Okay.

Last night, I kind of freaked out.

I had been doing so well at keeping calm, at taking one step at a time, but last night I got overwhelmed.

Earlier in the day I had received notes about a neuro-surgery that I will be having at the end of August.

The note outlined the risks which were scary enough, and then asked me to sign, stating that I understand those risks and wish to proceed anyways.

Then, it laid out the costs. You see, I have to pay to use a hospital bed. For the anesthesia. For the tools used in the surgery. For the surgeon to cut into me.

I have to pay, because this surgery will be taking place in the United States, and I am Canadian.

And staring at the cost, at the line where I have to sign that this really is what I want, that I want it enough to pay for it, doesn’t make any sense to me.

I don’t want this surgery. This surgery terrifies me, as does the potential of having to have more in the future.

But yet here I am, not just agreeing to it, but paying for it. Like it’s optional. Like it’s a luxury, to open myself up to all sorts of serious pain and complications.

I keep going back through the steps that led me here, because this isn’t how it’s supposed to happen.

And if I’m in this position, it must be because I missed something, skipped a step, or did something wrong.

What if I don’t actually need this surgery? What if there are other options? What if there are scenarios that don’t involve me having to get cut into, or at least not having to pay for it?

I always knew that there were holes in my country’s health care system. I just didn’t know that they were this big. I still don’t. I still catch myself thinking that it must be my fault, because I can’t imagine that this is the only way.

And so I go through, step by step, decision by decision that I have made since I first got scarily ill at the end of 2011.

And as I go through, I realize that I never had a single option offered to me by this country. No one ever told me that they knew what was wrong with me, or what could help.

I steadily got worse, ending up in the ER unable to speak or walk, and was sent home.

Even the doctors who recognized that something big was going on all said that it wasn’t their area, and left me with absolutely nothing.

So I went to the States. I saw a doctor who immediately diagnosed me, and seemed to understand what was going on.

And that doctor sent me to another doctor. A neurosurgeon who felt that I needed surgery. Possibly multiple surgeries.

And so here I am, multiple opinions later, and the only confident offerings have all said that this is necessary. That I need surgery. A surgery that isn’t performed with any semblance of expertise on people with connective tissue disorders in Canada. A surgery that isn’t covered to be performed out of country by my province’s health department.

And as I keep debating in my mind whether my symptoms really are that bad, so bad that I need to resort to these desperate measures, I feel myself getting more and more angry.

Because without the neck brace that I now wear 23 hours a day, I cannot physically hold my head up for longer than 10 minutes. Even with the neck brace I experience frequent episodes of being unable to walk, of slurred speech, and of intense pain, numbness and weakness.

Not only are my symptoms scary, but I’m a walking house of glass. I can’t ride in a car without experiencing intense pain. I cannot be touched on the head without the potential for something alarming to be triggered. My skull is sinking, crowding my brain and forcing it to sink into my spinal column. My vertebrae move in and out, constantly threatening the nerves that enable me to function.

It’s scary stuff, and it needs to be dealt with.

Maybe I was just unlucky that I spent four years in the Canadian Health-Care System and the best solutions I was offered were migraine medications and therapy.

Maybe I just saw the wrong people, and that’s what landed me in this position, unable to get help unless I pay for it myself.

But that’s not okay. It’s not fair. It’s not right.

I am incredibly lucky that my family can afford to help me financially in this way. A lot of people don’t have that luxury. I see stories of people in similar situations forced to sell their homes or declare bankruptcy. I hear about people who don’t have these surgeries and end up in the ICU.

But I have to say, I don’t feel lucky.

I feel scared, and I feel angry.

Angry isn’t even the right word.

I’m pissed.

I hesitated in writing this post, because I have nothing positive to offer. Generally, when I write, I write to see the good in situations, to help me understand and see the shades of grey, the various perspectives.

I’m not seeing it here though.

This situation sucks.

But talking to my brother last night in the midst of my panic helped me realize that as horrible as all of this is, it isn’t my fault. I haven’t done anything wrong.

And really, I’m okay. I’m angry and scared, but I’m okay. I think this is unfair and wrong, but I’m still okay. It’s not okay, but I am.

And I think that’s a big deal.

Advertisements

My Personal Guide to Chaos

It’s been a little too long since I last posted, but I think I have a good excuse. Or at least, multiple mediocre excuses that can add up to something good.

You see, I’ve been dealing with chaos. Total and complete upheaval, plans flying around in the air, knocking into each other, and I have had no idea whether I was heading to Oz or a massive concussion.

Right now, though, I think the tornado is settling down. I have a bit of an idea of what kind of shape my summer is going to take, and I’m looking forwards to colouring it in.

To give a brief summary of what’s been going on – I moved cities with essentially four days of notice. For the preceding 2 weeks I knew that something drastic would be happening, but I wasn’t quite sure what. Hence, chaos.

But I can now say officially that I’ve moved to Toronto – at least for the summer. I am undergoing special therapy treatments, and am looking to build a life here.

Now that the winds seem to have calmed a bit – after carrying me a couple hundred kilometres away – I’m finally getting the chance to reflect on what exactly happened these past couple of weeks. To try to figure out how I got through it with only one very brief spell of tears.

And the more I think about it, the more I realize that I did everything wrong. I broke so many rules of stress management that I’d expect to be found rocking, inconsolable, in a corner.

But that’s not what happened. I was really quite okay. I rarely felt too overwhelmed, and when I started to I was able to extricate myself from the quicksand of stress.

Honestly, I flew through the tornado like Mary Poppins – unconventionally, but oh so competently, and so I figured I’d share my totally unreliable guide to navigating a world turned upside down with you, in the very unlikely case that it might be helpful.

So here goes, in no particular order, a control freak’s guide to chaos.

1. Increase your responsibility

I know. Everything’s too much, and you don’t even know where you’ll be sleeping the tomorrow night, or next week, but making life even more complicated is super helpful. I, for example, got a dog. And while that certainly added a complicated and stressful factor to me trying to figure out my life, it was by far the BEST distraction. How can I even think about tomorrow when my dog needs to be let outside right now, and then fed, and then trained, and then given the right amount of time to sleep, and why is he so itchy, do we need to go to the vet? Having something else to focus on, that you have no choice but to focus on, can stop your mind from spinning too far away from yourself. It brings you back to concrete, minute by minute concerns and needs which can give you sense of control. In my case, I also ended up with an adorable ball of fur that I could hug to reduce my anxiety, and an attraction that made the prospect of visiting me exciting – an added bonus. Which leads me to my next rule…

2. Over schedule yourself:

You’re barely sleeping because there’s so much going on, you’re either barely eating or over eating, and you keep laughing in a scary way when anyone politely asks ‘how are you?’, but I promise, getting even busier is a good idea. It ties in with the rule of responsibility – focusing on things other than uncertainty is good. The reality is, if things are chaotic it’s usually because they are outside out your control. The stress comes when you feel helpless, because there really isn’t much that you can do. So keep yourself busy, whether it be with new projects or seeing lots of people. Seeing lots of people can be especially helpful, because it can also lead to the next rule…

3. Talk about your problems

Yeah, okay, nobody likes a whiner. But there’s a way to bring someone up to date with what’s going on without making things too uncomfortable. Or at least, I hope there is. Otherwise I’ve been terrible company these past couple of weeks. The thing is, sometimes when you talk to people they can bring a fresh perspective to what’s going on. They can also help. I can’t tell you how amazed I’ve been these past few weeks at how much help I’ve received – and all I had to do was ask! It’s been such a game-changer. Also, when you can be open with your friends/family about your own struggles, they might be open about their own. Because trust me, they’re struggling with something too. And when you know what it is you can try to help them, in whatever capacity they need, and that’s basically friendship summed up and it’s awesome and one of the best ingredients when dealing with life.

Finally, I guess when all else fails, I’d recommend you temporarily pull an Elsa and just let it go. I’m not talking about the healthy, being able to brush things off approach. I’m talking about the full on, run into a frozen wasteland completely isolated to avoid not only your problems, but everything else.

Of course, that’s not a good long-term solution. I would only advocate that tactic temporarily and in cases of extreme emergency, but spending a couple of hours not interacting with anyone and taking a stand by refusing to do basic tasks like laundry or cooking, or even brushing your teeth can occasionally be just what you need. As long as you have your very own inner Ana to pull you back, refreshed, to the real world before you get too carried away.

Looking back, this guide is pretty terrible. I’m sorry about that. But the thing is, it worked for me. It worked really well, and was exactly what I needed to do.

So to all of you going through your own tornados, whether you’re searching for a job, waiting to hear from school programs, apartment hunting, or dealing with anything else overwhelming and stressful – just remember, there really isn’t a right way. If chocolate helps, please indulge. If distraction helps, pick some TV shows and binge away. If planning helps, don’t feel guilty for drawing up plans for multiple scenarios.

Just keep holding tight to your umbrella.

You might end up in Oz.