It has been quite a trip for me since being diagnosed with Usher syndrome at fifteen. As I lose my sight, traveling from light to dark, I am finding this journey is harder than I ever thought it would be. Yes, I took the long path, with many breakdowns, rest stops and detours, and, at times completely in the wrong direction. Then I found myself on the right path, which led me to where I stand now, at a crossroad.
Let’s put the happy ending here, so we all know going ahead that this ends well. Because this will end well, this has to end well. There is no other way this will end. I know my final destination. It’s just, at the moment, I am unsure how the hell I am going to get there.
And that frightens me. That disturbs me. That worries me.
I am stuck at a crossroad where I have two options. It doesn’t matter how I describe them. This way or that way. Left or right. East or west. What does matter is that one of the two is the right way, the one that leads to my happy ending. And the other, the wrong way, leads to the ending that will have you finishing the movie of my life saying, ‘well, that was sad.’ And, ‘what a shame, she showed such potential.’ And most likely, ‘the right way was so obvious, but she went the wrong way!’ Then you would demand your money back. Everybody wants a happy ending.
What frightens, disturbs and worries me, is that the wrong way is much more tempting, and easier to take, than the right way.
Since I came out with my two invisible disabilities during my Own the Equinox campaign, and let the whole world know about it, I have (still) been trying to get my head around why it was such a hard thing to do. To let myself be seen as who I really am. I am convinced I cannot be the only one who feels this way. Or am I?
You see I don’t personally know anyone on the path in front of me. Either path. I know of a few approaching this crossroad from behind me, others who may be standing at the same junction, but none who have passed through before me.
It bothers me to think that there may be many, those with Usher syndrome, (or those with any other visible differences for that matter) who have taken the wrong, easy path, and the further they travel, the harder it may be to turn back. It bothers me to think many may be on the way to their sad ending, withdrawn, alone and truly lonely. Well, that’s what the wrong path looks like to me.
I cannot take the wrong path, and believe me, if it was just me I probably would. I would retreat into my own bubble, live life as a recluse, give up being independent and become dependent on others. Anything to avoid the right path, which, yes, would ultimately lead to my happy ending, but getting there would not be easy.
But it isn’t just me. (Fortunately.)
I know I need to take the right path, for my husband, for my children and most importantly, for me. And I will go forth in the direction of my happy ending for you too, the USH family. I may not know anyone ahead, but many of you know me. I will put my hand up to go, for all of us.
Now, though, I am just going to hang around here, at this junction, a little longer. Well, as long as I possibly can, and about that, I am a little worried. This really isn’t like me.
To understand why, you need to know that I am the girl who, at every crossroad in my life, many times over, has left the easy route to travel the road less traveled, to leap into the unknown. Whether that was to do with travel, career, home, or even love, if there was a chance to be taken, it would be grabbed, always without a moment of hesitation.
This hesitation I feel now, is new for me. The pull in the wrong direction is hard to resist. It scares me how easy it would be to quit.
Getting to my happy ending, I know, involves using my cane. To me, that will be going from invisible to visible. Like, hey world, look at me, see I have a cane! Yet, using a cane feels like I am wearing an invisibility mask. My self, my identity, my story, completely erased, replaced with the mask of that of a blind girl and nothing more.
Is it just me who wonders about people and their story, especially those with visible differences? I do. I wonder about their story beyond their differences. I wonder if anyone else bothers to wonder about their story beyond their differences.
Before, I liked being invisible, with no one knowing my story. It was my little secret. I would think, hey, I am hearing impaired, vision impaired and going blind, and no one knows! Now, using a cane, my little secret is out. But wait, there is more to me, I plead. Yes. I am hearing impaired, vision impaired and going blind, but there is so much more to my story! Please, can you wonder about my story beyond my differences?
And that is why I hesitate at this crossroad.
I would much rather be invisible and my story not known, than be visible and still my story not known, but replaced with an assumed one. (Told you I am still trying to get my head around this.)
Since the Own the Equinox campaign began, there have been conversations that have ended with me thinking that it is impossible for me to know what it is like to not have Usher syndrome, just as it is impossible for others to know what it is like to have it.
Also that it is impossible for me to see me how others see me. Because, well, to me I am just me.
There was a moment on Usher Syndrome Awareness Day, when my husband sat across from Mark Dunning, and exchanged a ‘see what I mean, she has no idea,’ look of exasperation.
I had been disappointed with my speech earlier that day. The actual speech, I was immensely proud of, just not the delivery. It was the first speech I have ever given and I wanted it to be flawless. I wanted to show that, even having Usher syndrome, I could be just as good as everyone else. But instead, I found myself looking around that room and almost shutting down when seeing all the expectant faces, some reduced to tears. I wasn’t prepared for that. And so, it wasn’t the delivery I had hoped for.
This is where the ‘it is impossible for me to see me how others see me’ comes in. Mark had said I am too hard on myself, that my speech had stolen the show. My husband had said I don’t realize how inspiring I am.
Me? I wasn’t convinced, but since then, slowly, I have come to see myself through the eyes of others. Maybe they are right. (Just, maybe.) And, I now know and realize that I should never have expected my speech to be flawless because, (gosh, Kate, give yourself a break), I am not like everyone else. Yes, I am hearing impaired, vision impaired and going blind, after all. So yes, it was just as good as everyone else. Dare I add, perhaps a little better.
So, I will now stand at this crossroad, knowing it will be hard, it will be a battle, but I will have my happy ending.
I will inspire, motivate, and lead the way. I will take the next step when I have adjusted to believing I am good enough, I am worthy, I am brave, and I am ready. Let’s throw in a little courage and determination too.
(Yes Kate, you’ve got this!)
I will continue on the path when I am comfortable wearing that invisibility mask, when I know my story, and just me knowing my story, is enough.
(Everyone else can wait for the movie. Joke!)
‘Invisibility and ignorance are the antithesis of equality, empathy, learning and change, so your bravery in this battle forges the way for so many invisible people to speak up in future.’kerrie (commenting on my writing)
This post was written in November 2016 and inspired by the above comment. Thank you, Kerrie, for these and all your other wise words of inspiration and encouragement.