Life Lessons

To be strong and agile, flexible and free has been a driving force within me since I was a little kid.  I always felt pure joy when stretching my limbs to climb a tree, skipping nimbly from stone to stone in a stream, swimming against the powerful current of a torrent, pushing my muscles to their limits in a strenuous workout or letting them flow freely with the rhythms of music. 

So when my body started to falter almost a decade ago and it finally dawned on me two years later that it was not because I was simply out of shape, I sought the advice of a sports medicine specialist.  And since that day, my life’s path has swerved dramatically.

Seven neurologists, three muscle biopsies, and numerous blood tests later (for PROMM, FSHD, FKRP, AMD, BMD, LGMD 2B and 2A…the list goes on), and we still don’t know what exactly is causing the progressive weakening of my muscles.

When people find out that years later I still don’t have a specific diagnosis, they often jump to the conclusion that it must be terribly frustrating for me.  But it isn’t.  None of the conditions I mentioned above can be conventionally treated.  And even if I believe that anything can be cured (no matter what the doctors say), it’s a lot easier to nurture my hopes of healing when I remain afflicted with an ailment that is unidentified, with no bleak case histories or a discouraging prognosis to read about.

Instead of getting frustrated, I’ve come up with my own reassuring and uplifting theories to explain what’s happening:

1. I’ve been a worrywart for a big part of my life and as a result I’ve attracted a worrying condition (based on the law of attraction as discussed in many books including The Secret and the Abraham-Hicks series.)  Now that I’ve stopped worrying so much, I’ll smooth-sail my way through life.
2. Just like the hot/cold game (as you get closer to the target it gets hotter), I was getting a little far from my life’s purpose, and this condition has put me back on track.  As I get closer, wellbeing is starting to flow again.  (So I won’t be a great salsa dancer, but maybe life has something else in store for me.)
3. I chose to come into this life under this set of circumstances because there were lessons to learn with this particular challenge, and also because the people close to me would benefit from my experiences. 

And the positive lessons have been plentiful:

• Don’t worry, be happy.  Really!
• Don’t worry about what others think, just be. (A tough one for me – still working on not feeling self-conscious about my awkward body, and getting better at it every day!)
• By acting consciously (and not reacting impulsively or automatically) to a situation, we have the ability to bring about desirable outcomes.  (One I’ve needed a lot of practice with.  Maybe that’s why I was thrown into the teaching profession.)
• Be open to the advice and opinions of others, but ultimately make up your own mind about things.  (So doctors, I appreciate your thoughts, but one day you just might be stunned when I waltz into your office, all strong and stable, and perfectly healed!  And Mr T., you’re a very kind person, but I really don’t think what you preach is the only way…there are many ways to enlightenment and healing.) 
• Focus on the good stuff, and more good stuff will come your way.  (Enjoying the sunny drive to a meeting the other day despite being late and slowed down by traffic paid off – the person leading the meeting was even later!)
• Be grateful for all the wonderful things in this life.  (And I have so much to be grateful for—a loving family, supportive friends, a cozy home, a rewarding job, a peaceful country, friendly people wherever I go, safe falls, and the root of my front tooth has grown back!! )
• It’s ok to ask strangers for help and it’s even better if you can offer help to someone else.  (Thanks to all those people who have been kind enough to hold doors open for me or lend me their arm, or pick up my fallen keys!  I look forward to the day when I can return the favour.)
• A down moment is just that – a short moment in time.  (I still get them, but they always pass.)
• A seemingly negative circumstance might actually prove to be a positive one in the future.  (When I was running a little late the other day, I met the kindest and cutest old man.  I wouldn’t have met him had my morning routine gone smoothly and had I entered the elevator a little earlier.  And it’s a good thing we crossed paths, because that very day, a yellow pipe on the ground between my building and my car was creating a bit of an obstacle, and here was this jovial man, eager and happy to help!)
• A negative situation can be turned around.  (I was alone at home when I fell not too long ago, and I broke a blue bowl in the process…it was scary and emotional, but in the end, I got a great workout trying to get myself up!  I also appreciated the opportunity to sit on the floor, which I rarely have the chance to do these days.  And the shards of blue glass scattered on the reddish planks were quite lovely to look at.  After struggling for almost an hour, I wasn’t able to get myself up; but I did manage to call my good friend K. who came to help me.  The evening started with panic and tears, but it ended with good conversation, hearty laughs, and apple pie.)
• Having faith that everything will be just fine and wonderful leads to everything being just fine and wonderful.  (When I really feel this, things do magically work out.)

Pretty obvious lessons, I know.  But it’s applying them day after day, challenge after challenge, mishap after mishap that has been the true test.  I’ve made some progress, but I have a long way to go too!

Do you have any life lessons to share?

Overcoming Fear

On Monday, I drove to the hospital for three appointments.  I had purposely lined them up back-to-back so I would only have to take one day off work, but also because it isn’t always easy finding someone who can accompany me.  Since November, I rarely go anywhere alone.  My body seems to go in panic mode—all wobbly and shaky—when I’m walking without the support of a wall nearby or someone’s arm.  I can’t even cross the hallway’s short distance at work anymore. 

I can’t recall the exact moment when I lost my independence.  It might have been caused by an embarrassing fall in the elevator or back-to-school stress quickening the degeneration of my muscles.  I remember one morning last autumn, I was walking in the hallway of my building, gripping my cane with one hand and my other hand sliding along the wall for extra balance, when I came upon a newspaper strewn outside my neighbour’s door.  My body started shaking, my lungs clenched, and tears streamed down my face.  I simply could not separate myself from the wall and walk around the newspaper.  I turned back to the safety of my apartment, hyperventilating and stricken with fear. I called my colleague E..  Between sobs, I asked if she could pick me up on her way to work, and she did.  Another time, maybe a few days earlier, I was walking in the underground parking garage when I froze.  I couldn’t take another step forward.  When I tried to move my leg, I was overcome with dizziness and worried that if I budged an inch, I would crumble to the ground.  I waited for someone to walk by, swallowed my pride and asked a stranger if he could walk me to my car.  And he did.  (Thank you so much E. and Mr. Stranger!!)

It was a period of angst and panic.  I call it my autumn crisis.  The only place I felt safe was in my apartment.  But I have since regained peace and serenity.  Not because my muscles have gotten any stronger or because I have regained confidence, but because I have found ways to cope.  I now push a little shopping cart to get from my apartment to my car.  It’s hardly stable, but it adds that extra bit of security I need.  At work, H. and S. are usually waiting near my parking spot, smiling and ready to help me with my bags and lend me an arm as I walk to my classroom.  I am so grateful to these two young ladies.  Seeing them every morning brightens my day!  And in the school, my colleagues and students are always so helpful and willing to lend a hand.  I’ve been given a laptop and overhead projector so I don’t have to stand to use the chalkboard, and I can roll my office chair to get around my classroom.  Unless I’m with someone, the only places I go are to work and back home.  I avoid unsafe situations. 

It’s all working out and I’m reasonably happy, and yet it seems like a band-aid solution…  a quick fix that’s not addressing the problem.  Some people think I would be safer and more independent in a wheelchair.  But it seems to me I just need to get over this fear.  I still have some strength left in my muscles and really should use them as long as I can.  Why is it that I can walk fairly well beside a wall or when barely holding on to someone’s arm?  But if I find myself alone in an open space, when I have to cross the hallway at work, my muscles lose their coordination and strength.  It seems more like a mind problem than something caused by muscular dystrophy. 

So it was a great relief when two months ago, my neurologist referred me to a psychiatrist, one who had extensive experience helping people with neuromuscular problems.  And that was my highly anticipated appointment on Monday, the third appointment of the day.

I was not disappointed.  He was positive and encouraging.  His advice was simple; something I should have known.  Yet, it’s always more motivating when somebody with experience in these situations tells me what to do:  PRACTISE. I need to practise walking in open spaces, I need to practise crossing the hall without assistance, and I need to do it in long 45-minute stretches. 

Listening to him reminded me of a talk I had with my students when they grumbled about a challenging assignment.  I had explained to them that a task might be difficult at first, but with practice, it gets easier.  One student then raised her hand and told me, “Mademoiselle, shouldn’t you then practise coming outside with us at recess?”  Yes N., wise little girl!  I should!

And that’s what I’ve started doing.  Instead of remaining safely nestled in my chair at lunch and recess, I cautiously walk back and forth across the open space of my classroom and have even started attempting crossing the hallway without holding onto someone’s arm.  It’s nerve-racking and uncomfortable.  My body tenses up during the whole ordeal and I’m drained by the time the bell rings.  But if it means I’ll once again be able to wander confidently from one end of the school to the other, that I’ll be able to shop alone, or take a walk in the park whenever I fancy, then it will be worth it!

Thank you Doctor!  And thank you to all the people who work at McMaster Hospital.  Every time I go, the receptionists, nurses, technicians, doctors and even the cafeteria staff have been extremely friendly, cheerful and helpful.  It’s uplifting to be among so many welcoming and warm people.  And even if they still haven’t figured out what exactly is wrong with me, I greatly appreciate everybody I’ve encountered there.

And thanks to my wonderful friends K. and A. for taking turns to accompany me to my appointments.  I just might be able to go to my next appointment alone if this works out!  Or who knows, I might not have to go back at all because of my incredible progress!

Promising Dreams

In the last two months, 5 people (including myself) have been having similar dreams about me.  And not just any dream!

1. My mother dreamed (twice!) that I was walking without my cane, quite normally.  She was very surprised and she asked me how I had healed myself. 
2. My colleague P.  dreamed that I was walking confidently and naturally, as if I had never had any muscle problems. 
3. My colleague F.  dreamed that I was running in a field, and he too was astonished at my miraculous recovery.
4. I dreamed that I was running fearlessly on ice- and sleet-covered sidewalks.  I was elated.
5. My sister dreamed that she was about to help me up a flight of stairs at a mall when I pulled away and started walking up the stairs independently, and then running.  We started racing and my sister had trouble keeping up with me.  (And my sister is really fast!)

I think it’s obvious that my muscles are going to get stronger, isn’t it?!

Five Times Seven

On my 35^th birthday, a couple of months ago, I woke up determined that my day would be special and meaningful.  I don’t usually invest much thought or time on special celebrations, especially my birthday, but today I felt differently.

 As I walked out of my apartment, on my way to work, I ran into my friendly neighbour L. at the elevator.  When I asked her about her March break, she paused momentarily, and in an emphatic tone tinged with dismay, she mentioned that she had celebrated her 30^th (I’m getting so old!!) birthday. “You’re still so young,” I chuckled.

 Then, when I got to work, my colleague S. came out to assist me.  I told her it was my 35^th (I’m getting old!!) birthday.  She rolled her eyes at me, “Oh, come on, you’re still young!”

 I smiled and agreed.  I told her I felt that this year was going to be a special one with lots of positive change. “Really?  That’s how I felt about my 49^th birthday,” she replied, “and it did end up being a meaningful year.  And that’s 7 x 7!”

 I remembered vaguely something about seven-year cycles.  Was it related to business cycles, or maybe something about body chemistry?  It doesn’t matter.  I like to think that turning 35 has a special significance.  That’s 5 x 7.  And when I look back upon my life, it does fit neatly into periods of 7, with a little bit of overlap.

 First seven years – 0-7

Living in my own imaginary world most of the time.  Not too many worries, no goals.  Just going with the flow, being well taken care of and letting life happen.

 Second seven years – 7-14

Freedom!  Living an exhilarating life in Guinea.  Roaming the village streets, climbing trees, spending lazy days on rooftops, taking care of my many cats and dogs, catching crabs and observing grasshoppers, bobbing up and down in the ocean waves, wading knee-deep in slippery slimy poto poto (a clay-based mud), diving into the white waters of a gushing torrent, swimming with vigour, exploring the bush, dancing with abandon, writing stories, and letting my imagination run wild with my friends’ tales of witch doctors and ‘le trou du diable’.  And let’s not forget summer adventures traipsing across Europe or sweltering in the Moroccan heat.

 Third seven years – 14-21

The pressure to conform. Assimilating knowledge and other people’s values and beliefs through academic learning. Contentedly and unquestioningly obeying rules at a strictly regimented boarding school.   Continuing the assimilation process into the university years, but with a shift in ideals.  Routines, schedules, and textbooks.

 Fourth seven years – 21-28

Fun and frolics!  Physical strength and fitness.  Socializing, dating galore, experiencing different relationships.  Developing a passion for partner dancing, from rancheras and boleros during my years in Mexico to ballroom and then salsa (addictive!) when I returned to Canada.

Fifth seven years – 28-35

Declining muscle strength.  Gradually losing the ability to run, dance, climb stairs or get up from a chair.  Experiencing heartbreak, low self-esteem and physical fear.  Being introduced to different forms of alternative healing. Opening up to new philosophies.  Becoming spiritual.  Worrying less and having faith that everything is going to be all right.

 And everything is all right and it just keeps getting better. I live comfortably, am loved and am happy.  It would be really nice if my muscles would heal and strengthen in this next cycle.  So many books and healers tell me it’s possible and I believe it.  I just have to double my efforts in convincing my body it can heal.  I am so looking forward to the day when I can go to a park alone and plop myself on the grass without worrying about how I’ll get up, when I can sprint up a flight of stairs to arrive at an appointment promptly, when I can bend down and pick up my fallen keys, when I can sign up for a course without having to convince somebody to come with me, or when I can use any washroom facility at ease. 

Blogging for the first time…

Tell me about a strange coincidence or an unusual occurrence and I eagerly listen, making connections, reading into the signs, imagining a special meaning to it all.  Usually, nothing comes of it; the moment peters out like a deflating balloon.  But those few thrilling moments pondering the significance of such occurrences are worth it—a little spice to my life.

 So when, in the last month, three unrelated people drew my attention to the world of blogging, I thought I should give it a try.  The only blogs I’d read had been my friends’ travel journals.  Actually, I did read one blog about seven years ago; but at the time the word blog wasn’t part of my vocabulary.  It was about a man dealing with polymiositis.  That’s what the doctors thought I had; so it was with avid interest that I read his entries. 

 More recently, my biotherapist lent me a few zines written by Chris, a young man with Duchennes Muscular Dystrophy, which led me to look up his blog.  And once again I was captivated by his reflections on daily life.  I might be 10 years older than him, a woman, and afflicted with a different health challenge, and yet I could identify with a lot of what he had to say.  It reinforced the feeling that we are indeed all connected. 

 Then last Sunday, my yoga therapist suggested I write a blog to keep her informed of my progress.  It seemed like a good idea.  As soon as I received her email inviting me to Livejournal, I started familiarizing myself with it. I was soon overwhelmed by the myriad of features and a little turned off by the blinking ads.

 But then I thought of a date I had had a month ago.  That too is a story of coincidences better saved for another entry.  He is a blogger on wordpress.com.  He writes (so eloquently!) about cuisine and culture.  I explored the site and was impressed by its simplicity.  I started reading different people’s blogs to get an idea of what could be done. I was so inspired that the original idea of blogging to keep my yoga therapist up to date has evolved into something much bigger. 

 This will be my story… my ups and (rare) downs, my highlights and acknowledgements, my challenges and solutions, my moments of synchronicity and unusual occurrences, my musings and reflections, and my progress.

 I like the idea of remaining incognito (at least for the time being), even from my yoga therapist, and my friends and family.  I suppose it gives me the feeling of freedom to write about anything that comes to my mind.

 I enjoy writing once I get started.  But it’s the getting started part that doesn’t always happen—I have a propensity for procrastination.  I think keeping a blog might provide some incentive to write regularly.  And I really do need an enjoyable and productive activity that I look forward to.  I used to occupy my after-work hours with dance, exercise and outings.  But as my muscles got weaker and my angst increased, I devoted most of my time lost in my work.  Then things got a lot worse, so I decided to cut back on my hours at work, and I was left with a little too much free time.  With too much time, my mind tends to wander and dwell where it shouldn’t.  I have a good feeling that blogging will be a positive and worthwhile activity.  I’m not sure if my posts will be read.  But I like the idea that they’re out there, nicely organized and available.  And who knows.  Maybe I’ll hear back from some interesting people.  There’s a whole new world out there.

 For leading me here, thank you to…

1. my yoga therapist,
2. my biotherapist who led me to Chris’ writings, and
3. to my one-evening date. 

 They say meaningful things happen in threes!