Hiraeth (pronounced with a fast ‘HEER’ and a soft ‘eyeth’) is a Welsh word for which there is no direct English translation. It is defined as a homesickness tinged with grief or sadness over the lost or departed. It is a mix of longing, yearning, wistfulness or an ernest desire for something in the past. I hadn’t heard this word before. I recently heard it in the HBO documentary about Gloria Vanderbilt (Nothing Left Unsaid). I was quite taken by the word and did some research. This is a great way to describe the whole stroke experience. A bit scary but realistic as far as I’m concerned. We may/may not know for what we long and may/may not have experienced it, but we know it’s there. On the first year anniversary of my stroke, I had an appointment to see one of the surgeons who had worked on my AVM. In the course of the conversation, he asked me what I wanted and I said “to be normal” and he replied, “so what is normal?”

Every year before the baseball season starts, we have a family tradition of watching the movie Bulll Durham. I love that movie. It’s mostly about the farm league of a baseball team but details some things that one has to go through in preparation for the major league. The “show” as they refer to it. Many of the tasks are funny but it is a lot of work. I can name many scenes in the movie which I really like but two of them are the “rain out” scene (a great example of thinking out of the box) and when Nuke says he wants to “announce my presence with authority”. I love that phrase mostly because I feel we all want to announce our presence with authority! I know I do. I believe we can. It may not look like we thought.

I had a feeding tube for a long time after the stroke and the whole concept of eating was something I had to relearn. The first time I went to an event where there were other stroke survivors and a meal, I saw the effort it took for stroke survivors to eat. While I was still self-conscious during the process, because I had seen the effort of other stroke survivors eating, I knew I wasn’t alone. So the whole process of eating is still a challenge but at least I know many have struggles like I do. I’ve talked about my ataxia (which is worse on my right side) so I have had to learn to eat left-handed and that means picking a seat when we eat out where I can eat comfortably with my left hand.

There is a show on TV that I watch called Mexico: One Plate at a Time (with the chef Rick Bayless). It’s considered a cooking show, but I see it as much more. One sees many aspects of Mexico through food. I love the title. Especially after getting to redesign myself, I do it slowly — one skill at a time. Even though I don’t taste everything, I love seeing the mix of ingredients. One can see the progression of the culture. Most of us have an idea of Mexican food. They feature the different areas and the food from those areas. Much of what they feature is the “fusion” of various cultures — traditional with a twist! We can see that in the food. How great is that? We know so much more today. I’ll liken it to my AVM/stroke. We know so much more today than when I had the stroke. We’ve always known about hemorrhagic or bleeding strokes. When I had my stroke, the doctors decided to cauterize the veins to reduce or eliminate the blood that was seeping into my brain. They were using a type of superglue but there was a new substance that would immediately harden when it was exposed to blood. That’s what they decided to use on my AVM. It was very new at the time and they were mixing the substance and then driving it down the freeway to the hospital as I was in surgery. So the whole element of progress is an important thing to me. While it is important to look to the past, there is a great deal in looking to the future!

Some time ago I mentioned a poem by David Whyte called The Well of Grief. It is in a selection called  Where Many Rivers Meet. I don’t know when it was written, but I first heard it about 20 years ago. This is the poem.

Those who will not slip beneath
the still surface on the well of grief
turning downwards through its black water
to the place we cannot breathe
will never know the source from which we drink,
the secret water, cold and clear,
nor find in the darkness glimmering
the small round coins
thrown by those who wished for something else.

I love the images of this poem. I see the stroke in many aspects of life — music, TV shows, movies, songs, books, sports, theatre, people, activities, etc. They are all stories. They are not necessarily my small round coins but serve as a reminder of life. Like many other people who have had life turn out differently than they thought, I don’t imagine what could have been. I have too many things to focus on right now rather than to spend my energy thinking about what could have been. There are no ‘if onlys’ in life! You’ve heard the saying “there’s no point crying over spilt milk”.

Still throwing small round coins!

The dictionary defines “caddywhompus” as crooked, uneven, broken and/or side-ways. Doesn’t that sound like a stroke? I like the way the word sounds!

When Coors Field opened in 1995, I was working in the Denver, Colorado area and since I am a huge baseball fan, I decided to check out the new ballpark. I would put it as one of the new ballparks that was revitalizing the downtown area of a city. I wanted to see what it had done to downtown Denver. Coors Field is the home of the Colorado Rockies and when Major League Baseball granted the city of Denver a team, the baseball team played at the old Mile High Stadium — a football stadium. They had not had a Major League team before. After they started building the park, they modified the plans a bit. Mile High is a football field and everyone was surprised at how many people in the Denver area went to a Major League Baseball game. If you’ve spent time in the Denver area, you know that the high altitude makes a difference. (For those unfamiliar with the area, Denver is considered the mile high city — over 5,200 feet or 1.6 kilometers above sea level.) Strategy became an important part of the whole baseball experience. Rockies players as well as members of the visiting teams had a new element in the game of baseball. As I said I wanted to see the new ballpark so when I had a gig in the area, I got a ticket for a game. I had a great seat. I got out of work a little early and decided to take a nap in my hotel room before I went to the night game. I slept a little longer than I expected so I hurried to go to the game. I was thrilled to be there! I wanted to see the ballpark and walked all over. I loved it! When the game was over, I went back to my room and was mortified when I looked in the mirror and saw that the whole time I was at the ballpark and walking around, my shirt was inside out! (Why didn’t anybody tell me? What would they have said? Hey lady, your shirt is on inside out — it was caddywhompus!) I was at the ballpark and I would probably not see those people again.

Some time ago, I mentioned the Japanese practice of kintsugi — golden journey. Billie Mobayed has a great image which tells us “when the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history, it becomes more beautiful.” I love this concept. Isn’t that a great way to deal with caddywhompus of a stroke?

One of the things that I have really liked about therapy is the idea of using everyday things to rebuild different skills. While therapy has been a lot of work, we’ve used blowing bubbles (speech therapy), kicking a ball (physical therapy) and making banana bread (occupational therapy) for various skill building. I won’t say therapy has been fun, but I give heaps of credit to all therapists for the work they do when things are caddywhompus!

I’ve mentioned a book called Wisdom of the Last Farmer by David Mas Masumoto. His family has an organic fruit farm in the Central Valley of Calfornia. He wrote the book about changes to the family and farm after his father had a stroke. He has a chapter called Learning to Lean, Walking On Uneven Ground. That picture has stayed with me during this whole journey — an every day task! Months after I had the stroke, I was in water therapy. I was never a strong swimmer before the stroke but that’s another story. (I know I was a rock in a previous life.) I remember distinctly all the things we did in water therapy. It was at that point that a light bulb went on about the stroke, I had an ah-ha moment …. I would have to learn to swim again. I was caddywhompus!

I hadn’t heard the word caddywhompus in ages. I recently heard it on a Hallmark TV movie called The Bridge. (I love those Hallmark movies!) Lots of things go on in the movie but one of the themes is the quote “I would do anything for you, sir. Anything that was right” from the novel Jane Eyre (when Jane is talking to Mr. Rochester). I can totally relate. There are many things I do post-stroke … just because, it’s right. Here’s a post stroke story that is a great example. Several years ago, Matt and the boys attended a music festival in another state. Someone took a fabulous picture of the three of them and Matt sent me the .jpeg. I loved the picture and there is a great story with it! I decided to give the picture to Matt as a gift, but since I don’t drive, this was going to be tricky. I sent an e-mail to one of the local photography places in town and explained my situation. Someone responded and said they don’t usually do this kind of thing, but he would do it and could I give him some direction. I sent him the .jpeg. He picked a frame, mat and printed the picture. He said he would leave it at the front desk under my name. I had a friend pick it up and she brought it to me when Matt was traveling. Matt was very surprised by the whole thing and we keep that picture handy so we can see it all the time. So see, sometimes in order to do “anything”, we have to ask for help.

Here’s another thing about caddywhompus — have you heard the phrase “there are two sides to every story”? Once when I was in Speech Therapy, I was working on a skill and the therapist asked me to repeat what I said. My response was “I know what I’m saying!” She just looked at me and smiled as she said “yes, but does the other person?” Another ah-ha!

Constantly looking for gold

It’s the fans that need spring training. You gotta get them interested. Wake them up and let them know that their season is coming.” Harry Caray

May is Stroke Month and some of these things about strokes I’ve noted before, but as I think about it, we just started the baseball season in the U.S. and Canada for Major League Baseball, which means we just finished the Spring Training season. I figure it’s alright to review these concepts. (If it works in baseball, why not with strokes?) It’s Spring Training for strokes! I think this is a great quote. Harry Carey was a sportscaster for several baseball teams, but I associate him most with the Chicago Cubs. I’ve always been impressed that professional baseball players get together before the season starts to review the basics of the sport, work on team attributes and try new plays in what they call Spring Training. For those unfamiliar with the concept, it’s the pre-season for the sport. This quote is perfect because it’s about fans! Now much like baseball when it comes to a stroke, it never hurts to review things and it’s everyone that benefits from this info.

Most of this information has been compiled from http://www.strokeeducation.info and living as a stroke survivor for the last ten years. The statistics relate to strokes in the U.S. but it’s probably not much different for the rest of the world. The basics are true wherever we are. These statistics are that a stroke is the fourth leading cause of death in the U.S. Somebody in the U.S. has a stroke every 45 seconds. This means that there are 80 strokes every hour. The U.S. experiences upwards of 750,000 strokes every year. Every 4 minutes, someone in the U.S. dies from a stroke. Now add the caregivers to the number of survivors and you can begin to see how people/families are impacted. These statistics relate to strokes today. We tend to think strokes happen to people of advanced age but we are finding out more and more about pediatric strokes. I would imagine that statistics will change. Our whole perspective on strokes is affected. (Then again we are finding out how plastic our brains are with pediatric strokes.) Strokes can happen at any age!

What is a stroke? Strokes are called “brain attacks”. They occur when a blood clot blocks an artery (not enough blood) or when a blood vessel bursts (too much blood). When either of these things happen, brain cells die and brain damage occurs. Anyone can suffer from a stroke. (Don’t I know?) Although many risk factors for stroke are out of our control, several can be kept in line through proper nutrition and medical care. Risk factors for stroke include males, being over 55, African American, Hispanic, or Asian/Pacific Islanders, people with high blood pressure, high cholesterol, smokers, people with diabetes, obesity, cardiovascular disease as well as heavy users of alcohol. As we know, many of us don’t fall into any of those categories, so it is very important to be aware of strokes!
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What are the signs of a stroke? There are several signs of a stroke, but the main ones for strokes are: sudden weakness (numbness or paralysis of the face, arm or leg), vision loss/headache or dizziness (sudden loss of vision, particularly in only one eye or unexplained dizziness, loss of balance or coordination) and loss of speech (trouble talking or understanding language.)

Remember FAST for Stroke Awareness

  • F = Face – Does the face look uneven? Ask the person to smile.
  • A = Arm – Is one arm hanging down? Ask the person to raise both arms.
  • S = Speech – Is the speech slurred? Ask the person to repeat a simple sentence.
  • T = Time – Call 911 (or your emergency number) NOW.

How many types of strokes are there? There are two main types of brain attacks — ischemic and hemorrhagic. With ischemic strokes, a blood clot blocks or “plugs” a blood vessel in the brain. With hemorrhagic strokes, a blood vessel in the brain breaks or ruptures. (AVM strokes are hemorrhagic.) Ischemic strokes are about 85% of strokes (Thrombosis, Embolism, Large Vessel Thrombosis, and Small Vessel Disease) and hemorrhagic strokes are the remaining 15% (Intracerebral Hemorrhage and Subarachnoid Hemorrhage).

How can strokes be prevented? Although strokes can happen to anyone, certain risks factors can increase chances of a stroke. The following Stroke Prevention Guidelines will help you learn how you may be able to lower your risk for a stroke.

  • Know your Blood Pressure
  • Identify Atrial Fibrillation
  • Stop Smoking
  • Limit Alcohol Use
  • Control Diabetes
  • Manage Diet and Exercise
  • Treat Circulation Problems
  • Get Cholesterol Screening
  • Get Carotid Artery Ultrasound Screening

As I’ve said before, Matt and I have learned heaps about the brain and strokes. The source of my stroke was an AVM which was congenital. Even with a stroke, I continue to make a link between baseball (Spring Training) and strokes. I love baseball. It is a very nostalgic thing for me. That is a big part of awareness for me — I have to be aware of something in order to deal with it.

 

“There’s a hole in the bucket, Dear Liza”

Do you remember the children’s song “There’s a Hole in My Bucket“, based on a dialogue about a leaky bucket between two characters, called Henry and Liza? The song describes a situation: Henry has got a leaky bucket and Liza tells him to repair it. But to fix the leaky bucket, he needs to get straw. To cut the straw, he needs an axe. To sharpen the axe, he needs to wet the sharpening stone. To wet the stone, he needs water. However, when Henry asks how to get the water, Liza’s answer is “in a bucket”. It is implied that only the leaky bucket is available, which if could carry water, would not need repairing in the first place. Sounds like a dilemma!

I have a friend who says of the stroke, it is what it is. How true. As far as the whole stroke journey, I would say that “thinking out of the box” has been a great way to see the stroke as what it is and find new ways to do things. It has been a huge part of the caregiver/stroke survivor partnership that Matt and I have. This thinking out of the box is a great way to look and approach much of the post stroke work. I tend to think more traditionally and Matt is the one who brings the whole concept of thinking out of the box to the relationship and certainly to the role of caregiver. I see this as an important part of the process. The things we have and do are in a large part to that thinking process. Every stroke is different (people bring different skills to the party) and strokes affect people in different ways. Here are a few examples of thinking out of the box that have been fabulous.

I talked about the “wet bathroom” that Matt did for me. We have a tankless or on-demand water heater. I’m not good at waiting or cold so this is a perfect solution for me. The water spout on the shower head has a temperature gauge so it stays at a pre-set temperature. We have Toto Washlets in two of the bathrooms, including the wet bathroom. The ataxia is so pronounced on my right side that pushing a button with my left hand for a water spray is very helpful. (The seat is also heated.) The sink and countertop are made of Corian and it is all one piece, so there are no seams. Underneath the tile on the floor, Matt installed radiant heat, which I can easily turn on with a switch to take the chill off. It has no shower stall but rather a bench upon which I can sit. Who said showers need walls and to be enclosed? A lot of people have asked me about how much of the room is tiled. Obviously the floor is tiled and each of the four walls have tile. The two walls right by the shower head have the highest tile (about 7 feet or 2.1 meters) and the other two go up about 4 feet (1.2 meters). I think of the shower being the most important part of the wet bathroom but you can see all these other things are an important part.

I was very proficient with a PC, but I even had ataxia in my eyes when I first had the stroke. (That was an issue with reading.) Matt found out that the MAC operating system (I have Safari) could be set-up to read to me. Matt switched me over to a MAC. We did the speaking thing on my e-mail in the beginning. After the e-mail was read to me, I would dictate a response to my nurse and she would type it and send a reply. Many of you got those responses. That’s one of the main reasons I switched to a MAC. We went to the Apple Store and set up several One-On-One sessions. Somebody would help me translate PC knowledge to MAC knowledge.

I’m not a good eater — especially late at night. Afternoon tea (and high tea) has been a wonderful thing as far as I’m concerned. It’s a tradition that is more popular in European countries. Historically because dinner was served so late, it was an opportunity to have a light meal or nosh in the late afternoon or early evening. This is a wonderful thing as far as I’m concerned. We have a friend who I know would say “How civilized!” I love it because I can have a light meal and sample different things. We went to a tea place in San Francisco with friends recently. I loved the experience. Afternoon tea is typically a very formal event. There were four of us at tea and each of us had a place setting of a plate, tea cup, and saucer. None of them matched! Not with each other or within the setting. It was charming. That got me to thinking ….. who says it has to match?

Here’s a post-stroke description for thinking out of the box that follows the place setting at tea. People who describe themselves as “foodies” will get this. I’ve said with the stroke that I lost my sense of taste and smell. It has slowly and gradually come back, but not as strong as it was before. It was not one of those ah-ha moments where I could suddenly taste everything. Because of memory, there are times I let Matt know I’m in the mood for something specific. He considers whether we have the ingredients and how much time is involved. Sometimes he tells me to think of a place we can go out for that item. With that in mind and where I am, I consider the presentation of the food (not just the taste), the ambience of the restaurant, is it accessible and how is the service, among other things — so out of the box describes the whole experience. If thinking out of the box is a foreign concept to you, try expanding the current box!

I’ll add an ‘I just had the stroke’ story. When I first had the stroke, I couldn’t speak. (Parts of this Matt has told me.) I was at the first hospital and a therapist came into my room and was asking me several questions. I wanted to answer, but I couldn’t. So to communicate, I bit her! Usually, I talk about how slow I move after the stroke but that day, I was faster than the therapist. Not a great image of what people do after a stroke, but an example of out of the box. By the way, I wouldn’t bite anyone today. I would use words, because I can. I love this story. I have this image of how people view stroke survivors and this story shows creativity. It’s a great lesson for all of us who think stroke survivors don’t understand or know what’s going on.

In 2000, we took a family vacation to Australia. We have great friends in Australia that we visited. The Olympics were in Sydney in 2000 and that was a big part of the vacation. (It was right before the Olympics started, so we were able to tour several venues, see the Olympic Village and see many torch runners.) I love that everyone in our family is into sports! We figured we were in Australia so a rugby or soccer jersey would be a great memento for the boys. We took the boys to a sporting goods store and I got into a half hour discussion with the owner about using cold water versus hot water for laundry. Matt helped the boys pick a jersey. As we were getting ready to check out, the owner with whom I had been having that laundry discussion said to me, “I can sign a jersey for you.” So we did and I took it back and showed our friends. They looked at it and told me it was from David Campese (Campo). It is difficult to give you a baseball equivalent, but suffice to say, it was a big deal — especially if you are a rugby fan! We have that jersey framed today. Our younger son talks about the ‘how’ and ‘why’ of something. This is the why side of ‘out of the box’ … taking an event and making it an experience! Now this is an experience. (Who ever said that water temperature is not important.) It is what it is!

This example has to do with a real box. I’ve said that I have ataxia on both sides, but it’s more pronounced on my right side and for the most part, one doesn’t even notice it on my left side. Consequently, I’ve learned to do almost everything with my left hand. (Being left-handed is a challenge in itself!) I also have weakness in both hands. This has always been the case since the stroke. When I first had the stroke, I used what I call a mirror box. I put each hand into the box, but there was a mirror which reflected activity on my left side. As I did things (like tapping my fingers, etc) my brain would see each hand active. Isn’t that phenomenal? As I think about things, I would encourage all of us to think differently about how we view things.

She who does not bite another!

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