Thursday, 30 June 2016

Fear--The new F-word

You can’t turn your head these days without hearing some expression with the word ‘fear’ in it--fear-mongering, ‘the politics of fear’ or, my personal favorite, ‘hope over fear.’ Or failing that you hear someone accusing someone else of having the latest ‘phobia’-du-jour—Islamophobia, xenophobia, homophobia, you name it. If these expressions and accusations are to be believed, it would seem Canadian society is hopelessly plagued by spineless, ignorant, and hateful people only capable of making decisions based on these less-desirable characteristics. But you know what? I beg to differ. I don’t think that this the case at all. I think most Canadians are empathetic human beings capable of drawing rational conclusions, even if one doesn’t entirely agree with them. If there is one thing on this planet that I can’t stand, it is when people demonize their opposition. I’m not joking when I say this, not fear, is the thing wars are made of, and, in my humble opinion, that is exactly what the use of these fear-phrases intends. I’m talking about things like, ‘Oh, you don’t agree with my stance on immigration? You must be xenophobic’ or how voters in our past federal election who favored a more proactive approach to ISIS were labelled ‘fearful’ or (my favorite) blaming religion for using scare tactics to encourage bigotry, misogyny, homophobia and every other world problem. Oh, and if my facebook newsfeed is to be believed, this whole fear-slinging phenomenon is not limited to North America as I recently had the pleasure of hearing similar garb from British friends accusing their Brexit opposition of spreading propaganda and fear-mongering for this, that, or the other thing. Quite frankly, I’m sick of it for a few reasons…

#1 Information that does not support your position does not equate to fear-mongering (necessarily). Before I get into a rant, let me give some credit to the whole ‘fear’ thing. I don’t think it is disputable that people occasionally employ fear-tactics to sell things, sway votes, or otherwise push their agenda. It happens. I am just of the opinion that the phrase ‘fear-mongering’ is now a grossly overused default for anyone who wants to discredit information or people they disagree with. Sometimes information is just information, and, what’s more, I think the vast majority of the Canadian public is intelligent enough to know the difference.

#2 People make decisions out of fear all the time. Do you have a lock on your house? How about your car? You act out of fear. Do you avoid certain things, say delicious foods, because they might harm your health? You act out of fear. Maybe you live in a certain area of your city that you feel is ‘safer’ for your family. You act in fear. Why else would you spend a hundred thousand dollars more to live in the exact same house you could choose in a different area of town? Do you avoid tall grass for fear of ticks? Have you ever avoided a bad area of town at night or maybe chosen a less treacherous route over a shorter one? You act in fear. Do you look both ways when you cross the street or salt your steps when they get icy? You live in fear… I’m being ridiculous now? I can hear you thinking…that is just exercising reasonable caution to avoid catastrophe. Couldn’t agree with you more! People exercise reasonable caution when it comes the protection of their jobs, homes, property, children, communities, and countries ALL. THE. TIME. This does not make them fearful, ignorant or spineless or anything else.

#3 The surest way to spread fear is by talking about fear all the time. So if you really buy into all this fear business (which I don’t) and you actually desire to stop it…Stop talking about fear all the damn time! Is it too much to ask for you to inspire the masses with your fearless, hopeful ways without calling others down?

#4 The strongest fear operating in this country right now is the fear of being called fearful. Let’s be honest…the last thing anyone wants to be called is a coward. Nobody in their right mind wants to be called a racist, a bigot, or a ‘phobic’ of any kind, and ironically this unique brand fear is being spread by the fear-phobes themselves. People walk on eggshells, they skirt around vital issues, they turn blind eyes, they don’t say what they mean, they agree for the sake of keeping the peace, politicians are backed into corners, our society doesn’t act when it most needs to…all for what? To avoid being called fearful. That’s not something to be proud of.

Last but not least…

#5 The mentality that ‘if you’re not with me, you’re fearful’ (AKA against me) is absolute crap. Again, if you want to start a war, divide people into friends and enemies…this is absolutely the way to go about it. This is the roots of extremism--My way or the highway. With me or against me. Hope or fear, which do you choose? DON’T DO THIS STUFF. Between your way and my way—between hope and fear—are a million wonderful shades of grey where real conversation, compromise, and growth will thrive. Of course there are people out there that you will think are pretty crappy but, hey, they probably think you are pretty crappy too, and guess what, we are ALL invited to the conversation. There are even those that are worthy of some of the awful titles I’ve mentioned earlier, but, the majority of Canadians, in my opinion, tread with decency and compassion in the grey areas, and that is a good good thing. Don’t mess with it. Don’t back people into corners with this fear propaganda. Hope or fear? It is not one or the other. Stop talking like it is.

Tuesday, 21 June 2016

To Anyone's who's ever asked what Chronic Fatigue Feels Like

I don't get many questions about my illness—it's a pretty boring subject, after all—but one I've had one a few times is this... What does it feel like? I really get the sense that people have asked this out of genuine concern and curiosity, but, in the moment, I've probably offered a short and not particularly informative answer. It's not that I don't appreciate the concern, it's more that the answer is more lengthy than the social rules of conversation permit. At any rate, today I will do best to answer it, and I will venture to do that without the use of confusing metaphors or in the spirit of a pity party. So, keeping in mind that my experience is just one of many…Chronic Fatigue Syndrome--what does it feel like? Well...

It feels tired. I know this is a bit vague because everyone feels tired sometimes, even a lot of the time, but, trust me, it is different. If you have ever been pregnant and yearning to end your day at 1 pm—it's kind of like that. Or maybe if you've flown to the other side of the world and spent a day or two feeling incapacitated by jet lag—yea, that feeling. Or maybe you're familiar with that sickly tired you get at about 330 on a night shift—similar to that, just ALL day, even at 8 am after a 10 hour sleep. It is the kind of tired that isn't a side show, but the main act in your day.  Add to that...

It feels heavy. To me the heaviness is most pronounced when I am grocery shopping, so I'll use that as an example. Imagine pushing a loaded refrigerator around instead of a shopping cart—that's what it feels like. Or maybe wearing lead suit while you climb the stairs or chase your toddler around. Not always, but sometimes it so heavy that I can't lift my limbs off the bed.

It cycles like a binge-drinking alcoholic. (That's a simile not a metaphor!) One of the most universal components of CFS is a something called post-exertional malaise which basically means symptoms of fatigue and malaise surface 24 to 48 hours after some kind of exertion. This aspect also likely confuses people because it is not uncommon to see a person with CFS out and about, seemingly living an ordinary life. The best way I can think to explain it is this...When you see someone with this illness engaging in normal to strenuous activity, essentially what you are seeing is an episode of binge-drinking—all fun and games...until hangover time tomorrow. So, say, from time to time, you might find me out gardening or staying out late with my girlfriends. Well, post-exertional malaise will ensure that I feel all kinds of shit for doing that tomorrow. That's just how it works.

Also like an alcoholic, a sufferer of CFS can have periods of sobriety (or remission) where symptoms fade and he/she may be able to increase their level of activity for a while. I had a lengthy (over 6 months!) remission recently—an awesome time of which I relished every waking second of that feeling of wellness. Unfortunately, like alcoholism, it is a disease that lingers and a 'fall off the wagon' can be triggered by the smallest of things, as was the case for me when I got simple case of strep throat. Speaking of which...

It feels like sick. The science behind CFS isn't entirely complete, but it is known to leave sufferers immuno-compromised. I find that when a run of the mill virus runs hits our household, I am the first to get it, the last to shake it, and the most miserable in between. Comprendez?

It feels like I've been robbed—mostly of time and quality. Managing this illness, for me, means consistently early bedtimes and rest periods during the day. If I were to quantify it, I would say that it feels like I operate with 2 less hours a day than everyone else, and the hours that I do have are not always that great. For me, this has meant the loss of 'extras' like hobbies, evenings in with my husband, and time with friends.

It feels a bit like I have become my 90 year-old neighbor. Whenever I enter a conversation with old Gladys next door, she inevitably tells me about how her health has deteriorated such that she can't grocery shop or vacuum or keep her flower beds or walk to the end of the block, etc. And then she'll get into how she really should get a cleaner or downsize and how she just can’t manage anymore...All the while, I'm thinking, 'Yes, Gladys, don't I know it!'

It feels up and down. On any given day if you ask someone with CFS how they are doing, the answer will heavily depend on if they are having a 'good day' or a 'bad day.' I have heard those expressions SO often from other sufferers of this illness. And whether or not you are having a 'bad day' largely depends on if you overdid activity the previous day by, say, attempting physical exercise (BIG no-no) or going to bed late, etc. On the flip side, if you behaved like a proper lazy ass and had a good sleep, you might actually feel quite well.

It feels like paranoia. One of the less-than-awesome side stories to this illness is that I have become totally self-obsessed with my health. I can't help but forever sizing up how I am feeling today and what caused me to feel that way and what I might avoid in the future to prevent episodes of fatigue. Even when I am feeling well, I am always wondering what tomorrow will look like and carefully choosing whether or not to engage in A, B, or C in case I inflict the wrath of the illness. Add to that the anxiety about career prospects, my abilities as a mother, and whether or not I will ever enjoy life like used to and so on.

Hope this answers the question for anyone who’s ever wondered. I realize my illness is not the most exciting of topics, but, I do appreciate the concern and the opportunity to vent a little sometimes. Thanks for listening and Happy Tuesday.

Tuesday, 14 June 2016

Are you really OK with difference?

An acquaintance of mine was telling a story about how, as a member of a recent-immigrant resettlement group, she volunteered to meet some newcomers at the airport as part of a team that would assist with the details of their immediate resettlement. She was surprised, and I would say unpleasantly so, when the men in the newcomer group refused to shake hands with any of the women who had come to greet them. There was a number of people present at the time she was relaying this story, and the variety of reactions that it elicited was quite fascinating...

One female quite strongly stated, “Well they can turn around and get right back on that plane then.” Another mused, “Maybe it is their custom not to shake hands with members of the opposite sex?” Quite likely IMO, so I added, “Surely, you don't expect people to leave their customs and culture at the immigration desk.” Another suggested that perhaps the men would react differently in a few years when they were more familiar with Canadian customs. Interesting. What was clear to me anyway is that a random sampling of assholes didn't get off a plane from somewhere and decide to flex their misogynous muscles by not shaking hands with women. No. There is some story of deeper culture here.

I'm happy to report that I have no recollection of where these immigrants were coming from because it is not my intention to encourage discourse or spread hate against any group of people. The reason I share this story is to pose the same question to you as has circled round and round in my head with regards to this story...Are you really okay with difference? Or otherwise stated, are you okay with real difference?

I ask this because I think often culture, from an outsider's perspective, is characterized by surface expressions such as food, language, or dress—all important aspects, but, let's be honest, these are no-brainers in terms of acceptance. You eat different food than me? Great, can I try some. I can observe that you are dressed differently than me. Fine. You view gender roles differently than me? Um... Your disciplinarian practices with your children greatly differ from mine? Uh...

The following illustration captures so poignantly what I am getting at:
Culture is SO much deeper than what we eat or wear or even what language we speak. Real differences in culture—stuff that might make you uncomfortable—is unlikely relegated to extremist groups, and the devil's advocate in me, when topics like this come up, wants to ask questions like...

Are you okay with men greeting women differently than women?

Do you think that the ideology behind such a practice might be further reaching? Are you okay if, say, daily relations relations with wives and daughters are enacted differently than you have come to expect in greater Canadian society?

What might an extension of the whole not shaking hands thing look like in a workplace? Are you okay with that?

How would it make you feel to know other women condoned, expected, even celebrated these types of gender relations?

How would you feel if similar behaviors were expressed or encouraged in schools?

If 10 or 20 years down the road, these types of cultural variations thrive (and I expect they will), how would you feel about them entering the political arena, say if male MP's refused to shake hands with female MP's? Or perhaps if Canadian law began to reflect these types of practices?

An answer I get often when I ask these sorts of questions is, “I'm okay with anything so long as it doesn't affect me.” But to me if the whole no-hand-shaking story tells us anything, it is that 'real differences' can, will, and DO affect you. Are you okay with it???

Sunday, 12 June 2016

What's so Great about Garth Brooks?

Along with 90 000 other people from far and wide, I experienced a Garth Brooks concert this weekend in Saskatoon. I use the word 'experienced' because anyone who attended will tell you the same thing—the concert was an experience of joy, music, heart, and pure electrifying energy. I could go on and on, and I couldn't overstate the awesomeness of being in that building. Last night after it was over and I started to come down from what I can only describe as the high I was feeling, the word that came back to me over and over again was 'generous.' Garth Brooks is truly the most generous performer I have ever seen, from the jump from one show to 6 shows in our humble prairie city, to the affordable ticket prices, to the testimonies of those that encountered him personally, and, most of all, to his performance on that stage, he just kept giving and giving. In fact he gave so much of his 54-year old self vocally, physically, spiritually and in all other ways on that stage that in my head I couldn't stop thinking, 'How can one man do this? How will he do this again in three hours? It's impossible.' Truly, what I witnessed can only be described as a generosity that defies all reason. And it was incredible.

No doubt, that was best concert experience of my life, but to say 'I have never seen anything like it' would be a lie. Because I have. I have witnessed that kind of generosity nearly everyday of my life. A 'generosity that defies all reason'??? Sure, I've seen it over and over again. I saw it in my own mother who raised 16 children with the patience of a saint. I see it in my friend who works long hours at a grueling job to support her husband and children. I see it in my son who's energy is boundless and my daughter who is the most wonderful combination of toughness and sensitivity you can imagine. I see it in my own husband who unfailingly puts the needs of four other people before his own. I see in people who are called to impossible tasks as parents or caregivers or teachers. I see it in mothers, friends, sisters, and brothers every single day, and, if you have been a loved of mine for some time, I have seen it in you.

What was clear to me last night was that Garth Brooks has a 'gift' for performance—that is to say he was able to give and give to a crowd who he absolutely electrified with his presence. You will not hear me say this often, but the sheer volume and quality with which he gave that performance can only be described as 'divine.' But what is also clear to me is that he is in good company in his 'gifts'. Of course, we do not all have the same 'gift of performance' as the great Garth Brooks, but we do certainly all possess those 'divine gifts.' The things we give which are limitless, inexplicable, and seemingly without tire. Every time you ask yourself with genuine wonder things like 'How does Mom do it?' or 'Where does Jill find the energy?' or when you think things like, 'Jane's artistic talent—I have never seen anything like it' or 'There aren't enough hours in the day to accomplish the things Tom does'...really, what you are identifying is a person's divine gifts, generosity that defies reason. It's everywhere. Incredible.

You know, I wouldn't exactly describe myself as a country music fan though I did know a decent handful of songs last night, but my take-home from that experience has been far richer than the $80 I paid for my ticket and certainly more than what I ever bargained for from a country music concert. The buzz will inevitably wear off, I know. This kind of stuff always does, but, for today I am so thankful for an amazing concert experience and the reminder of the electrifying generosity that surrounds me everyday. Awesome.

Saturday, 4 June 2016

CFS, Acceptance, and Getting Hit by Trucks

Imagine you are going on your merry way in the metaphorical walk of life when suddenly, on a day like any other, you are hit by a truck.  KABOOM! You lay bruised, shocked, and cursing your bad luck until you feel you are able to slowly start to picking yourself up off the road, and just as you have reached your feet and dusted yourself off…KABOOM! Again. Wtf? You ask yourself. Did that really just happen? You take extra care of yourself this time, have a GOOD look for trucks before getting to your feet again, and, sure that it's clear, you gingerly start to limp along. After a while, you lose the limp, relish the feeling of your feet moving smoothly under you and, satisfied, decide to attempt picking up the pace a little. You start into a trot, and you're thinking you've left all things truck in the past, when KABOOM! F-bomb. You are kidding me. Again? Is this some kind of sick joke? Your head is spinning this time. 'Bad things happen in threes', you console yourself as you pick up the pieces one last time. But it won't be the last time. In fact, these are just the first of countless hit-and-runs that you will endure and which will eventually become the norm in your life.

Before I lose you or confuse you...let me explain that this little narrative is a simple metaphor for what it was like to live with Chronic Fatigue Syndrome in the early days. As is the story for so many others, my first collision with the 'truck' was random and sudden and appeared to be some sort of virus. My second, third, and fourth 'collisions' came in rapid succession as I tried to resume normal activity 'post-virus.' At this time, I had no name or explanation for what was happening to me so I saw a few doctors and had a few tests which confirmed that all was 'well'. We settled on the notion that my body was just taking its time recovering from a virus so I waited. I waited and waited for good health to resume. From time to time I would try to resume 'normal activity' but then the fifth truck came and mowed me down. KABOOM! Then the sixth. Then the tenth. And the fourteenth. KABOOM! KABOOM! KABOOM! And at some point, I just accepted that I was just an unlucky person who happens to get hit by trucks.

The name Chronic Fatigue Syndrome can be misleading. The word ‘chronic’ seems to imply that the disease is somehow steady or unmoving, and the word ‘fatigue’, one that any layperson can relate to, doesn’t quite cover the scope, severity or range of symptoms any sufferer might experience. It is for this reason that I choose the image of getting hit by a truck. An episode of the illness, known as a relapse, is often dramatic, begins with a discernable trigger, and is followed by a slow uncertain road to recovery. The ‘chronic’ part is not untrue—the trucks keep coming—it’s just that one learns to avoid them from time to time.

Aside from the obvious annoyance of getting hit by trucks all the time, this illness has some other not-so-awesome side-effects…
For one, there's the implications from well-meaning friends that over the years one must have gotten used to getting hit by trucks. Well, let me the record straight...the 39th time you get hit by a truck, the injuries are no less painful nor the recovery any less grueling than the first time. In fact, the repeated impacts drain your psyche as you lose hope of ever being a person who will walk the road of life without fear of imminent disaster. Which brings me to…

The paranoia... Imagine, if you will, how gingerly and strategically you might plan your moves or the paranoid thoughts that would plague your mind if you lived in perpetual fear of being hit by a truck—a paranoia that is only made worse when you start to notice patterns in your illness. You notice, for example, that the trucks will almost always get you when you happen to be out at night or perhaps when you do some gardening or have a stressful day at work. You start to fear and avoid these activities as you obsess about every little effort, weighing up the risks and wondering if this will be the one to inflict the wrath of your illness.

Then there's the sadness... As one comes to accept their fate as a person who gets hit by trucks, there is certainly a period of mourning for all the things this type of illness steals from you. For me, the most notable of these were physical exercise, the capacity to work at much of anything, and that wonderful time of day known as ‘evening.’ Though I am certainly luckier than some, I still miss the person I was (and could have been) before the trucks.

And how could I ever forget anxiety's running dialogue in my long will the recovery take this time? Will I ever work again? How will I ever X, Y, and Z if I keep getting hit by trucks all the time? Will the trucks ever just leave me alone? Will there I ever enjoy my kids like I used to? And on and on and on...

These are just some of the things that one just comes to accept in a life fated with this strange calamity, but acceptance is a funny thing…So often, it is seen to be a final step on a long psychological/spiritual journey, as if one as reached some sort of ending, but, I’ve learned that acceptance is a very active process that happens over and over again each day I wake up and still have this illness. Acceptance does not mean I will stop getting hit by trucks, just that I am less surprised when it happens and ever-willing to keep getting up.