Life Changers: 17th B-Day

You know that voice in the back of your head, the one that sounds like your <insert authority figure here>, saying "You're going to regret that when you're older"? Ya, well, there was at least once in my life that I wish I had listened to that voice.

When I turned 17, my friends and I celebrated the same way we had been since I was 15. We loaded up into a car and went down the road to my Grandmother's to go sledding in the gullies at the edge of her property. This seems like the obvious thing to do when your birthday is in the dead of winter and you live in the Middle of Nowhere, Northern Ontario. This year, things were a little different. There was a good foot of fresh powder! So we did what any fun loving group of teens would do.

My boyfriend at the time was six foot two and built like a line backer. So he took turns lifting us over his head and throwing us down the hill into the fresh powder. It seemed like a good idea at the time. It may even have been my idea. Well, when it came for my turn, something happened. His foot found a gopher hole and it through off my trajectory. I landed on the flat of my shoulders, crumpling me like a tin can. I was in a fair amount of pain, and I couldn't breathe. I'm not even sure I managed to uncrumple myself right away. I know I couldn't even lift my hand to let them know I was okay.

They came scurrying down the embankment, and by the time they got to me, I was able to move around. I even got up and walked back up the hill, and continued to sled for the rest of the afternoon. I felt fine.

But today, among other problems, I've got a mysterious back pain that can only be managed with some of the most powerful painkillers this side of narcotics. I can't help but think back to that day, and hear my mother's voice in my head. "You're going to regret that when you're older..."

Fiction

Fiction is always as escape from reality. From OUR OWN reality. Good writers write good stories. Great writers create great characters. And truly inspired writers write inspired stories with inspired characters in inspired universes. An author's chosen genre should not dictate the intelligence nor age of their target audience any more than their favourite colour should dictate how much they are paid per book. Books are for everyone. Of every age. Of every nationality. Of every IQ percentile. Of every ethnicity, spirituality and sexual orientation. You don't even have to be literate; that's what audio books are for...

I know a young Christian girl who isn't a fan of Fantasy. She prefers what she calls depression fiction. The kind of stuff that involves the capture and torture and deprivation of innocents. I was shocked. I asked her, cautiously, why? "Because you have hope. You know something good is coming" Her response floored me. But I could relate.

It was a combination of Christopher Pike's 'Remember Me' series and Marion Zimmer Bradley's 'Avalon' series that got me thinking about my faith and spirituality. Having said that, they are also some of my favourite escapism reading.

There are books that I simply cannot read when I am feeling low. As well written as they are, they are simply too moving. They hit too close to home, and I end up setting the book down with shaking hands, and feeling like I may have a panic attack. Having said that, when in the right mindset, I can read those same books, and come away with a different outlook on my situation, and often, a new tool to try to deal with whatever it is in my life that this particular book is speaking to. On that note, I highly recommend the Crossfire series by Silvia Day for anyone who is struggling with emotional scaring, and may be afraid to take the step of seeing a psychologist.

There are other books that I have read so many times that I can practically recite the chapters. The characters feel like old friends. These are the books that I turn to when I am feeling ill, or homesick, or just overwhelmed.  Laurell K. Hamilton's, Kiss of Shadows is one such.

I have an entire bookshelf full of books that I've purchased (used) or been given that I haven't even gotten around to reading yet. Forgetting the list of books recommended by friends. There are days that, I will admit, I feel a little overwhelmed by the sheer number of them. Gone are the days when I spend 8 hours a day reading. but I also know that if I ever feel the urge to write, but can't quite tap into my creative juices, all I need do is pick any 5 books at random, start skim reading, and then wait for my brain to start tickling.

People often ask me where I get my writing ideas. The truth is, that I'm a worry wart. I have the unfortunate knack for what-if'ing any scenario. In life, this can lead to anxiety, headaches, and even ulcers. I try to curb that particular knack into a tool for writing. I will mull over someone else's story idea, and "What if" it until you can no longer recognize my starting point. 

Fiction is also the scariest thing to write. Non fiction is easy. It's either an opinion -no matter if it's based on researched facts- or just life stuff. Non fiction is something I do for myself, and hope that maybe someone else might like it, and maybe even learn from it. Fiction is something I write first for me, but always with the knowledge that there is an audience. An audience full of editors, critiques, and much better authors than myself. I'll stop there, before I turn this into a post on Writing.

It's Not Lupus!

I meant to type this up when it happened, but to be honest, I'm glad that I waited for the reality of it to sink in.

In February, I had a follow up appointment with my neurologist after yet another test. First off, the test was on Hallowe'en. I'm not greatly pleased that it took me 3 months to get a follow up appointment. Having said that, it's the nature of the beast. It also helps that my neurologist is one of the best health professionals that I've ever had to interact with.

So, multiple sclerosis. It was something that my GP mentioned might explain my symptoms, even though it was rare in people my age. It was removed from the list of suspects, early on. However, when my symptoms started getting worse, it had to get added back to the list.

This most recent test was able to take it off of the list again. This news should have left me jumping for joy. I'm sure part of the reason it didn't is that my neurologist's clinic style greatly resembles an avalanche, meaning that I didn't really have time to think about it. I'm equally sure that part of it was simply shock. I have spent months getting used to the idea that I may end up in a wheel chair, or worse. *shudders at the thought of adult diapers or a colostomy bag* That I may have to start explaining to all of my very supportive friends, that Yes, I know that there are alternative treatments, but I am also a single, unemployed 27 year old. I cannot afford treatments that are not covered by OHIP. I can barely afford the medications that I'm taking now, thanks anyway. And no, I do not have the energy to apply for grants and enter test trials and all that sort of thing. This is where we get back to the idea of Quality vs Quantity. Yes, my health is kicking my ass, but I'd prefer to enjoy my good days doing what I want to do, not spending all day researching and making phone calls and writing emails to Doctors and clinical programs, and my local MP (Gee, you'd almost think I've gone over this a time or two).


So now you're wondering what I was left wondering. If it's not MS, what is it?

The popular theory right now is Fibromyalgia. I thought this was a disease which I knew something about, having had a Mother In Law who had been diagnosed with it. Turns out it's a lot more complicated than I thought. There are some who believe it to be a mind over matter sort of thing. People hear the term Phantom Pain and assume that it's a pain one feels because one thinks  there is pain. Not true.

Fibro patients show visual signs on brain scans that there is something wrong. Tests just cannot confirm the cause. Hence, phantom. Symptoms range from sleep disorders, to mood swings, to cognitive disruptions. To be perfectly honest, I'm sort of relieved to have a possible diagnosis that covers so many of my symptoms! Granted that confirming the diagnosis will likely mean several dozen more tests, as it is a diagnosis of exclusion. Think Dr House. Differential diagnosis. We test for everything until there is only one possibility left. And no, it's not Lupus :P While I am still mildly frustrated at the lack of a concrete answer, I am beyond relieved to be told that I will not in fact have to endure a needle being bored into my spine, and will likely not be suffering from degenerative symptoms. I did eventually have a good cry, and that helped it all sink in. But I spent at least a week explaining the results to everyone before it really sunk in what that meant for me. Having watched both of my grandparents fade away from cancer, and having several distant relations who have suffered from MS, my level of relief simply cannot be expressed with mere words.

Now comes the renewed efforts of balancing my life with my illness, and my pain with the drugs. The fold away cane that my Uncle bought for me has certainly been a Blessing, but I'm still thinking about investing in a wheelchair. There are still days that I just cannot move under my own power, and I don't want to be a hermit! I have enough wonderful friends that I'd never be at a loss for someone to escort me about in my throne ;) I've recently survived my first overnight convention, and am already making plans for a much bigger one next summer. More immediate plans include a week long visit in Hamilton for St Patrick's day, culminating in yet another brain scan, and a trip up North to visit my folks at the end of summer. Looking forward to seeing everyone, especially the babies :) I'm not going to let this condition keep me from living my life to the fullest.

Naïvety

NOTE: This is something that I wrote some time ago as sort of a poetic rant. Here seemed like a good place to share it.

It is the gentlest of us, the kindest, the most naïve, the generous, those with the best of intentions, who end up battered and bruised. We are the compassionate ones; the empathic. We look at the world around us and attempt to filter out the negativity. We strive to see the good in everyone, the silver lining to every situation. We walk around in a constant state of optimism, always quick with a smile for each stranger we pass in the street, and to step lively to open a door for an elder. 

Suspicion is not something that comes naturally to us. It takes several incidents for us to even begin to bring our guard up. And so we don't notice the deception, we never see it coming. We wake up one day and look around and wonder how we could have been so blind, so trusting, so oblivious. And we attempt to rebuild the shambles of our lives, weaving together the shards of our psyche with stray wisps of sanity. And suddenly we find ourselves hiding behind layers of masks, our former selves peering hesitantly around the edges. And so we bear the scars of Humanity and slough off the dead tissue to reveal new skin with the shedding of each mask.  

But eventually, let the last of them fall away again; we have to. The day we stop having Faith in Humanity will be the day we climb upon the funeral pyre.

Temptations

The minute that someone explained to me that things like fear and doubt could be classified as temptations, a switch flipped in my brain somewhere. Temptations? *scoff* I know how to deal with temptations. You're looking at the girl who didn't have an ounce of chocolate for 6 months. The same girl who gave up alcohol for over 8 months. I've never had a problem with impulse buying or spending beyond my limits. I am a very budget minded person, and have no problems ignoring all of the afore mentioned temptations. Now I had the weapon with which to slay my inner demons.

What nobody tells you though, is how much energy it takes to stay strong. When you're dealing with a degenerative neural disease, you don't really have a whole lot of energy left after fighting your mind, body and emotions all day. I honestly don't know what people are talking about when they say I'm so strong. The person who snaps or lashes out because she's so damned sick and tired of being sick and tired does not seem very strong to me. I do try to keep my temper reigned in. The good news is that I happen to be a very self aware person, so I win more than I lose on that front.

As we come out of Christmas and my birthday, and therefore out of the only season I permit myself to gobble whatever food I like, I'll be eating smaller portions again and doing more exercise, in hopes that as I show my body who's boss, I'll also be able to work on controlling my fear and my temper.

The good news is that I have already noticed some progress on that front. I'm able to notice the temper tantrums as they build instead of after I've become a whirling dervish of fury. And I'm already noticing that my motivations in my everyday and personal life are no longer rooted in fear. I am able to look the fear in the face, acknowledge it, and then step around it. I can't even begin to explain how amazing that feels.

As far as diet and exercise goes, a recent visit to a Nutritionist has left me with some useful advice that I have already put into place. Let's see what my weigh in is like at the end of the month.

Dealing with Failure

One of my biggest pitfalls is learning to accept, deal with, and move past failure. We're talking anything as simple as forgetting to fill out a box on a piece of OW (Ontario Works) paperwork to not having a meal turn out just the way I wanted it to. Some people will read that and simply call me anal. Yes there are people out there who are that uptight and control freaky just because that's the way they are. 

And then there are people like me who have spent a good deal of their life being emotionally punished for the slightest failure. Did I mention that I grew up in a house that utilized corporeal punishment? My dad had the 'anything worth doing is worth doing right the first time' attitude. Failing was often not an option.

I have thankfully gotten to the point where I at least recognize that I am beating myself up for a perceived failure. I can shrug off a lingering depression that is fueling itself from those feelings. However, it often takes longer than it aught to get over the initial hump of ‘oh my god! What have I done! I've spoiled everything!’

I have very high expectations for myself. I am always striving for perfection. Good enough is never good enough. I drive myself crazy trying to always do better. I cannot see the things I have done as 'accomplishments'. I cannot see the things I have survived as evidence of my strength. It makes me crazy  that it takes so much effort just to get out of bed, just to put one foot in front of the other, that it costs me so much to move in the direction that I want to go in.

You cannot win at life. There is a Game Over screen, but there is no Victory screen.

When will I realize that? When will I stop kicking my ass because I haven't done enough? I am about to be 27 and I am sitting here railing, "What have I accomplished? " I have two baby sisters, one with two kids, and husband and a house, and the other with the same, less the kids. 

I wrote a children's story when I was 17. Published it when I was 19. But it was a self publication, and other than sell enough to break even, what the hell have I done with it? Nothing! It's sitting in my basement, collecting dust. I had all of these grand plans for selling them and writing more, and making a good deal of profit from it so that I could just work whatever minimum job I wanted to that made me happy. Now look at me. 

I hate that the only real progress I have made in the past five years has been psychological - not that that's anything to sneeze at, but come on! I was working my way up through the ranks of my last job, a job that I loved, was good at, and found fulfilling  And then I was forced to quit because of my health. I cannot even get a part time job because I can never tell when I'm going to be completely unavailable, nor for how long. It's simply not fair to any prospective employers. 

Apparently a big reason that I have such a hard time dealing with failure is that I cannot accept my limitations. I have no problem attributing this to pride. I seem to have mastered the art of setting it aside in such instances as accepting OW, accepting a ride in a wheel chair when it becomes needful, or taking my cane with me almost everywhere that I go. And yet...

I strive be be completely self sufficient. Meanwhile, life keeps throwing me curve balls that make that completely impossible. I am dependent on the pills, the caffeine, OW, the people around me... I wish that these things could be wants instead of needs. I have so few wants, and way too many needs. I attempt to strive for one thing, and up crop all of these needs. It certainly adds an emphasis to Special Needs.

I have to keep asking myself if I'm doing the right thing. It's sort of like the insanity test. If I can ask if I'm crazy, then everything is fine. 

So...Am I crazy?

Weapons of Self Destruction

Here is a perfect example of how we make tools into weapons.

I was having an online conversation with a friend about maybe going to the Royal Ontario Museum, the Science Center, or even to the Toronto Zoo. These were fun and exciting things that I had never experienced before. During this conversation, I managed to upset my roommate whom I was hanging out with at the time. I then decided that I didn't want to do the fun and exciting things.

I have come far enough in my understanding of myself to realize that I was brainwashing myself, but couldn't figure out why it was so easy and so instantaneous, nor why I was even doing it.

So I hashed it out. It didn't take long to discover that the reason I was doing it was because I felt that I'd done wrong by upsetting my friend; I was punishing myself. I had decided that I didn't deserve the 'treat' of these excursions.

As for the ease in which I was able to make the mental and emotional shift; I have always been a very willful person. Call it stubborn  call it determined, call it self disciplined. I can walk down the chocolate bar aisle and just keep walking. I can be offered my favourite sweet or savory treat and decline with grace, at times, even without hesitancy. I was using those same strengths to convince myself that I didn't want to go. Which then meant that there was no feeling of loss or regret, but this is counter intuitive to self punishment. There should be some sense of loss in any punishment based on denial of a desired thing.

Conclusion: I'm an idiot. But a very clever one.

And this is how we turn tools into weapons of self destruction.

Why do I feel this way? Let's dive a little deeper into my psyche.

I've been to the Toronto Zoo, but not since I was a wee lass. I had never thought of going to the ROM nor the Science Center  at least not since I was a kid, and talked about going with Dad. That's very much a me and Dad thing.

Then there's my roommate, who covets all of my experiences. He wants to be the one to share them with me. This applies to others as well, not just me. He genuinely enjoys a shared experience with anyone. He's an experience junkie. Personally, I think he's just trying to power lvl ;)

Okay, so those are just sentimental excuses. Let's try another angle.

I don't know how to feel about being spoiled in general. It's difficult for me to accept gifts even at Christmas and my Birthday. In fact, when I had a birthday party with my new London friends, I insisted on no physical gifts; instead, I demanded a performance of sorts from each one (they are all talented performers of some sort).

It's not that I don't want the gifts...I just mange to convince myself that I don't deserve them. Someone told me recently, that its not about the feelings of the person receiving the gift, but about the feelings of the person doing the giving and that, I can relate to. I'm a really good gift giver. I have the ability to find that one thing that speaks to a person.

A friend tried to tell me once that gifts were often selfish in nature. That we give gifts based on our likes and wants. I'm not like that. I never have been. I find the thing that screams a person's name. And often, its not something that I would necessarily like or want. And it feels so good to watch the person open it, examine it, realize what it is and then get that 'Oh My God, this is amazing!' look on their face.

I guess for me the selfish part is wanting that glow. That feeling is for me.

With that in mind, I should be able to receive any gift offered me, with grace, be it a new T-shirt, a spangy new necklace, or an adventure amongst the various hot spots in whatever city I happen to be gracing with my presence, with the knowledge that it is making someone else happy. I am nothing, if not a people pleaser.

My new mission: use these tools to make progress instead of turning them around on myself and busting up the new path I've laid.