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.

Is it vain to want freedom?

I know it may sound like an insane question. How can the quest for freedom be a vanity exercise? But for many people, myself included, it has been an accusation thrown out in response for wanting things that may not seem like a big deal.

It's not a big deal for some. But for others, it's not being able to do the small things that make the biggest difference.

This came to the forefront for me after reading a fellow FSHers novel Wobbly Legs on a Firm Foundation. The author, Nia Stivers, talks honestly about her experiences with FSH, the perspective it gave her on life and her relationship with God.

Towards the end of the book, she talked about two operations she had, one for her shoulders (scapular fusion) and one that was new to me, a tendon transfer on her feet to correct foot drop.

When she spoke to her surgeon about it, he commented that she would likely have trouble adapting because she could no longer wear heels and since she was vain, she wouldn't be able accept that. She was understandably shocked. Sure, losing the ability to wear high heels isn't great. I myself find it very challenging to be stuck having to wear flat shoes when high heels are 'symbols of sex, status and style' and like it or not, it can help give a woman confidence.

But nevertheless, how stupid did this doctor think she was? Did he really think she was going to turn down the opportunity to walk without falling down because it meant no more Jimmy Choos? I am sure he was trying to make a point, but a rather poor approach if you ask me.

It reminded me I was told something similar when I was getting my scapular fusion. It was vain to want to get this operation to improve my looks.

Except that's not what I was doing it for.

I wanted to be able to wash my hair... Lift my arms above my head so I could get things off a shelf without asking for help... Feed myself without pain... Dress myself without feeling like a contortionist... Carry a child in my arms... Hug someone.

That last one, or the inability to do that last one, became abundantly clear to me at a FSH conference I attended. It was the first one I had been to and I was looking forward to meeting an amazing woman I had 'met' online on the FSH Society online community. She was coming, in her wheelchair, but she would be there and I would finally get to put a face to a name.

We had a great time, giggling like school girls and looking at the most handsome man, also in a wheelchair. He looked like a movie star. We were making up the most fascinating story about his life. It is one my fondest memories of her.

As we were leaving, I bent down to give her a hug and she looked at me, somewhat expressionless (FSH will do that do you) and said, "Sorry I can't hug you back. I can't lift my arms."

I thought of how awful it must be to not be able to hug her children, grandchildren or a friend. Not to be able to express her emotions in such a simple way. To those reading this and thinking, 'What's the big deal in a hug? Or being able to life your arms?' I say, try it. Try taking all those things out of your life, all those small things. Tell me if it doesn't make you feel like you are a prisoner in your own body.

In fairness, I know the doctor's sentiment in part comes from the fact that in the early stages, FSH doesn't seem to exist. You look fine to rest of the world. It is a blessing, and a curse, to not have the visible disability. Anne Harland articulates this in her video, Assumptions.

I hope you don't misunderstand this post. It's not meant to blame or shame anyone. Just meant to give some perspective of the importance of the little things.

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.