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!