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.

Everything Happens For A Reason

I find it comforting to believe the common saying that everything happens for a reason. Even making up a good reason (if one is not so obvious) makes it easier to cope with more difficult circumstances.

Just the other day I had another accident. It’s strange how time seems to slow down when my body is falling.  I lose my balance and in the split second it’s happening I manage to process everything that’s occurring: “No big deal,” I was thinking, “I’m falling onto the table, I’ll be safe…just have to put my arms down to steady myself…oops, my arms are buckling, that’s still ok, my body will land on the table and I’ll be able to push myself up from it, it’s all good…o oh, the glass part is tipping over, how is that happening?!!…OH NO!  I’m going all the way down!!”  CRASH (the table hitting the ground), BANG (my head on the floor),…“OWCH!!”

This particular evening I was already tired from lack of sleep and battling a cold. And here I was, wedged between the toppled glass top and a chair.  A kid would have been delighted by this tent-like structure housing my body…not me.  After some effort, I managed to wiggle my way out of the tight spot.  But when I wanted to get into a sitting position, my already exhausted state, combined with the smooth laminate floor and my soft slippery autumn clothing made it too difficult for me to sit up.  And that’s when I thought, “I am SO LUCKY!!!” because I had just put the phone on the charger which sits on a lower shelf (and it’s not often that I do that!) So, just like my students who love to imitate animals during drama activities, I slithered my way around the rug and up to the phone, feeling so very fortunate to be able to reach it from my lying position.

Of course, the first person I called was my friend K.  I was a bit shocked when I heard my ex’s voicemail after the 5 rings.  In a momentary bout of confusion I had dialed the wrong number!  So glad he didn’t pick up.  I then dialed K. (right number this time.)  His voicemail too!  Now what?  I reluctantly tried the superintendent and was strangely relieved that he didn’t answer either.  I didn’t feel comfortable asking for his help anyway.  The only other person who had a copy of my key was my cleaning lady.  When she answered her phone, a feeling of great relief released my emotions, and I started sobbing into the receiver.  It took her a little while to figure out what it was that I needed, but thankfully, she came in less than 10 minutes.

When she entered my apartment, the sight of her tiny frame did not give me much reassurance.  I’m not that large, but it’s very cumbersome picking up a human rag doll from the floor, even for a big guy.  I suggested that we get help from a neighbour, but she wanted to try helping me by herself and almost managed it, but then lost her grip and dropped me to the floor again (more gently this time.)  So I convinced her to get my friendly neighbour L.  who was kind enough to come right away.  Finally, my shaky body was lifted off the ground and plopped onto a chair.

L. and I only know each other as well as our brief congenial chats in the elevator.  She probably had no idea how very amused I was (despite my trembling limbs, blotchy and tear-stricken face, and disheveled appearance) when she said, “I’ve been meaning to get your phone number because I wanted to have you over for dinner, so I’m glad I was able to come and help.”  I too had been meaning to get her number since last spring but I always kept forgetting to ask her.  Everything does happen for a reason, doesn’t it?  This mishap finally got me to exchange numbers with L.  and I’m sure we’ll become much better neighbours and friends from now on.  And simply believing that that was the main reason for the fall has allowed me to continue living by myself as worry-free as I possibly can be.

Still, a few days after the incident, I was going through a rut and feeling quite tired and bothered by the fact that I have to live with MD.  Disappointed with myself and unmotivated with life, I wallowed in this melancholy state a little longer than I should.

My parents’ visit cheered me up a bit.  We ran some errands and did a few things that I can’t do by myself like hanging pictures on my wall.  That night, half an hour after I had hugged them goodbye, my dad returned, frantically knocking on my door.  When I opened it, he asked me in a worried tone, “Why haven’t you been answering your phone?  I buzzed you, I called you from my cell, I was so worried that you had fallen down again!”  Puzzled, I explained that my phone hadn’t rung.

My dad had come back because he had forgotten to return my bankcard.  And how fortunate it was that we had forgotten about my bankcard in his pocket, because had he not returned I would not have realized that my phone was out of order!

After a bit of detective work, we figured out that a wire from a telephone outlet I never use had been frayed and damaged when we had removed the jack earlier that day to place a whiteboard over it.  And that had caused the line to go completely dead.

What if I hadn’t forgotten about my card?  What if my dad had not returned?  When would I have figured out the phone problem and who would have helped me fix it? Things really do happen for a reason…

But then I started thinking: why did that wire get damaged in the first place? What are the odds of that happening and for what good reason?  Maybe because it’s these moments of peculiar coincidences, when I feel rescued by the Universe’s fluky ways—so grateful that I had forgotten about the bankcard or put the phone on the lower shelf—that I’m encouraged to keep following the road of life freely and without fear, because I’m (so obviously) watched over and well taken care of.  Yes, there are some uncomfortable moments at times, but everything I need always comes together at the right time.  And these last couple of incidents did get me out of my rut and have inspired me once again.

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.

Frustrating, but…

“Know that underlying the storm is peace, and under the chaos is order.   Use the power of faith as your anchor:  faith that there is a reason why things happen as they do; faith that you will make it through a crisis; faith that you are moving forward to a better place.” from Invisible Acts of Power by Caroline Myss

13 years ago, I was living in a cute three-bedroom bungalow in Mexico.  The kitchen connected to a bright laundry room surrounded by large windows, and from the laundry room, a glass door led to the small yard, which was enclosed by 3-metre walls.  One day, my housemate Lisette and I accidentally locked ourselves out of the house.  Of course, I was annoyed.  How could I have been so careless?  I had never forgotten my keys before.  What a hassle it would be to walk all the way to our landlord’s home in the searing heat.  Much better try to break in!  I knew that the laundry room and kitchen doors had been left open, but how to get over the tall walls?  After a few brainstorming minutes, I reached for the burglar bars that protected the front window, shinnied up to the top, and from there, I was able to clamber onto the roof, walk across the rooftop and jump into the yard.   I marveled at how easy it was to break in and made a mental note to keep the laundry and the kitchen doors locked in the future.

That same weekend, Lisette, my other housemate Isabelle and I were on our way out when I realized I had forgotten to lock the kitchen door.  I rushed home, locked it and went on to enjoy the night.  When Lisette and I returned to the house around three in the morning, Isabelle was already home and sound asleep.

As soon as I awoke the next morning, Isabelle asked me if I knew why there was blood splattered on the laundry room floor.  When I went in to take a look I noticed one window had been broken.  A thief must have cut himself on the shards of glass in his attempt to break in.  “So that’s why I heard a strange noise when I was sleeping last night.  I thought I was dreaming,” exclaimed Isabelle.   I could only nod dazedly as an intense wave of relief swept over me.   “Where would Isabelle be now had I not locked the kitchen door?!  Forgetting my keys was a blessing in disguise!”

And sometimes I wonder where I would be had I not developed muscular dystrophy.    It’s entirely possible that the place might not be as rich and enlightening as the one I am in today.

My life has been marked with many fortuitous moments of synchronicity that have kept me out of trouble and opened my eyes to new ideas.  I have come to trust wholeheartedly that in the grand scheme of things, amongst the hassles and mishaps of life, I will always be led to a good place.

Yet, there are days when I wake up in a dark and cloudy mood, in which the slightest frustration will trigger a downpour of angry thoughts.  A couple of Mondays ago, I was staying at my parents’ place and, without my usual surroundings, was having more difficulty than usual getting dressed.  My patience was lacking and all I wanted to do was complain about the pointlessness of this wretched disease. “How can I enjoy this earth when I can barely walk? How can I contribute to this world when I need so much help?  What tasks will I not be able to do when I return to work in September?” muttered my mind.  And like sunrays trying to pierce through the dark mass of clouds, another voice within me piped up, “Be positive Amanda, refocus!!!  Think how lucky you are—loving family, nice home, people who help!  It could be so much worse!”  But all I wanted to do was whine like a spoiled child.  “I’m tired of TRYING to be happy, I’m tired of life!” “No, no, no Amanda, all you have to do is pivot your mood!  Good thoughts!  It will all be OK!”

Sure enough, it was OK.  The storm passed quickly and sunshine has flooded my heart once again.  The question of what I might no longer be able to do (strength wise) in September continues to niggle at my mind, and as a result, I have become even more disciplined.  I’ve been meditating until my limbs go numb, visualizing until my body heats up, and exercising more regularly.  Every night before I fall asleep I embark on a ‘rampage of appreciation’ (as coined by Abraham-Hicks).  It’s already starting to pay off.   I’m feeling pretty good and some tasks have become slightly easier.

In the book I just finished reading, Caroline Myss quoted the author and psychiatrist M. Scott Peck:

“The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled.  For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts, and start searching for different ways or truer answers.”

I realize it’s ok to get frustrated once in a while, and even better when my frustration thrusts me into action.  The good thing is that as I mature, these uncomfortable moments are becoming less frequent and much briefer.  It’s all good.

Be careful what you wish for!!!

“And, when you want something, all the universe conspires in helping you to achieve it.” from The Alchemist by Paulo Coelho

Saturday evening – A phone conversation with a friend

After she tells me how much she enjoyed my last blog entry I say, “…but I don’t know what I’m going to write next.  I want some adventure in my life, something to write about!…”

Sunday afternoon – A Skype conversation with YouTube John

I mention to John that I can’t sit up from a lying position.  I tell him I watched his video, but I wasn’t successful when I tried his technique on my bed.  I’m so incredibly lucky that the last time I fell, I had collapsed into a sitting position on the floor.  Otherwise I don’t know how I would have been able to reach the phone to call for help.  John shares with me that at one point he couldn’t go up the stairs leading with the left leg; he persisted stubbornly and finally managed to. “You just have to push yourself, you can do it!” he encourages me.

Monday late morning – Lying in bed, deep in thought

Three weeks of vacation have just flown by and I haven’t worked as hard as I should.  I really should push myself more!  Why, I wonder, is it so hard to stick to a proper exercise routine?  I remember in my early 20s how I would get up every day at the crack of dawn to go jogging, and the immense pleasure I felt at witnessing the neighbourhood slowly wake up from silent darkness to birds chirping, dogs barking, store fronts opening, cars rumbling by and the smell of freshly baked bread wafting through the air.  I would finish off with an intense sprint, pushing myself to my limits.  After work I would walk to the gym for an additional hour or two of physical activity.  One year I even joined an exercise class led by a football player who had established a gruelling routine of squats, lunges, jumps, Pilates-like ab work and weights.  I was able to rise from a cross-legged sitting position to a standing one without using my arms and I could give my 6’3” trainer piggyback rides for fun.  Those were my strongest days.  How I relished the feeling of a blood-pumping, muscle-straining, sweat-dripping, vigorous workout. Oh I wish I could feel like that again!  

Monday evening – The universe conspires

I just poured boiling water over the couscous, which I’m going to eat with the salmon-kale-tomato-onion medley I cooked up.  As I’m about to cover the bowl with a plate, I take an awkward step backwards, lose my balance—oh no! this can’t be happening!!—and tumble to the ground.  My first thought is one of wonder at my quick reflexes—somehow I’ve managed to lift a hand to my head, cushioning it as I crashed down.  I’m lying sprawled on the kitchen floor with just a little bump on my chin and a bruised elbow.  Thank goodness for yielding vinyl floors.  My second thought: “If only I had managed to cover the couscous!  I wonder if it will cook properly now?”

For the first time after a fall, I’m completely calm (inside and out).  I do wonder how I will get out of this predicament, and because I want everything in my life to have meaning, I reassure myself that there must be a reason for this accident.  Maybe it’s a test…to show me that I can get up by myself?  Now that would be the perfect adventure to write about!

I twist my body so I’m lying on my side, then somehow manage to prop myself on one elbow, and with the other hand I push with all my strength against the floor, trying to raise myself to a sitting position.  My palms are beginning to sweat and I start sliding. I take a little break, twist a little more, and push, push and struggle harder.  I know I have no choice. I talk to myself out loud, words of encouragement that I can do it.  My whole body is straining, and finally, I force myself up into a sitting position!!  John was right; I can do it! 

Once I’m in a sitting position, it’s easy for me to scoot over to the dining area.  I don’t want to call anybody just yet.  If I can drape myself across a chair maybe I’ll be able to get up by myself.  I rock on my legs to get into a kneeling position, but I keep falling back after a few attempts.  So I grab the cushion on the chair, slide it underneath me and rock again.  I’m finally on my knees, precariously balanced with my arms pushing against the floor.  I try to swing my arm over the chair but my muscles are exhausted, and I fall back into a sitting position.  I rest, and repeat the whole process again, and again.  It’s not working; the chair is a little too high.  So I try to kneel on a cushion to give myself a little extra height.  Somehow I manage, and I experiment with different ways to hoist myself over the chair.  I feel like I’m almost there, I hug the chair, one final exertion, a push, and suddenly…the chair topples over along with my head, which lands with a big thump on the floor.

I’m lying flat on my back, with a banged up head and a sprouting seed of panic.  I rub my eyes and they start to burn and tear.  Oh no!  It’s the onion juice that’s still on my fingers.  Comic relief, just what I need. While waiting for the sting to fade, I lie on the ground, drained.  Maybe my adventure will be more like one of a castaway waiting to be rescued.  I don’t know if I have the energy to try once again to go from a lying position to a sitting one.  I wonder what it would be like to be stuck here until Friday, when my parents and aunt are dropping by.  I’m so tired that the floor actually feels comfortable.  Maybe I should spend the night here and try again tomorrow morning.  But no, a short break is all I need and once again I make another huge, strenuous effort to get myself to a sitting position…and I’m successful a second time.  Yay!

Now it’s time to play it safe so I call my friend K..  In good spirits, I ask him what he’s doing tonight. 

“Why? Do you want to go out?” he asks.

“Well, I’m kind of sitting on the floor right now.”

He’s completely baffled.  The last time I called him after a fall, I was barely audible for all my sobbing.  “But you’re so calm!  What happened?”

I take a few minutes to give him the details of my adventure, I mention the couscous, then we talk about dinner and the conversation turns to French fries and how the smell of deep-frying oil can really stink up your home.

After our leisurely chat, which I enjoyed thoroughly from the rare position of sitting on the floor, he says he’ll be over in half an hour. 

My friend K. really is wonderful.  He’s coming all the way from the other side of the city to my rescue.  What would I do without you K.?

While I wait for him, I drag myself over to the living room and exhaust myself further in a final attempt to get up independently.  I’m not able to, but I can’t complain.  After all, I did get everything I had wished for:  an adventure to write about, the opportunity to get up from a lying position to a sitting one,  and the exhilarating feeling of a vigorous workout.

Dating with a Disability

Just recently, I started corresponding with another person who has LGMD.  It’s been interesting to compare our experiences and to discover how much we have in common.  One of the things J. asked me was how my dating life had been affected.  I laughed at the question, because it’s something I’ve often wondered about others who are coping with a disability.

When I hear stories of people with physical challenges who find love I’m filled with happiness for them and hope for myself.  And there are many stories.  One man with LGMD with whom I was briefly in touch a few years ago was happily married with three kids!  A documentary about a very independent and capable legless woman who had found the love of her life, married him, and had a child, left me with a sense of wonder and admiration for her.  And Margaret’s latest comment on Tips & Tricks for LGMD about her helpful husband was particularly uplifting for me.

The funny thing is that it’s not so much my physical weakness that has been an obstacle to finding love, but my frame of mind.  It’s taken a lot of mental effort to squash certain thoughts that even now still flit through my head:  Why would he want to share my complicated life with an uncertain future?  How can he cope with the hassles of being with someone who has muscular dystrophy?  What do I have to contribute to a relationship?  Would I be a burden?  How can he find me attractive? Isn’t it unfair for me to pursue him?

In my last serious relationship, all those questions troubled my mind, and as a result I never felt comfortable bringing up the subject of commitment or future plans.  Even after we bought a house together, talk of marriage remained taboo.  Not only did I think it was unfair to force him to address the situation, but I was afraid of the answers.  He too was tormented by worries he never mentioned.  Our self-censored communication eventually led to a wall growing between us, and by the end of our relationship we were practically strangers, emotionally isolated from one another.  Our unhealthy entanglement might have continued longer if we hadn’t sought the help of a relationship counselor.  The deep sense of guilt he felt at the thought of abandoning me, and my fear of being alone and undesirable had overshadowed the fact that we really were ill matched.  When I moved out, it’s as if a heavy burden had been lifted off my shoulder and I was finally able to reconnect with who I am.

Still, it took several months before I was able to pluck up the courage to date again.  The last time I had been on a date, stairs were not an obstacle and I could still wear high heels and sexy little dresses. Dating would be a little different now.  Hopefully my dazzling personality—need to keep working on it—would be so blinding, Mr. Right wouldn’t even notice my sensible shoes and my ungainly walk.

But how to meet a guy?  Especially when the few times I do go out, I’m always safely latched onto somebody’s arm.  It doesn’t really give the vibe of ‘single and looking’.

I remember 12 years ago, a young couple I met at a party told me they had found each other online.  My initial reaction was one of alarm as I asked them, eyes as round as saucers, “But isn’t it dangerous?!”  These days it seems lots of people are meeting on Internet dating sites.  I’ve heard many stories of success (and some disasters) with cyber dating.  Why not explore it for myself?  It was time for a little adventure.

I knew it would be really awkward for me to explain my situation, so I just laid it all out in my dating profile.  After all, I didn’t really want to be contacted by people who would have a problem with my issues.

It took me a while to ease into the flow of connecting online.  I felt like I had reverted back to the state of a giddy teenager.   For the longest time, I was even too embarrassed to post a picture.  What if one of my students’ parents were to see me?  The first time I saw the blinking square—the signal that somebody was messaging me—I was thrown into a tizzy.  What to say?!  But I slowly got the hang of it.  Then after many online chats, it was time to speak on the phone, another reason to lose my nerve.  And then the dreaded, yet exciting time to meet.  The first time was a disaster. When I saw the person at the far end of the bookstore where we had agreed to meet, I was so overcome with panic I hid between the shelves.  By the time I had calmed down, he had left and I get the feeling he wasn’t very happy.  So sorry, wherever you are!  But just like with job interviews, with more practice I was able to keep my nerves under control and I slowly shortened the length of time between the initial online contact and the in-person meeting.  I even posted my picture for short periods of times, which led to an increase in the quantity of hits, but not necessarily the quality.  There are lots of people out there who don’t read profiles!

The 7 men I met in person that one year were very nice, friendly, helpful and the source of some interesting conversations.  Four of them had names that started with A and four of them were Aries, (completely irrelevant, I know, but strange, don’t you think?)  There were surprisingly few awkward moments. What worried me the most about an evening out was what to do if I had to use the washroom.  Even the handicapped ones aren’t all that accessible.  So I would drink very little and eat something salty before each date—a solution that worked but was not ideal because dehydration, conversation and nervousness lead to a dry mouth…not a comfortable feeling.  I also always asked them right before sitting down—almost apologetically—if they thought they could manage to lift me up from the chair at the end of the evening.  I suppose I was afraid they might have a bad back or something.  Of course, it never was a problem.  I just had to offer a little guidance on how they could help me.  I remember one time I had to climb a few steps that had no handrail.  I asked my date if he could put his arm around me for support as I struggled up the stairs.  Instead, I was completely lifted off the ground, feet dangling in the air.  It wasn’t what I had in mind, but it worked.  Another time, I had a little trouble getting into my date’s tall jeep.  As I was trying to figure out different techniques that might work, he just scooped me up and set me on the seat.  Such fun! There was one fellow I really liked.  We talked animatedly for 6 hours straight and I thought he was interested in me too.  But he must have had qualms about my situation because we never saw each other again.  I felt pretty dejected after that date…and then really surprised when he called me a year later to ask me out on a second date.

Overall, my experiences were pretty good and I realized that there are people out there who will happily pursue a relationship with a disabled person.  But dating really is like an emotional roller coaster, inducing a range of feelings from thrilling highs and heart-thumping anticipation to lung-squeezing longing and disappointing lows.  It also unleashes a flood of thoughts, some of which are happy-feeling while others are thoughts of doubt and sadness, and reminders that I’m different.  The turmoil of dating eventually drained me and I stopped looking for an entire year.

But that long break was important to allow for a spurt of emotional and spiritual growth and to continue building my self-confidence.  And all of my past relationships and dating experiences were not in vain:  I now have a much clearer idea of what’s important to me in a relationship.  I get the feeling it won’t be long before I meet my perfect match.  I’ll know it’s him when we both feel like we’re better people together than separate.  We’ll feel uplifted and motivated in each other’s company.  Our conversation will flow naturally, unimpeded and without pretense and will be peppered with lots of laughs.  Our melded energies will give rise to a flurry of ideas that will multiply and keep getting better as they bounce back and forth between us.  And together, instead of seeing obstacles, we’ll only see opportunities for creative solutions and purposeful action.  And let’s not forget the powerful chemistry between us that will set our souls ablaze and illuminate our lives.

In the meantime, I’m going to follow the advice of Amy Dolan, a very wise young woman with MD who wrote on one of the muscular dystrophy forums:

“I know a lot of people in chairs struggle with finding love but I think as long as you shine and let people see that you don’t let your disability rule you, people will see you first and the chair second. Just go out, have fun, live and be happy and good things will come to you. I firmly believe that it’s all about attitude…and maybe a little cleavage if you’ve got it! “ 

And she obviously practices what she preaches.  She’s engaged!

MD, GDP, and being Environmentally Friendly

There’s been a lot of talk about the environment in the last few years: CO₂ emissions and global warming, the giant pool of plastic debris floating in the Pacific ocean, the hazardous substances that leach out from technological waste, and our planet’s future inability to meet the demand of an increasingly consumerist society.

Like most people, I’m trying to do my little part in helping the environment.  I recycle.  I’ve outfitted most of my lamps with compact fluorescent light bulbs.  I drive my small fuel-efficient car to work a mere 7 km away.  I let my washed clothes air-dry.  Unless it’s unbearably hot, I keep the air conditioner off.  I rarely eat meat and I’m buying less stuff.

I hadn’t given much thought to the act of buying less until I had a conversation with my colleague S..  The question of how to support the economy and maintain low unemployment rates while minimizing our ecological footprint was raised.  One answer—a partial solution—is to spend more on services and less on goods.  And that’s what I’ve been doing all this time!!

In fact, many people with physical challenges have become dependent on certain services.  Although it’s never bothered me in the past, now that I see my spending as a way to boost GDP without harming our planet earth, I’m delighted to contribute a chunk of my income to the following services:

Condo Convenience:  Whenever my neighbour from across the hall would see me, he always tried to drag me into a repetitive diatribe against the high maintenance fees we paid.  I explained to him that I was happy to pay for the convenience of condo living (with elevators and winter-worry-free underground parking.)  If he hadn’t moved, I would have added how great it is that part of our fees are paying for the environmentally friendly services of an efficient condo manager and a very helpful superintendent.

Health:  I’ve spent a small fortune contributing to the livelihood of various alternative medicine practitioners and I learned a great deal from many of them.  The one I continue to visit regularly is my osteopath.  I first considered seeing him when I heard how much he had helped my colleague S..  Then when I brought up the subject of osteopathy with a physiotherapist, and both he and an eavesdropping client uttered the name ‘Igor’ in unison, the same Igor my colleague S. was seeing, how could I ignore the signs?!  It’s been wonderful being treated by him.  He’s a peaceful calming soul who in addition to osteopathy also does acupuncture and craniosacral therapy on me.

Grocery Delivery:  When my roommate moved out, I knew it would be impractical to rely on friends to go shopping with me, so I decided to register with Green Earth Organics.  They select a variety of organic fruits and vegetables (locally grown when possible) and deliver them right to my door.  Not only do I feel good about eating organic food, but I’ve also enjoyed chatting with the friendly delivery people.

Housekeeping:  I can still do a lot of the cleaning in my apartment and I’m sure I could find techniques and tools that would enable me to clean more difficult-to-reach areas like the tub.  But it takes forever!  And when I’m working, housecleaning chores fall to the bottom of my priority list.  (They weren’t exactly at the top even when I was fully mobile.)  So I was pretty excited when I saw two phone numbers for cleaning ladies on the notice board of my building last fall.  The first woman I contacted asked me to call back in the evening.  When I called the second phone number, a timid voice answered.  After a brief chat, we agreed to meet that very afternoon for an estimate.  I was a little surprised when I opened the door to a white-haired frail-looking dainty little lady, and for a fleeting moment, a pang of guilt tugged at my heart at the thought of this elderly woman cleaning my home.  She took a look around the apartment, expressing a girlish delight at the sight of my plants and the sunlit living area.  She then told me her price…I balked at the sum.  I didn’t expect it to be so expensive!   So I told her I still had another person to call and that I would think about it.  I can’t remember what she said next, only that there was a slight tinge of panic in her voice, the fear of losing me as a potential client.  After all, she lived in the building beside mine and most of her clients were a one-hour bus ride away.  Something about her moved me and I never did make the second phone call.  I couldn’t be happier with my decision!  Not only does Helen clean more thoroughly than I ever have, but she is a lovely person with a big heart.  One Saturday, when I returned home from an appointment, she asked me about my health.  I told her I felt I was on the right track and that healing might occur one day.  She asked me if I believed in God and if I prayed.  I told her I did (although I think our concepts of God might be quite different.)  I explained to her that I believed everything happened for a reason, that my condition was a good learning experience, and that I felt lucky to have so much support and to still be able to work.  “But I think I’ve learned my lessons and I’m ready to be healed!  I’ve been helped enough and now I want to do some helping.”  I added, all chipper.   And without warning, she burst into tears, sobbing uncontrollably: “I don’t understand, I don’t understand,” she cried, “why can’t he make you better? And you want to help!  Why doesn’t he make you better! Hasn’t it been long enough? ”  I found myself trying to comfort her while gently patting her back and handing her the box of tissues.  “It’s ok, don’t cry.  I’m ok, and I’m really happy, really, it’s ok.”  I was completely taken aback and touched by her compassionate outburst.  What a gem Helen is!  The funny thing is that a few months after Helen started cleaning my place, I found a phone number amidst some papers I was sorting out, a phone number I had jotted down two years ago for a seamstress.  It was Helen’s number!  Did I mention I’m a sucker for coincidences?

 I really do feel very fortunate that I can afford all these services, and with a smile.

(Note:  I came across this interesting BBC Green article—after my conversation with S.—about buying less to help the environment: Save Money and the Planet?)

Tips and Tricks for LGMD

Occasionally, when I’m teaching, I’ll drop something, and before I can grab my reacher, 2 or 3 students have jumped out of their seat to retrieve the fallen item. Every time it happens, I feel so appreciative to have such enthusiastic helpers, (especially on those days when there’s no shoving involved.)

One afternoon last year, after a student picked up a pen I had dropped, one of my more mischievous little girls piped up:

“Mademoiselle, do you live alone?”

“Yes C., I do.”

“Well, um, I have a question, but you might get mad…um,” she hesitated.

“What is it C.?” I asked, a little apprehensive of what she might say.

Smiling impishly, “Um…I was wondering…um…how do you put your pants on if you can’t bend down?”

There was a silent pause in the classroom, with all eyes on me. The thought that my students might be imagining me in my underwear made me blush scarlet. (If only I could get such attention when I teach French conjugation!)

“Well little C., I have my techniques, but I don’t think this is the place to demonstrate. Good connection though!” I laughed.

And with that, the whole class burst into fits of giggles, including me.

Just like C., I also am very curious to know how others manage. I’ve seen three occupational therapists for brief periods of time over the last 4 years and was surprised that they were inexperienced with my situation. Maybe because I’m at that in-between stage: weak, but not in a wheelchair. And that’s ok; so far I’ve been pretty successful in finding ways to do the things I need to do at home and at school. Outside of those two places, however, I sometimes feel like a fish out of water.

I wondered if someone had documented the tricks people with LGMD use. So I did a bit of research on the Internet and I discovered John (account name John71377 on YouTube) who has limb-girdle muscular dystrophy type 2A. He demonstrates with confidence and in detail such things as getting up from a chair, walking up stairs, getting up from the floor. (To my teacher friends: this last sentence wasn’t meant to sound like a report card comment )

It’s been fascinating to see that some of our techniques are quite similar. Like John, I rely heavily on walls, ledges, tables and countertops to accomplish certain actions. Locking elbows or knees, and using leverage and momentum have also become very important. Yet, we do some things a little differently. John is stronger than me—he can still get up from the floor!!!—but my gait is a little less conspicuous, maybe because I’m shorter.

Here are some of my tricks, including small modifications I’ve made to my home:

• My couch sits on blocks to give it height. But I don’t use it very often these days because my new rug is a bit slippery, making it harder to get up from the couch. I can still manage to get out of it by contorting my body into strange poses. Maybe I should find slippers with a better grip. Or maybe I shouldn’t. I’ve watched entire movies standing behind my couch while doing a little exercise. It’s been good for me.
• I’ve put two flat cushions on each of my dining room chairs to make them higher. The chairs are pretty heavy and they’re on a non-slippery rug, so I have no problem pushing against the chair, spreading my legs a bit, and gently leaning on the table to get up. I couldn’t get up if the chair slid or if I had no table to lean on.
• The pantries in my kitchen have been great. The shelves that are at the same height as my torso are the easiest ones to use. I can also reach up to the overhead cupboards by swinging my arm up, then resting it on the shelf as I grab a glass or teacup, and letting my arm fall again. My friend K. made me smile one day when he said I looked like an Olympic discus-thrower as I was putting glasses back into the cupboard. He exaggerates of course, but it was still nice to be likened to an athlete. When I have to reach up a little higher, I swing my arm, rest it on the first shelf, then walk my fingers up to the higher shelves.
• I use a reacher with rubber ends that look like suction cups to turn the knobs on my stove. (Thank you K. for that idea!!) I also have reachers that look exactly like the ones the school custodian uses for garbage-picking. I probably paid twice the amount for them at a therapy supply store, but mine have a little magnet at the very tip—very handy for picking up paper clips from the floor.
• I lean against the kitchen counter and rest my elbow (as a pivot point) on the edge of the sink as I wash dishes. My bathroom sink is also higher than average and I can lean against the vanity, elbows firmly planted near the sink as I wash my face. But I have to watch out if the counter gets wet and slippery.
• My toilet has been raised from underneath, which is less conspicuous than the ugly seats that are plopped on the top of a toilet. They’ve raised the staff toilet at school too, and some of my colleagues have told me how much they prefer it that way. (That makes me feel much better.) I don’t have any bars or handgrips by the toilet; I use the vanity next to it to help me get up instead.
• I put on sweaters and t-shirts or tie my hair in a ponytail by placing my elbows against a wall at head-level.
• I can even do a pretty good job drying my hair (thank goodness!), with one arm leaning against the wall, and my pinkie wrapped around a towel hook above my head while the other fingers hold the blow dryer. I use my wrist to move the blow dryer. I then swing my other hand up and somehow manage to keep it balanced above my head as I brush my hair. Maybe one of these days I’ll post a picture so you get the idea.
• I brush my teeth by resting the elbow of the toothbrush arm on the back of my other hand.
• My bed is pretty high, which makes it more challenging to get in. I steady myself with one hand gripping the dresser and the other resting on the bed. Then using momentum, I swing one leg up from behind me to rest it on the bed. I then lie down while grabbing my other leg and lifting it to the bed. I then wiggle my way away from the edge. It’s much easier to get out of my bed; I just roll off. That’s why I like my bed high. It’s also the perfect height for folding clothes and leaning against it to put on my pants!

What to do? What to say? How to help?

One sunny Saturday afternoon, feeling wonderfully relaxed after an appointment with my osteopath, I cheerily greeted a neighbour I saw in the hall on my way to my apartment.  When I commented on the beautiful weather we’d been having, he replied that he was moving quite slowly that day and hadn’t yet been outside.  “Not as slowly as me,” I quipped, thinking I was being funny.  My remark had quite the opposite effect.  Utterly embarrassed, he mumbled that he didn’t mean it that way, that he was so very sorry, even as I insisted that I was merely joking.   I haven’t seen him since.

It seems I have this new ability to make about half the people I meet feel quite awkward.  Even several friends with whom I haven’t been in touch for more than a decade, upon hearing the news of my affliction, continue sending me emails without ever acknowledging the twist of fate in my life.  I often wondered if they had missed that bit of news by reading my email too quickly.  But when one friend inquired about my health after she had heard the news from another friend (who I thought had read the email too quickly), I realized that some people feel so uncomfortable when they hear about my situation, they simply don’t know what to say and don’t mention it at all.

I find it all rather perplexing and funny.  But I can empathize.  I too have had my awkward moments when I don’t know what to say or do about another person’s (seeming) misfortune.  I remember one night in a grocery store, when I was still walking without a cane, I noticed a man zipping through the aisles in his motorized wheelchair, deftly grabbing cans and boxes from the shelves.  He seemed to be managing very well, but I wondered how he could get things that were too high.  I thought of letting him know that I’d be more than happy to help if he couldn’t reach something.  I kept thinking it the whole time I was in the store; but each time our paths would cross in the aisles, I was overcome with timidity and never said a word.  I wish I had, because I now realize what a relief it is when somebody offers to help…it’s so much better than having to ask.

It’s true that everybody is different.  Some (unlike me) have no qualms about asking for help.  Some people might look like they need help, but they actually prefer to do things independently even if it takes a little more time. Some even resent being offered assistance.  But I now think the risk of offending is trivial compared to the relief one can provide when offering to lend a hand.

In my case, I have found ways of doing many things independently.  I figured out how to use my weight and momentum to open heavy doors and how to wedge my cart to hold the elevator door open.  Still, I’m always happy if I can save a little time when somebody opens a heavy door for me or presses the ‘open’ button in the elevator.  Sometimes, my cart gets stuck as I’m trying to enter the elevator, and I see people looking at me uneasily, unsure whether they should help.  My friendly neighbour L. finally said one day, “I never know what to do when your cart gets stuck; is it ok if I help you?”  And I was able to answer that if she could help me move my cart gently—an abrupt tug could throw me off balance—it would be greatly appreciated.  And with that candid question, the oppressive awkwardness in the elevator evaporated into thin air.

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!