Chronic Fatigue Syndrome--Worst. Name. Ever

Imagine the following conversation...

Jerry: Heard you weren't feeling well lately.?

Me: You could say that.

Jerry: So you're just tired all the time?

Me: Yeah, and a few other things...

Jerry: Girl, I hear ya. When I got back from Hawaii in January, it took me a week to turn around and then I made the mistake of going on a bender the weekend after. You know how that goes, and then last week I ended up with a flu and it feels like it's been a month since I felt normal, you know?

Me: I can relate to that.

Jerry: I remember last year there was like this 3 week period where I couldn't sleep past 5 AM.  Man, I was SO BAGGED at work. You don't even know...

Me: Yeah, that sucks, but it's a bit different.

Jerry: How so?

Me: Dude, I have Chronic Fatigue Syndrome.

Jerry: You know, I wondered if I had that and then I had some bloodwork and turned out my hemo-something was low. Took some iron and I was good as new! Have you ever had your blood tested?

Me: Yes.

Jerry: Hmmm. I hear lots of people have luck with acupuncture for fatigue. I've never tried but I keep meaning to. Why don't you try that?

Me: I'll keep that in mind.

Jerry: You're not like (whispering) depressed or something?

Me: (Forehead slap)

Let's clear the air about a few things here... For one thing, I love Jerry. He's a kind and well-meaning friend, and I'm not being ironic. For another, I am not running down depression or any other mental illness as a diagnosis. And lastly, as irritating as it may be, I TOTALLY understand why conversations like this are inevitable... and do you know what it is? It's the DAMN NAME—Chronic Fatigue Syndrome. Worst. Name. Ever.

Why? Because upon hearing these words, everyone and their dog feels compelled to:

a. Commiserate with their stories of tiredness—I get it, and I'm not belittling anyone's experience. It's true we have ALL been tired at times, some extremely so and some for long periods of time. It sucks. I understand. I guess why I find this slightly irritating is that Jerry's friend, Bill, with lung cancer would never have to endure a lengthy commiseration about Jerry's going cough. He wouldn't dream of it, because it's not the same thing. I can only blame the illness' name for Jerry's lapse in judgement here, and he probably would do the same to Bill if lung cancer was called 'chronic coughing syndrome.'

b. Offer an alternative diagnosis—everyone with a smartphone is a doctor these days! Maybe you're pregnant? Have you ever thought you might have MS? Lupus? Lyme disease? Thyroid disorder? Iron deficiency? I've heard them all. I can only assume that Jerry and other friends do this because the name CFS is somehow not convincing or weighty enough for the multi-faceted illness that it is.

c. Offer medical advice—I'm sure offering unsolicited medical advice is not limited to CFS. The reason this irritates me slightly is that after 4 years of living with this illness, does Jerry really think I have never had a blood test? Or considered an alternative treatment? Or given any thought to what might be causing this? Does he REALLY think he has a better idea about managing CFS than I do? I'm being too hard on the guy... He probably wouldn't be so inclined to offer advice if the illness was more frequently referred to Systemic Extertional Intolerance Disease (it is).

d. Make awkward references to mental illness—Jerry is a good guy, but sometimes I'm not sure what century he lives in... 'Whisper, whisper, depression. Ahem, anxiety. Ppppsst, anti-depressants. Have you ever thought about talking to a counsellor? No one has to know.' For Jerry and anyone else out there, I'm just going to put this out there loud and clear...I do not suffer with depression. I have experienced anxiety unrelated to CFS. It sucks BIG TIME. I have talked to counselor who I would see more frequently if I had unlimited time, funds, and babysitters, and there are no commonly prescribed meds for CFS. Oh, and the words 'depression, anxiety, anti-depressant, counsellor,' are not swears and they do not need to whispered for any reason. ALL CLEAR?

For the record, there are a number of alternative names for Chronic Fatigue Syndrome that I occasionally offer as an alternative, but, to be honest, Myalgic Encephalomyelitis is REALLY hard to say and confuses people. As for Systemic Extertional Intolerance Disease, well, it's neither catchy nor memorable nor currently accepted as a clinical diagnosis in this country, and conversations where I do offer these names inevitably go down something like this...

Me: Myalgic Encephalomyelitis.

Jerry: Huh?

Me: Myalgic Encephalomyelitis.

Jerry: The who said the what now?

Me: MY-AL-GIC. ENCEPH...

Jerry: I thought you had Chronic Fatigue Syndrome!

Me: (Forehead slap. Cue annoying conversation)

Science Shamers--It's time to Take it Down a Notch

The scientific method is not perfect. Any good scientist will tell you that. It's subject to flawed methods, imperfect experiments, societal pressures, at times it sells itself to the highest bidder, and it is planned and executed by fallible humans on dynamic situations—just like everything else. It is for these reasons, and for many others that I haven't touched on, that I respectfully ask the science-shamers (that is, those who use science to shame others) of this generation to take it down a notch.

Science-shamers? You know who you are.

You litter my newsfeed with things like, “The good thing about science is that it's true whether you believe it or not.” You are the mommy-gangs that constantly deride the 'anti-vaxxers' (oooo…two X's!) with facts and studies in support of your position.  You are the jerk who during a conversation last week laughed in the face of a woman who said she thought the whole 'carbon-thing' was a bit of a cash-grab. You make no pretenses about shaming those who access 'alternative' health-care services. You roll your eyes at anyone whose ideas or practices appear to contradict the going scientific trend. Need I go on?

Before I go any further, let me set the record straight…I am a self-professed 'science-person.' It is my university major, my kids are vaccinated, I believe in evolution, I utilize the best of modern medicine. I think what science has done for mankind in terms of quality of life is nothing short of miraculous. I am not anti-science, and I believe that it is a fine, even exceptional, tool for humanity. Science is what we use to make our best guess at any point in time, but I think it is important to remember that our 'best guess' today is not what it was 50 years ago nor is it what will be 50 years from now. To give you an example, consider the evolution of health care, specifically child-birthing practices, since the 1970's... If you're a thirty-something woman like myself, your birthing experiences were probably quite different from your mother's, and I'm going to go out on a limb and say that your experiences will probably be very different from those your daughter will have. Science probably had a lot to do with that. In the area of health care specifically, science uses information to inform best-practice as it always has, but science is not complete. ‘Best-practices’ in health care are not fact in themselves. They are merely guesses based on the pieces of fact we currently have at our disposal and they will continue to change. Perhaps that is something the science-shamers among us need to keep in mind. 

When I say science is not complete, I say that for a few reasons…One is that the inherent nature of the scientific method is to study variables in isolation. Of course this has its purposes, but as we know, NOTHING on this planet happens in isolation. Every tidbit of discoverable scientific fact is just a piece of a much larger picture. I do not think it is uncommon for the public or even prominent members of the scientific community to draw incorrect or overly broad conclusions based on a scientific study or two. Remember in the 1980's when cholesterol was the metaphorical anti-christ? There were some convincing studies linking blood cholesterol to heart disease, and suddenly everyone and their dog stopped eating eggs and minded their cholesterol and the food industry jumped on the opportunity to sell low-cholesterol-this and no-cholesterol-that. Of course science has gone on to create a more complete picture of the function of cholesterol in our diets and bodies, and, of course, everyone's eating eggs again, but the lesson for science-shamers here is: 

blood cholesterol linked to heart disease ≠ eggs are bad for you

I can just imagine the science-shamers of the 1980's in their acid-wash jeans citing all kinds of evidence to their egg-eating friends about what a poor dietary choice they were making.

Perhaps this type of shaming is not unlike those who recently turned their noses up at me when I opted not to take a course of antibiotics for a throat infection. (Antibiotics! Ha! If there is a better example of science being incomplete, I can't think of one!)

Finally, science is incomplete for another reason. Mockers, mock if you may. Haters, hate if you will, but in the words of Shakespeare, 'There are more things on heaven and earth than are dreamt of in your philosophy.' There are countless items which have yet to be studied, whether that be because science hasn't gotten to them yet or because there are matters in this universe that are simply un-study-able. There are factors that we may never be able to observe through the scientific method--love, hope, reason, and spirit, to name a few—if these un-quantifiable forces don't have an impact on the physical, then I am a monkey's uncle! There are forces at play in this universe yet undiscovered and perhaps never measurable…even a scientist will tell you that.

Science-shamers, I get it. Sometimes the actions and choices of others are utterly baffling. They may counter your instincts, challenge your sense of reason and everything you think science has ever told you. I have certainly been among your ranks from time to time, but please, the next time someone’s ideas offend yours sense of scientific decency, consider that they may not be denying the facts. They may simply have used them to reach a different conclusion, or perhaps they are accessing a different set of facts entirely. Who knows? Or maybe, just maybe, they have not based their ideas on science at all (gasp!) They are allowed to that.

Dad--Man, Myth, and Legend...

With Dad's 80^th birthday this year, I knew I wanted to write a tribute of some sort for him, so I made a simple prayer asking God to send me the words. As many of you will know, I have spent a lot of time writing the last few years, and as has often been the case many times in the past, God delivered the words… but for this occasion, he gave me just three—Man, Myth, and Legend.

Dad—The Man

I would like to tell you a little bit about Dad who was born the fifth child in large homesteading family in 1936. I would like to tell you that, as a boy, he was the same mischievous, hard-working person we know him to be today, but, let's face it, I have no idea because that stuff all happened before I was born. And, I'm sure any of his siblings would more equipped to provide information of that sort, So I’ll leave that to them.

Anyway, as Dad is fond of saying, “Your parents don't raise you, your kids do.” so, instead, I'll tell you a little bit about “The Man” I had a hand in raising. And Dad, “The Man” I have known for the last 35 years, I can only think to sum up in three simple values…

1. Hard work – I remember going for a run one day down correction line road, as I did many times. Dad was already living in town by this point, and I see the old Brown Ford dusting down the road, and I know I'm in trouble. Now some parents, other parents, might have been proud to see their daughter taking an interest in her health, getting out for some fresh air and exercise, but not MY Dad. The truck pulls up, “Get in,” he says, “there's strawberries that need picking.”

Anyone who has known Dad for longer than 10 minutes can attest to his tireless work ethic, if that's what one calls 80 years of devotion and long hours of farming, gardening, fixing, finishing, building, and raising a family, community, church, and so on.

Well, to this day, Dad has not actually succeeded in thwarting mine or any of his kid’s obsessions with physical exercise, but as I've grown older, I have really come to appreciate Dad's dedication to hard work. Which brings me to the second value that Dad, the 'Man' embodies...and that is

2. Generosity – All of Dad's hard work is not for naught. The fruits of 80 years worth of labour are rich and plentiful. You may ask what one does with such abundance… Well, they share it of course! Whether you’re his daughter receiving a trunk full of produce, or the Friendship Inn intaking enough garden potatoes to feed a small army, or whether you are the church basket or the new guy in town, or a stranger needing a hand with some household task, or a community member or one of the many others that I suspect no one will ever know about, we have all been on the receiving end of Dad's generousity and selflessness—A truly 'divine' quality.

3. Faith – What does my humble Dad or any of us for that matter know of faith? Well, have 16 children who you intend to raise on a farming income, and you will know faith--Faith in God's providence, Faith in the goodness of family and love, And Faith in sacrificing for others. I think I speak for all of Dad's children when I say that the gift of faith in a God that loves his children through anything this life has to throw at us and no matter where we roam or stray is the greatest gift anyone of us could hope to receive.

Dad- The Myth

Well, if you’ve lived 80 years and there isn’t a myth or two circulating about you, you’re probably doing something wrong, so I’m here to dispel a few.

Myth: With all those kids and a big farm to run, Dad didn’t have time for much else.

Fact: This is simply not true, and if you don’t believe me, just ask the Knights of Columbus, the Pro-Life Association, the local priest, or any newcomer to town if Dad doesn’t have time…

Myth: Dad was once caught throwing out a piece of rotting fruit at the Eastgate mall

Fact: The local Co-op stocks ‘cooking bananas’ just for Dad and in his 80 years not a single piece of fruit, ripe or otherwise, has gone to waste under his vigilant watch. Just as a side story, I remember walking in front of Grandma’s one day, and stepping over a little package or saran wrapped watermelon, complete with ants and such. Later, I was at Dad’s and he brings out a little plate of watermelon which I am eagerly tucking into, when he says, “Do you know where I got that?”

Myth: Years of hard-work, farming struggles, and difficult trials have left Dad a hardened man--stoic, and with opinions that are stuck in stone.

Fact: Dad unfailingly treats anyone he meets with kindness and compassion. When new people come into his life, Dad embodies the most true and pure definition of ‘acceptance’ I have ever witnessed—acceptance of different faiths, different nationalities, different walks of life, and different values. For me personally, this is one his most unique and proudest characteristics.

Dad—The Legend

Dad is a legend for two reasons:

1. I’ve never met anyone like him – The world over, I’ve truly never met anyone like my Dad. Dad does not wait for good to happen. He doesn’t cast his vote and wait for politics to achieve some distant goal. He doesn’t utter things like, “Someone needs to cut those ditches,” and then wait for Ted Gartner to do it. I’ll bet the shirt on my back that he isn’t active in ‘awareness’ campaigns or frequenting benefit banquets for newcomers to Canada. No. The banquet is in his home, THEIR home, literally. If he is ‘aware’ of some problem, some good that needs doing, Dad does it himself. He cuts the ditches, he and Rita grow food, prepare it, and share it on a near daily basis. He changes the church light bulb himself, addresses the golf-course litter problem personally, and he lends his tools, his time, even his cars without blinking an eye, even when those items occasionally return from, say, Edmonton a little worse for wear. It may seem a simple quality, but can you imagine how different the world would be if more people approached things this way?
2. He is an inspiration – For all the reasons I’ve talked about—generousity, hard-work, faithfulness, compassion, acceptance, and for any other reasons anyone else has in their hearts, I’m sure we can all agree Dad has inspired each of us in our own ways. I see little pieces of you, Dad, in all of us. Like Jesus, you are and will be a gift that keeps giving. Happy birthday and more to come.