So, tomorrow is the day I have been putting off for ages. It's the day when 'The White Cane Lady' comes to my house to begin 'Orientation and Mobility' training. Otherwise known as learning how to get around without bumping into things.
I'm not sure why it's such a big deal but I think it's because it feels like the beginning and the end all at once.
Who knows how it'll go with me, the white cane and Alice in her stroller... but everyone has to start somewhere.
Wish me luck...
Wednesday, May 29, 2013
Wednesday, May 22, 2013
Jaguar in the garden
Self-driving cars, bionic retinas, sight-restoring stem cells, gene therapy, talking phones. If there's ever a time to go blind, this seems to be it. There is so much hope on the horizon that it's tempting to put my head in the sand for a while and wait until science waves its magic wand. Or at the very least, drives me around in a snazzy car while I sit back, relax and enjoy the view with my Google Glasses...
However, when I saw a new consultant in San Francisco on Friday, she said it was very much time to be 'prepared'. My good left eye is going to go the same way as my right eye very soon. Apparently, Stargardt's disease is nothing if not symmetrical and my days of relying on my left eye are numbered.
So, alarm bells ringing and with a new sense of purpose, Steve, the girls and I went to a low vision conference on Saturday. We thought we'd save time by stopping by the venue so that I could register on our way to a friend of Sophie's birthday party. Bad plan. In our rush to get out of the house, we didn’t think through how Sophie would fare beyond keeping her at a safe distance from all the dogs, canes and the whizzy computer screens on display.
Predictably, Sophie’s eyes widened in terror when she saw the guide dogs (we're hoping her aversion to dogs is just a phase) and it was no surprise that she wanted to know what the canes were all about. But the look of panic when we reminded her that my eyes are bad stopped me in my tracks.
Since I was diagnosed with Stargardt's a couple of years ago, I've spent hours agonizing over how different things will be for the girls growing up. I feel so sad that I won't be able to read stories to them or see them smile, or help with homework, or catch a ball, do jigsaws, or help choose a prom dress if we're still in the US by then (and if they'd let me anyway!). But on Saturday, I suddenly realised that all of these things only matter if we let them matter. Now, more than ever before, there must be plenty of ways around them. Probably even an app or two. All Sophie and Alice need to know is that I'm fine, and as long as that's the case, then the rest will into place.
And it's also good for me to remember that while I may be dragging my heels about adapting to the situation, Sophie is far quicker off the mark. Not every toddler has to tell her mother what she’s looking at (apparently, we had a jaguar in the garden the other day), what she’s doing or how she’s feeling, but she’s taking it all in her stride. She’ll even describe to me exactly what she's doing when she's being really naughty. For now, at least!
However, when I saw a new consultant in San Francisco on Friday, she said it was very much time to be 'prepared'. My good left eye is going to go the same way as my right eye very soon. Apparently, Stargardt's disease is nothing if not symmetrical and my days of relying on my left eye are numbered.
So, alarm bells ringing and with a new sense of purpose, Steve, the girls and I went to a low vision conference on Saturday. We thought we'd save time by stopping by the venue so that I could register on our way to a friend of Sophie's birthday party. Bad plan. In our rush to get out of the house, we didn’t think through how Sophie would fare beyond keeping her at a safe distance from all the dogs, canes and the whizzy computer screens on display.
Predictably, Sophie’s eyes widened in terror when she saw the guide dogs (we're hoping her aversion to dogs is just a phase) and it was no surprise that she wanted to know what the canes were all about. But the look of panic when we reminded her that my eyes are bad stopped me in my tracks.
Since I was diagnosed with Stargardt's a couple of years ago, I've spent hours agonizing over how different things will be for the girls growing up. I feel so sad that I won't be able to read stories to them or see them smile, or help with homework, or catch a ball, do jigsaws, or help choose a prom dress if we're still in the US by then (and if they'd let me anyway!). But on Saturday, I suddenly realised that all of these things only matter if we let them matter. Now, more than ever before, there must be plenty of ways around them. Probably even an app or two. All Sophie and Alice need to know is that I'm fine, and as long as that's the case, then the rest will into place.
And it's also good for me to remember that while I may be dragging my heels about adapting to the situation, Sophie is far quicker off the mark. Not every toddler has to tell her mother what she’s looking at (apparently, we had a jaguar in the garden the other day), what she’s doing or how she’s feeling, but she’s taking it all in her stride. She’ll even describe to me exactly what she's doing when she's being really naughty. For now, at least!
Monday, May 6, 2013
Hat shop
Sprinting to catch a flight at Vancouver airport on Friday, I asked a security guard where to go. He told me to read the sign right in front of me. I retorted that I'm visually-impaired. Confused, he pointed at the sign again. With just two minutes to go until my flight was due to leave, I gave up and raced off in what looked like the right direction leaving him muttering about people 'trying it on' to get priority boarding. I'll bear that in mind for next time...
Then there was the very nice lady dressed in a bright red suit who greeted me in the lobby of my opthamologist's office last time I visited. So nice in fact, that she took my hand, led me to the elevator and rode with me to my floor. Still holding my hand (which was becoming more and more awkward by the minute), she told me to check-in for my appointment using the touchscreen computers which had apparently replaced the usual front desk staff. I explained that I might need some help navigating my way around the screen and she looked entirely bewildered. She made a hasty retreat and whispered to a colleague that I appeared to be 'visually challenged'. I couldn't help but wonder how on earth she'd managed to avoid dealing with 'visually challenged' people in a retinal disease clinic. And if she wasn't there to help patients like me, what on earth was the hand-holding all about?!
All very odd, but then I suppose that this transitional stage between being sighted and not is confusing - for me and everyone else. How can somebody who can run at full pelt through an airport be unable to follow directions? How can somebody read texts on her phone (in an attempt to forget about holding hands with a complete stranger) struggle to use a touchscreen computer? Why would she bother writing a shopping list when she complains about no longer being able to read her own hand-writing? Why does she insist on buying magazines she can barely see?
Recently, I've been experimenting with different ways of describing what's going on. I've tried on a few different hats for size, starting with the entirely nebulous 'horrible eye-disease' and 'terrible eye-sight' approach, followed by a brief attempt to brave no-nonsense labels such as 'visually-impaired' and 'low-vision' before retreating to the comfortingly meaningless 'almost legally blind'.
At some point, the blindness might speak for itself but now and in future, I'm so happy to have friends and family who don't seem to mind the ambiguity of it one bit: People who'll listen to me moaning about not being able to see ANYTHING. AT ALL. ANYMORE one day and still be happy to take me to see a ballet or an art exhibition the next.
All very odd, but then I suppose that this transitional stage between being sighted and not is confusing - for me and everyone else. How can somebody who can run at full pelt through an airport be unable to follow directions? How can somebody read texts on her phone (in an attempt to forget about holding hands with a complete stranger) struggle to use a touchscreen computer? Why would she bother writing a shopping list when she complains about no longer being able to read her own hand-writing? Why does she insist on buying magazines she can barely see?
Recently, I've been experimenting with different ways of describing what's going on. I've tried on a few different hats for size, starting with the entirely nebulous 'horrible eye-disease' and 'terrible eye-sight' approach, followed by a brief attempt to brave no-nonsense labels such as 'visually-impaired' and 'low-vision' before retreating to the comfortingly meaningless 'almost legally blind'.
At some point, the blindness might speak for itself but now and in future, I'm so happy to have friends and family who don't seem to mind the ambiguity of it one bit: People who'll listen to me moaning about not being able to see ANYTHING. AT ALL. ANYMORE one day and still be happy to take me to see a ballet or an art exhibition the next.
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