The Law of Inches

Like many people with unique lived experiences, I volunteer much of my time telling others about my perspective around accessibility and disability.

I have had the pleasure of meeting the most interesting people who also share their stories. Like any equity group, no one opinion represents the group.

In one discussion, a visually impaired man told me how those who are blind and use a white came or guide dog follow routes from memory. So when something moves, like detours during construction or menu board on a sidewalk, it completely disorients them. 

Makes sense. If you're going by memory, counting steps or guiding by surface. The things non-blind people wouldn't consider.

It's similar for people with FSHD as we progress in our disease. Although I think it makes less sense to non-FSHers because an inch literally can make the difference between completing a task or not.

There's an assymetry to the disease so muscles weaken in different places at different times at different extremes. It often feels like walking on marbles or on a tight rope. One inch one way or another and that muscle group collapses.

It's the same with furniture, clothes, dishes and everything else in daily life.

I know some who use masking tape to mark off where everything needs to be, how wheels on a wheelchair needs to line up. Her whole house is marked up with lines.

It adds a whole other level of constraint. Not only for the person needing everything to be just so. But, for the people around them. 

I know it's hard when you are caring for someone with FSHD. Their inner strength, resilience and problem solving don't align to what might look like OCD or just being too demanding.

I hope you, as someone who is around someone with FSHD, will fire up your empathy and patience. 

Trust that the Law of Inches is about independence and freedom.

Disneyland Part 2 - The Reality

As I wrote in my previous post, my trip to Disneyland with my nephew was planned out well. The itinerary, the transportation, the company.. all good.


I had planned to spend the first day calibrating myself. Doing the walk around Disney and determining what, if anything, I would need to assist me. The other aunt decided that we should just rent the scooter provided at Disney. The truth was, everyone rented those scooters. Disney is huge! So what was the big deal?


I didn't think the experience would be as jarring for me as it was. I have always tried to prepare for mobility assistance as an inevitability to avoid such a moment. But I guess you just never know how you are going to react when actually in the moment. The scooter was easy enough to handle and thankfully my nephew loved riding around in it. But, I caught my reflection in the window and just couldn't believe it. What was I doing on this contraption? I shouldn't be using this, should I? The reality was, I would have struggled walking the whole park on my own. Even using the stroller to keep me balanced, it would have been tough. Why did I want to struggle if I didn't have to?


I thought it would give me freedom. But for the first little while, it made me feel trapped. Like I was trapped in a body and in a life that wasn't right. I thought I was over all that. But I guess it is a reminder that FSH comes in phases and with every phase, you have to go through another emotional and physical adjustment.


There were so many places I couldn't get into. So many things I had to imagine instead of experiencing. And the worst part of all, the new reality that not only was walking a problem, but I discovered a whole new set of limitations: no rides that were too low or too high, no standing in line because my nephew needed to be carried which I couldn't do, no swimming with him since he needed to be held, no giving him a bath or brushing his teeth because I couldn't kneel and the worst? No big bear hugs from my nephew while I was standing because I would fall over.... which I did. 


So was that it? Was that going to be my memory of The Big Dream?

Disneyland Part 1 - The Big Dream

I just returned from my dream trip to Disneyland. A dream trip because I had the chance to plan a wonderful week-long adventure with my nephew. 


I love that kid.


But I also wanted the trip to be really memorable for a number of other reasons. I needed to do this trip while I still could. I wanted to be able to be mobile and create a fun experience with him that I would never be able to share with my own child. I also wanted to do something memorable with the last of my adoption money since the adoption wouldn't be completed.


I suppose to some that would seem a frivolous way to spend the money, but I really needed to do this. I needed to have that memory and I needed him to have a memory of me that was "normal".


I planned the trip sparing no expense to ensure the trip was easy, given the limitations with FSH. I knew I would never be able to take him on my own as he has more energy than a flock of rabbits. So his other aunty came along. Thank god for her! She is a very kind person who loves him as much as I do, so I knew this would be a great experience for her too. 


I insisted on paying for everyone as I felt I had to have that independence and ensure I didn't feel like a burden. I guess that is something many people go through with a disability. It also gave me this great freedom and euphoria to be able to get him anything he wanted and do whatever we wanted to do.


We had a week of fun and we packed it! Disneyland, Knott's Berry Farm, Legoland, Seaworld, all the swimming he could handle, parks and movies every night.


I don't think I have ever laughed so hard. Kids are so amazing and this one has a sense of humour you would not believe.


I had lots of advice from friends with FSH and friends who had been to Disney. I myself had been to most of these places a few years ago. I didn't realize what a difference a few years could make.


Therein lies the second part of this post - The Reality. Reality comes and gets you every time. The question is, would it be enough to knock me off my game?

The "Whys"

You've read my posts about my nephew and my new niece, they joys of my life.

The first three years of my nephew's life have been amazing for me. I wish my condition didn't progress while he ages, but it is. I am able to do less and less with him. With my niece, I am doing even less. But I have enjoyed everything I have been able to do with them, and continue to try and create unique experiences for them that remind them of fun times with their auntie.

My nephew seems to be getting smarter and more active at a much higher rate than his years would indicate. I think I have mentioned he can knock me over with one of his tackles. At three years old, he plays hockey, lacrosse, baseball, gymnastics and he skates and swims. He has boundless energy and an amazing spirit.

He also has a soft soul and knows when things aren't quite right. In the last year, as my leg and core muscles have weakened more and more, we can't rough-house the way he likes. I can't carry him and I can't sit on the floor and play with him. I would say, 'we have to be gentle because auntie's muscles are broken.' He tries to be careful, but I sure hate spoiling his fun.

Now that he is becoming more articulate and perceptive, he asks, 'Why? Why are your muscles broken?' Every adult knows kids are full of 'whys'. Why this, why that... how do I tell a three old why my muscles are broken and why I can't fix it? Why I need a cane. Or why I need a wheelchair. I guess it is everyone's instinct to want to protect a child from the cruel lessons of life.

But I am hoping if I can explain my story in a way he will understand, it might make him more compassionate and considerate of people who are different than he is. Hopefully, it will make him understand we all have special skills and when God may take one thing, he gives you something else and it's important for all of us to try to find that something else. Not just in other people, but in ourselves.

The Corporate Ladder is Wobbly

The climb up the corporate ladder can be a tricky one full of tough decisions, sacrifices and surprises.

I have been working in the field of Public Relations and Communications for over 20 years. I started soon out of high school because I was so determined to be successful and all I wanted to do was work and high-tail it up that ladder.

Things were going well. I conquered every challenge, jumped from position to position with greater success in every move. It was like a chess game and I was poised for a win.

Then life got in the way. On came the usual speed bumps that come along in the journey of life, put there to slow you down, humble you, or maybe test you to see how determined you really are. It's true, nothing worthwhile comes without a fight.

For me, things happen in multiples. Like fate took a nap, suddenly woke up and realized life might have been going to smoothly for me. Then boom.... relationships went sideways, work became more frustrating than challenging and of course, the health bombshell. That's enough to knock anyone off their game.

But I chose to pick myself up each time I got knocked down and try to move on. It's hard. Very hard. Emotions can totally skew reality.

I did so much soul searching and navel gazing and finally found the ability to cope.

But fate is a funny thing. Testing you, always testing you...making you push harder up that ladder not just the corporate ladder, but the life ladder as well.

I was recently promoted at work. The position is a critical part of the leadership team and comes at a time when the organization is experiencing significant change and threat to its existence. I was asked to speak to a group of young business professionals on reputation management in these challenging times.

I hate speaking in public.

I have been told I am an engaging and passionate speaker. But I don't see it. All I see is the floppy form my mouth takes when I try to speak; the slow way my large eyes blink; the high cheekbones that create huge shadows under my eyes; the crooked way I walk; the lazy way I sit and the awkward way my arms move when I am trying to animate my presentation. All I see is the FSH Muscular Dystrophy that I am trying so hard to conquer.

My discomfort for public speaking grew to an absolute aversion to anyone looking at me. How in the world can you succeed in a career where your public face and communication style IS your job?

I put my fears aside and channeled my positive energy into blowing past my fears and making an outstanding presentation. I went to the venue early, networked with the participants to make it easier, made my notes and visualized the presentation going off flawlessly.

Then I saw the stage. No handrails to get up to the stage. One hundred people, including the leadership team of the company I work for (most of whom to do not know I have FSH) watched me as I stood paralyzed at the foot of the stage. I had to ask the moderator to help me up and there was no way to do that in a subtle way.

I tried to be graceful and joke around, regroup and focus on the presentation. I started speaking and all was well, until my words started jumbling. It was like my mouth was purposely using words that were easier to say rather than the words I meant to say. Damn FSH! Needless to say, I wasn't as articulate as I would have liked, but thankfully the words my mouth chose to speak didn't create a PR disaster.

I was devastated. My expectations are very high, too high for the average person and way too high for someone with a disability. I have realized success is more about setting the right expectations, not lower ones but realistic ones so I can continue to succeed up the ladder. I also realized I should stop beating myself up about it since the two able bodied speakers were so nervous that they almost didn't get through their presentations.

I guess it's time to move to goal posts and try and claim victory. I still have to figure out how to be the public face of a company when I don't want people looking at me. I am not sure it is even possible. I have never seen a corporate spokesperson with a disability who wasn't speaking about disability issues.

The Blanket - Part One

As the new year rings in, I am giddy to spend it not working. Well, not working at my job anyway. Like many people, I chose to take a couple days from my week off to organize my house which seems to attract clutter like a high powered magnet.

Not as easy as it sounds when you can't bend down without the risk of falling over, or get up without help. But I was determined. Not only to organize all the 'good deals' I have picked up in anticipation of 'something' that might come up, but to finally be able to see the floor of my den. In the midst of deciding if I should keep the collection of audio cassettes circa 1980 and cheetah print candles, I came across a soft, delicately woven baby blanket.

I knew it was there. I was hoping not to see it until the end of this cleaning frenzy, hoping to be too tired to think about the blanket and the story behind it.

It was given to me around five years ago by a dear friend of mine. With four grandchildren of her own who brought her copious amounts of joy, she created this loving blanket upon hearing of my decision to adopt a little girl.

For someone with FSH, there are a few topics that are common points of anxiety for both men and women, having children is one of them. Having them or not, testing them or not, telling them or not. It took several years of anxiety, analysis and emotional pinball for me and those around me and it was the reason for the end of several relationships.

My own feelings evolved from, "I am going to leave this to God's will" to "I can't put a child through this" to "I can't put myself through this" and "I can't keep my child safe".

I went from the idea of a natural pregnancy, to an IVF pregnancy with PGD testing, to surrogacy - foreign and domestic, to adoption - foreign and domestic and finally to not being a mother at all.

This will be by far the hardest post I will write since it is has been the hardest part of my journey.

The Fire Drill

At some point in the life of an FSHer will come the inevitable moment when the cat jumps out of the bag. The quiet and mysterious condition will slowly start to make itself known and the journey takes a sharp turn.

The closer the people are, the quicker the transition comes. But often, it is when those not as close to you find out that it becomes much more difficult.

For me, a surprise fire drill at work seems to be the game changer.

It happened a couple of days ago around 10 am. I used to get a heads up from the Emergency Operations Coordinator who would quietly come to my cubicle and suggest I go for coffee. His wife was one of my colleagues and the six people in my department knew about my "secret". They retired last year and the HR Manager and Operations Manager, who also knew about my condition for safety reasons, forgot. Guess that's the thing with FSH, it doesn't show until the condition has progressed significantly and then it seems to catch people off guard. But as the person feeling each strain, each burn of the muscle as it deteriorates, it feels like you are slipping off a mountain and that point when others find out is when you land on your butt.

The shrieking sound of the bell meant I needed to walk down the three flights of stairs to the plaza. Three long flights on concrete steps with people rushing behind me, and me side-stepping down the stairs with my legs starting to feel like jello. The president of the company walked behind me and asked what was wrong with my leg. I brought out my usual humour all of us seem to have and made some comment about my job being hazardous to my health. He laughed, but you could see the concern in his eyes. He is a lovely man and I am sure would only be empathetic to the situation. But we are in the midst of budget cuts and restructuring and who wants to put their hand up and say, "hey over here, I am a liability to your bottom line."

My co-workers flanked me as they always do, such lovely people. But I guess this is going to have to come out to the masses sooner rather than later. Now I am on the radar and questions are being asked, "What's wrong with her?" Being in a high profile position doesn't help. Although I am fortunate to work with people who are very understanding and compassionate, it's my clients I worry about. How do you stand up with conviction and argue a point when you struggle to stand up?

The president's on vacation now, so I have a few weeks to gather my wits and find a clever way to reveal the truth without all the scary words that go along with this explanation. Wouldn't you know it, just as my star is on the rise here, a sobering dose of reality hits me. But, I am not ready to fall just yet...

A little more about scapular fusion

I mentioned in a previous post that I had undergone scapular fusion surgery. I was fortunate enough to have one of the best orthopedic surgeons in Canada working on me. He had such a long wait list, and I had just a demanding job, I had the left shoulder done 12 months after requesting it, and the second one done nine months after that. I wanted to make sure if the first one didn't work, I wouldn't have to get the second one.

I waited about five years after learning about the option before I did anything about it. The moment of certainty came on an evening when I was sitting on the floor of my mosque praying. I couldn't hold my upper body up and I had the most wrenching pain in my shoulders and neck and I knew I couldn't stay like this when there was an option.

Then the day of my surgery came. I hadn't seen the doctor in 12 months and when I was wheeled into the operating room, I didn't even recognize him. I started crying uncontrollably and I had no idea why except this strange man was about to change my life.

He turned out to be my hero.

After the two-hour surgery, I awoke not feeling anything in my back or hip where a bone graft was removed. My nerves had been cut, so I guess that's partially why, as well I had a thin tube which pumped out morphine inserted into the incision on my back.

The wound had been stitched for the first surgery and stapled for the second. The scaring was relatively the same for both. My lung was 'nicked' during the first surgery which caused some pressure and pain. Thank god they didn't have to go back in, it just sorted itself out.

I was surprised that there was no cast, just a fabric sling. No rehab, just my own exercises which involved making circles with my arm like I was stirring something.

The biggest challenge physically was getting up. Very tough when you have weak core muscles and stitches in two parts of your back. A recliner would have helped, but I managed ok. Pain management was simply Tylenol 3's and scar management was Vitamin E oil (although now there is a great scar product called Mederma you can use).

After the surgery and the six week recovery, I was able to move my arms and my shoulder blade didn't stick out anymore. I could now get items off the shelf, wash my hair and actually raise my arms. It was liberating.

The biggest challenge emotionally was making people understand the surgery was not a cure, just something to help manage the problem. No one quite understood that, but then I guess it's tough when you don't understand the condition to begin with and don't really want to (I'll touch on denial in another post).

I don't regret my decision even though it meant very large scars, shoulders that are a little broader and slightly uneven. Even though, as my doctor reminded me, fixing one thing will eventually cause another issue. That issue seems to be with my upper body now feeling a bit heavier and straining my core muscles.

All in all, it was a great trade off.