January 26 - In the Kitchen

The kitchen can be an interesting place for someone with little or no sight. For myself, I know that I need to be super organized. The main reason for this is to stave off frustration and the other part is a simple safety issue.

I start my organizing when groceries first come into the house. I am fortunate in that Lyle is there to identify the various cans and packages that I have ordered. I line up the cans of soup, beans, etc. in a particular order in the pantry cupboard. One of my friends who is totally without sight and living alone has an arrangement with the grocery delivery person. This young lad puts her groceries away wherever she tells him they belong. She used to use braille strips but now relies on memory. People with visual challenges often rely on memory for many daily tasks.

I find frozen packages more difficult to identify. I can feel things like french fries through the outside of the package but other items aren’t so easily identifiable. I recall the time that I tried to fry frozen corn instead of hash browns. Only when they were cooking did I realize my mistake.

I’m not fond of working with other people in my kitchen. Family is different. They all know that my quirks are often safety issues. For instance, they know not to leave glass tumblers or coffee cups in the sink. I don’t tend to see these and can all too easily bang a heavy saucepan down on top of them. They know not to put sharp objects in the dishwater if I am the one washing the dishes. They know not to rush around me when I am in the kitchen. They know that I need to work more slowly and carefully than someone with full sight.

As far as cooking goes...I have my regular recipes. I prefer casseroles or using a crock pot. I’m fortunate in that Lyle likes to barbeque and so often I am only responsible for the vegetables. Undercooked vegetables aren’t as much a concern as undercooked meat!

So, speaking of being in the kitchen, that should be where I am heading to next. Low vision or not, I like to eat!

 

January 20 - White Canes in Winter

Walking with a white cane in winter weather can be a daunting experience. The challenge of negotiating freezing cold and snowbound sidewalks is difficult for many, but especially so for people with mobility challenges. I never look forward to those inclement winter days and was pleased when this past week CNIB introduced an initiative to advocate for better snow removal.

In its communication, CNIB encouraged people to self-advocate when they encounter poor snow removal practices in their own communities. We could do this by bringing hazard spots to the attention of municipalities, businesses, snow removal contractors and homeowners who might be responsible for keeping these pathways clear. Regardless of the weather and the season, pedestrian walkways should be accessible to everyone. The campaign hopes to make us all aware of this important issue.

While I am writing this about snow removal, this isn’t the only challenge of winter weather. This past week or so has been extraordinarily cold and I find holding my cane uncomfortable to say the least. If I wear light gloves or mitts, the cane is too cold to hold. If I wear heavy mitts, grasping the cane is awkward. The heavy gloves also lessen the sensation of my grasp on the handle of the cane.

Winter weather can be difficult for many of us who have mobility issues but still want or need to be outside. I am glad that CNIB is addressing this problem with its self-advocacy initiative. You can read more about the SnoWay campaign on the CNIB website by clicking here.

January 9 - Do I Look Blind?

For the most part, I don’t worry about my appearance. Certainly, before I step out the door I comb my hair and hope that my clothes match but I don’t worry unduly about how I look. Definitely I don’t stop to think and worry that other people might or might not point me out as being blind.

This brings me to a day before Christmas. Lyle and I were in Costco. We were doing a little bit of last minute shopping after an appointment in the city. I wasn’t wearing my low vision ID badge and I wasn’t using my white cane. So, when we stopped in the aisle to sample one of those sample goodies, I was quite surprised when the woman manning the counter asked me if I had macular degeneration. I was taken aback. Did I look blind?

When I told my daughter about this experience, she told me that although usually I appear to be someone with sight, when I reach for something, just as I did in Costco that day, my eyes sometimes seem to wander as I reach out searching to grasp the object. I hadn’t thought about this before, but I know that she was right. I am always careful when I am on the receiving end of something being handed to me.

Jen and I agreed that the question from this stranger was a little intrusive, but then Jen asked if the woman seemed to have a particular reason for her question. She said that often people will ask if they have a story of their own to tell. Indeed this was the case. Once I affirmed that I did have a vision problem, the woman launched into a story about her sister who had recently been diagnosed with macular degeneration. From that point on in the exchange, all I needed to do was to nod.

So, while I usually use my low vision badge and white cane to intentionally alert other people to my visual challenges, it seems that I don’t always need these aids. I just need to be myself - after all, I am legally blind.

January 1 - Keeping Current

When I was first diagnosed with my particular eye condition, I read everything I could about it. Although I wouldn’t classify my condition as rare, it isn’t especially common either. My initial reading told me that my eye disease was inherent, and that there was no cure or preventative measures to stall further sight loss. At least I now had a name to what I was experiencing.

So, if there is no cure, why then is it important to keep current with recent research and developments? Because my eye condition is not common, I have found that not all eye health care practitioners are aware of it. In fact, initially I was misdiagnosed with another eye condition.  I need to be able to advocate for my self and to stay informed.

Unfortunately I have been a little lax about this as time has passed. However, a few weeks ago my sister Jill found a 2018 update on the Web. There is still no cure for PXE, but there was certainly more information than I had found in the past.

For instance, some of the symptoms that I have noticed in my physical health are actually connected to my disease. I have often laughed at the fact that doctors and nurses find it difficult to feel and detect a pulse in my wrist. Until the 2018 article I had passed this off as merely coincidental. Now I have learned that the phenomenon is related to poor circulation in my hands and feet and that is part of PXE.

More importantly, there are other possible adverse effects of my disease. While I haven’t experienced any of these, now that I am more informed I can at least be vigilant and watchful. I would not expect that my regular local physician would be immediately knowledgeable about the other aspects of PXE. For me, this is a good reason for me to stay current. I am the keeper of my own physical health. I need to be able to advocate for myself and to keep to date on research that might affect me.

December 20 - Remembering

The other night as I was watching the news, one short clip caught my attention. The story told of the threat of a volcanic eruption in Iceland. The news commentator went on to say that the town of Grindavik had been evacuated. I thought back to 2015 when Lyle and I had been in Iceland and had spent a couple of days in this same town.

Grindavik is a small fishing town with a unique harbour. While we were there, I think that we paid more attention to the town’s proximity to the ocean than we did to the presence of the black lava rock beside the trails where we walked. It was such a peaceful place and for the two days of our visit, the sun was shining. We promised that if we were ever to return to Iceland, this was one spot that we would like to revisit. Now I just feel such great sympathy for the townspeople who have been evacuated from their homes. The pictures on TV are quite frightening.

If you would like to read about Grindavik, I wrote about our visit on my blog. You can click here to access this blog post. You could also go to the archives section and look for May 2015. It is the post titled "May 25 - Iceland (Part 2)" where I have written about Grindavik.

While New Year’s Day is often a time to look ahead with new plans and resolutions, for me, Christmas is a time when I can reflect on memories of the past. I remember our trip to Grindavik with much fondness.

 

 

December 14 - In Sydney

I love spending time in Sydney. There is so much to see and do in this bustling city. Whenever Lyle and I go to Australia for family visits, we try to spend at least a couple of days in Sydney. Even though I grew up in the suburbs of Sydney, I can still find new things to explore and familiar places to revisit.

On our last trip we had two days to ourselves. For the first day we had booked tickets for a theatre production of Wicked. Sydney is well known for its live theatre productions, and an afternoon at the Lyric Theatre in the Darling Harbour area lived up to our expectations. We took the ferry from Circular Quay and had a picnic lunch in a park near Pyrmont. That was fun in itself. There just happened to be what looked like a Harry Potter scavenger hunt happening. Various costumed characters rushed around the park in front of us. They were obviously looking for something but whether or not they found it was irrelevant to us. They provided us with our pre-show entertainment. 

While it was relaxing in the park, it was a bit more frustrating inside the theatre, which is in turn, inside the Star Casino building. After our experience at Wynyard Train Station, I had become more aware of accessibility issues and was insistent that we find elevators instead of using stairs or escalators. The lifts were a lot more difficult to locate, but we persisted! I was glad that I had my cane with me.

On our second day we took the ferry across the harbour to Manly. This is always a great tourist activity and I never tire of it. This time we made a point of finding the name of my grandfather’s cousin inscribed on the war memorial at Manly. John Williams grew up in the area but tragically perished in an escape attempt from a German concentration camp  during World War II.

After that sombre moment, we walked on to the beach and around the rocks pathway to Shelley Beach. The walk is popular with locals and tourists alike. There aren’t any steps, but there are a couple of steep sections that might be difficult for those using walking frames or wheelchairs.

There are two photos with this post. In the first, I am standing at the rail of the ferry with the Sydney Opera House in the background. In the second, Lyle and I are standing on the pathway to Shelley Beach with the distant view of Manly in the background. Lyle is usually the one who takes the pictures so it’s nice to have one where he is in the frame instead of just me. 

 

Sue across the harbour from the Sydney Opera House

 

Sue and Lyle across from Manly Beach

 

 

 

 

 

December 6 - At the Station

We are in Sydney, staying at a hotel near Wynyard Railway Station.  This is not where we usually stay when we are in Sydney, but this trip we decided to try something new.  It was a mistake.  While the hotel is fairly modern, the location is very noisy, and the railway station is a zoo.

Wynyard Station is huge.  It was constructed in 1932 to coincide with the opening of the Sydney Harbour Bridge.  The station is built on the side of a hill, a major engineering feat in itself.  The various underground train tracks can be accessed by a series of stairs, elevators, or lifts.  It’s hard to believe that I first negotiated this maze when I was an eleven year old school girl.  Now many years later and with Lyle by my side, it seems more difficult.  Of course, part of the problem is my sight.  Lyle is good at reading the signs and I do my best to try to remember which signs he should be looking for.

The other issue is the escalators.  In order to reach the four levels of the station, one must use a long and steep escalator or find the lift.  Yesterday Lyle couldn’t find the appropriate lift and so we thought we would try the escalator.  Lyle went first, but as I stepped to the top I could see that the steps were moving way more quickly than usual.  I was frozen at the top.  Lyle couldn’t retreat up the same escalator and had to find the up escalator to get back to me.  By the time he reached me a small group of passersby had gathered to assist and encourage me.  Someone was able to point us in the direction of the nearest lift.

All these things are adventures, but I do think that we could find some that are less heart stopping than our adventures in Wynyard Station.  Tomorrow we are going to attempt to negotiate Central Station. It is larger and also complex. As I recall, there is only one set of major escalators, and there are lifts located at the bottom of each platform.

Once you know the way, trains are an easy to get around Sydney.