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 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.