“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.” Michael Jordan

I’ve always said that my idea of exercising is “jumping through hoops, jumping to conclusions and pushing my luck!” Last month we saw the movie The Martian. I’ll share the part that’s common knowledge about the story. It is based on a book by Andrew Weir. The plot is about a mission to Mars by NASA (U.S.) and a crew of six astronauts. While they are on Mars, the astronauts encounter bad weather and decide to scrub the remainder of the mission. In the process of gathering final samples of Mars to bring back to Earth, an accident occurs and one of the astronauts named Mark Watney (played by Matt Damon in the movie) is presumed dead. So the rest of the crew heads to Earth for the long journey home. But it turns out that Mark Watney is alive and has to figure out to to survive. Somebody at NASA is watching a monitor and realizes that Watney is alive. I got this next concept more from reading the book than watching the movie. (I was in a hurry to read the book before we saw the movie. If there is a book, I like to read it before I see the movie.) The first couple of chapters are Mark Watney’s adventures and I was totally focused on him and what hoops he was jumping through to survive. (Growing food on a planet where nothing grows!) The next chapter in the book focuses on NASA and their feelings when they find out he’s alive. Somebody asks the question about the crew who is on their return and doesn’t know this information … should they be informed that Watney is alive, etc. To be honest with you, I didn’t even think about NASA and the rest of the crew and their perspective as I was reading the book. I am amazed at Watney’s creativity. That is totally like a stroke! I often say that the day I had my stroke, lots of lives changed significantly. As a stroke survivor, I can tell you about creativity and jumping through hoops! I’m also impressed that through it all Mark Watney has a great sense of humor. You totally get that in the book and from Matt Damon in the movie! I think it’s an important part of the whole story. You not only find yourself rooting for him but smiling as you do so. In the movie as in the book, they talk about the whole world is watching. I love that idea.

Many years ago, Matt and I were part of a group that facilitated workshops where the primary learning tool was a software simulation. One of the courses was a project management simulation and they used the concept of teams as defined by Carl Larsen and Frank LaFasto in their book Teamwork. One thing that has really stayed with me is the notion that successful teams have a clear and elevating goal as the authors point out in the book. We used that idea heaps during the course. Do you remember the movie Hoosiers? It’s a sports movie that tells the true story of a small-town Indiana high school basketball team that wants to win the state championship. While that is their goal, each member had a goal that would make that win mean something significant. I have always remembered that idea of a clear and elevating goal. I would say that has been an important part of the whole journey. It’s a concept that we can have as individuals also.

Now here’s an example of that concept as it relates to a stroke. People tell me that a good friend of theirs had a stroke. They want to do something. The stroke survivor may or may not have a caregiver. They then tell me all they can do is bake a casserole. Should they? Yes! It may just be a casserole to the person making it, but think about the gift of time to the stroke survivor or caregiver. Somebody doesn’t have to decide what to fix, or check if they have the ingredients on hand, nor do they have to prepare it. But the most significant thing is that they were in good and loving thoughts.

Here’s another example. I said we went to the Oregon Shakespeare Festival in August, (Here it is December and I’m still talking about the experience.) One evening the Artistic Director of OSF shared with us that they get very good press about the festival and people’s experience. He also went on to say that people have a different mindset when they are there. They acknowledge that they are on vacation. Consequently when they watch the plays, they approach the experience differently than when they see a play at home and thinking about other things in their life. I guess as I think about the idea of jumping through hoops, I think it is about changing our mindset! The whole world is watching — let’s jump through hoops. I would say that qualifies as a clear and elevating goal!


“I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have been loved; I have been given much and I have given something in return; I have read and traveled and thought and written.” Oliver Sacks

Oliver Sacks the neurologist and acclaimed author died in late August. In February he wrote an Op-Ed essay in the New York Times after he had been diagnosed with terminal cancer. In the article he says “it is up to me now to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can.” The New York Times referred to him as the poet laureate of medicine.

Alison Shapiro who wrote Healing Into Possibility wrote a piece where she says “he was a remarkable man, a neurologist, who lived with deep awareness and compassion, and wrote many beautiful books and articles. Sacks saw the life of the brain from the inside out. He never objectified us or simply saw us as something to be fixed. He saw each of us as a person to be respected and learned from. When we have a brain injury of any kind, people so often see us as ‘less than’, as ‘broken’, as ‘needing to be fixed’. Sacks never saw us as ‘less than.’ We may need to heal. We may work hard to encourage the neuroplasticity in our brains and seek to recover physical function, but we are not broken and we do not need someone else to fix us. We are living our lives as we recover and we are discovering things about life, creativity, and courage and how to express our inherent wholeness that those who seek to ‘fix’ us miss completely. We are on a powerful journey and we have lessons to teach from our experience.”

Do you know the story behind the saying “letting go of the purse”? Sometimes a person cannot let go of the purse when they get robbed. For people that take a self-defense class, this is one of the first things taught in the class about a mugging or robbery. Let go of the purse! It’s the contents that we treasure. Most of those can be replaced. This whole concept is a great way to live life.

The President of the United States has access to an airplane called Air Force One. One of the past Presidents had a daughter who attended Stanford University (just down the street) and as the parents flew her across the country to drop her off for college, our family was able to go see the airplane, the President and his family. When we were there, I said to Matt that I should have brought a camera to preserve moment. This was before cell phones and everybody always has a camera! Matt said to me “you’ll just have to remember the experience and preserve that in your mind.”

For my November entry (it’s Thanksgiving in the U.S.), I do a gratitude post. I focus on the contents of the purse. I cannot know Oliver Sacks’ thoughts at the end but I would imagine he was focusing on the contents of the purse. I know many are thinking well it’s mostly women who carry a purse, but as a metaphor of how we live our lives, it’s a great concept. Now as someone who valued their purse, this is significant. I stopped carrying a purse after the stroke. I realized that I really didn’t need all that stuff. I only wear pants and there is one thing that I use all the time — Chapstick. So I look for pants that have a pocket for my Chapstick. When I don’t have pockets, I give my Chapstick to Matt to carry. You also notice that the saying is letting go of the purse … not purses!

Here’s another image. I mentioned that Matt and I had somebody from a San Francisco nursery that specializes in succulents, design the back yard and its contents. I had said to the designer that I had lost my sense of smell with the stroke. He said “then succulents are great for you because they don’t smell”. This is an example of letting go of the purse (that purse)! I had an image of how gardens should smell. Now I’m going to take that image one more step. Last month we went to the Arizona Garden. It is a historical garden on the Stanford campus. (It’s a succulent garden.) It was designed and planted for Jane and Leland Stanford between 1891 and 1893. I love our succulents. I saw a succulent garden that was over 100 years old. That is a completely different purse!

Here’s something which has stuck with me. It’s about “letting go of the purse” and looking for other purses! It’s not related to being a stroke survivor but rather something we can all do. I said that Matt and I had gone to the Oregon Shakespeare Festival in August. We saw fabulous plays and met some wonderful actors. In our discussions we discovered that many actors read stories for audible books! They are the voice we hear on audible books. It makes perfect sense since they have a wonderful voice and are used to playing a character. I love that. They use their skills in other areas. (Same skills/contents, different purse!)

A few years ago, Matt and I went to a resource fair by one of the local stroke associations. One of the vendors/exhibitors was a person (stroke survivor) who had a “One Handed Kitchen”. It was a woman who loved to cook and as many stroke survivors have paralysis (or something else), she showed a lot of tools that could be used in the kitchen with one hand! That stayed with me. It’s letting go of the old purse! My mother is a fabulous cook and before he retired my father was a chef, so I grew up with food being very important. I don’t cook since the stroke (my ataxia is too severe to even hold a knife). I told someone that one of the doctors told me to look at food like medicine. Matt has always been a great cook. He has taken over all the cooking since I had the stroke. It’s a different purse for me. (Truth be told, he’s a better cook!)

Another thing about food and letting go of the purse. Every day I have an ice-cream bar by Häagen-Dazs®. (The vanilla ice-cream one with a chocolate dip. Yum!) Most afternoons I have chai tea and I use milk in the chai. When we run out of milk, I just put part of an ice cream bar in the chai. People ask me if the chocolate bothers me. Are you kidding? People pay a lot for a chocolate chai. (Eggnog works great also but that’s a seasonal thing.)

I am grateful for the contents of the purse!

“You can’t argue a balk”

I don’t know who said it originally, but a balk is baseball terminology (you may need to look it up). Anyway it allows me to link baseball into this whole technology concept. I love technology. I see it as an indicator of life moving forward. I am linking a lot of things into a technology bundle and I realize there are many aspects to this area but in general I see how folks are using technology with medicine. I am all for this.

At the 2014 World Cup in Sao Paulo, Brazil there was a teen who used a brain-controlled robotic bionic exoskeleton suit to enable him as a paraplegic to get up from his wheelchair and make the first kick of the tournament. How great is that? The exoskeleton was the brainchild of a collaboration between several universities across the globe. The technological miracle of a brain-controlled exoskeleton uses an interface technology developed by a Brazilian neuroscientist. He said in a recent interview “we want to galvanize people’s imaginations.”

When I first had the stroke a friend helped Matt set up an e-mail system to notify several people. When I came home from the hospital, I couldn’t read because of my ataxia. I had it in my eyes! I was familiar with a PC, so Matt switched me to a MAC because he could set up the operating system to read out loud to me. This way people could still send me e-mails! I had a nurse and I would dictate to her and she would type and send a response. When I started typing (with one hand) another friend and Matt set up the wordpress site for me. So I am a huge fan of people with limitations using technology. I think technology is a huge part of belonging. All of this connects me to a stroke community and others. Now is there a way to promote the idea that we are a part of something bigger? With all that in mind, I’m adding a new category to my site called ‘guest posts’. This is a place where I can put posts that other people write about strokes, caregiving and/or devices used in the stroke renewal process.

A couple of years ago, I did a post on baseball and how they have a spring training. I know baseball is a U.S. thing. Spring Training happens before the season starts. It’s where players practice the basics and review the game. The week before most players arrive, the pitchers and catchers report to solidify their skills and work on the relationship! That’s something I think baseball and strokes share: time to practice, review the basics and focus on the importance of relationships. (This does not mean that people have to be friends to understand the role of another.) I would put the whole concept as part of the game. What a great thing!

I have a friend who had a stroke before I had mine and when I first met him, he was in a wheelchair. He now uses a bionic leg to walk. This is fabulous. Last month we went to the Oregon Shakespeare Festival as a part of a group. We saw 6 plays in 3 days. There was only one play which I didn’t like. The group was scheduled to have dinner together one night and we had a few guests join us. As fate would have it, the gentleman that sat next to me at dinner was the Assistant Director of that play! So I asked him about the play and the message. He gave me a great answer about looking forward. We get so caught up in the past that we miss all the wonderful things that are in front of us. I told him that we use the word renewal rather than recovery to describe the post-stroke effort. That’s exactly what the play was about. I view technology as a tool of this renewal process. I did a guest blog post for someone and my summary was about finding new ways to do things. Technology can help with this. This is what I mean by “you can’t argue a balk” (or a stroke for that matter) but technology allows us to find new ways to do things. It’s part of our lives!

National Stroke Association has a website for Stroke Smart Magazine and they had a piece on the advantages of virtual reality rehabilitation. They mention that recent studies indicate incorporating the technology used in popular gaming systems like Nintendo Wii, Sony Playstation, and Microsoft Kinect into a therapy regimen can help improve mobility and function. I use my Nintendo DS extensively! I use the games and stylus to work on my ataxia and memory.

There are articles about therapy delivered via a robot to people! How great is this? People who live in remote areas or don’t have access to a person who can provide therapy can get the assistance they need. Recently our public radio station ran a segment on a downtown San Francisco restaurant which is the latest to experiment with virtual alternatives to wait staff. After a person places their order at a kiosk with white tablet devices, they pick up their food a few minutes later behind a glass door or “cubby”. The only humans in sight are the concierges who can answer questions that a person may have about the software and there are a dozen or so staff in the kitchen. While this may sound futuristic, it is something to think about. We have always said in our house “someday a robot will do that!”

As a general rule, I’m not going to modify the guest posts people write. I’m sure you’ve heard the saying “it’s easier to get forgiveness than permission”. This post is from Sara. She and her husband Bill are Lizzie’s parents and caregivers. They have a son who just graduated from college. In May, our families did the AVM Walk in San Francisco. Only Lizzie and I had AVM/strokes but our group was ten people. In the U.S., approximately 795,000 people suffer a stroke every year. On average, someone in the U.S. has a stroke every 40 seconds. Those are stroke statistics — now add to that family members that are impacted by a stroke. The number is astounding I often say the day I had the stroke, it wasn’t only my life that changed. I love the part where Sara talks about Lizzie’s impact on the community.

From Sara: A few words about our family’s experience with our daughter who had a stroke at 19. We met Vangi through a physical therapist my daughter had. When the therapist told me about Vangi and how she was willing to talk to us I felt an instant bond with her as she had an AVM in the same location as my daughter’s. After a few emails we met and I felt an even stronger connection and inspiration from Vangi and her husband/caregiver extraordinaire, Matt. What a duo of strength, love, laughter and perseverance. Further they both make rehab look effortless when we know it isn’t.

Life can take unexpected turns as it did for our family of four, myself, my husband, my son 20 at the time and my 19-year-old daughter. The day after Christmas of 2012, with no prior symptoms my daughter lapsed into a coma from a ruptured AVM and subsequent stroke. Thus started our journey in this world of brain injury and the long and longer road to recovery. My husband and I followed our daughter through a year in four different hospitals from Stanford, to Marin to Bakersfield, observed and learned from the teams of specialist in medicine and various therapies, and stood vigilantly by through two operations to obliterate the AVM. The journey has been incredibly hard, tear filled, emotional, and beyond stressful, physically and mentally. Each step in the recovery seems to have it’s own set of new challenges. Being a caregiver is harder than I could ever imagine. All else seems to have no place in our life. Yet we work to keep our relationship with each other and our son, be mindful of our aging parents, friends to our siblings, and maintain some sort of cobbled together social life.

Despite how hard being a caregiver is every morning we get up and work just like the day before. Providing the initiation that was struck away from our daughter as she continues with her therapies to relearn, strengthen and heal her body. Her progress is slow but over time impressive to see. We continue on as the hopefulness of youth and our daughter’s improvement keep us focused on some goal. Not sure what that goal is but we know Lizzie has a lot of potential to get better.

I’d like to think there is a greater purpose in what happened to Lizzie. And while I can’t think of what it might be I wonder if it is the effect Lizzie has on the greater community. As we walk down our street at night and greet our neighbors I know their lives are touched by the hard work Lizzie does everyday. Many of the neighbors will see Lizzie walking and will come out to cheer her on or greet her and remark on her progress. Lizzie’s injury, hard work and progress has reached our community and then some and effected many people.

If you’d like to read about Lizzie’s journey please check out http://www.caringbridge.org/visit/lizziesomers/journal/view/id/5609a8afa689b4cf5dd5a384#comment-container. You’ll be impressed!


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