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.