An Evolution of Mobility Devices (Part 2)

The week after I wrote about the thrills and chills of LGMD, my anxiety mysteriously evaporated.  Perhaps the iron and B12 supplements I had started taking had kicked in, or my body simply needed rest, or maybe I had dispelled my fears by writing about them.  In any case, it felt absolutely wonderful to be able to walk as fast and steady as a turtle again.

Getting a power chair no longer seemed essential, yet those three weeks of torment had chipped away at my resistance to owning one and I figured there was no harm in starting to explore my options.

So I arranged to meet with an OT at my home.  After bombarding her with loads of questions and sharing my own ideas, she suggested a specific chair that might suit my needs and took my measurements.  She said it would take several weeks before it was available for me to test.  In the meantime, she wanted me to try a couple of mobility devices that could make me safer in my home and arranged to have them delivered within the next few days.

When I got home the following Friday, I noticed a Nexus Rollator and a Guardian Walker (with flip tray) had been delivered while I was at work.  Although I was happy the supplier had come the day my cleaning lady was around to receive the delivery, I wasn’t too thrilled at the sight of the bulky contraptions crowding my small apartment.

When I tested the rollator, I found that it swivelled too easily, throwing me slightly off balance.  Nor did I warm up to the walker, a dull grey eyesore, half wheels, half mini skis, spoiling the aesthetics of my colourful apartment. On top of that, it made an irritating rattling noise when I tried to pivot it.  I doubted that I would purchase either one of these mobility devices.

I did, however, find the ugly plastic tray on the walker quite handy.  Instead of taking my regular detour around the kitchen, holding on to the counters and stove, I could now cut directly across towards the fridge and load the walker with several items at once, eliminating the need to do multiple trips.  It was also great for transporting the hefty omnibus of George Orwell novels, a gift I hadn’t got around to reading because of its unmanageable size.  And late at night, when my exhausted muscles were just about ready to collapse from the day’s wear, it was a relief to lean on the sturdy Guardian walker as I shuffled along the hallway from the kitchen towards my bedroom with my freshly microwaved therapeutic beanbag loaded on the tray.

After a couple of weeks, the reliable walker had become as indispensable to my daily routine as my heated beanbag, which keeps my bed warm during the cold winter nights.

Meanwhile, the rollator parked in a corner of the room remained forgotten until two days ago, when, feeling a burst of energy, I decided to test it out again by doing laps in my living room.  Back and forth I went, doing figure 8s on my laminate floor.  While it helps me with my balance, I can’t lean on it the same way I can on the walker.  As a result, I end up working my muscles a little harder.  And unlike the walker, the rollator can be used on rougher terrain.  I see it coming in handy if I want to do a bit of outdoor exercise.

I haven’t quite made up my mind, but I am leaning towards keeping them both.  Of course, I’ll have to jazz up the walker to fit in with the décor…a project I’m rather looking forward to.

Door Dilemmas

Going through the heavy doors that lead in and out of my parking garage was a process requiring precision and dexterity. And it was becoming increasingly more difficult.   Pulling the doors was harder than pushing them open.  I’d have to let go of my cart and place one hand on the wall to steady myself, then with my other hand, pull the door open using the momentum and weight of my entire body, then use my leg to hold it open as I repositioned my hand on the other side of the door, while maintaining my balance by applying just the right amount of pressure against the door as I wheeled my cart through the doorway, stepped across the threshold, straightened my stance, and let the door close behind me.  It was helpful when people got to the door before I did and held it open for me, but if they tried to help me by interrupting my delicate balancing act, it could get a little risky.

I thought automatic doors would be nice to have, but never got around to doing anything about it.  So it was with absolute joy and wonder, when out of the blue, as I was heading towards my car last spring, a lady from my building walked up to me to let me know that plans had been made to install automatic doors and that a woman called Penny would be contacting me to time me.

The day the doors were automated, I met Penny by the P1 elevators.  I felt like an athlete with my elderly and kindly coach as she held the stopwatch and measured the time I took to go through the first door, walk about 8 feet, then exit through the second door.  Coming back was trickier.  There was a parking cement block beside the entrance obstructing my path to the sensor where I needed to swipe my card.  So I would have to approach the door head on to get to it.  This wasn’t such a problem before, because a person about to open the door would usually see me through the glass window. But now, a person could press the automatic button at the first door, causing both doors to open simultaneously.  If I were unknowingly approaching the second door when they pushed the button, I could be knocked down.

The other problem was that I had to cram myself and my cart in the little space between the cement block and the wall to clear the way for the door to open.  It was awkward.  These automatic doors were turning out to be more problematic than the manual doors.

Thank goodness, Penny had a solution.  For $75, I could purchase a remote control to open the doors.  She suggested I borrow one from the management office to see if it helped.  So a few days later, I met with Penny again to try opening the doors with the remote.  It didn’t work.  We realized later that an ‘eye’ had to be installed first to receive the remote’s signal.

It took several weeks before the ‘eye’, as Penny called it, was installed.  Luckily, this all happened during my summer vacation, so I could simply avoid using the doors by staying home.  The few times I did go out alone, it was terribly nerve-racking each time I returned home and had to approach the outer door.   There was one close call, when the door started opening just as I was about to step into the danger zone, but other than that, there were no incidents.

Then I went away to visit my family and forgot all about the automatic doors.  I didn’t have to worry about them the day I returned because my parents were with me.

The next time I went out, I was with my friend Lisa.  We took the elevator to P1.  I pressed the automatic door button, proceeded to walk through the space between both doors, and just as I reached the second door, it started to close!  Even though Lisa was there to stop it, my heart just about flipped in shock.  Why was it closing so soon??

I was getting nervous.  School was about to start and the door problem wasn’t solved.

It turns out that while I was away, the building manager had requested the doors to remain open for a measly 13 seconds!!! But my worrying was pointless; the ‘eye’ was ready, and when I visited the office I was given a remote that was specially programmed to keep the doors open for the 37 seconds I needed.

The remote, which allows me to open the doors from a safe distance, has made my life so much easier!  For the first month or so, I was actually excited about my trips to and from the parking garage just so I could exercise its magic.  The novelty has since died down, but it is still hugely appreciated!

Little Helpers

As my muscles get weaker, my students become more helpful, more responsible, more aware.  Or perhaps it’s just that they have more opportunities to show their caring nature.  Every day, I’m touched by their kind gestures.

They eagerly pick up things I drop and jump out of their chairs to open or draw the curtains.   They volunteer to set up the art activities and clean up the mess afterwards.  They organize the cupboards and tidy up the storage bins. They offer to refill my glass with water, and fight over who can go to the office to heat up my lunch.  They bring my bell to me when the class is getting noisy and squeeze close to their desks, giving me space to move through the room.  They even lug the stepladders into the hall and spend their recesses putting up the artwork on the rock hard bulletin board.

And last Thursday, after I had stepped out of the class during my planning time and returned a few minutes later to a room full of lively energetic children milling about, fully engaged in a drama activity, my heart just melted when the kids who had noticed me cleared a wide path and started shouting at the others to stop moving so I could get back to my chair safely.

It’s a good feeling, being surrounded by so much enthusiastic kindness!

The Thrills and Chills of LGMD

Halloween is in the air, with horror movies playing everywhere, haunted houses luring in thrill-seekers, and radio hosts interviewing experts about “why we love to be terrified.”  Well I don’t like it one bit!  Yet dread and fright are my pesky companions every day.

The pitter patter of a joyous child bounding up behind me paralyzes me with terror as I brace myself for a possible hug that might send me tumbling to the ground.

Movement seen through the narrow window of the underground-parking door alarms me with such force that it takes a few minutes before I can recoup enough energy to open the heavy door.  But first, I wait until the hall on the other side of the window is so quiet and still that the chances of someone unknowingly flinging the door open and knocking me to the ground are reduced to a minimum.

Rainy mornings are a nightmare, when all the kids are ushered into the school, crowding the halls as they wait for the first bell to ring.  With heart-thumping trepidation, I make my way slowly through the throngs, my senses on high alert for swinging backpacks and jostling bodies.  Often, I enlist a few students to guard my frame and clear a path through the chattering herds. Even so, when I finally reach the refuge of my empty classroom, the anxiety has turned my legs to jello, making it another arduous task to cross the length of the room where I can plop myself down on my chair and breathe a sigh of relief.

Kind people attempting to grab my grocery cart when it appears to be stuck in the grooves of the elevator entrance elicit a panicky yelp “DON’T TOUCH!”. And after I explain that my cart keeps my balance, it still takes them a while to recover from the shock of being treated like purse snatchers.  Meanwhile, the adrenaline that has shot through my body has left me all quivery and teary-eyed, perplexing them further.

Even the wind rustling the leaves puts me on edge as I remember how violent gusts have slammed me against my car on more than one occasion.

But the worst of all is when fear itself, for no reason at all, takes possession of my body.  It seems to happen every autumn.  Halloween in the air indeed!  A month ago, I was carrying on with my daily routine with confidence.  Then from one week to the next, my body suddenly starts freezing up in the middle of the parking garage or in front of the school bus, too fearful to take another step forward, as if I’ve suddenly found myself at the edge of a vertiginous precipice.  Sometimes, a good samaritan seeing my distress comes and rescues me with a lending arm, but most often I have to battle the energy-draining panic alone.   My turtle’s stride slows to a snail’s pace and my confused leg muscles, forgetting how to walk normally, adopt the gait of a slow Quasimodo, with the right leg leading by a few centimetres and the other one dragging hesitantly behind.  I can barely swing my leg into my car, I’m so scared of falling.  The fear has even followed me right into my home, breaking through the serenity of my haven.  Just crossing from one edge of a doorway to another leaves me dizzy with fright, and I have to hug the walls like Spiderman to move through my hall.  When I finally make it to the sanctuary of my bed, my body is utterly exhausted from the day’s terror, in pain from all the tension, yet relishing the promise of a good night’s peaceful sleep.

Enough, I say!  An exorcist is on its way.  I’ve already taken the first step in the process of getting myself a POWER!-chair.

Infectious Attitudes

If you had passed by my classroom during recess last week, the sight of half a dozen little girls huddled around a table and cradling something tiny in their hands might have stopped you in your tracks.  You might have approached them to see what was causing the cooing and giggles, and squeals of delight.  What was the object of such sweet affectionate chatter? They’re so cute!  Oh, mine’s tickling my hand. Hihihi. This is so fun. Look at this one, it’s so small!  Can we take them outside to play, Mademoiselle?

You might have been surprised (possibly even revolted) to see unsightly mealworms crawling across their palms.

The first time I laid my eyes on a container filled with too many writhing larvae, it took a conscious effort to suppress the common reaction of repulsion.  Eventually, I came to view them as fascinating low-maintenance creatures, perfect for teaching the life cycle of an insect and the magic of metamorphosis; but I never touched them, always preferring to scoop them out with the reassuring distance of a spoon.  Until that special day last week.

It all started with Shannon, who came up to me one morning and whispered timidly in my ear to ask if the mealworms were slimy.

“I don’t think so,” I told her, “but I’ve never touched them.”

“Can I touch one?”

“Of course,” I replied, “but not now.  Maybe at recess.”

So at recess she came, eager to hold the wiggly critters in her hand.

The next day, during lunch recess, she returned with a following. Their enchantment with the mealworms must have rubbed off on me, because that very afternoon, as I was transferring the pupae into a separate container, I used my bare hands!  And I found myself as enthralled as my students—albeit slightly squeamish—by the tactile sensations of crawling mealworms and twitching pupae.

Amazing, I thought, how Shannon’s quiet fondness for the mealworms influenced her friends and her teacher, changing our perceptions from ‘eeew!’ to ‘cooool!’

It made me wonder how I might be influencing people’s perceptions of those of us who move differently.  If the feeling of awkwardness and the perception of ‘weird’ that sometimes arise were replaced by something a little groovier, it would make me very happy indeed.

Good luck? Bad luck?

Last week, a series of unfortunate, or rather fortunate events reminded me of the ancient Taoist parable about the poor farmer and his son who were working their land alongside their horse.  The horse was spooked and ran off into the mountains.

“What bad luck!” cried the son.

“Maybe, maybe not,” responded the farmer.

A few days later, the horse returned followed by a herd of wild mares.

“What luck!” exclaimed the son, “we will be rich with all these horses!”

“Good luck? Bad luck? Who knows?” answered the farmer.

The next morning, the farmer’s son fell off one of the wild mares while he was trying to tame it and broke his leg.

“How will I help you work the land now?  This is most unfortunate!” lamented the son.

“Hmm,” said the farmer.

A week later, the army marched through the village taking with them all the young able-bodied men, for there was a war.  The farmer’s son was left behind.

“So lucky!” congratulated the other villagers.

“Maybe.”

I wasn’t feeling very lucky a couple of months ago when I received a notification in my school mailbox informing me of a mandatory PD session I had to attend at the end of April.  Not that I have anything against Professional Development.  It’s just that going to unfamiliar places makes me very nervous.  And planning for a supply teacher is a huge hassle.  Also, a student teacher was coming to work with me two days before the PD day.  It just didn’t seem right to be abandoning her so soon after her arrival.

But I did as the farmer would have done.  I swept aside any unnecessary stress and impelled myself to go with the flow.  I carried on with my days, mostly confident that all would fall into place.

Two days before the PD session, I sat down with the student teacher to plan for my absence.  It was much easier than having to write everything down for a supply teacher.  She was excited to have the challenge of directing the day, and the supply teacher was very happy to let her take charge.  Things were looking better than I expected.  Even the grade 1 teachers who were feeling disgruntled after having attended the same session a few weeks earlier—a waste of time in their words—did not dampen my spirits. As for my apprehensiveness with the possible difficulties I might encounter at the banquet hall where the training was taking place, I reassured myself that my kind colleague Fernand would be there to help me.

When I called his classroom the next day to get his cell number in case I needed assistance from my car to the hall, the thin shroud of calmness I had worked so hard to surround myself with completely evaporated.  An urgent doctor’s appointment was taking precedence over the training, so he would not be attending.  Such bad luck!!(?)  What was I going to do??!

I might have railed against this vexing condition, fumed over my principal’s lack of awareness, ranted about useless PD days.   I could certainly feel the mounting frustration leading me towards such a display of misplaced anger.  So I coaxed myself into believing this situation was simply a test.  Could I choose a positive attitude, regardless of the situation?

Once I had relaxed a little, I called Elaine, a teacher from another school who was also attending the conference and whom I had met a couple of times.  It was my colleague Susan who had suggested I contact her if I needed help.  Of course, life would be dull if it wasn’t spiced with a little drama:  Elaine had already left her school and could not be reached.  So I called Susan on her cell, but she didn’t answer. By this time, however, I had regained a foothold on optimism and I was warming up to the idea of an adventure.  I would go alone, I thought, with no friendly safety nets in place.  What’s the worst that could happen?  A curb blocking my way, maybe?  A violently windy day?  Pffft.  No problem.  I could always holler for help if need be.

Just as I was all psyched up to go alone, Susan called (despite the fact that I hadn’t left her a message) and gave me Elaine’s home number.  It certainly made me concede to Abraham-Hicks’ philosophy—stay positive and you’ll attract positive situations.  It turned out Elaine lives a mere 5-minute drive away from me, so we decided to go to the banquet hall together—and what a delightful ride it was!  This was even better than relying on Fernand to meet me when I got there.  Good luck indeed!

The next day, when I returned home, I was elated.  I had learned a few interesting points during the conference; but more importantly, I had really enjoyed spending time with the convivial and thoughtful people at my table.  Elaine was always there to help me up from my seat.  Nidhi kept filling my glass with water and passing me snacks, books, pens, whenever I needed them, and Melanie carried my plate from the buffet to our table at lunchtime.  I felt deeply touched by their attentiveness.

That night, as I was tidying up my kitchen and chuckling to myself about how I had dreaded this day, my leg twisted, and as I pitched forward, I could see the edge of the wall hurtling towards my head. . . a split second of terror, and the next second…I somehow lifted my arms to the wall and caught myself from falling.  WOW!! I AM SO LUCKY! I laughed out loud.  The farmer would have said maybe.  But I continued walking on smugly, congratulating myself on a great catch.

But there was no escaping fate. Two minutes after the close call, I lost my balance again.  It was a good fall.  It could have been better had I not banged my temple against the chair.  Or maybe not: the chair did stop my head from hitting the ground, allowing me to end up in a sitting position and get to the phone faster—I had dinner simmering on the stove and didn’t want all my hard work cutting up veggies to be reduced to ashes.

As I was scooting across the floor to call my neighbours, I was reminded of how I had neglected to find new emergency contacts.  I had known for a couple of weeks that Laura and Andrew were leaving the building, and I still hadn’t come up with another plan. Their moving date was in two days.

Laura answered.  (Unfortunately) her husband was not home to help me, and I knew she wouldn’t be able to lift me up, being 8 months pregnant.  She came anyway to turn off my stove.  We then thought up possible solutions to get me back on my feet.  She offered to get a friendly neighbour in her end of the hall, but I thought it might be a good opportunity to take Mario up on his offer.  He had startled me, one day many months ago, when he addressed me by name as we were chitchatting in the elevator.  When I asked how he knew my name, he said that he had inquired about me at the management office because he was concerned about my safety, especially since the new neighbours across from me had had some pretty violent fights that had spilled into the hall.  The thought that strangers were looking out for me had really warmed my heart.

Laura went to get him across the hall.  A few minutes later, he had lifted me up and given me his number in case I needed his help again.  He told me his wife worked from home during the day and he was always available in the evenings, and that I should never hesitate to call.

The perfect end to a perfect day.

Good luck or bad luck?  The PD day, Fernand’s absence, the fall, the bruised temple, Andrew being away…it all turned out positive.  The winning streak goes on.  I’ll try to keep that in mind as September approaches. I’ve been assigned a split-grade—a teacher’s tragedy—for next year.  I was devastated by the news at first, but now I’m thinking, it might not be such bad luck after all.

An Evolution of Mobility Devices (Part 1??)

A while ago, a mother with LGMD wrote that she was hesitant about getting a cane because she didn’t want her child to be embarrassed by her.  I’ve had my share of senseless self-conscious thoughts, so I completely empathized with her.  Yet, I thought it was funny how differently we viewed the idea of using a cane.  In my case, I considered using one so I would feel less awkward.  I supposed a cane would send the message that I wasn’t climbing the stairs slowly to annoy the people behind me and that the exaggerated hip movement that comes with LGMD was not a daft attempt to strut my stuff.  A cane would also signal others to give me space in crowded areas, because although I still walked steadily enough, a slight shove could topple me over.

So I started eyeing canes wherever I went.  I noticed the dowdy quad canes and fancy wood sticks, the plain aluminium canes, the cuff crutches, walking sticks with wild psychedelic patterns and attractive clear Lucite canes.  When I walked through the aisles of drugstores, I surreptitiously tried them out, feeling a little strange as I held them and completely clueless as to what would work best for me.  I always left undecided and empty-handed.

One evening, while waiting for my physiotherapist at a rehabilitation clinic, I commented on the nice copper colour of another client’s cane and asked her where she got it.  She told me that after her car accident she needed two canes to get around, but that she was feeling stable enough to use only one now and that I could have one of hers if I wished.  I offered to pay for it, but she insisted that I have it.  My physiotherapist adjusted the height and that very night I went home, the unfamiliar cane in hand, and relieved that I no longer had to dwell on the myriad of available choices.

I felt a little odd when I walked into my classroom the next day with a walking stick.  Thankfully, the students didn’t fuss much about it.  I imagine they assumed that I now used a cane to avoid falls like the one I had had in class a week before.  And it proved useful to point to the maps and wall charts.

As time went by, I came to depend completely on my cane, until that fateful autumn, a year and a half later, when my stick no longer did the trick.  Open dark spaces like my parking garage were starting to elicit shaky panicky feelings from my body, and one day, my body won over my mind as it refused to step away from the comfort zone beside a wall or piece of furniture.  My doctor thought the rather abrupt change was caused by exhaustion and work stress so he prescribed some time off, which is what I needed to devise a new system to get myself back to work.

An occupational therapist visited me and suggested I get a power wheelchair—a complicated solution that created the additional unsolved problems of getting through the doors of my building and finding the appropriate transportation to lug my chair to school.  We tried a walker, but it was too bulky to manoeuvre through the heavy doors.  And finally I decided to try the grocery cart my friend Ken had given me as a gift some time ago. My cart is not sturdy at all, and yet, with both hands gripping it, my body is tricked into believing that I’m much safer than I would be with a cane.  I had never used it before because I was afraid of getting knocked down by the closing elevator door if it got stuck midway through the elevator.  So Ken had the bright idea to let the elevator door slam once against my cart to give me more time to enter.  With a little practice, I also found a way to keep the heavy building doors open with my leg while I wielded the cart through the doorways.  It required some tricky turning movements from my body, but it worked. Yet the sound of approaching footsteps always causes my heart to lurch with anxiety.  That a person in a hurry might neglect to look through the little window and open the door while I’m on the other side is constantly at the back of my mind.  Even if they open the door to help me, as I’m still holding on to it, I can easily be thrown off balance.  Luckily, the few times it happened, I was able to catch myself just in time.

It didn’t occur to me that I might have the strength to lift the cart into my car, so I always left it behind in my parking spot.  I came home a few times to find it repositioned.  According to my parking neighbour, a lady had been borrowing it.  He assured me that he had admonished her for taking it and had explained to her how I depended on it.  I didn’t really care that somebody borrowed it as long as it was there when I got back from work and that it was in good working condition, but I was grateful to him for watching out for me.

Looking back, I find it astonishing that for 6 months I relied on the arm of a colleague or the shoulder of a student to get to one distant wall from another.  Only once in a while, when the hall was empty, would I cross it alone, with the trepidation and cautiousness of a tightrope walker.

Of course, the sensible thing to do should have been to keep a walker at school.  Yet, I simply could not reconcile myself to the image of my body ambulating behind such a device.  Be it vanity or the fret of feeling like an old woman, I continued to stubbornly refuse my mother’s advice to bring a walker to work.  And I was absolutely mortified, when one spring day, the principal rolled one in while I was in the midst of a lesson.  My mom had dropped it off in the hopes that once it was at school, I would get over my hang-up and see how practical it could be.  And maybe with more time, I would have come to my senses and started using it.  But summer came quickly enough and I never touched the walker.  My students, on the other hand, had a hoot scooting around on it.

Soon after school ended, I loaded my little cart with a week’s worth of clothes and headed to the parking garage.  After I was putting my bags in the back seat of my car, I started feeling uneasy about leaving my cart behind for an entire week.  So I collapsed it and attempted to lift it into my car.  Ha!  It wasn’t difficult at all!  A little cumbersome, but it’s gotten a lot easier with practice.

Since then, I always take it with me.  Unless the weather is bad, I no longer have to call someone to meet me at my car when I arrive at work.  My very practical mother also had the great idea of putting the wire basket from the walker on top of the cart.  I put it on when I come to school, and take it off before I leave.  It’s the perfect height—much higher than when it was on the walker—and great for transporting books, notebooks and school supplies.  To finally be able to walk around the school and lug my stuff around with me, without having to depend on anybody, has been absolutely wonderful!

The cart is easier to manoeuvre between desks than a walker—although certainly not as safe—and I love the fact that I can lift it into my car.  However, it’s definitely not any more stylish than a walker.  But as time goes by, survival and freedom are surfacing as top priorities in my life, while my preoccupation with how others might perceive me fades slowly away into a disconnected memory.  When I pass staring youngsters in the hall, or parents who avert their eyes uncomfortably, I actually feel the slightest tinge of amusement.  And when a little boy asked me why I went everywhere with my cart, I simply gave him some quick facts—I have a muscle problem and can easily lose my balance if I don’t hold onto something—and I got a good laugh when he said innocently, “But I thought only grandmothers used those things.”