September 25 - In the Kitchen

This past week I had coffee with my friend, Sue. Sue is completely without sight and we often chat about some of the challenges associated with this aspect of our lives. When we talk, I am often reminded that my challenges are minor compared to Sue’s. As well as having no sight, Sue’s husband passed away several years ago and she now lives alone. Over our last coffee chat, we spoke about the difficulties of managing in the kitchen.

For both of us, the stove seemed to be the biggest challenge. After a few minor burns, Sue has given up on using this. I am able to use our own kitchen oven and stovetop without too much difficulty but I also give up when we stay elsewhere with a different stove. That is when Lyle takes over the cooking!

One of the problems for me is the lack of tactile knobs on newer stoves. My own stove is an older version and so I can turn the knobs to temperatures by guesswork. I can’t do this when the surface is flat. The microwave also has a flat surface but on this I have attached little tactile buttons. A crockpot and air fryer are more easily manageable.

Cooking meat is also tricky. While it isn’t a health hazard if the vegetables are over or under cooked, meat is a different matter. If I am frying meat, I will often call Lyle to ask if there are still any red bits left in the pan. Sue doesn’t have the advantage of calling for someone with sight.  If I am alone and cooking meat, I will often put the whole meal in a casserole dish and give it that extra boost in the microwave.

It’s helpful to talk things out with other people who might experience similar challenges to my own. For instance, I remember discussing the problem of peeling and cooking potatoes. Sue’s solution was to buy small new potatoes that have no need of peeling. Norma, another friend with no sight, said that she would feel the outside of the potato to see if it felt smooth. If it was peeled  properly, the potato would feel smooth as opposed to the otherwise rough outer skin. I like the potatoes from our garden so I use this method.

In our chat last week, Sue and I also talked about transporting dishes from the kitchen counter to the table. It’s hard to do this if you have a cane in one hand and the dish in the other. Another friend with no sight solved this problem by using an old-fashioned tray mobile. She is able to put the dishes onto the moving cart and wheel them across the lino floor to the table. This friend also had a few mobility issues so it was a good solution for her.

I like talking over shared problems and solutions with friends who also have no or low vision. I have learned a lot from the ways that other people have adjusted and coped. This is especially so when it comes to working in the kitchen.

 

 

 

 

September 10 - Counting Steps

I often count steps. I do this in the same way as many people do. I use a step counter to keep track of how far I walk each day. Currently I am doing a virtual walk along the coast of New South Wales in Australia. I have found this to be hugely interesting as I have been to many of the spots along the way in real life. The most exciting point to date was at the halfway marker when I passed through Terrigal on the Central Coast. This is the town where Lyle and I return to for family visits in Australia.

This isn’t my first virtual walk. I started the walks as a solitary exercise back during COVID. I didn’t think that I would continue but here I am on walk #7.

I also count steps in a different way. As a partially sighted person I count steps because it helps me think of where I am. This is especially so on stairways. I count my steps going up and know that there will be the same number coming down. I know the number of steps in many familiar locations. There are fourteen steps to our basement. There are four steps leading into my sister’s flat. There are six steps leading to the downstairs area of the church we attend. I even remember that at a club where we often eat in Australia, there are 22 steps leading upstairs.

I have learned never to quite trust when other people tell me how many steps are in front of me. Their method of counting might not be the same as mine. For instance, I know that Lyle counts one step leading into our house, but I count it as two.

At a recent support group meeting, Chelsea told us that counting steps was a valuable tool for her. Chelsea has less sight than I do, but likes to be outside in her yard. She said that if she doesn’t pay attention and count her steps to orient herself; it is easy enough to be lost even there.

I often find myself counting steps – sometimes even when there is no real need to do so. Counting steps is a small strategy for someone with little vision. For myself, I find it a very useful tool with no other technology or device required.

September 1 – Sight, Speech and Fatigue

In the past, when people have asked me what I can see, I explain that I don’t see print and other details of central vision. This explanation usually suffices. Sometimes though I will go on to say that I don’t see as well in certain lights, or when I’m not feeling well, or when I’m tired. I know this to be true although I’ve never thought of putting any sort of measure to the phenomenon of fatigue.

With speech, this fatigue factor has been way more obvious. I might be conversing close to my pre-stroke normal speaking voice when out of the blue, my speech becomes quite broken and hesitant. Although I might not be feeling tired physically, I now know that this change is a sign of fatigue. It is my brain telling me that it has had enough and needs time to rest.

I am sure that this brain overload can happen in many ways and for many reasons. Most of us realize that our reactions are not as quick when we are tired. Now as I am recovering from the effects of my stroke, I have become more aware of this phenomenon.  I realize that I need to pay attention to the signals my body is giving me.

It has been a hard lesson for me. Although the words of a familiar song tell me otherwise, I have learned that I am not invincible. My brain does get weary of all the demands I make on it. The feeling of fatigue and the changes in my speech are a definite reminder that I need to take a break. Although it has been a hard lesson, it’s also been a, good one and I find that I am more balanced because of it. Giving in to fatigue, taking a time out and coming back refreshed is a good strategy for all of us.

 

 

 

 

August 15 - Benchmarks

Lately, I have been thinking about some of the major events that have marked changes in my life. Possibly, this train of thought has been brought about by my recent stroke. The stroke caused changes in my normal speaking voice but it also has caused me to think a little differently. After many years of good health, I am now more aware of my vulnerability to illness or injury.

To a certain degree, we all have these benchmarks. There is the thought that some things were true before the event and others not so true afterwards. There is a dividing line that marks some sort of change. On a personal level, I can think of a few instances. One major happy event was our wedding. I was single and then Lyle and I became a couple. Just over a year later, our first child was born and we moved from being a couple to becoming a family. In both cases, life was different before and after.

Not all changes are by our own doing. My sight loss was certainly nothing that I chose for myself. There was definitely a line between the day I was fully sighted and the next day when I became legally blind. I know that other people experience change or benchmarks that can have decidedly more dramatic and traumatic changes than my own. We must all play with the cards we are dealt.

It was as I was contemplating all this that I recalled the series of White Cane Connections walks across Canada. This was a significant event for me. Lyle and I entered this undertaking way back in 2012. In fact, on this date in that year we were in Ottawa ready to share with a group of CNIB staff about my personal experiences with vision loss and also the experiences we had had on our walks. That was a great year for me. We met so many people with so many interesting stories to tell. Perhaps you are one of them reading this right now! I have great memories of the shared times, the shared challenges and the courage of newfound friends who were daily coping with those challenges. The White Cane Connections walk was definitely a benchmark for me. The people I met changed my life for the better.

 

 

 

 

August 4 – Dogs, Guides or Pets?

This is perhaps a strange topic for me to write about. I don’t have a guide dog and I don’t have a dog as a household pet. Recently though, I was reminded of how comforting an animal can be. It was our granddaughter’s new puppy that stirred this thought in me.

I have been told that following a stroke, it is easy to become depressed. Although I haven’t felt depressed, there have been a few times when I have been feeling a bit down. This was so on my first weekend out of hospital. What a blessing it was that we spent those few days with our daughter and family...and that included our granddaughter’s new puppy.

It was quite the comfort to cuddle that puppy – different than snuggling up to a blanket or stuffed toy. Tucker was a warm, breathing, appreciative little body. He didn’t make any demands but wagged his tail and gave a few little happy yelps when I scratched behind his ears.

As for guide dogs – well, as well as being a practical support, guide dogs can offer a similar comfort. At least that is what I have been told by several friends who own one.

Personally I don’t feel eligible for a guide dog. It is one of those times when I can say that I have a little bit too much vision. I practiced with a friend’s dog once but found myself pulling back on the harness and trying to lead the dog instead of having the dog lead me. Also, in the end, I’m not really fond of having dogs or any kind of pets inside the house. 

In the meantime, I am availing myself of every opportunity to cuddle with Lexi’s dog, Tucker. He likes to play and likes to be petted. I’m glad that the family lives close enough so that I can indulge myself this way.

There is a picture with this post. I am sitting and holding Tucker on my lap. He is a small dog, and a cross between a Shih Tzu and a Bichon Frise. He is a really cute puppy.

 

Sue with Tucker

 

July 28 - Loss and the Roller Coaster

The emotional highs and lows of loss can be much like riding an unfamiliar roller coaster. You just never know when the peaks or the valleys are going to crop up. Most of us have experienced loss and grief in some form or other. It might be the loss of someone or something we hold dear that brings about a sense of sadness.  For me, it has been the loss of my normal speaking voice. It has been a confusing and frustrating time.

I have always been a fairly stable person when it comes to emotion so I have been somewhat surprised at my current state of emotional fragility. In many ways, the grieving after my stroke has been similar to the loss I felt with my vision loss. Both losses have been a part of my self, my identity so to speak, and both losses came about without warning. I think that the suddenness of both has contributed to the feelings I have experienced. There simply hasn’t been time to adapt to my new self.

As well as the similarities between the two losses, for me there has also been a subtle difference between them. My sight neither improved nor declined when I had the occasional emotional outburst. With the speech loss, intense emotion has triggered a traumatic decline in speech. Thinking about this, I don’t know that with the vision loss I was so intellectually analytical of my feelings, but time has added a certain perspective.

Strong emotion certainly affects my ability to speak. For instance, last week I was upset or even angry, by a fairly minor incident. My speaking went from nearly normal to nearly zero in an instant. Then the other day, I received a gift. I was overcome with appreciation. I burst into tears and my speech suffered an immediate decline. It didn’t seem to matter that one response was a negative reaction and the other was a happy and heartfelt one. I was intensely emotional about each situation although neither reaction was proportionate to the occasion.

I have never enjoyed roller coaster rides at amusement parks, and this roller coaster ride of emotion is no different. Hopefully, soon my body will adapt. I can report that with the daily speech therapy, the up days are becoming more frequent than the downs. I am on the road to recovery. One day I hope to get off the roller coaster and head on to a more sedate and predictable ride.

 

 

July 20th - Stroke Survivor

I was mildly surprised when I first heard the term "stroke survivor." In the past I would have been more inclined to think of the words "suffering from a stroke" or "victim of a stroke." The term survivor put a whole new spin on my way of thinking.

While I was surprised with the term in general, my eyebrows really raised up when someone referred to  me as a stroke survivor. I knew that I had had a mild stroke that had only affected my speech but not my mobility. Nevertheless, at the time and for the few days following I didn't feel like much of a survivor.

In addition to my obvious hesitancy of speech (apraxia), I found myself dealing with fatigue and a bit of an emotional roller coaster ride. Fatigue and depression can be common after effects of a stroke. For me it posed the perennial question of which came first the chicken or the egg? Is my speech poor because I am fatigued? Or am I fatigued because I am down and my speech is poor? The frustration is not knowing when anything will hit. 

Usually I am more rested in the morning and can even have a brief period of spontaneous recovery of speech. This gives me a feeling of optimism until the reversal occurs. My therapists tell me that the road to recovery is not a steady incline but rather a series of ups and downs. This is one of the hardest lessons of all but I am making progress. 

Over the past weeks I have met people who have experienced strokes far more debilitating than mine. Nonetheless, we have all experienced a sense of loss and to a greater or lesser degree a loss of identity. There is a need to redefine ourselves. It is how we survive - and we will survive. I am a stroke survivor.

July 12 - Sight and Speech

I haven’t told you yet how I first suspected that I might have had a stroke. Nor have I mentioned what I now see as the connection I have between sight and speech. Let me take you back to the beginning of this saga.

Each morning I play Wordle with my daughter. It is our way of saying good morning to each other and having a little fun with a word puzzle. Each morning, I go to my cell phone and ask Siri to send a text message to Jennifer. On the morning in question, Siri couldn’t understand what I said and I had trouble getting out the words I wanted to say. When I tried to explain this to Lyle, he also noticed the change in my speech. With strong prompting from both our son and daughter, we knew it was time to go to the hospital emergency room.

In the past, I have often thought about sight and the connections between other senses. Mostly I have thought about diminished sight and an increased awareness of sound, smell and touch. I have also thought about an increased dependence on memory. Truthfully though, I have never thought just how much I depend on speech and how much speech is a part of my identity. The first hours and days after my stroke reinforced just how dependent we all are on the ability to verbally express ourselves.

While my stroke inhibited my ability to get the words out, I also lost the ability to use expression with my voice. Because I don’t see facial features, I rely heavily on the nuances of speech when others are speaking with me. With my new jerky and hesitant speech, now it was other people who needed to listen more carefully to what I was saying. It was frustrating all around. We were discovering together that expression of speech was just as important as the words themselves.

Let me finish this post with optimism. I’m sure I don’t know how the brain works, but nearly a month after my initial stroke, one night I found that I could speak nearly normally again. It was as if my brain had flipped some sort of switch. I can’t pretend to understand how this might have happened. Unfortunately this phase didn’t last. I’m still not back to 100% for sure, but I’m a lot closer to it than I was. I will be continuing with speech therapy over the next while until I meet my goal of normal and fluent speech again.

 

 

 

 

July 6 - Hospital Stay (Part 2)

Over the past few days I have continued to reflect on my stay in hospital. I thought that I might elaborate on a couple of aspects here.

Meals: The meals were okay but I did lose weight. At meal time, a tray was placed in front of each patient and I grew accustomed to where the various dishes, drinks and cutlery were placed on the tray. However, there were a couple of times I ran into difficulty.

Usually, different aides would ask if they could help in removing lids, etc. However, twice when I wasn’t paying attention, aides got to my tray before I did. The lids were removed before I felt what I anticipated what would be covered dishes. One time I stuck my hand into my water glass. This wasn’t too bad. At least it wasn’t hot coffee. The other time I stuck my fingers into some sticky substance. I think it was dessert but I had to eat the rest of the meal with sticky hands.

Motto: If you are going to help someone, be sure to ask first if your help is needed and explain what you are doing.

I was grateful when staff offered to fill out my menu request for the next day. This was certainly something I couldn’t do on my own.

Mobility: I was fortunate in that my stroke didn’t affect my mobility. For the ten days I was in hospital, I determined that I would attempt to keep as much as possible to my routine of walking. I soon discovered that this was best to do either early in the morning or later after the evening meal when most other patients were in bed or at least in their rooms. The problem with this routine was the staff. Everything seems to be digitalized these days and the hospital computer screens were mounted on larger rolling wheels. While this was convenient for the staff, it was most inconvenient for me when staff left the equipment int the middle of the hallways. I was sure that sometimes they could see me coming with my cane, but rarely did they seem to make an attempt to move to the side.

Advocacy: As I mentioned in my previous post, a hospital stay these days makes having an advocate for your needs almost imperative. Staff seemed to me to be flooded with information but this wasn’t always conveyed to the patient. Patient records were kept diligently and in detail. Staff seemed to be always tapping away to make effusive notes on each patient. Lyle wondered how they would ever have time to read everything that was written. I tended to agree with his summation.

For instance, I was due to have a test where I was to have no caffeine for 24 hours prior and nothing to eat or drink the morning of. Nobody conveyed this information to me or to the early morning staff. I had my usual cup of tea, was taken down to the cardiac unit, only to discover that my full day of tests needed to be postponed for another 24 hours. What is that saying about the left hand not knowing what the right hand is doing?

Time: My days in hospital went quickly with various appointments and the nights tended to crawl. I couldn’t see the wall clocks and I was so glad that I had my audible watch with me. My original watch battery had expired only a couple of weeks previously and I had only had my new one for a week or so. I guess that timing was everything!

Having said all this, I must say that in general, I found the nursing staff and doctors to be most helpful. My gratitude to all who work in the medical profession. What would we do without you!

Thank you, thank you!

 

June 30 - Blind in Hospital

Life is full of surprises. Unfortunately, they aren’t all good surprises. Two weeks ago and out of the blue, I ended up in the emergency room of our local hospital. It turned out that I had had a small stroke.

God was looking after me that day. After an initial examination, I was sent on to the larger city hospital. The series of tests that followed – blood work, an ECG, a CT scan and an MRI – was all a bit of a blur. I didn’t have to think much – just go in whatever direction I was pushed. Lyle was with me when we met with the neurologist. It turned out that the stroke had seemingly only affected my speech. Within hours, I was admitted to the Stroke Ward. To be admitted so quickly was a miracle in itself.

For the next two days, I was monitored fairly closely. Each time there was a change in staff, Lyle was there to make sure that they knew of my sight challenges. It was too difficult to pin my low vision ID badge to my hospital gown and I didn’t need my white cane while I was in a wheel chair. We needed to advocate for ourselves if there was to be any special assistance.

On the third night, I was transferred to the Rehabilitation Unit. This was the most confusing part of my hospital stay. Lyle had gone home for the night and I was quite disoriented in my new surroundings. The next morning, I needed a guide to lead me to the dining area and find a vacant spot at a table. I felt helpless, a feeling I hadn’t experienced since my initial vision loss those many years ago now. It was a relief when Lyle arrived later in the morning to orient me to the new room. As I was now able to dress in street clothes, he also brought two of my ID badges and several of my cards with this blog address. With my new hesitant speech, I found it both difficult and exhausting to try to explain to staff that my vision loss had nothing to do with the stroke.

I am home again now and waiting to begin speech therapy. I also have several more medical appointments lined up. Hopefully the worst is over and I can begin recovery.

In retrospect, I am looking back to my hospital stay as an opportunity to educate hospital staff personnel – technicians, nurses and yes, even doctors – as to the need, challenges, and also the capabilities and abilities of someone who is visually impaired or legally blind. I hope that I have done a good job with this. Although I didn’t ask for this opportunity, I hope that in some small way I have paved the way for other blind or visually impaired people who might find themselves as hospital patients.

June 25 - Seeing Colour

We were at a function when a friend said to me, "I really like that shade of purple you’re wearing." I had to stop myself from turning around. Could this friend be talking to me? I had always thought that the blouse I was wearing was pink!

I find it difficult to distinguish between various shades of colour. Obviously, I don’t do well with pink and purple, but differences between black, navy and brown and even dark green are also hard to tell apart. I know that it doesn’t really matter what colours I am wearing, but I do try to match.

How do I overcome this? Well, in my wardrobe I hang matching colours together. For instance, with my navy pants, I hang any blue toned blouses or jackets. The trick then is to put the clothes back on the corresponding hangers after they have been worn.

In the beginning stages of my vision loss, I used to fret about matching socks. Again, it was the difference between black, brown and navy or white versus beige. My friend Norma told me how she solved the problem. At that stage, she did have some limited sight, so she only bought either black or white socks and always of the same brand.

I have followed this advice. As Norma told me – “Hardly anyone ever looks at the colour of socks anyway.”

The other day, Chelsea and I were laughing about the times we have worn mismatched shoes or sandals. The key here is storage and organization. It is helpful to replace a pair of shoes together. That way they are there when next you go to look for them.

While all this sounds very simple, it is easy enough to be rushed when a person is busy. The lesson is to take the extra minutes to be organized. When a person can’t see to look for lost or misplaced items or colours, it is even more important to take those few extra minutes to be organized.  

The last word – if you do happen to mess up, you can always say that it’s just a fashion statement!

June 17 - Blind or Partially Sighted

So, did you think about the question from my last post? In your mind’s eye, what do you see when you think of someone who is blind or partially sighted?

In my adolescent years, we lived near the office of Vision Australia. Sometimes at the railway station I would catch sight of people who were blind coming or going from there. In my memory, they were nearly all young or middle aged men. I knew they were blind because they wore dark glasses and used white canes. I don’t recall seeing any person with a guide dog.

Until my own sight challenges, this was my image of what a blind person looked like – a male wearing dark glasses and using a white cane. I had never even heard the current politically correct term “partially sighted”.

This image has undergone a considerable change since my own vision loss. Personal connections with other people who have diminished sight has expanded and improved my original and misinformed perception. People who are blind or partially sighted come in all shapes and sizes and from many varied backgrounds. Blindness doesn’t discriminate when it comes to age, race or gender.

This became very clear to me when Lyle and I undertook our series of white cane walks across Canada. In the course of those walks we encountered literally hundreds of people who were coping with the challenges of vision loss. Some used a white cane, some were guided with their hand tucked to the elbow of a friend or family member. A few were assisted by a guide dog. The youngest participant on our walks was a four-year old boy. The oldest was a ninety-nine year old woman. We didn’t require any registration for our walks so we were never sure just who would come to participate.

I do remember a walk at Sault Saint Marie. We had arrived early and were waiting by the water when a group of well-dressed men arrived – all wearing dark glasses. Was this to be our group for the day’s walk? As it turned out – no! This was simply a group of business men ready to join a function on a waiting boat launch. Unless you are paying attention or know who to expect, there really isn’t much difference in the physical appearance of someone who is blind from someone who is fully sighted.

So, what does a blind person look like? There is no one answer. Without the accompanying cane or dog-guide, someone who can’t see could look like anyone else. There is no one defining physical feature.  Perhaps that is why I use my white cane or wear my low vision ID badge. There are some situations when it is helpful for me to be identified as a person with a visual challenge.

 

 

 

June 8 – Here’s Looking At You

Mark and I were chatting about the various aspects of blindness, when he looked at me and said, “You know, if I didn’t know that you couldn’t see, I wouldn’t know that you couldn’t see.”

This outward appearance of being sighted even when the opposite is true, is one of the more interesting aspects of blindness. It is also likely one of the more confusing aspects that confront people who  themselves are able to see. If my eyes look the same on the outside, how can it be that I can’t see from the inside looking out?

When Mark made the above comment, we had been talking together for a little bit already. We were sitting in comfortable chairs with no need to move about. My white cane wasn’t visible. There wasn’t anything that I needed to read or have read to me. There wasn’t any outward sign of my sight challenges. We were just two people having a chat.

As is my usual practice, I had been trying to “look” at Mark as he spoke. I remember another completely blind friend telling me that this is what he tried to do. He couldn’t see, but if it made the other person more comfortable in the conversation he would try to focus on the direction of the voice. To me this made sense and generally speaking I try to do just that.

I think that is what had Mark fooled. I wasn’t trying to hide my vision loss, but there was no need to show it either. Mark’s observation led to another interesting topic. What does it look like to be blind?  Do you have a picture in your head of what a blind person “looks like”? Perhaps this is a topic I can explore in another post.In the meantime – Here’s Looking At You!

 

 

May 31 - Guide Dogs

Each year the Lions Foundation of Canada holds fund raising walks to support their dog guide program. The walks are held nationally in towns and cities across the country. Our local chapter of Lions has been supporting the cause for a number of years.  Knowing the importance of the money raised, I usually try to participate in the annual walk.

The Lions Foundation offers guide dogs to Canadians who are in need of the service. This isn’t only for people who are visually impaired, but could also be for the hearing impaired or for people with other forms of a mobility disability. The cost to raise, train and then match each dog with a potential owner is around $35,000. The dogs are then offered to the new owners free of charge.

If you want to find out more about the program, you can google "Lions foundation of Canada, Dog Guides". You might also want to mark the date for next year’s fund raising walk – May 31, 2026.

There is a picture with this post. I am standing beside my friend Irma near the beginning of this years walk. We have walked together for a number of years now. You might call the picture the long and short of it. I am tall and there is quite the difference in our two heights. In the background is a path leading to a bridge across the river. It is a lovely place to walk.

Sue and Irma on the path

 

 

 

 

May 23 - Beyond Sight

This week I participated in a night called Beyond Sight. The event was organized by CNIB in order to showcase what people with limited vision could accomplish. I was there as an author with my several writing projects.

It was a great night and Lyle and I both enjoyed the camaraderie as much as seeing the various table displays. I spoke with Hazel who had some of her completed knitting projects with her. The most impressive was a beautiful red shawl. She wore this and I couldn’t help but to admire it. She said that most of her projects were done as small gifts for friends and family and that she just liked to knit.

I was pleased to meet Lorena in person. For the past year or so Lorena and I have been part of a Zoom call for facilitators of support groups. I have never been able to actually see Lorena on the computer screen but meeting in person was a plus. Lorena explained how she loves baking – not cooking so much as baking. She had brought quite a few samples with her for the evening.

Then there was Amanda. Amanda started her own small business and her table featured a variety of items that would identify someone as having low vision. There were caps and buttons all of which had the identifying tag that would show that the wearer couldn’t see well. I often wear a badge that identifies me as being partially sighted. I find that this is helpful both to me and for others. I don’t have to explain my sight and other people don’t need to ask. If I’m not using my white cane, sometimes the ID badge is sufficient.

Lyle spent some time chatting with Susan who was there with her Celtic Harp. Susan said that it was the first time she had played in public but I hope it won’t be the last. Susan’s music was a lovely backdrop to the evening. We learned that Susan was also an avid gardener.

One of the best parts of the night for me was meeting up with an old friend. I had met Carrie near the beginning of my journey with vision loss. It was with her encouragement that I began learning to use JAWS. JAWS is the audible screen reading program I use on my computer. The program doesn’t use the mouse but rather uses keyboard commands to navigate the screen. It did require quite a bit of initial learning. I had also interviewed Carrie for Chapter 5 of my book, Out of Sight. The Chapter was titled, Winning the Gold – something Carrie did as a member of the Canadian goal ball team in the Paralympics.

Carrie also introduced me to Viviane Forest. What an amazing person! Viviane was the first Canadian woman to achieve a gold medal in both the summer and winter Paralympics. Initially her gold was for goal ball, but after an injury she took up downhill skiing. I was impressed by her athleticism.

For Beyond Sight, Viviane was there to display her paintings. Viviane has travelled extensively and her paintings, bright and colorful, helped us to travel with her. Viviane said that her sight is quite poor and that sometimes when she was painting she would need to get very close to the canvas – sometimes so close that she would end up with paint on the end of her nose.

Next to Viviane’s art work were some very colourful quilts. I found myself wondering how someone with low vision could create such intricate and beautiful  coverings. I was impressed with the design and the craftsmanship. Kristin was a very talented quilter.

Beyond Sight was a great event. A big shout out to Sanduni for organizing it all. Like Sanduni, I would hope that this could become an annual event. Life doesn’t need to stop with vision loss. There is indeed life “beyond sight”.

 

 

 

May 8 - Award

Yesterday I was presented with the King Charles III Coronation Medal. The award was such an honour and I was pretty excited by both the nomination and the presentation itself. It was a wonderful day with friends and family helping me to celebrate.

The award also gave me cause for reflection. I remember how panicked, confused, frustrated, sad and even diminished I felt when I first experienced lost vision. I had lived my first thirty years as a fully sighted person and I had no idea of what it was like to be visually impaired, legally blind or partially sighted. I would never have made it through those first years without the support of my immediate family. At that time, every step of the way forward was taken after little family conferences around the kitchen table. Even though it was my eyes, my sight loss affected each of us.

It took a while – well, years in fact – before I was able to open up about my sight challenges. When I finally stopped trying to bluff my way, I found additional support from our friends. While family gave me that first emotional support, friends now offered practical help and encouragement.

When my life changed direction all those years ago I never imagined where the path might lead. I have been fortunate. While the King Charles award recognized what I have been able to achieve and to give to others, the award has made me even more cognizant of what others have given to me. I am happy with the award, but I am also grateful when I think that I might have inspired others who are struggling with vision loss. I don’t look at this award as the end of the path. Rather it is a stepping stone in my efforts to promote an awareness of the significance of the white cane and of people who need to use one.

The picture with this post shows Craig Peterson, Executive Director of CNIB for Alberta and Saskatchewan, standing beside me after he presented the award.

 

Sue with Craig Peterson of CNIB Alberta receiving her Medal

 

 

May 3 - White Cane and Rain

For our last week in Sydney, there were on and off rain showers. Fortunately we were able to dodge between the showers and continue with our outside activities. However, the rain did remind me of how awkward it is to balance both my white cane and an umbrella.

If the truth be told, I rarely use an umbrella. It is just too tricky to be holding my cane pointed down in the one hand and an umbrella pointed up in the other. Somehow or other the up and down of it throws me off balance. If I do need to be out in the rain, I tend to wear a raincoat. Even this isn’t very satisfactory. When I hold out my cane, by hand usually gets wet and consequently, cold. As I move my cane about, sometimes the rain water trickles up the edges of my sleeve. All in all, walking outside in the snow is preferable to being outside in the rain. Then again, being outside in the sunshine is better yet.

There is a picture with this post. I am sitting beside the fountain in the plaza at Summer Hill drinking my morning coffee. Morning coffee outdoors is one of my favourite things to do when we are away.

Sue sitting at a fountain in a plaza at Summer Hill

April 23 - Happy Easter

Lyle and I are nearing the end of a holiday in Australia.  For the past ten days we have been staying at my sister’s home in Summer Hill.  Summer Hill is a suburb of Sydney’s Inner West.  It is an interesting mix of the old and historical and the new and trendy.

This was evident in the local neighbourhood church we attended on Sunday.  St. Andrew’s was cathedral like in appearance.  It was a huge building with multiple stained glass windows and capped with a very, very tall spire.  The church was completed in 1883.

Inside, the back pews had been removed to create an open space for children to move around and where tea and coffee were served after the service.  The front part of the church had traditional wooden pews.  The congregation comprised mostly younger adults and there were children everywhere. The atmosphere was vibrant and enthusiastic.

Upon entering the church, two greeters handed us service bulletins.  This was good as the service didn’t follow the traditional Anglican format.  Two hymns were sung with the pipe organ and three songs were accompanied by a five-piece band and lead singer.  It was a mix of  the traditional and the more modern. I was disappointed when the words of a traditional hymn I knew by heart had been changed.  Possibly this was meant to make it more inclusive but I was now unable to sing as the words were unfamiliar to me.

While Lyle and I usually travel together, I often ask myself if I would be able to do the same things if I was alone.  St. Andrew’s passed the test for me.  As well as the printed bulletin, verbal directions as to whether to sit or stand were given as to the flow of the service.  Greeters and ushers were helpful.  This was a church I could easily return to.

There is a picture with this post.  I am standing at the gates to the courtyard in front of the church.

 

 

Sue at the gates in front of the church

Easter greetings to everyone from Lyle and myself. 

April 14 - Overheard Conversation

Lyle and I were walking through the plaza.  As we approached a nearby picnic table I heard the following conversation between an older woman and a teenage boy.

Woman: “You should move your bike from where you dropped it on the sidewalk.. Somebody might trip on it.”

Boy: “It’s okay where it”s at. You would have to be blind not to see it.”

I was just hoping that I wasn’t going to be the blind person who tripped over the bike that had been carelessly dropped in the middle of the pavement.

Fortunately, even though the bike wasn’t moved, I missed it!

April 9 - The Shoreline

When my sight first changed, I found that walking in a straight line with my cane could sometimes be difficult.  My mobility instructor suggested that I use the tip of my white cane long the “shoreline.”

I was confused.  At the time we were walking along an inside hallway of a CNIB building. What did Janice mean by the “shoreline”?  She explained that the shoreline was simply the edge of the path. Inside it might be where the carpet meets the wall. Outside it might be where the pavement meets the grass.

I found this suggestion very helpful, although it doesn’t apply everywhere and in all locations. If you are a white cane user you will know that there are many wide surfaces without an obvious shoreline, such as an airport terminal, a shopping plaza, a playground or a park.

I often think of this first white cane mobility lesson when Lyle and I are actually on the shore of the ocean. That is where the following picture was taken.  I am standing on a sandy beach with small waves rippling towards my feet.  The edge is not so clearly defined.  I know I will have “crossed the line” when my feet actually get wet.

 

Sue with white cane at the shorline

 

March 30 - Would You Like A Muffin?

During the course of a month, I might easily attend several meetings. Usually at the conclusion of the formal part of the meeting, refreshments are served. Often the plate of goodies is passed around the table so each person can choose what they would like from the platter. Sometimes plates are laid out on a separate table or counter so that people can help themselves that way.   

Now the question. Would I like a muffin or a biscuit or a cake or a sandwich? This is the most difficult part for me. Certainly I would like a little treat of whatever is being offered but the difficulty is that I can’t see what is on the plate. So, do I bluff and reach out and take the top part of the sandwich, or perhaps stick my finger in the icing of a cake or maybe take two or three of the little biscuits when I misjudge what is there. I think that because I have responded during the meeting like all of the other sighted participants, people forget that I can’t see. Even though I have reasonable peripheral vision, I am unable to see the plate or what is on it even when it is placed right in front of me.

As well as gatherings where members are sighted, I attend a monthly support group meeting for people who have vision loss. At this meeting we overcome the challenge of serving refreshments by handing out individual plates or napkins. Before the refreshment is served there is an explanation as to what is on each plate. I don’t mind putting my fingers in my own cake icing or mangling my own sandwich or muffin. It is much better than handling and touching food that other people might want to eat.

If I am with friends, I am usually saved any embarrassment when they offer assistance. At a meeting last week, my friend Judy saw my hesitation about reaching for one of the snacks. Quite unobtrusively she told me what was on offer, asked what I would like, and placed it on my plate. Buffets are often a surprise to the taste buds unless I am with someone to help me through the line. All in all, it’s a good thing I’m not terribly fussy about food and I’m glad that I don’t have any food allergies. Who would have thought that selecting a particular muffin to eat could be such a challenge.

March 20 - Busy People

I have heard people say that when they retire, their lives just get busier. Well, I think that when people experience vision loss, the same can be said to be true. It just takes so much longer to do anything.

I am often frustrated with paper. I can’t see to read regular or even large size print. I do use a CCTV Reader which magnifies single words or numbers. However, reading documents of any length is very time consuming. I am always glad that I live in a digital age and sometimes I can listen to communications on my computer with my audible screen reading program. What I am trying to say is what would take a sighted person to read in less than a minute takes me very much longer.

Then there are appointments. Mostly a sighted person makes an appointment – medical, dental or whatever – and simply drives himself or herself to the particular location. A person with limited sight needs to arrange transportation and coordinate the timing of this with the appointment time. Often making transportation arrangements can be complicated. Whether the end result is a ride with a friend, or public transport, or specialized disability vehicle, the result can be – yes, you guessed it – time consuming.

Coping with the challenges of communication and transportation are two of the major difficulties in the life of a person who is sight disabled. We need a full twenty-four hours in the day to accomplish all that we would like to do. Once a friend asked me what I did with my days. Wasn’t I bored sitting at home doing nothing? The question took me by surprise! My days are nearly always full. I have learned to plan. Admittedly there isn’t much spontaneity in my life but I do keep busy.

 

March 2 - Sight and Sound

Last night Lyle and I were at a concert. As we waited for the performance to begin, I heard the woman sitting behind me remark that although she couldn’t see anything, she would be able to hear. Her comment mirrored my own thoughts. I knew that I couldn’t see the members of the choir in front of me, but I also knew that I would be able to hear their voices.

Some people express surprise when I tell them that I have been to a concert or a movie or some other performance. They ask what I get out of these things when I can’t see. I try to explain that sight isn’t the only aspect of enjoyment.

I do think that over the years of my diminished sight, I have become more attuned to sound. I like the sounds of our house. I like the hum of the fan when I turn our fireplace on in the morning. Often I can hear the barking of the neighbour’s dog. From our house I can hear the train whistle as it passes the crossing downtown – two long blasts, one short and another long. I love the chimes of my clock. I enjoy listening to my audio books. I check my text messages with Siri on my phone. Did you know that I have programmed Siri on my phone so that he speaks with an Australian accent? I miss some of these familiar sounds when Lyle and I are away from home.

Now I don’t think that I can hear any better simply because I can’t see. It’s not that my hearing has suddenly improved to compensate for my vision loss. I don’t believe that is the case. Instead, I think that I have become more attentive to the sounds around me. Possibly it is just that I have learned to listen to what I hear.

February 18 - White Canes

Last week I was at a presentation by a VLR orientation and mobility specialist demonstrating the different kinds of white canes. (VLR stands for Vision Loss and Rehabilitation.) Alex showed the group four types of canes and the various tips that could be attached to them. She explained how each tip was useful in detecting different ground surfaces. She stressed the benefits of using a cane when a person is visually challenged. She also stated that it was important for each person to find a cane that was most useful for his or her own situation.

I have had occasion to use each type of cane. In the early days of my vision loss, I tried a thin identity cane. The identity cane is held out in front of the user and its purpose is to alert others who might see the white stick and give them a heads up as to the low vision of the user. This would supposedly give them a hint to give the carrier of the identity cane a wider berth. Personally I didn’t find this helpful at all. Most people failed to notice the cane much less recognize its significance.

Then, after my knee surgery last year I tried a support cane. This cane is sturdy and although it is white in colour, I didn’t find that it carried any more significance than brown, black or gray canes with the same support function. While the cane was useful in supporting me with my healing knee, it didn’t give me an indication of the ground surface in front of me. It was useful in detecting the depth of a step – provided that I didn’t fall on the step in the first place!

For me the most useful cane has been the long mobility cane. I was amazed when I first tried out this cane in the hallway at a CNIB office. As I followed the sweep of the cane in front of me I felt a new confidence in moving forward. I could tell the difference in ground surface – tile or carpet – and I could follow along the sides of the hallway as the cane tip hit the edges.

Now you would think that with this amazing new freedom, I would be set to roll. This wasn’t the case. When I arrived home, I was hesitant to use my new cane in my local neighbourhood. I’m not sure why there was this juxtaposition of attitude. The positive benefit of using the white cane was obvious. I felt safer and more confident in my movements. Why then the reluctance?

I have spoken with other white cane users who have experienced a similar feeling. Partly, it is the idea of feeling different. We don’t like to draw attention to what could be regarded as a disability. There is an unspoken stigma. Some people have also spoken of the fear of being taken advantage of when the cane so clearly indicates their inability to see. Even now I sometimes choose when I will use my cane and when I can manage without it. In familiar indoor settings, I can find my way unaided by my cane. In busy unfamiliar settings I feel lost without it.

Using a white cane isn’t only a practical step forward in a journey with vision loss. There is also an emotional and psychological hurdle to overcome. While not being able to see is the obvious driving force behind deciding whether or not a person should take up a white cane, there are often other underlying factors that complicate making such a decision. For me, the benefits outweigh any negative outcomes.

There is a picture with this post. I am standing on one of the walking trails near our home. It is winter and the colour of my cane tends to blend in with the snowy conditions.

Sue with cane on a snowy path

February 7 - Feeling Discouraged

I am not usually easily discouraged. In fact, generally speaking I am fairly optimistic. This was not the case on a day last week.

I was at Smart Life in Calgary. Smart Life is an organization that offers an opportunity to try out various assistive devices for people who are visually challenged. Smart Life also offers training in using the equipment. I was there to see what was new and also to get some help in using my smart phone.

I can do quite a bit with my phone. With an audible Siri, I can send and receive text messages. I can use my voice to call numbers on my contact list. I can listen to the time and temperature in multiple cities around the world. I can hear the battery level on the phone and even turn the flashlight and camera on and off. In spite of all this, I know that there is much that I can’t do and don’t know about. This was obvious when I met with Curtis who was my trainer for the afternoon.

At first Curtis tried to lead me through enlarged print on the screen. Then he tried different colours of print on different coloured backgrounds. While I appreciated these efforts, I knew that I would not be able to see the print. As we eliminated each variation, it was discouraging to admit each time, and time again, that I couldn’t see what was on the screen. It reminded me of my early days of vision loss when I needed to describe what I was seeing, or rather not seeing, to employers, doctors and friends.

Anyway, after losing the efforts with print, Curtis went on to demonstrate Voice Over and Screen Speak to me. These are two audible programs that I would be able to use with my phone. Both would give me more information than I was currently using with Siri. Curtis was patient with his guidance and I was doing not too badly. The discouraging part was that it was so much to learn. I came away from the lesson feeling flooded with information and discouraged by the idea that I had a new learning challenge.

This was a week ago now. In the meantime, Curtis has generously emailed me the gist of how to operate the two new systems and I am trying! Possibly the best piece of information that Curtis gave me was that whatever I did, I wouldn’t break my phone. This has given me the impetus to be more adventurous with my phone and the incentive to experiment with more finger taps and gestures. I am trying to stay optimistic and not be too discouraged with temporary failures.

January 27 - Left Right

Last week was the first class back at yoga after the holiday break. For me it was an even longer break since my knee surgery last July. Everyone was still chatting as I sat down to take out my indoor shoes. I was struggling to discern which was left and which was right when the woman in the next chair leaned over and said, ”You do realize that you have shoes from two different pairs, don’t you?”

Of course I didn’t realize that at all! When my friend came over to assist me, it turned out that I definitely had shoes from two different pairs. At least I had grabbed the left foot from one and a right foot from the other. Even if the styles didn’t quite match and the colours didn’t either, I did have the semblance of a pair.

While I am usually fairly careful about choosing matching outfits, I do tend to buy shoes in similar styles. So, over the holidays when I reorganized my closet I must have put  the two pairs of shoes back in their wrong spots.

Unfortunately this isn’t the first time I have made this fashion error. I remember once when Lyle and I were shopping. We had stopped at a number of small stores where I was trying on clothes. It wasn’t until we were home again that Lyle told me I was wearing unmatched shoes. He said that he didn’t tell me while we were out as he didn’t want me to be embarrassed. Of course I was embarrassed just thinking about it!

Possibly nowadays, wearing unmatched outfits is a fashion statement in itself, but I am still of the old school and like to feel coordinated. Nevertheless, wearing two right shoes or two left shoes at the same time could be a mite uncomfortable.

 

January 18 - Change

I really don’t like change! I know that I am set in my ways, but one of the ways that a visually impaired person learns to cope is through repetition. Keeping things the same just makes life easier.

The other day at the swimming pool I was waxing eloquently about this topic. I was in the change room when a woman I knew slightly began telling me how brave I was to be at the swimming pool by myself. I explained that there wasn’t any problem because at the pool, everything always stayed the same. The lockers were the same, the showers were the same and the entry to the pool didn’t change. I think that I sounded quite confident as I left her to continue with her swimsuit and I headed to the water.

I made my way to the steps at the shallow end of the pool ...but what was this? There weren’t any steps!

Just then the lifeguard came rushing up to me. “Oh!” she said. ”I should have warned you. We moved the steps today. They are at the other end of the pool.”

My confidence went down a notch or two as I made my way back to where I had obviously passed the new location for the steps. The steps are movable and probably the only thing in the whole aquaplex that isn’t a fixture. I began to giggle. I had been so pleased with myself as I explained to the woman in the change room just how well I could manage. Then for the first time in possibly years, the steps had been changed.

As I did my laps, I thought of how much I depend on things staying the same. Repetition and familiarity  help me to cope in so many ways. It is change that throws me for a loop.

January 9 - Reading With Dots

January is the month when many people celebrate the birthday of Louis Braille. This clever young man was the inventor of the tactile system of raised dots that enables people to read even though they might be unable to see print on a page.

In some ways I regret that I didn’t learn Braille when my sight first changed. My sight loss was sudden and at the time I was quite emotional and very busy learning other ways to cope with my life. For instance, how was I to continue working? How was I going to be able to get around without being able to drive? How was I going to be able to do my banking, to do the grocery shopping, to recognize people I knew on the street? It was a lot of initial learning to cope and I let the lessons in Braille slide by.

There are really only a few times when I have regretted not learning this tactile language. I was always sad when I couldn’t read the bedtime story to our young children. The up side of this was that they learned early to develop their own reading skills and would read to me.

Another case when I regretted not being able to read Braille was when I was presenting to groups. Fortunately I do have a reasonably good memory and was usually able to remember most of the points I wanted to convey. However, I do recall one occasion I was in the audience when a young blind girl was giving a talk. Her fingers flew over the Braille notes in front of her and she was able to look out to the audience instead of having her head down in the printed text.

I feel fortunate to have been born into the age of advanced technology. I use an audible program on my computer. I listen to recreational books on an audible device. I press a button on my watch to hear the time. I have a personal GPS or Trekker that tells me my location when I walk outside. Life is very different for me than it was for Louis Braille.

Still, along with others I celebrate Braille and his invention of the six little tactile dots. They too have been incorporated into the world of technology with Braille computer keyboards, printers, watches, signs on elevators and hotel doors, safety cards on airplanes. Yes, there are still occasions when I feel that I have missed out, but I celebrate Braille’s invention and the ability of people who continue to make use of it today.