Clumsy Bitch

clumsy bitch

i stumble

over one version or another of myself

that no longer exists.

teetering into the new year

it doesn’t matter

how i go forward

only that i do.

i forgive her, my ancestor

her actions and attitudes

that brought me here

to this place

where i need to be now.

and i can do this thing

in a new way

i leave behind

what has held me down.

from the inside out

metamorphisis guides me

angel-headed heavy-leaded

feets don’t fail me now.

i am the holder

of oddly dispassionate memories

of a past i was not allowed to feel

not even as it unrolled

and i unravelled.

i dance.  i walk.  i ride.

in new ways now

ways that can find grace

in the everyday.

everyday.

clumsy bitch

i will not be a slave

to the used to be.

i demand the freedom

to see clearly

my authentic grace.

whatever is in me

whatever is hidden

that i ought to know

whatever i resist accepting

that i deny is true

i call it out

like the bitch that it is.

i choose to see her clearly now

and to welcome her

into open arms.

to see her and hold her

without judgement

but with faith and forgiveness

without hurt to my vanity.

Because she is me.

Two Smart Girls

Two smart girls accepted for first Royal Canadian Naval Service Training STOP  Reporting Ottawa August 24 STOP Assignment for both on West Coast so keep chin up and fingers crossed STOP

Love and Kisses Amelia and Grace

Amelia’s favorite picture of herself.

In July of 1942 Alexis Amelia Alvey (pictured left)  and Grace Brodie telegraphed Amelia’s mother to share some exciting news.  After a long application procedure, the two women had finally been accepted into the Women’s Royal Canadian Naval Service (aka the “Wrens”). By the end of the year, Alvey, Brodie, and twenty-one other women from across Canada would become the Canadian Navy’s first female officers.    For the next two and a half years they would experience first-hand Canada’s involvement in WW 2.

What does this have to do with me, you ask?  Good question.

In my final year as a Simon Fraser University Undergraduate, I took a 400-level course in the History of the Family in Canada taught by the prominent  Canadian Historian, Dr. Joy Parr.  She insisted that her students write their final paper using original source documents, and I decided to use the randomly chosen collection sampled by the archivist at the University of British Columbia as he toured my class around their archives.  The Amelia Alvey Collection looked to be about women in the military, and since I was really tired of studying “the family” I decided to give it a try.

During my last semester as an undergrad, I began my work with Alex’s collected documents, 31 boxes in total.  I wrote a short 400-level paper based on my initial research suggesting that her experience of the war was far from typical – even though she donated her papers believing they had value simply because she was one of the first women in the Navy. Fair enough.

Now allow me to blow my own horn here for a moment.   That paper won an award as the best 1995-96 Undergrad History Essay, and I was encouraged to apply for a Graduate School Fellowship to continue my work with the Alvey collection.  I did so, got the fellowship and a Teaching Assistant position in the History Department, and the rest, as they say, is (tee hee) history…

So as a single mother of two teenaged girls I quit my job and went BACK to school, again, and did what I wanted to do because I loved doing it.  I SERIOUSLY loved doing it.  Teaching and learning?  It doesn’t get any better than that, does it?  Oh no wait, it does.  Add writing.  I got to write a thesis, of which I am still proud.  I refer you to number 6 on the “About The Author” page of this Blog.

And it turned out Alvey was imbedding much more than just information about her wartime experiences in her papers.  Whether or not she consciously intended to do so, she was telling a secret story about what it was like to be a closeted lesbian in  the 30’s, 40’s and 50’s.  At least, that’s what I saw when I read her documents.

It wasn’t hard to see really, or at least, it wasn’t hard for ME to see, bringing to the collection my particular sensibilities and late 20th century life experience.  As I read this note below, addressed to any “future researcher” who may read the  copies of her letters to her life partner Grace Brody:

It is no secret that Grace and I shared an apartment home for a few months before joining up and it was our mutual hope to return to same after the war…So, just in case I never get to use these letters as source material and they should wind up in the possession of some research-writer I have de-personalized references (as well as a few comments about certain personalities that might prove embarrassing) by blocking or cutting them out.  

Amelia and Grace on leave

It’s not my intention to tell you the whole story here, but suffice to say it did not turn out as well for Ms. Alvey as it did for me.  As you can see from her picture, she was not the most feminine of women (the term “butch” was yet to come into wide use) so once in uniform she was seen by the powers that be (read “patriarchy”) to be a real threat to wartime femininity.  Although a good officer, she was eventually forced out of the Navy while her more “femme” partner Grace was able to serve until the end of the war.  I, on the other hand, was able to use her historical sensibilities to earn a Master’s Degree in history, writing a thesis ( with Dr. Parr as my supervisor) some called “ground-breaking”, arguing that individuals like Alvey are able to insert themselves into the historical narrative in new and sometimes surprising ways.  All it takes is a single mother with an open mind, an endless curiosity, and an ability to tell a good story.

In the end, we’re very different women, she and I, but it is only recently that I have come to understand some very basic similarities.  She knew she had a story to tell, and now I know that I do too.  She believed her story had value because of the historical times she was living in, and now I have come to believe my story has value simply because….well…..simply because.  Perhaps its ultimate value remains to be uncovered by me in the telling, or by my readers in the reading, but I intend to start the process now.

One difference worth mentioning.  Where Alvey was a collector of effluvia and minutia, I am a devout purger and de-clutterer, preferring  not to hoard but to live small.  So if I am to dig deep to uncover my own story, it will be into the deeper recesses of my memory, to tell the stories that I believe make up my identity or that have truths worth sharing.  Like Alvey, I want to share slices of my life that have value,  that have worth, stories that show what it means to me to be a girl, a woman… stories that – to use  Grace Brodie’s words – “portray in picture and in word the progress of  your triumphs: That those whose privilege it is to see may know – and knowing say – This is a woman!”

Staring at the blank screen…

Cuz  I guess ultimately that’s what I learned in Grad school…that everyone, even me, has a story to tell.  Stay tuned…

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Life of Pee

So close, and yet so far away…

Too much information?  Then let this serve as a spoiler alert.  I really couldn’t let this borrowed pun (many thanks to the  Active MSer’s website) go to waste at the risk of offending your delicate sensitivities.  So here goes….we’re gonna talk about pee.

Some of my biggest struggles with MS to date have been with bladder control…that is, the almost ever present feeling of the need to run off and find the nearest bathroom combined with a crazy-making inability to go. Those of you who have spent even a little bit of time with me out in public know that I have an uncanny ability to either a) know exactly where the closest public  bathroom is or b) find one and waltz right in like I own the place and use it whether I am a customer of the joint or not.  And yes, it can be scary driving with me when I am intent on getting to a bathroom.  Sorry.

I wasn’t born a pushy broad – oh no wait – I was – well anyway, thank goodness for that because this most common symptom of Multiple Sclerosis is sometimes the earliest to present itself, and for me, that was certainly true.  I have been barging into coffee shop and book store toilets around the world for years, and there is hardly an alley I will not crouch down in.  Hell, I even stuck my butt out behind the driver’s side door while stuck in traffic on the 401 freeway while the driver behind me looked away in amazement.  Cuz really people, MS or not, when ya gotta go, ya gotta go.

Before I was finally diagnosed with MS, my primary practitioner sent me to a urologist/gynecologist for a bladder function test and an ultra-sound to make sure everything was alright in there.  I came away with a prescription to control the symptoms (I tried them before – nasty side effects) and a diagnosis of “over-active bladder”.  Well, no-shit, Sherlock   This symptom went unconnected to the double vision and mobility problems I was also reporting….hmmm.

There are a lot of ways that the interrupted neurological pathways resulting from MS can show themselves when it comes to control and hesitancy, and although I like to make light of it, some days (and nights) they are no laughing matter.  Like all my MS symptoms, the more tired I am, the more they manifest themselves.  So ironically, the more sleep I get, the more sleep I will get. ( that will make more sense if you read all the way to the bottom, I promise).

So here are the things  worry about every time I go out the door:

•  How often am I gonna have to run to the bathroom, and how full is my bladder really going to be?  I usually stop ingesting any fluid at least 2 hours before I go out anywhere, which makes it really hard to stay properly hydrated.  And try as I might to empty before I go (“did you kids go to the bathroom???”) it’s a pretty safe bet that I will still need to find a bathroom STAT almost immediately upon leaving, often leading to…

• Not being able to hold it. MSers like me live with a nervous system in which nerve signals  sent to the body parts that control urine movement sometimes allows urine to come out involuntarily.  First time this happened to me I didn’t even know until my nice new boots were full…

• I’m soooo thirsty – I also stop drinking water or anything else about 3 hours before bedtime (which is very early for me these days) because on bad nights I wake up as many as 3 or 4 times  during the night to go to the bathroom (this is called Nocturia, in case you want to throw that concept around at the next party you go to). For me this is because of lesions on my brain caused by MS that interrupt the impulses that travel up and down the spine to coordinate urination.

• And if that weren’t bad enough, sometimes I get up in the middle of the night cuz of that itchy scratchy feeling that says I have to, and then…nothing there….how frustrating is that.  Same problem. Same reason.  And same problem that gets me up again 2 minutes later to actually go. Doesn’t really make for a good night’s sleep.  Hence the irony.

So when I go to the movies (loved Life of Pi, by the way) that handicapped parking pass I have benefits all of us in more ways than you might have imagined.  If I don’t wear myself out walking from the back of beyond, and  pass on the giant sized sugar water, I won’t be the one pushing past you halfway through the movie (maybe even twice) to find the loo…

Control panel for South Korean toilet in my school. Took awhile to figure out, but well worth the time. Kind of like an automated car wash for your bottom…

The Long and Winding Road

If you’ve read my previous blog, Chapter and Verse, you might recognize this picture.  It is a path in a public park in Daegu, South Korea where I spent 6 months in 2010 teaching English. It was a very rocky road indeed, and I saw may Koreans (mostly seniors) walking the entire distance in their SOCK FEET!  I tried it  myself, and could barely make it a few meters before I had to hop off and put my shoes back on.  I understand now its potential benefits more clearly, as I have had physiotherapists recommending to me that I roll the bottoms of my feet with hard rubber balls while watching TV or reading  to stimulate dying nerve endings…but at the time I thought this wicked path was nuts!!  Little did I know…

I see it now not only as foreshadowing of a much-needed therapeutic technique, but also as a metaphor for the long and sometimes uphill battle to get diagnosed with the chronic, incurable, but ultimately treatable illness that is Multiple Sclerosis.  The kicker is that the sooner it is diagnosed the better the outcome, and personally,  I have learned that lesson the hard way.

If you’ve guessed by now that this could be a long story you’d be right, but I will do my best to keep it short.  The question I have to ask myself is where to begin?  With the MS Diagnosis? With the brain tumour and craniotomy?   The struggle to get to a neurologist at all?  The lapse of 17 years while my disease worsened and nothing was done? With my ever-weakening foot-stomping at my primary practitioner’s office for treatment, while shouting “I’m too young to feel this old! Do something!”

That was the short version.  Let me fill in a few blanks.

Those who know me know that I have been a very active person since my children were born- a fitness coach and instructor – a hiker and mountain biker – and most recently a runner.  I continued to do all of these things as I suffered and reported most of my MS-like symptoms, and in fact, I think my active lifestyle may have kept more serious relapses at bay – who knows.  Anyhoooo…..it’s only recently as these various symptoms increased and collided that I have been forced to slow down almost literally to a crawl.

So.  Back to the beginning.  I’d been complaining about double vision for at least 15 years, maybe longer. I still don’t see double all the time, and except for one bad 6-week period recently, it’s really only when I’m tired.  That can be when I’m up past my bedtime, or have walked too far – any kind of tired will do.  At the time my GP referred me to an opthamologist, but all that resulted in was a suggestion that I get new glasses. Hindsight being 20/20 and all, it’s easy to see this now as a classic symptom of MS which, as a disease of the central nervous system, causes damage to the brain, spinal cord AND optic nerve.  Because mine has gone untreated for so long, it is pretty much permanent.

Other symptoms have come and gone along the way, things that now seem so obviously signs of MS…like mysterious falls (I mean collapsing in a heap on the ground after a run – weak ankle, I used to say), and strange tingling and numbness in my hands and feet.  The one symptom that kept me coming back to my GP for answers, though, and continues to be my most debilitating symptom, is an inability to walk for longer than about 20 minutes without my right leg getting “goofy” and becoming untrustworthy, feeling like it was gonna give way underneath me.  After 20 minutes I have to quit what I am doing and sit down, and it can take up to an hour to recover.  And let’s just say I make it my business to know where all the restrooms are along any route I choose anytime I go anywhere…’nuff said.

After one particularly bad walk in the woods with my kids, I determined that I would go into my doc’s office the next day and not leave without some answers.  I had already had hip x-rays to rule out damage from running, and chiropractic and physiotherapy treatment to strengthen various joints and muscles, but nothing had worked.  When I got to my doctor’s office she had a locum replacement in, and that doctor agreed right away that “something was not right” and determined that a referral to a neurologist was in order.

Loooong story short….17 years after first symptoms started emerging, I was diagnosed by 2 different Neurologists, after 2 different MRIs and a variety of goofy neurological tests (can you stand on your toes? nope. can you stand on one foot? nope. can you follow my finger with your eyes? nope.)  as having Secondary Progressive Multiple Sclerosis.  The MRIs showed the lesions and scarring (sclerosis) on my brain typical of the disease, and the Neurologists were able to put two and two together, along with my long list of neurological symptoms, to confirm the diagnosis. Great.

Kind of a crappy diagnosis, given that there is no cure, and it is a potentially debilitating disease ending in immobility…but you know, the answer was ultimately vindicating.  I was NOT crazy.  I was NOT lazy.  I was NOT just too old or too fat to work out.  It was NOT my fault.  Not gonna get better, but hey, you can’t have everything.

There are things to be angry about, for sure.  At first, I was furious with my GP.  A lovely woman, with whom I had been  for all of those 17 years, quick to prescribe and refer, and much too ready to listen to my self-blaming self-diagnosis of various symptoms and therefore to send me home without answers.  MS is notoriously hard to diagnose, I know that now, and GPs are not really educated in its subtleties, but I still think she could have heard me speak about some of the classic symptoms with a bit more knowing. If I had known I had MS even 5 or 6 years earlier, not only could its progress have been slowed, but I would not have quit the job with the Long Term Disability Plan.  Now I have a none, and a very uncertain future because of that.

So where am I with all this?  Working seems to be out of the question for now…the fatigue of even a few hours at a job incapacitates me in almost every way possible (vision, balance, incontinence, mobility, cognitive) and each of those symptoms are my constant companions most days.  Even if I get the best sleep possible, I wake up most days feeling hung over.

I also face each day knowing that my task now is to make lemonade.  It’s gonna be tough, that’s for sure, but I have been in lots of tough situations.  It’s almost as if MS is finally making me take care of myself in ways I have always refused to do up until now. I won’t survive otherwise.

For example…did I mention the MRIs also found a brain tumour? One week after I learned that I had MS, my gp called me to say the MRIs had also revealed a benign tumour the size of a golf ball ON not IN (important distinction) my brain, and that it should come out ASAP.  So on October 18th of 2012 I had brain surgery to remove it.  As I said in a previous post, don’t worry.  Don’t panic.  With the help of family and friends I got through that fine….and am now settling in to living with Multiple Sclerosis.  Recovery from surgery delayed that process a bit…but I am here, now.  With you.

A great tell-all Slideshow about Multiple Sclerosis causes, symptoms, and signs.

MS Nancy Speaks Up

MS magazine’s first cover!

Ever since the day I gleefully grabbed the maiden issue of MS magazine off of the racks of my local small town newsstand (sorry I’m not gonna say how long ago that was…YOU do the research) I have been proudly using the Ms. prefix  in front of my name.  I have fought for the right to do so over the years, in many contexts and in many situations, until that battle was won by all of us until now most forms give women the option of NOT telling the world their marital status by choosing to be known as Miss or Mrs.

But since a diagnosis of Multiple Sclerosis in September 2012, I have not been quite so gleeful about attaching that acronym to my identity.  I have mostly kept my emerging health issues on the down low, not wanting to become just a diagnosis or object of sympathy, or to be disqualified from work, or play, or friendships in which I am more than capable of participating and excelling.

But here’s the thing.  I am still the same old person I have always been, and that person has always been very open and honest, often to a fault.  Although counselled by many to keep my MS status to myself, and to let only those closest to me know about what’s going on, I am, as usual, finding it very difficult to keep quiet about  issues and experiences crucially important to me.  Because learning to live with this disease is causing me to re-think, and therefore to re-weave the very fabric of my being.  How can I possibly keep the resulting fabric of my life in a deep, dark closet?  I can’t.

So what about this MS thing,  this newest strand in what has already been a highly textured and fascinating life?  When I   decide to tell a trusted confidante,they sometimes ask, after exclaiming “but you look so good!”,  or after looking really shocked and sorry, even tearful, envisioning for me a life immediately declining into disability and paralysis…what exactly is Multiple Sclerosis?

Don’t panic, I say.  Don’t worry.  We’ll get through this together.  Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.  That’s certainly my intention…although some days I am more convinced of that than others.

I tell them that ironically MS affects 3 times more women than men…all us Ms.ers are way more likely to develop the disease than the Misters.  I tell them that it’s an auto-immune disease of the central nervous system, wherein the  immune system attacks the central nervous system (brain, spinal cord, and optic nerves).   As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

MS symptoms can be so mysterious, and vary so widely from person to person and from day to day that it’s really hard to describe to anyone who doesn’t have the disease.  And the reason I can manage to “look so good” is that for most of us, it’s largely an invisible disease.

But here’s a little visualization to try on for size:

*Close your eyes and imagine that your boss has sent you at short notice on an international business trip to somewhere really far away…let’s say to South Korea for resonance with my recent experience …  and you have about an hour to rush home, pack carry-on luggage only, change into uncomfortable business class clothes, and rush to the airport.  You struggle alone out of the cab  with your too-heavy luggage and coat, and rush to the ticketing agent and then find your gate.  They didn’t have room for you in business class after all, so you are squished in next to a large gentleman in coach, who wants to talk to you for the whole ten hour flight when all you want to do is sleep.  Every time you need to pee (which is every hour or so – and sometimes it’s a false alarm) you have to push your way past him to stand in line to wait anxiously for your turn at the bathroom.  After 10 long hours of interrupted sleep you deplane with swollen clumsy feet and luggage and a coat that have somehow gotten even heavier.  You can’t read any of the signs, you can’t find your passport in your purse, and you don’t recognize anyone or anything in the airport.  You have to find the bathroom, again, and you’re so tired you want to cry.

THAT”S what it’s like for me to have MS every single day…and believe me, that’s a good day.  (We can talk about the bad days later.)

I can avoid being laid completely low by taking really good care of myself, which means getting as much sleep as I can every night (easier said than done, given MS nocturia) and by leaving behind my A-type personality disorder behaviors that led me to believe I could go to a high stress job, single-parent two girls, study for a graduate degree, work part-time, have a social and health and fitness and love life….and wash the car… all in one day.

Now, I have to remember the “one thing” rule – I can commit to doing one thing per day.  This is an almost impossible rule for me to follow, (especially since significant others in my life expect me to be my old over-functioning self) and that almost always leaves me limping dizzily down the street overloaded with groceries that I carry myself up three flights of stairs to collapse into bed, unable to get up until the next morning.  Not smart.  And it takes me days to recover.

Okay, so…I’m just starting this journey, and this blog, and I promise you that it will be about much more than Multiple Sclerosis – just like I am about so much more.   For now, though, it’s where I will start because its a big part of what I need to think about and process right now.  And like I said above, I am open, and I process best by sharing.

I am especially interested in the mind-body connection, exploring how to live a congruent, balanced life, and how to attract the love and prosperity I deserve.  And I am sure there will be a few good stories along the way – real fables with imagined morality, perhaps, but good stories, nevertheless.  And don’t worry.  Names will be changed to protect the innocent.

* This visualization came easily to me because I have actually been through this real experience myself, years before my diagnosis.  I had MS at the time, but didn’t know it.  Sure did feel like it after that flight though.  You can read about that on another blog, Chapter and Verse.