“If you have enough time to honk, you have enough time to get out of the way.”  Vangi Uribe
This is my philosophy of life.  Think about it.  We do many things spontaneously (a trait I admire) but I value this concept.  It’s more than knowing we have a choice or choosing well (let’s be real here — sometimes we don’t).  It’s what we do with that choice or how we look into the future.  I stopped driving after the stroke so I’ll use the task of making the bed in the morning as a example.  Admiral McRaven gave a speech at the University of Texas, Austin commencement and he said if you make your bed every morning you will have accomplished the first task of the day. It will give you a small sense of pride and it will encourage you to do another task and another and another.  By the end of the day, that one task completed will have turned into many tasks completed. Making your bed will also reinforce the fact that little things in life matter.  Then there is the notion that sometimes you have a bad day and all you want to do is get home and crawl into your bed because you know it’s a safe place.  What a treat you find when that bed is made.  That totally honors you!
I am learning about American football.  I have been watching RedZone on the TV on Sundays.  It’s an NFL (National Football League) product where they go from game to game, showing the highlights of various games as they happen.  They get the local feeds and that includes the announcers who get so excited when a highlight occurs.  I love hearing the excitement in the voices.  I am totally amazed at the skill of the person who does the show!  Did I also mention that since it is the NFL feed, they do seven hours of football with no commercials.  I know several people who have watched it and said that it is too confusing.  I understand that, but since I get to see many games, I think it’s a great thing.  Especially as I mentioned, I’m learning the game and it’s a great way to see the rules and skills that are part of the game.  Recently the NFL has been under a lot of scrutiny or disapproval, which brings me to another philosophy:  you may dislike a behavior but you can still like the person.
I love bracelets!  I have always loved them as an accessory.  It’s difficult for me to accessorize these days, but since I love bracelets, I wear the same three each day. Each of them has a meaning or a reminder as I look at them.   They are all made with a base material that I can just put over my wrist without having to deal with a clasp.  Matt got me a bracelet with orange and black beads (SF Giants colors) after the Giants won the 2010 World Series.  My friend Liz who makes awesome jewelry redid it as a smaller size.  I love baseball and it’s a great reminder of the value of patience.  Previously the Giants had won a World Series Championship in 1954 when they were in New York City.  The second bracelet is Buddhist Prayer beads.  The beads are made of jade and it’s to remind me of spirituality.  There are some things we can’t explain or see.  They are just part of our lives.  The third one is a blue band for AVM Awareness.  I now know heaps about AVMs, but I don’t know how many others do.  This is a big deal to me and I’m trying to get the word out about AVMs.  The more awareness we have the better!  People ask me about the bracelets.  I have a story to tell.
I’m still pretty judgmental and I realize I can’t change people or their behavior or my past.  (Much as I’d like.)  There is no “if only” in life!  I walk everyday as exercise.  Many do much more than a daily walk as exercise.  For me, it is huge!  I know that my opinion is not more important than anyone else’s.  I know and accept that.  I can only change myself.  How we treat each other matters and makes a difference.  Like I’ve said before, we don’t always get to choose what happens, but we can choose our response!  I realize that many are thinking that’s easy for her to say about honking as a non-driver.  I did not say ‘don’t honk’ but rather ‘if you have enough time to honk, you have enough time to get out of the way’.  (And I make my bed each morning.  I complete that one task.)  That’s the thing in common about everything in my philosophy.  I’m the one who makes things happen for me.  I am responsible for myself emotionally.  I always say it takes the same energy to be positive as negative.  If I have to expend any energy at all, it might as well be positive!
“When in doubt, punt!” John Heisman
It’s a sport metaphor.  In American football, (which is starting) the ball is punted downfield to the opposing team, usually on the final down, with the hope of giving the receiving team a field position that is more advantageous to the kicking team when possession changes.  This is like a stroke.  Well, mine anyway.  Here’s an example of my stroke and if have played Scrabble, you’ll understand.  When you play Scrabble you have a tile that you fill up with letters — usually six.  You draw those letters.  Here’s what I tell people.  For my turn, I got all vowels!  So my strategy has to change.  Fortunately one can pass and on the next turn, play some of those vowels on a word that the opposition has put down.  That’s my example of punting — when the strategy has to change because of something.
Here is a specific example of something I do as a result of the stroke.  I can walk backwards but I prefer not to.  When I have to back up or I’m instructed to do so, I turn around so I am facing the way I need to go.  I do this with the walker, quad canes or when I walk with no device.  I then go forwards.  It’s a different strategy but it gets me where I’m going.  It takes more time to do that but I always get where I’m supposed to do.
One of my favorite songs is “The River” by Joni Mitchell.  I think she’s a musical genius.  Because of the song’s opening line, many people consider it a holiday song.  It’s really not.  It’s about something that doesn’t go like we planned.  Our first reaction is to find a river we can skate away on.  Life doesn’t work that way.  Don’t I know?  So we punt!
In Lewis Carroll’s Alice in Wonderland, the character Alice comes to a fork in the road and she says to the Cheshire Cat “Would you tell me, please, which way I ought to go from here?”  The Cat responds by saying “that depends a good deal on where you want to get to.”  “I don’t much care where –” says Alice.  “Then” says the Cat “it doesn’t matter which way you go.”   I know where I want to go and how I want to get there but I have to change my road!
There was a TV show that I watched with great interest.  I saw the season 3 finale and so I made a point to see the season 4 opener.  Last month I was perusing On Demand (our cable feature that lets us view various things) and I saw that they were on Episode 7 of season 4.  So I just caught up with On Demand.  (I punted.)  I think this concept of ‘punting’ is interesting.  It certainly taps into our creativity and our willingness to find another way.  For that I give myself and other stroke survivors huge kudos!  Like I’ve said before, it may not look like it did before but as long as people are safe and they have found another way to do things, I think it’s fantastic.
I’ve said before that I love fish & chips.  A couple of weeks ago, we were at the beach at lunch time and were looking for a place to eat.  We were looking at menus and we saw one with fish & chips.  So Matt talked the hostess who said she could seat us.  Then she said “by the way, the kitchen is out of fries”.  What part of ‘& chips’ did she not get?  Fortunately, Matt is very flexible (see?  You don’t have to be a stroke survivor to punt!) and we found another place with fish & chips.  The value of punting!  (I think the new place was better and we had a great view!)
By the way — I can still win the game with that hand of all vowels.  In Scrabble you get to draw a new letter for every one you put down.  Isn’t that like life?  We have to let something go to make room for something else!

“You’ve got to get up every morning with a smile on your face.”  Carole King from Beautiful

August 15, 2014 will mark 9 years since I had the AVM/stroke.  While I don’t celebrate this day, I do acknowledge it as life-changing (and I drink champagne).  Every year for the August post, I update people on where I am and the major events of the year.  Some time ago we had several people over and somebody asked if we could choose any profession now, what would it be.  Mine was to be a professional baseball player.  Not just because I love baseball, but I see it as something where people contribute based on their skills and also they are part of a team.  I like that a lot.  I would say that’s been a big part of the year, how everything we do and are is a part of something.

We got a different car.  I share this because it’s an important part of the journey.  We had a Mercedes and I loved it.  We got it before I had the stroke and it was more my car.  Since I had the stroke, Matt has been doing all the driving.  We had lots of miles on the car and it was time to get a different car.  Matt got an Acura and he loves it!  The biggest difference for me is this — the Mercedes had passenger controls and the Acura does not.  Now when someone else is in the passenger side and makes changes, I have to make my own adjustments when I get in.  Isn’t that like life?  I had one of the first Acuras, so I have great memories.  I am also aware of how much things have changed.  Isn’t that like life also?

A lot of people want to know what is the status of my sense of taste.  For the most part, I taste everything.  I did not have one of those ah-ah moments where I could suddenly taste everything.   It has been gradual.  The sense of taste I have is not as strong as it was before the stroke.  I also think it’s more memory than anything else.  I can taste things I see.  (Spices that I can’t see, I don’t taste.)  I’ve said that I drink jasmine tea and I can smell the jasmine more than taste it.  It invokes the sense of smell along with the taste.  If I can’t see it or taste it, maybe I can smell it.  That smell becomes a bonus!  That’s an example of things I try to do these days.  Matt has been getting me fresh flowers every week (and sometimes I smell them).  What a treat to see them every day!
Matt and I had our 20th wedding anniversary.  We went away for a few days.  I have one of those traditional walkers which folds up compactly, so I can take it when we travel.  I had a great birthday party with a magician in November.  (As Matt says my life is kind of magical!)   We had a food truck to provide meals for guests.  What a great idea to minimize what we do.  It’s a great idea for food for anyone with any kind of restriction.  (Actually it’s a great idea generally!)  We continue to be active at the Magic Theatre in San Francisco.  I did a post on imagination.  A lot of activities are around this idea of imagination.  It’s why I like all kinds of art, theatre and reading.  It’s a great opportunity to use my mind and imagine what things are like.  These things are also important to me as the concept of communicating in various ways is an important part of any process.  This is an important part of the journey.  It has us look at things in a whole new light.  I think we value speech as the most important part of communication, but other things play an important part in all this.  We have seen a few Shakespeare plays which have been performed in a bar.  I see many people I know and I get to see a play performed.  It’s a great experience and one of those things where I can enjoy multiple things at once.  They are also heaps of fun and I think having fun is an important part of the whole process.   Yes, it’s a lot of work, might as well have fun!  I remember when I first had the stroke somebody said to me “you’ll just find new ways to do things.”  So I have and included ways to have fun doing so.   I have an issue with stamina so we got me a wheelchair so I can keep going.  I use it occasionally but it’s a very different perspective seeing things from a wheelchair!  We went to a TED conference this year.  I thought it was a great experience to hear so many speakers who were concise and poignant.
As Carole King says “You’re gonna find, yes you will, that you’re beautiful as you feel!”

Sometime ago I did a post on memory, this time I want to focus on memories or things as they were. The Facebook application has a concept called throw back. It’s mostly used for pictures taken a while ago. At first I dismissed that whole idea but now I see the value of it. It’s not denial or wishful thinking, I see it as acknowledgment. I think it’s important to remember things (good and bad) as they were. That’s acknowledgement. But realistically it’s mostly good things we remember. Did you ever listen to the lyrics from the theme song that was used by Barbra Streisand in the movie The Way We Were? One of the lines is “memories may be beautiful and yet what’s too painful to remember, we simply to choose to forget.” I would put that in the category of priceless. I’ve said before that there are no pictures of me when I first had the stroke or was at the hospital. (That’s a memory that I don’t need to keep!)

Occasionally I remember my dreams. Recently I had a dream where I did not like the ending. The ending was not negative (actually it was a happy ending) but not realistic like those flying car dreams. I used my memory to change the outcome. It was about shoes and you know I love shoes! I just wanted it to end differently.

As a stroke survivor, I totally get that I will not be the same as I was before the stroke. I think it’s important to acknowledge things. Osiris says “You’re not the same individual you were a year ago, a month ago, or a week ago. You are always growing. Experiences don’t stop. That’s life.” I know the whole thing for me is a fine line about living in the past but I think it’s important to recognize the things that have occurred and have shaped me. I think it’s a great thing to have memories of the past. My heart goes out to people with Alzheimer’s or dementia and what they remember. I value the memories I have. It helps to acknowledge things and people.

I had my stroke when I was 49. I think that’s young to have a stroke. The source of my stroke was an AVM, mine was congenital. I had it at birth. When I think about it having an AVM (before it burst) for 49 years, I think that’s amazing! That’s one of the the main reasons I try to remember and acknowledge things from the past. The past becomes an important part of the future. What if it isn’t a good memory? I have a friend who says “forget the memory but remember the lesson”. Matt had saved the cards that I received when I had the stroke and gave them to my mother who made me a scrap book. I keep that book and just re-looked at it all. How fabulous to know that we are loved so much. That is a great memory!

In the TV show ‘Rizzoli and Isles’ there was a perfect example recently. Last year one of the characters (Lee Thompson Young who played Barry Frost) died in real life. They had filmed the whole season so they did a funeral and a tribute on the second episode of this season (Season 5).  Angie Harmon who plays his partner on the show (Jane Rizzoli) did the eulogy at his funeral. She said “death may have taken Barry, but it can’t take our memories of him, those wonderful and perfect and beautiful memories. Those, thank God, are ours to keep.”

As the song says “memories, light the corners of my mind”


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