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.

Finding inspiration in the most unexpected place.... my blog!?

Well if that just doesn't beat everything. 

After a wonderful catch up lunch with a friend who shared his blog with me, I was reminded about this old thing! 

Clearly, I've been neglectful of late. It's not due to lack of events or epiphanies. Just mostly a lot of navel gazing in between trying to live instead of just surviving.

Going through my past posts, I remembered what a comfort writing was. How much I loved being 'in the zone' and letting my thoughts, emotions and beliefs just flow cool breeze on a hot day.

Lately, I feel more like I've been in a storm. Thoughts and emotions just whipping around like leaves, broken branches and patio furniture. The rain pelting down every which way feeling like little sparks on your frozen skin, thunder like god is trying to get you to understand something crucial and the sharp veins of ightening to remind you of a power beyond you. And, when it's over,  there's a feeling of rebirth in the calm and hope when the sun takes the place of the dark clouds.

Then I remembered: I love storms.

I don't like long posts. So stay tuned for a few more posts on the more stormy parts of my FSHD journey.

I will leave you with one bit of advice : start a journal. 

Record it, write it or film it. Just do it. You have a great story to tell, even if you think you don't. If you have a journal, take time to go back and read it. I had myself in tears reading about some of my own stories and it reminded me of how much I've been through. It made me grateful but also made me realize how strong I was during difficult times and that I could I be strong again. 

Are they failing me, or am I?

I'm writing this, lying in bed for the sixth week in a row. Once again, humbled by my FSH. This time, a fractured bone and a fractured spirit.

While I deal with the realities of the disease, I would normally be grateful for getting away with a minor break and the ability to work from home. Possibly even steal away some time for last minute wedding plans.

But I find myself dwelling on the fact that my latest fall practically had people around me walk over my blob of a body. They probably thought I looked ok so I must be ok.

Or the guy who pushed me out of the elevator because he was in a hurry. He probably thought I was just there as another hindrance from him catching his bus, not that I was walking slowly because I was petrified of losing my balance and falling again. So terrible that he might have been late.

Is it me or are there way more people who are walking looking at their phones, no regard to the people they are knocking over. A quick 'sorry' but please, I need to return this text.

Or those who don't think I am fun because I can't play sports, or do all the things that they do so easily. They think I should toughen up. They say if my mind and spirit is strong I can do anything.

I used to say that to people, but now I know your attitude can't fix what's wrong, only how you handle it.

I wake up trying to inspire, trying to lead, trying to be strong, trying to help others. But,  I am getting tired of my own rhetoric and others are tired of listening to me explain what I am going through.

Maybe I need to give myself a break, we all need to do that. With a stressful job, health issues, financial challenges and a wedding to plan, re-plan and re-plan. I think I will take the time to reset my goals or maybe move the goal posts a little.

What a year.. with the best yet to come.

This has been quite a year, hasn't it? I wanted to thank those of you who sent your kind thoughts and expressed concern around my last post. The boyfriend is doing well, physically anyway. Unfortunately, his recovery has made him restless. I wonder if that is the worst thing, the inability to do the things you want. Even the most basic things. The experience made me wonder about how much longer I have the ability to do what I want.  

In the last few months, I have seen the FSH progress more rapidly in my body. Or at least it feels like that... the same as when you get to the end of a roll of toilet paper. The end seems to come faster than ever.

I am struggling more now. With stairs, chairs, cars, you name it. It feels like parts of my body are clamped with a vice. But I would take that over the parts I can't feel at all. Nothing worse then not being able to will yourself to move.

But on the upside, and there is always an upside, I am happy. This is the time of year we reflect and as I do so, I can only see the support of my friends and family, the beautiful children in my life who remind me of less complicated days and the many outlets of hope and happiness I have discovered.

In the midst of change, I have chosen to take on an advocacy role with my FSH. This is the time where fear has no place. For all those people with FSH like me who have spent time quietly hiding their condition hoping if they didn't say anything no one would notice, I want to let people know of this condition. I want to let people with FSH know there is nothing to be ashamed of. The more mainstream we make this condition, the easier it will be to live with it and more importantly  find a cure.

This leads to the theme of this post, hope and a future without FSH. We are getting closer. This recent partnership between Fred Hutchinson Cancer Research Center and GlaxoSmithKline to develop therapeutics for FSH is a huge step in the right direction. There is no more 'if' for a treatment, now it's 'when'.

I will continue to write in the new year and continue to find new ways to spread the word. I'll keep you posted as this is a journey we share together.

Disneyland Part 3 - The Opportunity

There are five stages of grief include denial, anger, bargaining, depression and acceptance. I am fortunate to be able to get through these stages quicker as time goes on. It's an important part living life to the fullest. 


I supposed I should be happy I passed through the stages well before the end of the trip. Having FSH does make one resilient.


I like to think there is a sixth stage which is opportunity. I want to believe something positive can come out of every experience. 


When I look back on the trip, I can only see my nephew's smiling face, his infectious belly laugh and his passion for life. He inspires me every day and reminds me happiness is a simple formula and I am so grateful for that.


The experience made me feel like I made the right decision not trying to raise a child on my own at this stage of my FSH. I am glad I spent the money on this trip because it is a memory I will cherish forever. I am glad he adapted to my circumstances and found ways for us to share our own special things that weren't as physical, I think it will make him a more compassionate person. I am glad to have one more adventure to look back on.


Maybe this experience was like 'dipping a toe in the water' to get a taste of what the next stage of immobility would be like. One thing is for sure, I am getting a sleek, red scooter. If I am going to get one, I better look good in it.

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.

Success is in the Buckets

I have been thinking a lot about my last post and what I wrote about how foolish I thought it was that people think 'you can do anything you put your mind to". Sounds pretty negative and very un-zen-like, doesn't it? So I thought I would clarify.

I do think there are some things you can achieve with hard work, passion, commitment and determination. And there are some you can't. It's the absolution component that troubles me.

The reality is, life is made of three buckets where your successes live. Bucket One contains the things you have control over. Bucket Two is where you put things you have some control over. Bucket Three is for the things you have no control over.

This was a lesson taught to me by someone on our company's leadership team. It was a lesson on managing expectations and creating an environment where you can actually succeed. I think the theory is as relevant for life situations.

I wanted to be in advertising and I went after it and did it. I wanted to get my accreditation in PR and I worked hard and I did it. I had control over these things. I found a way to get the money, worked through the time commitment and worked hard to do well.

I also want to be able to run, to skate, to dance. But my FSH is in the way. Weakened muscles, a foot drop and I don't even know what to say about my ankles. But, right now, I have no control over those things and so I can't achieve what I would like. This is Bucket Three. (By the way, I hate Bucket Three, but it's part of the buckets and so there it is.) Now I have a choice. a) I can kill myself trying to make this go in Bucket One. b) I can redefine the goal based on what I can control and achieve a different success. Or, c) I can take comfort in releasing the pressure on myself for something I can't control and can't change.

I use the word comfort deliberately. It takes awhile to get there because it feels like defeatism at first. No one wants to accept they don't have complete control over their life and can't determine their own future. People who think that will find it very challenging to accept life's natural course of evolution. People get sick for no reason. People die unexpectedly. Things happen we can't understand. When you accept what bucket things are in, it is a liberating feeling and actually puts the control of your success back in your hands.

I leave you with this old quote, that is as true today as it was when I was a little girl reading it on my grandfather's wall:

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."

Or the modern version:

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to hide the bodies of everyone I killed who pissed me off."

Flip Flop...Stop...?

In the early part of my career I was called a 'flip flopper', 'job jumper', fickle and utterly lacking in focus and commitment. All this because I moved from job to job every couple of years.

Now, anyone in PR and Communications will tell you, that this is very typical in our industry. It is a high adrenaline game with many disciplines to focus on. To do well you need to thrive on challenge and keep raising the bar on your own success. These are the same qualities that make you 'flighty' to some.

This industry trend has evolved into more of a generational trend and has become an expected outcome for an employee relatively new in the market. After all, it's about the journey not the destination, right?

I have come to learn far too many people underestimate the value of the destination. After all, what's the point in getting somewhere if you can't appreciate it when you get there?

The question then, I suppose, is how do you know when you have reached your destination?

I wrestle with this now as I am at a junction of my career where I can take it to the next level. In a previous post I wrote about my climb up the corporate ladder and some angst around being promoted to managing a team.

To be honest, I had almost given up on moving up in my current company given the economic climate and the fact that I had this monkey on my back called FSH. I was learning to make the most out of the steady nature of my job and try to use the time, and lack of stress, to pursue other life ambitions.

Now here I am in this new role which was like being thrown back in a cold pool after lazing around on the beach. Don't get me wrong, my instincts kicked in and I threw myself right in - looking for the quick wins and planning a legacy. I really enjoy breaking new ground and most of all, I really enjoy leading a team. Motivating them, nurturing their skills and watching them succeed. I think I hit that point in my career where helping others achieve their goals has become one of mine.

But is 40 too soon for that? Even for an over achiever like me? Or is 40 just the right number when you have a disability and are not sure how much longer you can keep working? When is the right time to stop flip flopping for a new line on the resume?

So all this brings me to my dilemma. Of course it is FSH related. Way too many of my dilemmas are. Yes, I need to work on that... but for now, here it is.

Several new speaking requests have emerged after my last speaking engagement. I feel like I barely made out of that one alive. Can't I just claim victory on that and move on to something else? Apparently not, as speaking and being the expert in something is 'the next thing' to do to increase your profile.

I spoke to my brother about it. He is a gifted and confident speaker (and athlete) and foolishly thinks people can do anything they put their minds to. What the hell is wrong with him? I once foolishly thought the same thing. But a person who can't walk, just can't walk. Not at that moment, anyway. You can kill yourself trying to swim upstream, or get to where you are going by navigating the natural current. Sure, you might get stronger the other way, but you won't have any energy left when you get there.

So he tried to give me a kick in the butt (we all need that some days) and motivate me by telling me that it was the best thing for my career and I was going to get bored of this job soon enough, who not set myself up for a new challenge.

Like my life isn't challenging enough.

He means well and perhaps if I had heard the 'you can do it!' cheer in the formidable years where FSH stripped me of my confidence and self worth, maybe I would see this as an easier road to navigate. But, right now, fear grips me. Changing jobs again? What was once sport for me, is now paralyzing. I am scared to move for fear that FSH will swing another blow at me before I am eligible for disability.

For my American friends who often talk about the horrors of navigating through medicare and the US health insurance providers, we are much more fortunate in Canada, IF we outlast the waiting period making us eligible for Long Term Disability. It's usually only a couple of years. While that seemed like no problem when my condition was in the early stages, but it's staring me in the face now.

So now I need to decide what to do. Take a deep breath, gather my strength and continue the journey (whether for my next job or just mastering my presentation skills for the sake of conquering a fear and breaking boundaries) or do I just enjoy the destination?

The Blanket - Part Three

Hoping this is the last post under The Blanket series of posts.

Today I welcomed my niece into the world. She is beautiful and entered with so much sweetness and charm. A friend told me she believes cute babies are nature's way of encouraging people to keep the population going. This little one will do that for sure.

Overdue, she emerged far less scrunchy than some kids. My nephew enjoyed meeting his new sister and I hope they find new adventures together and that I will be a part of them.

As I left for the hospital, I knew there was something I had to take to my niece. The blanket my friend had made for me when I started my adoption process more than five years ago. If you have read my Blanket posts, you will know what this blanket symbolizes.

It felt like it it was meant for her, by the same destiny that refused me to have my own daughter. I am trying to reconcile this in my mind. Why some things are meant for some and not for others. But I guess there are many answers to that question, none of which are good enough at a time of emotion.

I gently covered this little princess in the blanket. The soft, cuddly blanket knitted with so much kindness for me. At least I could pass along that same kindness and love to my niece. I hope with this, I can get some kind of closure for that part of my life.

I feel selfish knowing I will never experience that joy and pray that the joy I will get as an aunt will be enough.

(by the way, this picture is not my niece, but a cutie just the same)

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.

Do you believe in magic?

An odd start to a post, but I thought I would float this idea to you for your ... amusement.

I enjoy a good adventure and often feel like one can make their own epic adventure just by having a good chat with a friend, losing yourself in a book or those 'zen moments' where it is just you and your imagination.

I also get a real kick out of psychics and their visions of the future.

Before you roll your eyes and stop reading, hear me out.

I am not one of those people who would change my life because of what a fortune teller said. I value it more for fun more than anything else. I admit, there is something about someone, particularly a stranger who might be more perceptive then the average person, to tell you something positive about your life. Perhaps saying the right thing at the right moment gives hope when a person needs it most.

It is a dangerous thing though, so not for the easily influenced or faint of heart. But I wanted to share my experience.

I didn't visit my first psychic until five years ago, around the time when I was going through the adoption process, at a cross roads with my career and at the end of a long term relationship. There was a lot going on in my life and I was so curious to hear what this lady, a cuban woman who grew up in the Middle East, saw in the bitter coffee grounds left over after I choked down a few sips of her awful concoction.

She told me vivid stories about seeing me climbing a steep mountain to get to a house at the top. She said I would struggle to get to the top and I would want to give up but I would meet a man with a moustache who would help me finish this journey.

I never met this man, or know of this house, but it is parked in my memory for the future.

She told me I would get the promotion I was up for but then I would lose it very quickly, but my salary would be better. I thought that was odd, but true to form, I got the promotion, was laid off a few months later, got a new position in the same company at more money.

As with all 'visionaries', and I have seen a psychic, clairvoyant and astrologer, they tell me the same thing with my health: I will always have health issues and it is a source of frustration for me, (and sadness for my family) but I was stronger than anyone imagined and I would live a long and happy life. The last two I met, said that through natural healing and yoga, I would see a major improvement until a cure was to be found which would be in a few years.

I had already started yoga and natural medicines, and a few months after that reading, researchers had a few FSH breakthroughs. I was pretty shocked since I had resided to the fact that there was no cure.

They all told me I would never have trouble with work and would always have money. But I would never be rich since I would use all my money on my health and my loneliness. Boy, is that true! It's expensive to have a disability.

And, kids. As I mentioned, I had just started the adoption process. The psychic had a fit when I asked her if I was going to have kids. She said there was no way I was going to have children, not even through adoption. But she said she saw a beautiful child with curly hair who would be my life.

What? That is what I dreamed my daughter would have, bouncy curly hair. I figured she didn't know what she was talking about. But, she insisted that if I would ever be a mother, it would be by marrying someone with a child. (The clairvoyant and astrologer said the same thing, they saw me with kids, but not biologically my own.)

Well, I just ignored them and threw myself into the adoption and being a mom. I was so determined, how could it not happen?

But she was right and as you know from previous posts, the adoption didn't go through. I guess there are some things that are predestined.

The curly haired child? It took my a couple of years to realize it was my nephew, the love of my life.

And as for marrying a man with a child? Funny thing about my new boyfriend ....

But the most interesting thing they all said was that I am supposed to be doing more than what I am doing. That I am holding myself back from something important. They were so adamant about it, but couldn't tell me anything more about it.

I have yet to find out what that is, but I am looking forward to that journey of discovery.

A Needle in a Haystack

Can you imagine what it would feel like to have a disease attack your body while you helplessly watch, only to find out you could have done something to stop it, or at least least slow it down?

While there is no cure for muscular dystrophy (yet) there are some things one can do to help.... I think.

I say that with uncertainty because the suggestions out there of things to help seem to have equal voices saying they don't help.

Exercise, how much and what type. What works for one, doesn't work for another. I attended a muscular dystrophy conference a few years ago where a researcher provided results from a study on exercise and the impact on muscular dystrophy. She said the one type of exsercise that proved to help increase strength in patients was aerobics, 20-30 minutes three to four times a week. This would be great if you don't have a foot drop, aren't already suffering from decreased mobility or fatigue.

I was also told once you experience the 'burn' when you are exerting yourself (swimming and cycling seem to be the preferred sports) you must stop as your are irreversibly damaging you muscles. Then I was told by some of my fellow FSHers, their doctors said you have to push yourself past your boundaries to move them.

Take this article I just came across as I was surfing the net. Calcium and CoQ10? Easy and inexpensive to purchase. No medical professional told me that.

How about the effectiveness of stem cell treatment? My neurologist had no information for me. What I learned, I learned from Russ Kleve's blog who went to China for treatment and documented each step of his treatment. Thank goodness he took the time to share his experience.

What to do but keep researching and sadly, not just relying on your doctor. Above all, listen to your body. Everyone with this condition is different and there seems to be different solutions at different points in the condition.

I have tried alternative medicines to help. It's not for everyone as there is a lot of blind faith that goes along with it. I am currently in Ayurveda treatment which involves taking four pills twice a day and an intense massage with strong herbal oil. The pills are made up of various herbs and spices. The basis of this treatment is increasing circulation and making your stomach function properly.

I am in the second month of treatment and while I haven't noticed a difference (except joint pain which he says is good as it means my muscles are getting stronger) he does see a difference in the back of my legs. He wants to see this work as much as I do. He believes more than I do, saying I will see a huge difference in nine months. Nine months, can you imagine?

I'll keep you posted.

Or, you could do nothing. I have a good friend with FSH who wouldn't know anything about the research or any other stories if I didn't tell her. She is progressing faster than me in some ways and not in others. She is happy and in all other respects, very healthy. The greatest joy she has is her little girl who is as feisty as her mom and as energetic as she once was. She hopes for a cure, but waits for nothing.

In the meantime, I share my experience of what has worked for me above all else. Being positive. I spent a lot of time figuring out what makes me happy and taking every opportunity to do those things. Spend as much time laughing as you can, and surrounded by people who make you feel good. It makes all the difference.

Right Now

The search for the perfect moment is one of the biggest obstacles to achievement. I have heard the sentiment wrapped in various quotes and truths:

"Don't wait for the perfect moment. Take the moment and make it perfect."

“If you wait for the perfect moment when all is safe and assured, it may never arrive. Mountains will not be climbed, races won, or lasting happiness achieved.”

"If you keep waiting for the perfect moment, the perfect moment will pass you by."

and my personal favourite,

"The best time to plant a tree was 30 years ago. The second best time is now."

This is to say get off your butt and do what you want to do. Time waits for no one.

For someone with a progressive disability, no truer words are spoken. I always say, "I do the things I can do while I can do them." The truth may be more evident for me, but it is not any less true for anyone else.

I have spent too much time waiting for the perfect moment to pursue my true passions, one of which is writing a book. It perplexed me since I am usually very focused and driven to achieve career and personal goals (except losing weight, that never lasts. I love food too much.) But for everything else, I am like a heat-seeking missile, finding exactly what I want and taking each fearless step to get there.

Why was this taking me so long?

I keep saying I need to 'get in the zone'. The 'zone' is the perfect moment for me. This is how I write. Once I'm in the zone, it was an effortless process where my imagination weaves into the right words and takes a story into places it was meant to go. I often go back to read what I wrote and don't even remember writing it.

But clearly, getting into the zone when you put pressure to get in the zone is what actually keeps you from getting there.

Or is it just fear, fear that once I try this thing I want so badly to be good at, I'll actually be terrible at it?

The other sure-fire barrier to success: fear.

The truth is you can grow old waiting for the perfect moment to try something, but that perfect moment is now and you are missing it because you are too busy making up reasons for why you haven't tried.

Change the definition of failure. Failure is not having tried, not trying and not achieving perfection when excellence is good enough.

Camouflage on the Red Carpet

Yes, this is going to be one of those "first world problems" type posts. Who gets freaked out about going to a red carpet event with celebrities, important locals (or influencers as we in PR call them) and generally swishy people?

Well, when you walk with your eyes to the ground to make sure you don't trip over something as complicated as your own feet, it's a bit of an anxious time.

I thought my cold could get me out of it. Alas, I must be there to ensure I meet those swishy people and make an impression. Just what kind of an impression remains to be seen.

I am the Queen of Camouflage so this shouldn't be so hard. But turning 40 came with the gift of a body shift and I still am stupidly optimistic that I can squeeze into my old clothes. Never mind that I have been handing my clothes to my friend's 12-year old and they fit her.

Oh the ironies on so many levels. You never realize how slim you were until you aren't anymore. I swear if I could do it again, I would never complain about being fat if I could go back to my old size.

Regardless, I refuse to buy anything new so I must now go through my wardrobe looking for something that is new enough to pass off as elegant, or old enough to pass off as trendy. Somewhere in this mess of dresses is the classic little black dress.

Classic because it skirts the knee so you can't see the muscle wasting at my thighs, loose enough so you can't see my distended belly (caused by lordosis but looks like I swallowed a bowling ball), with a neck wide enough that I can put it over my head with the limitations of my shoulders post surgery, no buttons or zippers at the back which I can't reach. And, it's kind of cute.

Now the shoes. Damn, can't get around that. Only have open-toe slingbacks I bought from India 10 years ago which are falling apart, but have the right heel. Never mind it is January in Canada. Can't bend over enough to paint my toenails though. But I guess we'll just have to deal with that. Hopefully people will be more interested in who is walking the red carpet, and with whom, as opposed to my chewed up toes.

Such a disgrace.. ahem.

Now, I just have to figure out how to avoid stairs, stages, hills, inclines, uneven pavement, dancing, running, bending, low cars, low chairs, having to hold more than one thing in my hands, carrying anything heavy, getting pushed over in the crowds of hundreds, getting caught in the wrong light so my FSH facial flaws show and of course falling since I won't be able to get up.

Better wear underwear... just in case. :)

The Blanket - Part Two

It occurred to me at lunch with two dear friends today that I have not completed this post.

In some ways, the world is increasingly becoming a smaller place. It is not uncommon to have many friends, old and new, in various parts of the world. I am fortunate to be able to pick up where things leave off with friends I may only see once or twice a year. As one friend put it, it is like reading a really good book, putting it down for awhile and picking it up to always find another exciting chapter.

Very true.

But it is also seems like a dumping of updates and for me the last year has been filled with so many twists and turns, I feel like I am shooting cannon balls.

Good thing my friends are resilient.

I was asked about the adoption and where I was at. Anyone who has gone through an adoption, or lived through the process with someone knows, international adoption is a long, emotional, process full of red tape and frustration. Throw in being single with a disability and it is even more of a whirlwind.

My process had the usual frustrations, but I was fortunate to have a great social worker. When I started the process it seemed to just go along in the usual manner. I did end up having to switch countries where I was adopting from and I had to adopt a toddler. But, I thought the challenges of having a disability would be easier if the child could walk already.

Who knew it was my own ability to walk that would become the deciding factor .Well really, my ability to run. Which I realized I couldn't do as my two-year old nephew took off one day down the grass hill and onto the road. I was almost paralyzed because all I could do was walk as fast as I could, pray I didn't trip and yell at him to stop. He giggled with delight because he figured I understood his game and was playing along. I was mortified. All I could see was the vision of him being hit by a car and it would be my fault because I couldn't keep him safe.

Before you think I gave up too fast, I never change course until ten things push me off course. That was only one. Fear of being unable to respond quickly, fear of not being able to afford my disability and raising a child, sadness of being the reason my child would have to compromise because of me and on the list went. So much fear and sadness and because I could only feel the infinite love for my nephew, the thought of not being able to keep another I loved as much safe, I made the painful decision to withdraw my application.

I was the next in line for receiving a proposal for a child.

My program manager at the adoption agency was very upset. We had developed a strong bond and this was certainly a tough process with her being a main character. I suppose it takes a special kind of person to dedicate their life to matching children and parents so I shouldn't be surprised she took it that way.

I cried for a long time. I felt like such a failure. I doubted my decision all the time and most of all I doubted my faith. In myself and in God as I had initially wanted to leave the decision in his hands and ultimately, I made the choice to give up.

My daughter was already born. She would have been two or three when I received that proposal. She was alive when I started the process. I felt I knew her. I named her and I saw her in my mind every day. When I made the decision, I felt I abandoned her. Something inside me died.

I let so many people down. My brother and sister in law who were waiting for a niece. My parents who were waiting for another grandchild. My family who was looking forward to adding another jewel to our growing family and my friends who were inspired and wanted me to see my dream fulfilled. And myself - I never imagined in all my life I wouldn't be a mother.

Everyone supported me and my decision. They blamed the system that made me wait for almost five years. But the system couldn't change the FSH. It was progressing along, despite my best intentions.

I gave myself a year to get up off the mat. I'm just short of that and it's still something I don't like to talk about. I guess there are some things you don't get over, you just learn to live with and hope the experience makes you stronger. I know now, as the FSH continues to progress, I made the right decision, but it is still painful.

I am fortunate that I have this amazing nephew who saved me, he is truly my little angel (even though he can knock me over now) and another niece or nephew on the way. I am blessed to have access to them and my friends' kids. It's not so bad being the cool aunt.

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.

Silence

So this post is one of the reasons I decided to write anonymously for now.

One of the biggest challenges I faced when I was diagnosed with FSH 20 years ago, was the reaction from my family. Interestingly, my friends asked questions, did research and tried to understand what I was going through and how they could help. No one, not one person, knew what FSH was. The closest they got was, "Muscular Dystrophy, like Jerry's Telethon?" (Well, it was his telethon until he was turfed.)

For the most part, people were pretty confused since I looked just fine. So the diagnosis was just a bunch of big words that made no sense. But my friends did what they could and always showed sensitivity even if their approaches varied.

When I told my family, they didn't even stop what they were doing. My parents just looked at me and said, "What's that?" When I explained what the condition was, and that it was typically genetic, there was silence.

My father is the strong and silent type anyway. A very soft-hearted person who would do anything for anyone. I think he heard me explain it. I think he understood it better than my mother in some ways and just decided to shut down. To this day, the most he has ever said to me about it was over breakfast last year.

We sat at his favourite table at his favourite McDonald's (my father has simple pleasures) and he looked at me with tears in his eyes and simply said, "I don't understand any of these things you are going through and I don't know how to. But I pray for you every day and that's all I know what to do."

That was enough from him. I can't stand seeing my family upset particularly my immediate family. It is overwhelming to see my parents struggle to understand what they deem to be "western problems". No one "back home" had anything like this.

My family came to Canada in the 70s. My brother and I were young and grew up in Canada. I think our generation was a transitional one, with parents who came here for a better life for their kids, but couldn't completely integrate into this new world. They desperately try to hold on to things that are familiar, things they can control and make sense of. This was not one of this things.

And then there was my mother. My mother is a very strong-minded person with a very weak soul. We are incredibly close. It is unbearable for her to see her kids suffer. She could not fathom for a moment that I even had this condition, let alone what the consequences were. She kept saying it was totally impossible since no one in our family had this . I tried to explain sometimes the symptoms are so mild, you wouldn't know you had it until later in life, or maybe not at all.

No, it can't be, she insisted.

I gave them the patient brochure. It sat on the table for weeks and weeks. Everyone walked by it until finally someone placed it back on my dresser. It was the elephant in the room and no one wanted to acknowledge it.

But now it was out there, hanging in the air like a bad smell you couldn't get rid of. She believed if I just worked out, I would be ok. My shoulders wouldn't stick out and everything would be fine. After a few months of that, I got frustrated and took her to my diagnosing neurologist. He couldn't understand what we were doing there. He diagnosed me... in English.. he spoke slowly. Why wasn't I getting it?

I explained my mother didn't really understand and maybe if he explained it she would. His eyes went from confusion to pity. He realized before I did how lonely this struggle would be. This added a whole other layer of complexity to the situation.

The conversation with the doctor didn't make a difference. Like I said, stubborn and defiant that this wasn't happening. The worst kind of denial because now I had to deal with explaining everything as I was trying to understand it myself. It was like trying to save myself from drowning with someone trying to hang on to me because they couldn't swim either. But when it is the most important people in your life, you can't ask them to let go.

The situation lay dormant for awhile. Like I said, I still looked ok. I had the surgery which my dad thought was unnecessary and my mother thought was a cure. Don't get me wrong, I couldn't have made it through the recovery without them, I just hated hurting them.

I didn't know how much I could hurt them until the FSH started to show, probably the last couple of years. The falls, the limping, the fatigue, the pain. There have been a lot of tears, most of them not mine. Until of course I realized what I was doing to them and that is an indescribable pain. Now I have to do the "side step" and keep them from knowing every little thing I am going through.

This is the cross FSH makes me bare. It's an anchor around my neck and I know at some point they are just going to have to figure it out on their own. I have worked hard at getting to a positive place with this condition and it is an ongoing journey. With every "dip" in the condition, you get the rug pulled out from under you and you have to pick yourself up. I know I need to pick myself up before I can pick them up.

The saving grace is their faith. The culture that gives them this denial is wrapped in a faith that will give them the strength to get through it.

Circle of Influence

For those who know me, you have heard me say a million times how important a positive circle of influence is. Someone in my circle sent this post to me yesterday. I did my part by re-sending it to everyone else in my circle. The entire post is excellent and worth reading, printing, framing, pretty much anything short of tattooing. Surrounding yourself with the right people is top on the list.

For me, the 'right' people include those who support me through this challenge and all other challenges I face that fall in the 'part of life' category. But, they also include the people in my life who don't understand FSH and what it means, those who don't believe me when I tell them what I am going through, and those who just tell me to shut up about it. It is sometimes those people I value (mostly in hindsight) because they make me fight for the life I want to lead.

Ironic, when you defend something it ends up pushing away your own doubt. The words that sting the most aren't new. I say them to myself a million times. But when I hear them, I am driven to defend myself.

"No, I don't want to tell people I have a back problem. I want to tell them the truth."

"No, I am not lazy. I am really just tired."

"No, I am not vain. I really needed that operation."

"No, I am not taking this too seriously. I am trying to learn, teach and inspire something positive out of the situation."

"Don't tell me I can't."

Some of these thoughts came from the people closest to me. Some meant well, some were just thoughtless and some still live in a reality where having a disability means game over. As my sweet nephew likes to say, "No, game NOT over".

It has taken me a long time to get "through the muck" and realize how strong I am. Not just because I fight the ideas I don't like (whether they come from me or someone else), but because the majority of my circle consists of strong, caring, compassionate people who care about me and see past my disability. They don't all have to be experts in FSH. Some of them don't even know what it is. But it doesn't matter. They see me for who I am, listen to my dreams, give me a hand or a kick in the butt when I need it. Most of all, they make me laugh. With laughter you can get through just about anything.

To my circle of influence, thank you.