Invisible Disabilities and Having a Go at Cancer Lady

Dancing FeetHubby and I started ballroom dancing last February in preparation for our wedding and enjoyed it so much we just kept going, except for the three weeks I was in the psychiatric clinic. Returning after an absence brings about a perfect paradox in the life of someone who suffers from both depression and social anxiety. The depression side of you hopes that people have at least noticed that you haven’t been around for a few weeks, but the social anxiety side doesn’t want a fuss or any attention drawn to you whatsoever. Turns out, I needn’t have worried…

We arrived at the same time as another couple who, unbeknown to us, had also missed a few classes. The wife half of the couple had the unmistakable shaven head of someone undergoing chemotherapy. Hubby and I got the “oh shame, hope she’s ok, wonder what kind she has” out the way. I smiled my socially anxious smile and we entered the ballroom; where sympathy descended upon chemo lady.

Now I am taking nothing away from chemo lady. Cancer is a horrible beast. Hubby had leukaemia as a child and so I am all too familiar with his stories of how cruel the disease, as well as its treatment can be. However, I had just been in hospital too. For three weeks. For a life-threatening condition in the sense that I wanted to end my own. I have temporal lobe epilepsy that was giving me two seizures a day at the time. And a dreadful chemical imbalance that I didn’t ask for, any more than she had asked for her tumours.

Not all disabilities are visible

The difference here is obvious. My diseases are invisible. You can’t see epilepsy. Or anxiety, or depression. You may see its symptoms if you know what to look for, but for the most part, I am fighting an invisible battle, while chemo lady’s is very much out in the open. Now this isn’t about attention, this is about support. This is about knowing that people are in your corner. Our entire dancing class is in chemo lady’s corner. No one knows I need them in my corner too. And I think the thing that possibly makes me the saddest is that even if I told them about my invisible illnesses, about what I struggle with each day, I feel quite certain I wouldn’t get as enthusiastic a response as her bald head did.

All in your head

There is something terribly wrong with our society. Something that seems to think that mental illness is a choice. A weakness; something we should be able to just snap out of if we were strong enough. You don’t expect people to snap out of cancer, or diabetes, or hypertension; but when it comes to ailments of the brain – well then, just think yourself better. Maybe it’s because doctors can’t yet prove with scientific tests exactly what’s chemically going on in your brain to cause depression, so it must be “all in your head”. Wouldn’t that be a fine thing. If I could “think myself better”. Lord knows I’ve tried.

If mental illnesses presented as physical then even if someone wasn’t brave enough to seek help, or didn’t know where to turn, if they were in so much pain that they would rather be dead than alive, at least someone would freaking notice! Hell, it would probably present as a gaping wound on their forehead! Blood and puss would be gushing out of their ears. It would be nasty. The kind of thing that people would stop to stare at, that people would gather round. The kind of thing that people call an ambulance for. But mental illness is invisible. And so you go unnoticed; unhelped; unrescued.

How we feelIn fact, if anything, mental illnesses are worse than invisible. If people do notice a sign or a symptom, they usually feel so awkward about it, they’ll pretend they didn’t see it. Crying in the bathroom stall at work? What a weirdo! Can’t she get her shit together like the rest of us? Personally, I think getting your shit together is overrated. I think it’s a myth. Perpetuated by people so boring they have no shit to get together. When you’re made to feel like it’s an attainable goal, yet it feels like your world is crumbling around you, crying in a bathroom stall should be perfectly acceptable behaviour.

Everyone deserves their privacy and the invisibility of mental illness could sometimes be seen as a blessing, I guess. But I fear most people are using its anonymity as a shield against shame. The fear of rejection and the stigma of mental health issues within society are enough to make anyone hide their symptoms. And it is this secrecy, this tendency to hide in the invisibility that is perpetuating the problem. Mental illness is not something that can be overcome without a strong support system and you can’t have a strong support system if people don’t know what is going on in your life. It is only by talking about these issues, and other invisible illnesses, that we can begin to break down barriers and heal each other as a true community.

Support Network

In truth, I am part of the problem. I felt sorry for myself because my dance class wasn’t there for me, but I denied them the chance to be. I could have come back to class and explained my absence. I could even have blamed the epilepsy entirely and left out the mental health aspects – something I am prone to doing – but instead I said nothing, and internally berated a poor woman with cancer. I feared their judgement, but it was me who judged them first.

There is a risk that people won’t understand. That they’ll tell you have so many reasons to be happy and that you just need to think positive thoughts. But there is also a chance that someone will give you a hug and tell you that they understand and your support system will become that much stronger. Isn’t it worth the risk?

you-dont-look-sick-awesome

Incident in the BHSV!!!

Husby and I are extremely fortunate to live where we live; spoilt in fact, spoilt rotten. My parents bought a lovely little family home in Beacon Hills (name changed to protect my neighbours from lynching once you have finished reading this post) in the early 80s, back when property was affordable. Over the course of my childhood they gradually expanded on it as finances would allow, turning it into a really luxurious living space. Beacon Hills also grew, turning into one of the most sought after suburbs in the area. My mom chose to rent it out rather than sell when she moved overseas seven years ago. Best decision ever (in my humble, spoilt rotten opinion). But after the tenants from hell, our beautiful home was in desperate need of a little TLC and a little family to love it. Enter me and Husby!

Mom gave us the opportunity of a lifetime: fix up the place, and you can live in it. We jumped at the chance – no other arrangement would enable us to live in a neighbourhood even half as awesome as Beacon Hills. And so the year of trials and tribulations took hold, as we argued with builders, agonised over bathroom tiles and Excel spreadsheeted the crap out of our budget. At last it was ready to live in. We were residents of the BHSV (Beacon Hills Security Village) and had the stickers on our cars to prove it. Only one thing left to do: Join the BHSV Community Facebook Page. Worst. Decision. Ever.

boom-access

Growing up in this neighbourhood I knew many of the ins and outs. I also knew many of the people – those who had bought when my parents had bought and watched me and my brother grow up, playing one hand one bounce, tip and run, over the wall six and out cricket until well after the sun had gone down. There were a lot of people I didn’t know though. The Range Rover drivers, the tennis club members, the “pay someone else to walk your dogs” crowd. But I was about to meet them.

“Keep all posts relative to issues regarding the BHSV” warned the Community Facebook Page intro. The absence of the word “please” should have told me all I needed to know. This was not a place to build friendships and initiate community upliftment. No, this was the place where people with too many fucks to give came to spew forth their cruel, harsh, judgemental vitriol. If folks cared about poverty or world hunger even half as much as they care about how close you’re parked to a white line, a quarter of a mile away from a school on a public holiday, maybe the world wouldn’t be in such dire straits.

restricted-access

But the bone I have to pick today is about semantics; it’s about white privilege, selfishness and a complete lack of self-awareness. I know we live in a country with an astonishingly and alarmingly high violent crime rate. Our legitimate fears keep security companies in business and ensure Australia has adequate skilled labour. But our fears and concerns can never legitimise the victimisation of innocent civilians just because of the colour of their skin, the slight tear in their jeans or the way they walk.

“These people”. Two words to get my blood boiling. Who are “these people”? I’ll tell you who they are; they are the people responsible for every bad thing that has ever happened in your life or anyone else’s. They hijack, they murder, they steal, they loiter, they litter, they bring down the tone of the neighbourhood. They are the devil incarnate. And just as they perpetrate these offences indiscriminately, we identify them in broad and general terms, casting a net wide enough to include 75% of the population.

dompass

“Why are these people allowed to walk our streets, using the suburb as a thoroughfare?” one poster asks. “Access should be controlled!” demands another. “Domestic workers and gardeners should be issued passes,” someone suggests, “That way we can keep these people out”. Restricted movement. Passes. Sounds vaguely familiar no?

Before anyone gets too defensive, I am not accusing everyone of using language that advocates for the reinstatement of some apartheid laws. But isn’t it bad enough that these few people are; completely oblivious to the fact that they’re even doing it. I am also not belittling crime statistics.  Awful, awful things happen every single day. But they don’t happen in Beacon Hills. Can’t we just be grateful for that?

always-full

Despite lifelong struggles against depression and anxiety, I do consider myself a silver lining, glass half full type of person. I would rather enjoy the beautiful weather, the friendly people, the quality restaurants and the spacious home in a security village than bemoan the noisy school children, the douchebags who don’t stop at stop streets and these people, who may very well be ‘casing the joint’, but could more than likely just be shaving 30 minutes off their daily commute by walking through the suburb instead of around it.

Maybe I’m naïve, maybe my apparent ambivalence is part of the problem. But I sure as heck seem a whole lot happier for it.

So far, “incidents in the BHSV” have included an escaped bunny, parents double parking for the five seconds it takes to drop off their kids at the local school and the alleged theft of a pot plant. Watch. This. Space.

Like a mist it descends…

Misty Road

It descends on you like a cloud; or that killer mist from Mount Weather in The 100. You don’t even see it coming. It creeps up on you so slowly, you’re completely unaware it’s even on its way at first; but eventually it arrives. And suddenly you’re drowning in it, gasping for air, but too exhausted to wave your arms about in the hope that someone can rescue you. And then you’re wondering if you even want to catch your breath. Maybe it would just be easier to drown.

Happy Outside Sad Inside

Depression. Statistics say it’s more prevalent than obesity. But it’s an invisible killer. You can see fat people; but it’s hard to pick out the truly sad ones, those who are one wave crash away from drowning. We hide it well you see, because that’s what you do. If I was bald from chemo or had a gimpy leg we could discuss it. If it was diabetes or epilepsy, I could at least bring it up. But not the “D” word, no. That doesn’t even make it to the tip of your tongue.

And why, if it’s so goddamn prevalent? Maybe if we all talked to each other about it, it wouldn’t be so bad. But instead we’re all so busy pretending to be ok that it’s eating away at our souls, one conveniently packaged treat-sized bite at a time.

Anxious Face

This morning started well. A lazy Sunday was in store. The weather was a bit bleak but Joburg winters generally call for snuggling under the covers. I had TV shows to watch, wedding invitations to assemble, scarves to knit, blog posts to write; I never saw it coming. But two invitations in, watching the very show that inspired our entire wedding theme; and I felt my hand hovering over the self-destruct button. I swiftly retreated to the safety of my bunker (laptop, in bed) and disappeared into Scandal. But I felt it weighing more heavily by the second.

Eerie Pic

Husby came in to check if I was ok. I could only shake my head in answer. “What’s wrong?” he asked. “Nothing”, I replied. Because that’s the brutal truth of it: nothing is wrong. I have countless reasons to be happy. I’m getting married in four months for fuck sake. I live in a beautiful house in a beautiful country and I have beautiful friends. I have TV to watch, scarves to knit, blog posts to type; and yet I want to kill myself. If there was a button on the table that could end it all, I would have pushed it long ago. And the worst part is, I have no idea why.

The brain is a complicated organ (or is it a muscle?) It has been studied from every vantage point imaginable; but still so much about it is unknown. At the moment I am going for Eye Movement Desensitisation and Reprocessing (EMDR), a therapy designed to enable the brain to heal itself by reprogramming how you react to certain stimuli. A progress report will follow, but so far all it’s done is make me cry a lot, and remember things I worked very hard to forget.

Among friends and family (and increasingly, work colleagues), I have a reputation for being over-sensitive, for over-analysing and for caring too much. Is this just a way of saying that it’s my fault? If I could learn to care less, “live in the moment” instead of the past or future, then I wouldn’t be depressed. But… feeling things deeply is who I am. Getting invested in my emotions, heart and soul, for better or worse, is who I am. So is depression who I am?

All I know for sure is, the next person who tells me to “snap out of it” or “think of all the things I have to be happy about”, is coming with me when I push that button!

Mist Bench

Why is Nkandla Still Standing?

“After all is said and done, more is said than done”

-Aesop

Nkandla

South Africans have a lot to complain about. As winter approaches, it is the lingering threat of Eskom’s load-shedding; for us Gautengers it is the haunting prospect that one day SANRAL’s e-tolls will catch up with us and we’ll all be sent to prison; and for anyone with a nature loving bone in their body, it is the tragic impending extinction of rhinos. And that’s not to mention the truly sombre state of affairs when it comes to violent crime rates, government corruption and the ever widening gap between rich and poor. And yet, that seems to be all we South Africans do: complain.

Likes

We love to “like” activist groups on Facebook and to “share” their pictures to show our solidarity with the cause. We love to post angry comments on news24 and to phone in to 702 with our 2 cents worth. We love to “dialogue” and to boldly claim what we would do if we were in charge. But talk is easy. It makes us feel as though we have achieved something, when in actual fact everything is exactly as it was before the conversation started. Now, I am not saying that discussion cannot be productive, but it would seem that standing on the side-lines saying, “Someone should do something about that”, has become a destructive South African past-time.

The question plaguing me the most right now is, why is Nkandla still standing? Why haven’t we burnt it to the ground yet? We pulled down statues of Rhodes, and destroyed paintings that reminded us of the bad old days, yet the living embodiment and reminder of the corrupt leadership that is running our country into the ground still stands?! And don’t even get me started on how we’re still allowing a man who grossly violated the Constitution he was sworn to protect to maintain his position of leadership. Oh, sorry, my bad, he didn’t grossly violate it (even though the mere thought makes me sick) he only violated it a little bit. You know, like how you only robbed a house a little bit because you left the toaster. Since when did violations become excusable based on degree??

Winter on Fire

Revolutionaries marched on Versailles in 1789, while the Bolsheviks gunned downed and slaughtered the entire Russian royal family in 1918. In more recent times, over 100 Ukrainians sacrificed their lives in the revolution of February 2014, when peaceful demonstrations against a corrupt government turned violent. Yet torching Nkandla just feels like too much hard work? Are the roads too bumpy for our suburban SUVs to get us there? No one wants to bear witness to the destruction of public property, nor look at monuments that remind us of a fractured past. We’re very vocal about it, but when it comes to actually doing anything about it, we’re happy to sit back and watch it unfold in the press; as long as we can leave our angry comments at the foot of the page.

Now I don’t just want to pick on South Africans. Apathy seems to be a human condition. This is most clearly reflected in the phenomenon of New Year’s Resolutions. The most popular of these tend to revolve around self-improvement: “This year I will be more fit, more healthy, more outgoing, more assertive.” You start off well. You join a gym, stock the fridge with fresh fruit and vegetables and buy a book called “Personality Power” or “10 Steps to a Better You”. But somehow the fruit and vegetables get past their best before you’ve had a chance to eat them, you never make it past chapter 2 and you find yourself slipping into the gym just to use the bathroom so that you don’t fall short of your Vitality quota. You’ve liked all the right pages on Facebook, you’re following all of the health gurus on Twitter, yet somehow it’s May and you still weigh the same and still feel breathless after the short walk from the basement parking garage to your office.

Know Your Ward

Once again we are all talk and no action. We want the outcome but aren’t willing to put in meaningful effort. We want to talk about what is broken, but we want someone else to actually fix it. We won’t leave our comfy spot on the couch to go for a walk around the block because Game of Thrones is coming on and we won’t stop buying donuts because they’re trendy and they taste so damn good. We won’t sacrifice a day of leave to participate in a protest and we will moan about the government yet won’t even take the time to attend a local council meeting. How many of you even know who your ward councillor is?

Since the end of 2010 rulers have been forced from power in Tunisia, Egypt, Libya, Yemen and Ukraine; while civil uprisings continue across many African and Middle Eastern states. Yet JZ still has the seat at the head of the table and not a chicken coop in his kingdom has been so much as vandalised?

Mad so Mad

The part that makes my soul the most sore in all of this is the man standing next to our glorious president grinning ear to ear, making all sorts of promises that he has no intention of keeping. The man who worked tirelessly and broke down barriers to write the very Constitution that saved this country, is next in line to run it through the mud. Maybe that’s why he’s always looking so cheerful.

And so I ask again, why the fuck is Nkandla still standing? And why the fuck is that pugnacious douche bag still our president? Yes, I said pugnacious.

Perhaps it’s time we closed the laptop screens, started using our cellphones simply to make calls and rather than complaining, used our energy to initiate change, rather than just talk about it. Because as Dr Seuss says:

The Lorax