May 1 - Board Games

When I was fully sighted, two of my favourite board games were Scrabble and Chess. These days I can’t see the individual tiles or game pieces and I certainly can’t memorize their position on the game board. I still like to play games but I have needed to adjust my perspective. So, I am learning to enjoy games that utilize team work and audible clues.

This past weekend was a good example of how far I have come with this. Our family was together and our two grandchildren – ages eight and nearly eight – were my partners in several games. Knowing that I was unable to see any print, they were very adept at reading clues, letters and directions for me. Sometimes these needed to be whispered so that the other team couldn’t hear but somehow that just added to the fun of the game. How fortunate am I to have two such supportive little ones in our family. Of course, I know that they are also following the example set by their parents.

It has taken me a while to let go of the very visual games of Scrabble and Chess, but I am learning to enjoy this new game perspective. I am holding to the tenet that it’s never too late to learn new ways of doing things. Certainly, these days we can choose from what seems to be an abundant variety of board games on the retail market.

April 22 – Frustration

I am feeling quite frustrated dealing with officialdom. This past week I discovered that to access my Alberta Health records online, I needed a current driver’s license or an Alberta Identity Card. I had neither of these and so the saga of paper work and online frustration began.

Let me backtrack. When because of my diminished sight I was no longer able to drive, I let my driver’s license lapse. At the time, I knew that I could apply for an official Alberta identity card, but of course there was a cost to this. As I already had several pieces of documentation proving my identity, I tended to see this as just another Government money grab and so I didn’t apply. Until last week, and over the past thirty years, I haven’t encountered any problems with this decision.

Now we come to last week. The only documentation that I could use to access my health records online was the driver’s license or the identity card. There was no allowance made for people who didn’t have either of these. Obviously I still don’t have a driver’s license, so the only option was to apply for the identity card. I gave in at last and arrived at the registry with several pieces of documentation.

The first piece that I produced was my Citizenship Card. This plastic card has my picture and was issued by the Federal Government. I couldn’t believe my ears when I was told that it wasn’t acceptable. I would need a passport.

It’s hard to believe the reason that was given for this official statement - my Citizenship Card didn’t have an expiry date! Well, I would hope not! I am a Canadian citizen and I hope that this status won’t expire until I do myself. As for the passport – well I needed my Citizenship Card in order to apply for this travel document in the first place.

Now for the crazy part. Once I had produced my passport, bank statement with current address, etc. and of course paid my fee, the agent said that now she could update and confirm my information on her computer! What? I was already in the system! What was all this other nonsense? Sure enough, my name, date of birth, phone number and address was all there. Even my height was the same. Unfortunately my weight did need to be updated!

After all of this, I was given a receipt but I still can’t access my health records for another thirty days or so. I must wait for my new little plastic identity card with a code number on the back. This will hopefully arrive in the mail.

I consider myself a reasonably intelligent person and between the two of us, Lyle and I can manage basic technology. However, these days a person needs a PhD to negotiate the ins and outs of all these new rules and regulations. I am still feeling frustrated!

 

 

April 14 - Spring

Just a few days ago we left the snow on the ground in Central Alberta and drove to the Okanagan Valley in British Columbia.  The drive across the mountains was not pleasant.  When we left the town of Golden, there was heavy rain, burst of hail, and at the summit of Rogers Pass some light snow.  It wasn’t until we turned south on Highway 97 that the clouds began to clear.

A further two hours down the road we came to the town of Peachland.  (Don’t you just love that name!). We got out of the vehicle to stretch our legs long the lake front.  We were already commenting on the green grass when we came to a small tree covered in blossoms.

There is a picture below with me standing in front of the tree.  I thought that the blossoms were a spectacular white but Lyle assured me that they had a pinkish hue.  I do have some trouble in accurately distinguishing  colours so I must take his word for what he sees.

Whatever their colour, the blossoms were a delightful sign that Spring is on the way.

 

Sue in front of a tree with blossoms

 

April 8 - Familiarity

We are home from our holiday. Although we had a wonderful time, it is good to be back around familiar things again. Until we are actually at home, I don’t think I realize just how much I appreciate the ease of not having to adjust to new things all the time.

I love sleeping in my own bed. Like Goldilocks in the Three Bears, my mattress is not too soft, not too hard, but just right. I like being able to turn the handle of my shower to the right temperature for me, and not having to adapt to different knobs and handles to get the right heat setting every time I step under a different water spout.

I know that Lyle likes to be home so that he doesn’t need to do all the cooking! I am fine with my home stove, microwave, etc. but I struggle with ones that aren’t marked with my tactile buttons. I can do the basics when we are away but generally speaking, Lyle needs to take over for most of the cooking.

Last night as I lay in bed, I reflected that I had even been missing familiar sounds. I like the sound of the chiming of our clock in the living room. If I am awake at four in the morning I even like to hear the train whistle as it regularly passes by down the hill at that time. Of course I miss the audible program on my computer. When we are away, we only take Lyle’s i-Pad and I often just dictate whatever emails I need to send. It’s not the same as typing the words and thoughts myself.

Yes, there is much to be said for the familiarity of home, but having said that, I am still looking forward to our next travel adventures.

 

 

April 2 - Canberra

We spent several days in Canberra and I wish that it could have been longer. There is so much to see and do in Australia’s national capital city. Still, Jenny had planned our trip well and we made good use of the time we had available.

A must stop for me was the Australian War Memorial Museum. The building and its records are a great tribute to Australians and their participation in the many conflicts of war. We took a free guided tour and I would highly recommend this. As a visually impaired person I found the tour especially helpful. There are many, many written accounts and Lyle would have been exhausted if he had tried to read them all for me. As it was, our knowledgeable guide chose highlights and I thought it made for a much more informed experience. I was especially interested in the records of World War II as my father was part of the RAAF (Royal Australian Air Force) in the 1940’s in New Guinea. We had his service number and were able to find 44 pages of information about him.

Another must see on the tourist list would be a tour of the Old Parliament Buildings. These are no longer in use but are open to visitors and once again we took the free guided tour. This was much better than just wandering aimlessly through the various rooms and chambers. As an Australian born myself, I think that I was surprised at how much of the history had evolved during the period of my own lifetime.

Another stop on the tourist list was the Australian Institute of Sports. We took the tour. Unfortunately we had chosen to do this on a Sunday and most of the athletes were on a regular day off so we didn’t see much action. However, the tour of the building site was impressive and it was obvious how much Australians value sports as a part of their lives. We noted the names of a few athletes to watch for in the Paris Olympics.

We had our eight year-old granddaughter with us in Canberra and so some of our time needed to be spent with a focus on childhood activities. One of these was the pod playground at the Arboretum. What a fantastic place for kids! Lexi had a great time on all the equipment and Lyle and I loved the setting. The Arboretum is set in a valley to the north of the city and the views are amazing.

Also to the north of the city is the Walk-In Aviary. This was an enormous amount of fun, although perhaps not recommended if you don’t like birds. When we entered the netted area, the squawking of the lorikeets was almost deafening. The admission included a small plate of cut up apple, and when we held these out the birds landed on our arms and hands to feed. A few of the birds even landed on my head. It was a lot of fun and a chance for me to see the colourful birds close up. I am always grateful when I can “see” wildlife of any form at close range.

There are three pictures with this post. The first two were taken at the aviary with the birds and the last one is of Lyle and me outside at the Arboretum.

 

Sue with lorikeet

Sue feeding a lorikeet

Sue and Lyle at the Arboretum

 

 

 

 

March 28 - A Little Road Trip

Last week we travelled from Sydney to Canberra and back.  Canberra is Australia’s capital city and is a great stop for any tourist.

Our trip began with a train ride to Wollongong.  We picked up our rental car at Unanderra and drove on to Kiama, Ulladulla, Mollymook and Bateman’s Bay.  I love the sound of some of those place names.

The road down the coast was scenic but it was our stops that were really great.  Kiama is famous for its blowhole.  It is here that the ocean water surges into a crevice in the rocks.  Because there isn’t enough space for the volume of water, the water then surges up in a mighty fountain-like cascade.  Quite spectacular - especially at high tide.

Our next stop was the beach at Mollymook where you can literally walk for miles at low tide.  We spent the night at Bateman’s Bay, a last stop before the highway turns inland toward Canberra.

I loved all the experiences of the day - the water spray at the blowhole, the sand under my feet at Mollymook and the crab pasta at the Stingray Restaurant at Bateman’s Bay.

I will write more about Canberra in my next post.  There are two pictures with this post today.  The first is at the Kiama Blowhole and the second is of the beach at Mollymook.

 

 

Kiama blowhole

 

Mollymook beach

 

 

 

 

March 19 - Morning Coffee

For the past three weeks I have enjoyed my morning coffee at the beach.  It is one of my favourite times of the day.

Lyle and I have been staying at a beach town an hour or so north of Sydney on the east coast of Australia.  Our holiday unit is just over a ten minute walk to the beach itself - and also to my favourite coffee shop.

Freestate Coffee is a very narrow shop.  All ordering is done inside a busy space. The tables and chairs are set up on the sidewalk outside. I like to take my coffee across the street where I can sit at the beach front and watch the waves.

My morning coffee stop has been made even more enjoyable because of the attentiveness of the coffee shop staff.  I think they may have noticed my “Low Vision” identity badge and began giving me special attention.  Generally they greet me by name, remember my coffee order, and are careful when placing the full take-away cup in my hand.  This recognition and special attention has been a great start to my day.

At home, I often enjoy coffee with friends in a variety of places, but these past three weeks have been special.

There is a photo with this post.  I am sitting on a low stone wall in front of
the sandy beach.  In the background the rising sun is just beginning to light up the waves.

 

Sue on the wall in front of the beach

 

 

March 10 - The Australian Reptile Park

This past week we had an amazing day at the Australian Reptile Park.  Of course, the best part was that we were there with our daughter and granddaughter, but also I was excited to be able to see and touch some of the animals.

One of our first stops was an informational talk about a few of the reptiles.  It was obvious that Ranger Laura loved her job, and because the crowd was relatively small she invited us to come forward for a closer look.  I stood at the rail beside Lexi and we patted the bumpy hide of a small alligator and the satiny skin of a python.  I was hesitant at first as I couldn’t see clearly and didn’t want to touch the head of either of these creatures.  However, Jenny and Laura guided my hand so that I could touch these reptiles safely.

Another amazing stop was at the koala enclosure. Jen had paid for a picture so we all trouped into the enclosure.  We were all able to pet the koala.  They have such soft fur - but also sharp claws.

At another enclosure I was excited to see two fat echidnas waddling close to the fence of their habitat.  On previous visits to the park, the echidnas had always been too far away for me to see.

I would highly recommend a visit to the park if you are in the area.  The Reptile Park is located just over an hour north of Sydney, close to Gosford.

There are three pictures with this post.  In the first picture I am standing beside a very cuddly koala.  The second picture shows Lexi patting an alligator.  In the third picture I am touching the satiny skin of the python.

 

 

Sue with Koala

Lexi petting an alligator

Sue touching a python

 

 

 

 

 

 

March 4 - Flying Blind

This past week, Lyle and I flew from Edmonton to Vancouver.  As usual, I registered as a legally blind passenger.  When I boarded the aircraft I was wearing my low vision badge and I used my white cane. Lyle’s seat had been changed to an exit row and I was now four rows back from him and on the other side of the aisle.  Essentially I was travelling alone.  I was mildly annoyed when I wasn’t given the required safety briefing but I didn’t complain.  The flight was already delayed by over an hour and I just wanted to get going.

We had a relatively uneventful flight over the mountains, but as we approached Vancouver Airport the trouble began.  We were flying in heavy rain on final approach to the runway with the flaps and wheels down. At about 300 feet above the ground the airplane suddenly lurched forward and the power surged.  Immediately the cabin lights were turned off.  The airplane veered crazily from side to side as we made an abrupt turn into the clouds. I felt as if we were out of control and I imagined that the pilots were struggling from flying visually to a sudden return to instrument flying conditions. We eventually regained altitude and went around for another approach.  This time we came in for a smooth landing.

Lyle and I have flown hundreds of times over the years, but for me this was the most frightening experience ever.  I was very concerned about a possible crash landing. I think that that day I wasn’t the only one flying blind. For that short period of time the two pilots on the flight deck were also flying blind. We all had a lucky escape.

February 25 - Time

The other day someone who didn’t know me very well, but did know that I was visually impaired, asked, “What do you do with your time? You must find that the time just crawls when you can’t see to do anything!”

This fellow was quite serious with his question. I hastened to reassure him that my time never seems to stand still and that I keep quite busy indeed. In fact, because I don’t see well, it often takes me longer to complete certain tasks. Frequently, I find that I don’t have enough time to do all the things that I would like to do.

There are many misconceptions about blindness but this one was new to me. A person who is blind can do very much more than sit and watch the minutes tick by. I think that people have the choice to fill their days in whatever manner they choose. This goes for whether they are sighted or not. The trick is to find the right balance.

So, what do I do with my time? I walk with a friend five days a week. I swim once or twice a week. I belong to three different social groups. I facilitate a support group for people with vision challenges. Although I can’t see print I am an avid reader of audio books. Together with Lyle we have a strong relationship with our children and their families. We both like to travel. Oh, and of course, I like to write on this blog!

I am very aware of time, but I try to keep a balance. As my Dad often said, “Time enjoyed wasting is not wasted time.” Yes, I do keep busy but I also like time to relax and smell the roses.

February 17 - White Cane Use

Generally speaking, I’m not surprised when people ask about my vision loss, but in the last few weeks and months I have been asked more specifically about my use of a white cane. When do I use the cane? Do I really need to use it? When don’t I use the white cane? Why don’t I use the cane all the time? Is this because of the stigma that is attached to it?

Personally, I have never felt the stigma that is sometimes perceived by others as a stigma attached to the use of a white cane. I have many feelings about my cane but a feeling of negativity that my cane makes me less of a person isn’t one of them. I sometimes see my cane as an awkward nuisance but most of the time I see it as a useful necessity. This doesn’t mean that in the beginning using the cane didn’t take some practice and getting used to the feel of it. It was hard to explain when I didn’t really understand it all myself.

So, when don’t I use my cane? For one thing, I never use it in my home. I don’t use it when I am visiting friends. I don’t use it in familiar places when I am walking with Lyle or a friend and when I know that the ground is level. I trust them to tell me if I am approaching any obstacle in my path.

When do I use my cane? Well, in mostly any other circumstance. I nearly always use my cane if I am out and about by myself in unfamiliar places or where there are steps or stairs. I always use my cane when we are travelling. Travelling with my white cane just makes life all that much easier.

I think that my white cane serves a double purpose. Firstly, it does help me to clear a path in front of me. As I hold the cane, I can detect obstacles in my way. I can feel for steps or slopes before I trip on them. Secondly, when other people see my cane they will usually move out of my way when I am walking towards them. People will often offer help when I look as if I need it. Sometimes when I am standing alone and waiting for Lyle, strangers will approach me to ask if they can help in any way. Often in the public washrooms when I am searching for a paper towel or soap dispenser, another woman will help. As a side note, I’m not sure why the powers that be feel the need to hide these essential items in the most unexpected places!

I do know when I need to use my cane and when I don’t think that it is necessary, but I suppose that it is the perceived inconsistency in my use of the cane that has prompted questions and curiosity. I hope that this simple explanation helps. As to whether or not I really need the cane – what is with this question? A person would not be asked if they really needed to wear glasses. I look at the white cane as a larger and more obvious aide to help me negotiate  a world geared to sight.

February 10 - Chair Yoga

Did I tell you that I am back doing a chair yoga class? I restarted in January with the same instructor as last year.

Kris is excellent. As well as demonstrating the various poses, he describes the set up of each. I know that I would be quite at sea if it wasn’t for this detailed instruction. Kris keeps an eye on all of us, and will often go around the group to adjust our positions where necessary. I find this hugely helpful.

One of the poses that Kris nearly always incorporates into the class is a halfway sitting position. This past week I was especially glad of this practice. Lyle and I needed to go to the emergency room at the Rocky View Hospital in Calgary. Now, if you live in Alberta and likely other Canadian provinces, you will know that waiting time these days is exceptionally long. We were fortunate – just over four hours. However in that time period I needed to get up and down from my chair at least seven times. The chair had armrests but I was definitely reluctant to touch anything – much less where multiple hands of sick strangers had touched before me. How glad I was that I had my yoga practice behind me. I was able to get up and down quite easily with only my rear end touching the seat.

After this experience, I have determined to practice more of the poses I am learning in the weekly classes. Yoga is a physical and meditative exercise and I’m glad that it is now part of my exercise routine. Thanks to Kris for making the class such an encouraging experience.

 

 

February 2 - Service Dogs

In past posts I have sometimes written about service dogs – guide dogs for people who are visually impaired, hearing impaired or mobility challenged. Dogs, amazing creatures that they are, provide a variety of services to the human population.

The other day I was fortunate enough to meet Kida. Kida is a certified search and rescue dog. Our meeting was by chance. Kida and her handler were walking around the same indoor complex where Lyle and I often walk on wintry days. As I approached Kida and Jasmin, I noted that the little bells on Kida’s collar had stopped jingling and when I got really close, I could see that Kida had stopped to allow me to pass by. I was very impressed with this obedience training.

When I stopped to chat, Jasmin told me that the blue vest that Kida was wearing identified her as a “Search” dog. She was a cadaver dog, especially trained to find human remains. That day was part of her training. Although there weren’t any bodies to be found, Jasmin had hidden a blood stained tissue in one of the nearly 300 horse stalls where we were walking. Jasmin told me not to be startled when I heard Kida barking. That would simply mean that she had found the hidden clue. Indeed, this is what happened only a few more minutes after we had spoken.

Kida was a beautiful and fairly large German Shepard. Her normal walking gait was graceful but on her mission to find the hidden tissue she ran at speed. Jasmin said that this was the reason for the jingling bells. If Kida was on a hunt in the bush, her search could take her out of sight. The bells helped Jasmin find her again and also of course, locate her quarry.

Kida and Jasmin are part of the Search and Rescue Dog Association of Alberta (SARDA). Jasmin said that she thought there might be about 25 dogs and handlers in the Edmonton group. The members are volunteers and don’t undertake private requests for search and rescue quests. They work under the direction of law enforcement and other official agencies. However, SARDA is a charitable organization and you can donate to them for tax receipts.

Meeting Kida and Jasmin was a pleasant and informative interlude in an otherwise repetitive walking routine. Although Kida doesn’t only work with an individual on a daily basis as do other more well known service dogs, her training is constant. Kida and Jasmin provide a valuable service to communities in crisis.

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.