Step 1 – Self-Awareness

A year has passed since panic, shot nerves and distress led to a significant decrease in strength.  Or was it the other way around?  Engulfed in a befuddling mental fog, overwhelmed by small tasks, dizzied by dim lights and shocked by loud noises; it was a relief when my doctor’s office called me last October to come in and discuss some routine blood work I had done a few weeks earlier.  Otherwise, it would have never occurred to me to see him at all for such wishy-washy mood-related symptoms. 

When I sat down in his office, I burst into tears as I described the strange sensations I had been experiencing.  He mentioned that I was deficient in iron and B12, which may have been a contributing factor to my dizziness.  He then went on to suggest I take neurotransmitter enhancers or some such term.  My interest was piqued—in my muddled mind I thought he was talking of brain boosting supplements.  It wasn’t until he listed all the side effects that I realized he meant anti-depressants.

I was shocked.  I share the same views as Elizabeth Gilbert (author of my favourite book Eat, Pray, Love) when it comes to anti-depressants.  My instinctive reaction is to avoid them as I would brain-frying cocaine or body-busting prednisone; but I do concede that they can be an effective last resort in extreme cases such as Elizabeth’s suicidal episode or the somnambulant and disconnected phase of despair a friend of mine lived through.  However, I certainly didn’t think my case was the rock-bottom kind that would justify such drugs.

When I shared my thoughts with my doctor, he allayed my concerns by explaining that his job was to present me with all the available options and that he wouldn’t force me into anything I was uncomfortable with.  He then unexpectedly deviated from the conventional doctor’s path.  It’s all a blur now, but I remember being utterly baffled when he mentioned that I had accumulated a wealth of good karma, that this period was simply a moment of rebirth and that I should practice guided imagery to assuage my nerves.  He then spent a good fifteen minutes leading me on a relaxing mental trip. I left the office with a prescription for iron and B12, a doctor’s note suggesting I take a two-week break from work and a dazed smile on my face.

His comment about rebirth really struck a chord with me.  Maybe this turbulent period of my life symbolized Shiva’s destruction of old ineffective patterns of thinking, leaving room for the birth of healthier habits.

A year later, as I reflect on the positive changes that have taken root within me since that tenebrous season, I can see how I’ve started to flourish.  Although I’d already been convinced of the power of positive thought and the law of attraction, it wasn’t until last winter that I seriously started monitoring my emotions and thoughts as an attempt to mend my troubled mental state.  And no wonder I had never done it before, because it can be draining and irritating to be constantly vigilant of one’s thinking…but it does get easier.  And this new self-awareness was definitely worth the trouble.

I’ve always considered myself a fairly happy and positive person, but when I really started paying attention to my thinking patterns, I was surprised to discover how frequently I entertained self-limiting thoughts and how often I created obstacles in my mind before I was even faced with a problem:  not attending certain functions because there would most likely be stairs, not joining some friends at an event because I would most likely be a burden, dismissing the idea of a trip because it would probably be too inconvenient, not getting involved in a relationship because the other person would probably not be able to handle my situation, not sitting down in a waiting room because it’s unlikely that somebody would be able or willing to help me get up again. 

I know that when I hear myself making excuses, I should nip them in the bud and just focus on the desired outcome.  I’m sure if I do that, all those anticipated kinks to my plans will iron themselves out somehow.  So if I want to attend that workshop that has piqued my interest, I should just go and have faith that an appropriate parking spot will appear, that somehow I’ll manage to get myself to the designated room, that kind people will be around to help me up from my chair.

Yesterday, I spoke for the first time with Jen, an inspiring woman with LGMD.  When I found out she had travelled by plane all by herself to visit our friend YouTube John, I was overcome with immense admiration for her. Jen has gotten over her hang-ups about asking for help, which has brought her so much freedom. If she wants to go to a restaurant, she sits down in a chair without a second thought, and when it’s time to leave, she scouts the restaurant for the strongest waiter and simply asks him to help her up.  At the hotel where she stayed (by herself!!!!), she felt like lying down by the pool, so she dropped herself onto a chaise longue and asked a passer-by to lift her up when it was time to go.  And my favourite is when Jen and John went to the Empire State Building; there were 3 steps leading to the elevator, so Jen and John asked one of the workers to give them a piggy back ride up the stairs.  I’ve always declined piggyback rides because I felt I’d be too cumbersome for the person offering the help.  Well Jen and John are 6 and 9 inches taller than me and they had no problems asking a complete stranger for a piggyback ride!!!  Even John’s brother-in-law carried them up the 60 or so steps in front of the Philadelphia Museum of Art (the same ones Rocky Balboa used for his rigorous training!)

I think that now that I’ve learned to better monitor my thoughts, my goal for this new year is to follow Jen’s lead and to get out more, participate, join…without a second glance at the potential hurdles.  After all, if people pay to ride on roller coasters, surely I can leave my safe abode and expose myself to the precariousness of life as experienced from a wobbly body.

Another moment of self-awareness was acknowledging how I let outside circumstances influence my moods and reactions (especially when I’m tired), allowing anger, frustration, worry or depression to reign over me when the circumstances are not so pleasant.

I know I should be the one steering in this river of life, by consciously choosing how to think and act in different situations. But sometimes I’m so impulsive, I react before I even realize what I’m doing.  Other times, it’s just easier to linger in a foul mood than to make the effort to shift one’s thinking.  I’m working on it.

I might be driving home one night, exhausted and overwhelmed at the end of a challenging day, and thanks to my new wonderful thought-monitoring skills I catch myself painting glum scenarios, thinking how tired I am, wondering how long I can keep working with this body, feeling that my teaching has become stale, thinking I’m just no good, that I’m not doing enough.  Similar to the feeling I have when zoning out in front of a television, no effort at all is needed to keep going along this miserable path. It’s automatic and easy. But an inner voice challenges me to snap out of it.  I try to focus on something positive, but sometimes those happy thoughts are easily tainted by my stormy mood.  So I straighten my back, take a deep breath, put on a fake smile, make up a cacophonous song cheering me on and finally laugh at my silliness.  And I successfully snap out of it.

If I lose my patience with my helplessly fidgety but good-hearted student who, as soon as I put on a French song, prefers skidding across the floor like a hockey player and then twirling in the air like a ballet dancer rather than sing the lyrics, and I reproach him impulsively and a little too harshly, my immediate reaction is usually to feel really bad right after and to think of myself as a terrible teacher.  But nowadays, rather than dwell on my mistake, I quickly soften the admonishment, commenting on how his funky moves might grace the stage of the So You Think You Can Dance stage one day, but that now is the time for his mouth and tongue muscles to be practising the movements required to pronounce the French language correctly…then I send a silent prayer to the heavens for ideas that will engage this kinaesthetic student’s mind. I can then carry on with the day, my positive aura, and his, both intact.

A month ago, a kindergarten child who didn’t know me did a double-take when he passed me, probably wondering why this weird lady was walking so slowly and pushing a grocery cart in the hall.  I slipped momentarily into an embarrassed self-conscious state, but then instead of reacting stonily to his stare, I dazzled him with a smile and felt pretty wonderful when it was returned.

Little steps at a time.

One great thing about being more aware, is that when I’m having a good moment, I acknowledge it with a heart full of gratitude and take such delight in it that the good feeling becomes magnified.  And it’s made me realize that it really doesn’t take much to experience bliss.  Lying by the pool of a luxurious spa with a breathtaking view might be heavenly, but I often experience little moments of paradise, right here near my home.  The splashes of colour in the scenery outside my window, like a changing piece of art, bursts of giggles rippling through my body when I hear a funny story, an engrossing and thought-provoking conversation, the fun and flirtatious advances of a handsome man, a gentle breeze caressing my face, a magnolia tree exploding with flowers, the crisp autumn colours dazzling me as I drive to work, the sense of freedom as I walk independently (even if I’m holding onto my cart) from my car to the front doors of my school, a child’s impulsive hug, watching my enthralled students when I regale them with an entertaining story, a student’s delighted aha moment when she finally understands a concept, or listening to the smile-inducing Vinyl Cafe on CBC radio as I drive on a clear highway on my way to visit my parents.  It all feels so good.  These are the things that keep me alive and happy.

Experimenting with Alternative Healing

I find it fascinating how we develop certain perceptions, some of them valid, some unfounded, that influence our habits in life.

Even as a teenager, I had a deep-rooted aversion to pharmaceutical drugs.  I preferred to suffer a brutal headache rather than swallow a pill.  After the surgery from my first (and largest) muscle biopsy, I agreed to take some painkillers only after I passed out from the pain.  And when my tooth popped out after a fall, it took some forceful persuasion by my scientist cousin to get me to take antibiotics to avoid infection.  And it’s probably a good thing I listened to him; the tooth was pushed back into my gums and healed quite nicely.

When my first neurologist misdiagnosed me with polymiositis, and he prescribed prednisone, I was hesitant at first, then terrified when a little research revealed all the side effects—weight gain, osteoporosis, glaucoma, cataracts, depression, infection and countless others. So my neurologist suggested I get a second opinion, and I’m so grateful he did—years later I found out that patients with some kinds of muscular dystrophy often get weaker and may suffer irreversible damage to the muscle if put on prednisone. 

Since there is no conventional treatment available to me, it is only natural that I would experiment with alternative therapies.  Just trying something, anything, keeps fuelling a glimmer of hope. Ironically, my suspicious treatment of allopathic medicine is counterbalanced by my quick trust (and sometimes gullibility) when alternative medicine is involved. 

I’ve tried different diets, taken various supplements, dripped Unda drops under my tongue, rubbed blessed oil from Syria on my skin, experimented with Reiki, visited two different biotherapists, met with a hypnotherapist and a medium, trifled with NLP, and exposed myself to the healing waves of strange machines.  I’ve read Dreamhealer Adam’s and Jose Silva’s books and combined their ideas to devise visualization routines, and I’ve learned a few meditation tips from a yoga therapist.

It’s really hard to tell if any of it has helped because I don’t think I persisted with one therapy long enough to see results.  It is also possible that had I not experimented with some of these therapies, I might be worse off now.  How will I ever know?

There was one unusual occurrence.  Upon the recommendation of my sister’s friend E., I tried NAET (Nambudripad’s Allergy Elimination Techniques).  It was about 6 years ago, between misdiagnosis #1 and misdiagnosis #2.  I didn’t know I had MD at the time, so I thought why not try it, even if I didn’t think I had allergies.  At that time, I could still walk up stairs, but laboriously, and I could still get up from a regular chair, but with difficulty.  When I first saw the NAET practitioner, he tested me using a special computerized allergy-testing machine.  Then he stimulated various points on my back using acupressure while I held glass vials filled with liquid, (which I imagined contained the allergen.)  It all seemed a bit voodooish and I couldn’t help giggle inwardly during the odd experience.  He finished off with an acupuncture session. I was then instructed to avoid all contact with the specific allergen for 25 hours, which proved to be quite challenging.  Once I had to avoid eating anything with vitamin A, which I realized comprises a lot of my diet and left me with a limited choice of food for a day.   Another time, I had to avoid metal.  Not easy!  I remember going to a summer festival feeling a little silly wearing white cotton gloves to prevent metal from touching my skin.

The evening after my very first NAET treatment I experienced unusual results.  I suddenly felt an inordinate boost of energy.  I tried going up the stairs, and was surprised at how easy it felt.  My boyfriend at the time was just as dumbfounded as I was when I marched up and down the flight of stairs three, four, five times!  Then I sat in a fairly low chair and got up effortlessly, sat again, and got up without any trouble.  I was ecstatic!!!  I started jumping around, going up and down the stairs again, grinning madly, thinking I had finally found my miracle cure.  Unfortunately the effect wore off after a few days, and even after several months of NAET treatments, the incredible surge of strength was never repeated.

Some members of my family think it might not have had anything to do with NAET; they suspect it was really the trial run of an IVIG treatment I was given two weeks prior to the curious incident.  When I mention my experiences to different neurologists, they shrug their shoulders and seem to dismiss what I relate to them as probably my imagination.

I wonder if it was a combination of the IVIG, the NAET and cupfuls of green tea I drank that particular evening.  But I’ll never know, because the doctors are disinclined to try the IVIG again, and with good reason.  It is very expensive.

Just recently, I thought of the NAET treatment again.  My friend D. was telling me about his friend who has a severe case of Crohn’s disease, which affects the gastrointestinal tract.  That’s what my sister’s friend E. had.  After six months of NAET treatments, E. no longer had to follow a restricted diet or take steroids.  Five years later, she’s still symptom-free.  Coincidentally (I love synchronicity!), I was going to see E.—whom I hadn’t spoken with in many years—two weeks after D. mentioned his friend.  So I asked her again about her experience with NAET and found myself interested in the therapy once again.  Maybe I’ll give it another try.

Another treatment I persisted with was reflexology.  The first time I tried it, I was expecting a nice foot massage, so I was unprepared when the little man started poking me in the foot with a rounded stick.  It hurt so much! I found myself squirming in my seat, trying to pull my feet away, whimpering ooos and aaas and ouches!  Meanwhile, Mr. T was cracking me up with laughter as he tried to convert me to vegetarianism in his heavy Chinese accent: “This is Chinese torture!  hehehe! No Pain, no gain!!  Do you eat meat?  Do you treat your body like a coffin?  Your body is a morgue, that’s why your feet are hurting.  Healthy people’s feet don’t hurt as much!”  I couldn’t tell if my tears were from the laughter or the pain.

Despite the pain, I continued seeing the Chinese torturer—as he called himself—for almost two years.  He and his wife were so kind and caring, and very eager to convert me to their belief system.  They often invited me to stay for delicious vegetarian dinners after my treatments.  And within a few weeks, I became a strict vegetarian myself.  I’m amazed how quickly I went from eating just about anything to cutting out all animals from my diet, including cheeses with rennet and marshmallows with gelatin—and I do love a good Rice Krispies square!  At first I did it for health reasons, then my reasons became more spiritual, add to that animal rights and the environment. I had become so serious about my commitment to vegetarianism that I remember once biting into a vegetarian-looking pizza and feeling a sense of shock and panic when I discovered sneaky pepperoni slices hiding under the sauce.

After 4 years of strict vegetarianism, and after carefully considering the advice of several other healers, and after many months of internal debate, I finally have started including some animal flesh as part of my diet, but with reluctance…and respect for the animal.

The two years I saw Mr. T. for reflexology and suction cup therapy, although I did not improve dramatically, I did maintain my strength.  But I also started becoming uneasy with his teachings.  Most (but not all) of his beliefs mirrored my own; yet I felt a sense of discomfort, a feeling that the path along which he wanted to lead me was not the right one for me.  So I stopped seeing him.

There are so many alternative healing options out there, and there was a time I would stress about whether I was trying the right one.  Adding to my anxiety were my well-meaning friends and family who thought I was being duped and often led me to doubt my choices.  People say investing in your health is the most important thing you can do.  But what if you’re using your limited resources to invest in the wrong therapy, and how long should you wait to see results?

I don’t worry anymore.  I just trust that the right healers will cross my path at the right time.

During my fall crisis last year—which I feel was a very much-needed wake-up call—I frantically renewed my search for healing solutions.  A relative mentioned the Bruno Groening Circle of Friends, and I was able to convince a friend to accompany me to one of their meetings.  But the many stairs and late night weekday meetings left me unmotivated to attend again.  Yet, I did benefit greatly from contacting the BGCF: one of the organizers mentioned the biotherapist P. to me.

When I first met the wonderful P. I felt as if the room where he worked his magic was brimming with goodness and uplifting energy.  He and his wife are so warmhearted.  Just to be in their presence is motivation enough for me to face my fears of going to unfamiliar places alone.  The first few times, I drove to the underground parking of their clinic, waited for any person to walk by and—contrary to my nature—I would ask the stranger to help me cross the parking garage.  Most of the time the people were very friendly and helpful.  The last person I asked eyed me suspiciously and reluctantly walked me across to the other side.   I felt bad after that experience, but it didn’t stop me from seeing P. as often as I could during his short stay.  It just prompted me to find a better solution.  I started to plan my arrival during less busy hours when the few parking spots on the elevator side of the garage were usually free.  They were further away from the entrance, but from those spots I could walk along a wall all the way to the elevators.  After my session, P.’s wife would ask one of the other patients to walk me back to my car.

I am so looking forward to P.’s return, not because I need his healing, but because he and his wife are such wonderful people.  In fact, I don’t think I need a healer anymore.  I feel that a switch has been turned on within me—a click of the mind, a shift inside my body.  I really feel that these days I am thinking my way to healing and it’s starting to happen.

I remember vaguely one of the daily Abraham-Hicks quotes saying that a healer’s job is to make the patients believe they can heal.  I always believed, but now I know it and feel it from the depths of my being.

What’s MD?

The day I announced to my network of friends that I had started a blog, I heard back from a schoolmate I hadn’t seen in almost 20 years.  He had read my posts and told me that he too had muscular dystrophy.  Except for a few people I met briefly at an MD chapter meeting last year, I don’t know anybody with muscular dystrophy.  In fact, when asked what I have, almost every single time, people assume I have multiple sclerosis even when I answer very clearly that I have muscular dystrophy.  The conversation often goes something like this:

“What do you have?”

“Muscular dystrophy”

“Oh yeah, my aunt has that.” 

“Really?!” in an eager voice, thinking that finally somebody I know actually knows somebody with MD…but I always check, “Are you sure your aunt doesn’t have multiple sclerosis?”

“Yes, that’s what she has.”

Slightly amused and without a trace of impatience, I clarify, “I don’t have MS, I have MD, muscular dystrophy.”

“Oh, what’s that?”

And it’s perfectly natural that they would make the mistake; even my family doctor has confused the two on several occasions.  After all, the rate of MS—especially in the northern countries—is much higher than that of MD.   The prevalence of MS is as high as 1 in 500 in certain regions.  Statistics for MD were a little harder to find because there are so many different types.  I found one statistic for facioscapulohumeral muscular dystrophy to be 1 in 20 000 and for myotonic dystrophy, the most common form of an adult-onset muscular dystrophy, it was 1 in 8000. 

So you can imagine how surprised I was when I found out that somebody I actually went to school with also had MD!

I haven’t really touched on the subject of MD in my previous posts and it wasn’t my intention to do so.  The ailment I may possibly have seems irrelevant, and I’m more interested in writing about healing and happiness.  But after speaking with my schoolmate, I thought it would be a good idea to explain this often-misunderstood affliction and compare it to MS.

From the MS Society of Canada website: “Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system — the brain and spinal cord. The disease attacks the protective myelin covering of the central nervous system, causing inflammation and often destroying the myelin in patches. In its most common form, MS has well defined attacks followed by complete or partial recovery. The severity of MS, progression and specific symptoms cannot be predicted at the time of diagnosis [...] MS can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis.”

Muscular dystrophy, on the other hand, is a genetic disorder that is characterized by progressive weakness and wasting of the muscles that control body movement.  It’s caused by incorrect or missing genetic information that prevents the body from making the proteins it needs to build and maintain healthy muscles. About 100 different neuromuscular disorders fall under the umbrella of muscular dystrophy, but there are only nine diseases that are classified as muscular dystrophies—Duchenne, Becker, limb-girdle, congenital, facioscapulohumeral, myotonic, oculopharyngeal, distal, and Emery-Dreifuss.  In most cases, a person’s muscles will continue to degenerate—quickly or slowly depending on the disease and the person—until s/he’s wheelchair bound.  There is no (allopathic) cure.

Although there are some very serious and heart-breaking cases of MS, I’ve also heard stories of people with MS going into remission and even recovering completely.  And it takes one story to give much needed hope.  I’ve searched high and low for a fairy-tale MD story, but I haven’t found one…YET.

And that’s why I’m telling you all about muscular dystrophy.  Because now that you’re aware of the staggering odds, you’ll be as thrilled and amazed as I will be when I finally write the story of my miraculous recovery. 

So that you understand how far I will have come, here’s a bit of history and background about my current state:

Almost two years after I saw my first neurologist (who had misdiagnosed me with polymiositis), I was diagnosed by neurologist #3 with limb-girdle muscular dystrophy 2A (which involves the calpain-3 gene).  4 years later, neurologist #7 sent my blood out for a mutational analysis of the calpain-3 gene to confirm the diagnosis; at the time of my initial diagnosis, such a blood test was not available and diagnoses were based on muscle biopsies.  6 months later, the results came back negative.  A third muscle biopsy and more blood tests later, I still don’t have a specific diagnosis, but my neurologist has no doubt that I have some form of limb-girdle muscular dystrophy.

So far, at least 15 different genes with mutations have been found to be responsible for various forms of limb-girdle muscular dystrophies, but scientists are still working on locating others.  It’s possible that the gene responsible for my weakness hasn’t been identified yet…OR maybe I did have LGMD 2A and all my visualizations, positive thoughts and the healers I’ve seen have caused the calpain-3 gene to spontaneously mutate to a healthy state; and now I just have to help my muscles remember how to be strong and functional again!!!!  My neurologist disagrees with this last theory, but that’s the assumption I’ll stick to on my road to recovery.

Having LGMD means the muscles closest to the trunk of my body are affected.  Currently, I cannot get up from a regular chair, or climb steep stairs.  I cannot raise my outstretched arms higher than a 30-degree angle from my body or lift my feet more than 5 cm from the floor (if I don’t use momentum.)  When lying down on my back, I cannot lift my head or raise my extended legs.  I walk slowly and my balance is precarious.  I need really good floor grip to get out of a raised chair, or my car.  How I look forward to the day when I’ll be able to once again wear dainty sandals without a heavy-duty tread!  

Now that school is almost over, I plan to dedicate myself fully to recovering my strength.  I predict that after two months of regular exercise, visualizations, focused breathing and meditation, enough sleep, and positive expectations, I will be able to rise from a chair a little more gracefully, climb a stair without twisting my body awkwardly, lift my feet and arms a few more centimeters and walk more stably.  Let’s see!

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?!