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?

A Bit About Me

Since I haven't posted a profile, I thought I should share a bit about me. First, the FSH stuff -

I was officially diagnosed when I was 21. I still remember sitting in the doctor's office after showing him the 'neat trick' I could do which was touch my shoulders together in the front. Made for a great party trick!

But of course, I knew there was something odd about it. Something strange about not being able to lift my arms very high, the way my shoulder blades stuck out. Well, it was the first time I saw a doctor scratch his head and bury his head in his medical books to figure out what this thing was he had never seen.

He emerged with a possible diagnosis "Sprengel's Deformity". Not a bad first guess. He wrote it on his prescription pad with a question mark and instructed his nurse to call an associate who specialized in back-related issues.

I have to admit, at first it did seem like an adventure or an answer to a riddle. Such an oddity that you try to accept as normal, when you know something is not quite right.

The back specialist seemed to recognize it far more quickly and sent me to a neurologist for some tests. Never in my wildest dreams did I think he was going to say what he did when I walked into his office with my test results.

He sat at his desk, pulled out his file and said you have a rare type of muscular dystrophy called facioscapulohumeral muscular dystrophy. I could barely say it, let alone know what it even meant.

But at that moment, I felt a weird sense of relief to know that I had "something" that would explain my every failure in any athletic endeavour I made. To know me, you would know I am ambitious, driven and have a fierce sense of competitiveness and fight against failure. Here I was, failing at everything I tried and I tried everything.

It soon became clear to me, I shouldn't have breathed any sign of relief because there was no cure to this "something" with the impossible name. The next part of the conversation with the neurologist was a ghastly explanation of a surgical option called scapular fusion where the risks included punctured lungs, broken ribs and well, death if the surgery went wrong. Now let me quickly say, I did end up having the surgery and they did nick a piece of my lung during the first operation, but it was by far the best thing I ever did for myself. It gave me independence and as anyone with a disability knows, that's what counts.

To this day, it amazes me how little most doctors and specialists know about this condition. I had to take a patient brochure with me whenever I went to a health care specialist. No one seemed to know what this was. I have to admit, I was and still am on occasion, tired of explaining it. It's hard to explain this condition that even the most informed person on the subject will still answer with "I don't know". I don't know how fast or slow it will progress. I don't know how I got it (no one in my family shows signs of it). I don't know if it will affect any kids I have. I don't know when the condition peaks and plateaus. I don't know what the worst looks like.

On the other side, I am a 40 year old female living in Canada. I have a full time job and have a great family, wonderful friends and a life I sometimes take for granted.

Since the whole blog is more about my story, I will leave it here and tell you more in other posts.