
- We kicked off GIRLS CLUB with a well-attended and surprisingly rowdy pizza / karaoke party in April. It was beyond my wildest imagination!
I said to my friend, fellow GIRLS CLUB mom, and one of the pioneers who helped get GIRLS CLUB launched (Abbe Gates): We’ll be successful if we have 12 girls attend. We had over 90 people at our first event. No turning back now!
In the Lower Mainland, we followed the pizza/karaoke party with:
April – picnic at Queen Eliz Park | May – yoga night | May – Playland field trip | June – cookie decorating party | June – Maplewood Farm field trip | July – Canada Day picnic | Aug – pool party field trip | Sept – friendship bracelet craft night | Sept – rock climbing field trip | Oct – pajama / movie “sleep over” | Oct – pumpkin patch field trip | Nov – Mayday choir & books night | Nov – Santa / Christmas party | Dec – parents’ connect night
And, in the Okanagan, we got together for:
Aug – launch party | Sept – potluck picnic | Oct – Halloween party | Nov – cookie decorating party | Dec – holiday party
Along the way, we also:
- Got our website up and running: www.inGIRLSCLUB.com
- Recorded a podcast: http://autism30.com/ingirlsclub.html
- Created our private Facebook group:
- Launched an Okanagan Chapter, led by the amazing Bree Cawley
- Raised almost $12,000 in private and public donations:
- $2,725.00 from GC parents, families, friends, & friends-of-the-families
- $9,000.00 in a grant from TELUS
- Ended the year with 147 GIRLS CLUB members, ages 19 mo to 31 yrs
And, in a most spectacular year – hands down – the absolute highlight was getting to know your GIRLS, you, and your families.
And, next year, we grow -- we are not slowing down in 2018!
- Bree and I have a leadership meeting in the early new year to strategize our growth plans and goals for GIRLS CLUB, and how best to stretch those TELUS funds
- We’ll be sending out a membership survey to assess what we can be doing better to connect, support, and provide fun-filled opportunities for our GIRLS
- We’ve been working on a GIRLS CLUB logo to be released in the new year. The initial illustrations were so delightful, I squealed! We cannot wait to unveil it publicly
- We’ll be connecting over princess tea parties, a Talent Showcase, a birthday party to celebrate GIRLS CLUB’s first birthday, and many more events.
Whether you celebrate Christmas, Hanukkah, Kwanza, something else, or not at all – I wish you the very best and brightest as we close 2017.
I know that the best part of 2018 will echo the best parts of 2017 – connecting with you and your GIRLS. Thank you, humbly, for such an incredible, life-changing year. It’s been a privilege getting to know you all.
I wish you good health, happiness, and prosperity for 2018,