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?)