“When we were young, we were small, but we didn’t know it.” Lucy Shwartz

This is from the theme song by Lucy Shwartz for the TV show Parenthood. It was on for 6 seasons and just ended. I didn’t know about the show when it was on. I just found out about it recently and went on the hunt for it. I was able to see the 6 seasons on a combination of my Fire Stick, Netflix and On Demand. (All 6 seasons were available On Demand, but that requires one to watch commercials and I am not a fan of that activity!) They have also used the song Forever Young by Bob Dylan as the theme song.

The season 2 finale is called Hard Times Come No More. I would put this episode near the top of episodes which have had a lingering effect. One of the children has Asperger’s. Someone once said “Autism is no excuse for bad manners.” Likewise, that’s how I feel about a stroke.

In Hard Times Come Again No More there is a great example of the response of the child with Asperger’s. (His parent’s are his caregivers.) Intense emotional experiences are difficult for people with Autism/Asperger’s. This is very true when the emotional experience involves other people and is not related directly to the needs or desires of the person with Autism/Asperger’s. In this episode, Max (the child with Asperger’s) is unable to relate to the feelings his aunt is experiencing when his cousin is in the hospital after a car accident The disability in being able to connect with other people and to develop an understanding of how someone else might be feeling is difficult and at times even completely alienating. Dr. Roy Sanders says of one of his patients (and an avid “Star Trek” fan) told him that “having Autism/Asperger’s is like being a Vulcan living among Klingons.”

Many people generally get a feeling of connectedness, satisfaction, and comfort when sharing in intensely emotional situations – especially those involving grief and/or death. For people with Autism/Asperger’s, they just don’t get those same positive feelings that reinforce the interaction. In fact, a person with Autism/Asperger’s will usually find encounters with others who are sharing feelings and comforting one another to be confusing and even frightening. The whole process simply makes little sense to them and there is certainly nothing that is pleasant or reinforcing about the situation. Trying to get a person with Autism/Asperger’s to understand and empathize is to reach the very core of their disability: social and emotional connectedness is the very thing that they are unable to do, or at least not able to do very well. Teaching empathy to someone with Autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).

This was not meant to be an Autism/Asperger’s summary but rather to enlighten us all about something. I notice in that episode, Max’s father explains why he needs to be empathetic with his aunt about his cousin’s situation. My take on all this is that we can learn empathy. I was taught this as a child and Matt has this as a priority also. That has not changed with the stroke. It was important to me before the stroke. If anything, I am more empathetic after the stroke. The source of my stroke was an AVM which I had at birth.

I’ll see if I can explain sympathy and empathy. One accepted definition has sympathy denoting feelings of pity and sorrow for someone else’s misfortune and empathy denoting the ability to understand and share the feelings of another (having shared the same or a similar experience). Here’s an example of sympathy and empathy which has to do with sports/ML Baseball. When a player of a team gets hurt, they go on the Disabled List for a number of days. While I don’t wish an injury on any body, when it is a rival team, I am not sympathetic. (I know that’s heartless!) The team usually goes to their farm (training) system and calls up a player who can help the team somehow to fill in that spot on the roster. It’s not necessarily a replacement. I don’t know if any of us can be replaced. I have empathy for the team and all they need to decide in their effort. I like a good competition.

I’ll briefly detail why I loved the show Parenthood. Each TV show I watch provides a unique learning experience or a reason why I watch. It’s a boo-boo show and I usually cry at each episode. This is a good thing, as it gives me an excuse to cry. I said before they use two different theme songs during the course of the show. Any body or show that features a Bob Dylan song has to be pretty good. There are four generations portrayed in the show. This is an important part for me as you see the interactions between family members. Again it points to the fact how we are a part of something. I’ve talked about how I love Ray Romano. He plays a very different character in this series. I really wanted to see him in another role. I learned heaps about Autism/Asperger’s watching the show. The family loves baseball and has a closing scene which takes place on a baseball field! This is fitting since baseball is important to the family and one of the first scenes is about a baseball game. Parenthood is/was a great show! They had a great take on families and had several clichés.

That being said, there are ways that people can learn empathy. (Matt and I both think empathy can be taught.) In that season 2 finale of Parenthood the father explains to the son who has Asperger’s why empathy is important. We can “learn the rules” for how someone should act in an emotional situation. It’s not just caregivers or survivors, we are all ambassadors of good manners! As I’ve said before, it brings other things to light other than the stroke. Like everything else, one of the keys is persistence. I’ve been blessed to have a caregiver and partner like Matt, who loves and supports me. I have good cognition, a pretty good memory and an awesome partner.

One of my favorite lines from that episode (puts things in perspective) … “Boo Freaking Hoo”! Another title of an episode that I really like is “Put Yourself Out There”. I think that puts it all together. Here’s a great story about empathy and putting yourself out there. Matt has relayed this to me that when I was in ICU, my visitors were limited to “family”. When a friend heard this he said “I’m her brother” and he was let in. I love this concept because we often get hung up and only do what we think is right. In this case, he stretched the truth a little, but not much as we have new rules for family (and he definitely fits in that category!) I think this is great and a perfect way to show empathy. I describe empathy as maybe not having had that happen to us but we feel the pain. Most people (fortunately) have not had a stroke but wish to show their love and support. We feel the pain. That’s exactly what he did in this situation. I’ve said before my mother put together a wonderful book for me of all the cards and good wishes I received when I first had the stroke. Most of the time I was in a comma and couldn’t appreciate it, but years later (today), I see it and love it!

Do you remember Song of Long Ago by Carole King where the lyrics include this? “Cry, cry for someone, who just can’t be happy, and be glad you can feel enough to cry.”

Glad I can feel enough to cry

“As you set out for Ithaka, hope the journey is a long one, full of adventure, full of discovery.” CP Cavafy

When Jacqueline (Jackie) Kennedy Onassis died, her friend Maurice Templesman read the poem Ithaka by Constantine P. Cavafy. It was her favorite poem. (Many of us see her playing a significant role in U.S. culture and history.) She was the First Lady of the U.S. from 1961 to 1963. She died in 1994. There are many interpretations of “Ithaka”. The first version of the poem was probably written in 1894, revised in 1910 and published in 1911. The first English translation was published in 1924. Ithaka is an unrhymed poem of five stanzas that employ conversational, everyday language. The narrator, probably a man who has traveled a lot, addresses either Odysseus, the hero of Homer’s epic poem the Odyssey, or an imaginary modern traveler or reader. The narrator tells the traveler that what is really important is not Ithaka, the island home that was the goal of Odysseus’s years of wandering, but the journey itself. It is the journey that must be fully enjoyed at every moment, using all the resources of senses and intellect, because the goal itself is likely to be disappointing. Gurvinder Singh Gill’s interpretation is that Ithaka is/are our goals and dreams in life. Like many, I believe it is the inner self’s quest for rediscovery of what we really are and what we really want. I love this image!

August 15, 2015 will be the 10 year anniversary of my stroke. Usually at the anniversary of the stroke, I detail a lot of my physical attributes or rather what I am doing today. I get the impression that people want to know how I am physically. I find that a lot of this year has been about the “mental” part of where I am. When it was Stroke Month (May), I said I see the stroke in two parts: the stroke itself (Stroke Awareness) and Life After Stroke. Now to add another dimension (especially as strokes are called brain attacks), I see the Life After Stroke with two parts, the physical and the mental.

Recently we had the Artistic Director of the Magic Theater over for dinner and she talked about (for lack of a better word) how she loves the fluidity of the theater. Granted there is a script but with actors there is a human element and so things may change from one performance to the next. The actors respond to the audience. Now that is spot on to my interaction after the stroke. That is a great image of what I call the mental part of a stroke, how fluid it is and has to be. Fits right in with the things we cannot see! We have been going to a series of plays by Shakespeare at one of the local pubs in San Jose and the whole thing is called ShakesBEERience. I loved the last one we saw. It was a great example of actors responding to the audience and the environment.

Now for a story, it’s humorous (after all, I believe if you can’t laugh about something, you’ve lost most of the battle). In the theater each play has a dramaturg. We were trying to get a definition of that role and in describing this a friend told us she was the dramaturg for a play about an aging actor and his personal assistant. She did a fabulous job describing the role of dramaturgy in a play. I’m always amazed at how immediately a viewer is transported to a particular time and place when they see a play. (That is part of what a dramaturg does for the play.) The theater company got a famous actor to play the aging character. Then she told us another story about the play. It’s not about dramaturgy but a great story. Late in the play the aging actor dies. Sometimes the actor would die earlier than he was scheduled to and so all the other actors who were supposed to have a dialogue with him were told not to go on as there was no one for them to converse! Isn’t that funny? I love that! That is much like my stroke. There are “right” ways we are taught to do things but every situation calls for a unique response. In sports, we talk of the mental errors of a team. There are many things we practice (or can practice) but sometimes we just need to react.

Late last year I was contacted by Stroke Smart Magazine (National Stroke Association) for an upcoming article they wanted to do. (If you haven’t read the article, here’s the url http://www.strokesmart.org/article?id=377.) I was the cover feature. Those that saw the magazine said something about cover girl! I share this because I see life after stroke as a journey. It’s remarkable to do an article on the stroke 10 years after it happens. The author did a fabulous job on the article and she emphasizes how we use the word renewal rather than recovery. She did a phone interview with us and Matt talked about why we use the word and what it means. That was a big part of the article.

The last 10 years have been a journey (and it has been full of adventure)!

I’ve said that before I had the stroke one of my goals was to read all the books that had been awarded the Pulitzer Prize for Fiction. When I (re)learned to read and I remembered that goal after the stroke, I tried to keep it.

Last year’s fiction prize was a book titled All The Light We Cannot See by Anthony Doerr. I’m about half way through the book. The premise of the story is that a young woman (Marie-Laure LeBanc) loses her eyesight at age 6 due to cataracts. To compensate for her loss of sight, her father who oversees all the locks at the Museum of Natural History in Paris in 1934 devices tiny intricate models of the places she must go, so that she learns to navigate by touch and then by memory. It’s the power of the mind that I’ve talked about. Our brains are amazing! Just the title alone is great! I think of it as a tribute of how our brains adjust. (Not to mention how important it is to have somebody love us!) I think this is a great title and concept. I often comment on the fact there is so much more that we cannot see. Some animals put humans to shame with their tongues and what they can do with them. That’s compensation. Consider an animal (like a giraffe) who has a rough tongue. Maybe they don’t taste flavor much but taste texture! I loved spicy foods before so when I first had the stroke and lost my sense of taste and smell, I figured I was lost. I tell the story that when I had salsa (I knew that was spicy) my tongue would get numb! Isn’t that great? I couldn’t taste the salsa but my tongue would get numb!

A couple of years ago when I did the post on Autumn, I mentioned the succulents. A lot of the smell has come back but not as strong as it was before. While I did not lose my sight, there are a lot of adjustments we made to compensate. Matt and I had somebody from a San Francisco nursery that specializes in succulents, design the back yard and its contents with succulents. The designer was very thoughtful in his design and something is blooming year round! Succulents are perfect for me because they don’t smell but they are wonderful in their appearance. As I said before, I highly recommend succulents to other stroke survivors who want to pursue their gardening interests and have similar issues. I have learned to appreciate the beauty of succulents. My original impressions about succulents they were all like cacti! Not so. There is so much more to consider. As I’ve said before (in staying with the gardening theme), remember people who plant trees.

I think most people know I love sports, especially baseball. One of the things that I like the most is the idea of “forgetting”. (I think most sports fans hang on to a negative situation — a loss, a bad play, a bad call, you name it, more than most players.) As a fan lof baseball I’m always amazed at players who have a bad game and yet go out and play the next game as if nothing happened. It’s the forgetfulness that is impressive. There are 162 games in a standard baseball season. That’s a long season. If you think about it (like life), a single loss puts things in perspective. For his birthday, I gave Matt a sweatshirt that says “For. Ev. Er.” It’s a reference/quote in the movie The Sandlot. I love that movie. It’s the big picture that I’ve mentioned before. We live in the moment but some things we do are for the long term. It’s the light we cannot see.

I have shared a lot of these thoughts before but called it something else. I hope you are as ok with it as I am. (My memory is not as good as it was before the stroke!) I’ve noticed that lots of things have a different significance than they did before I had the stroke. I’ve said before strokes are called “brain attacks”. It’s difficult to see what happens in a brain. Some people have physical things associated with a stroke, others do not. Since I have had the stroke, I am very aware that there are things we cannot see.

I love the poetry of Emily Dickinson. It’s difficult for me to pick a favorite, but I just heard one recently that goes to the top of my list. (Even if you are not into poetry, this is very good! The title alone is fabulous.) It’s called “Forever — is composed of Nows”. How great is that? I don’t know exactly when it was published, but Emily Dickinson lived from 1803 to 1886. Just think over one hundred years ago she wrote this. I’m always amazed at things like classical music, Shakespeare plays and Emily Dickinson poetry — how they managed to survive time! A couple of years ago I did a post on the stroke renewal process being a journey (not a destination). When I heard the poem, I thought that’s one of the reasons I use the word renewal rather than recovery. I think this poem is a great description of this process. What we do matters. I would imagine that Emily Dickinson was thinking about now when she wrote this. It’s the nows that matter.

Last year the San Francisco Giants won their 3rd World Series championship in 5 years. This is a big deal. The San Francisco Giants did a trophy tour where they took the three World Series trophies to various cities and published the schedule of the dates, venues and times. People were able to take a picture with the 3 trophies. This was something I wanted to do, so we picked a venue close to our home. I did a little research and found out that at one of the venues 1/2 hour before things were to start, there were over 100 people in line. It rained the morning on the day we chose (a great sign especially if you live in California), we got there early and Matt went to check things out while I waited in the car. The venue we chose was amazing! They had designated a line for people with special needs and Matt explained our situation and they gave him a courtesy card for that line. I was able to sit in the car and wait until I thought we should go to that line. We have a great picture with the 3 trophies! I had an opinion that metal was an inanimate object with no energy. When Matt and I got back in the car we both commented on the energy that was coming off the trophies. Back to the now …. Matt hung the picture of us with the trophies by the computer which I access everyday. Yes, that championship was won in October and the picture was taken in February, but having a picture that I see everyday makes it now. There is a great special about the postseason run and it has a song by David Parsons III featuring Bronte Stiles called “Let me Love You”. I love the line “through thick and thin” …. that’s what it is all about! The Giants came from New York City in 1958 and the World Series they won in 2010 was the first one in San Francisco. As I’ve said before, those 56 years were worth waiting. When the SF Giants won the 2010 World Series they published a book called Worth the Wait. That’s a great way to view the now.

I have been faithful to the TV show American Idol over the years (pre and post stroke). I know a little about music and vocals. I especially value that skill now having had a stroke. That’s part of my now. They have announced that next year (Season 15/2016) will be the last season for the show. This year’s Idol winner was Nick Fradiani. He has said the first single he releases (his coronation song) will be a song called “Beautiful Life”. It’s about the now. I see now as a way of acknowledging what is going on currently. (Even if we don’t think it’s all good.)

A couple of weeks ago several people from my high school graduating class had a Turning 60 get together. A great reason to celebrate and have a party. That’s a great example of honoring “now”. Many people (present company included) didn’t attend for various reasons but what a fabulous example. The person who does all the organizing doesn’t even live in the town — that requires him to trust others as he delegates various tasks. (I was in a fabulous class with many wonderful and talented people.) Many are very close friends. I share this as an example of now. I totally see this as the half full/half empty glass thing. I choose to see the nows as positive. Many see turning 60 as a curse and many see it as a blessing. However you look at it — it is now. We are not going to be 60 forever (I doubt people want to be 60 forever) but they are celebrating this time. 10 years ago there was a movie called 50 First Dates. It’s a great movie about treating each day as new. It’s a great example of now! In many ways this whole perspective of now makes gratitude come to the forefront — that’s what “now” does.


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