devotion

I have a favorite lyric from a song in the White Christmas movie:, “There were never such devoted sisters.” I experienced this devotion in the last 10 days during two of my sister’s visits to Austin. Theresa came first and we had a lot of fun. We had really good meals together, saw two movies and attended the “One night with Janis Joplin” show. Theresa along with my siblings also gave me with an astonishing birthday surprise on Friday. With Theresa, you have to be a little careful what you say because she makes dreams come true. She knows I have a goal to be able to sing again. She arranged for me to have four sessions with a vocal coach. After session two, I am singing, albeit not pretty, but I’m doing it. Together we are trying to “find my voice” again. Susie then arrived and we met up with Theresa in Houston to visit my parents. It was a thrill for me to observe the devotion and kindness they show my parents they made healthy, wonderful meals, developed a more healthy meal plan regimen. They wanted to ensure my parent’s quality of live is the best it can be at their advancing ages. They developed memory tools for Mom. Upon our return to Austin, Susie was then focused on getting her daughter safely ensconced in her apartment. She took the time to see to my every need before her return to Las Vegas. She made sure that I had food prepared throughout the weekend and we brainstormed tools to improve my independence. She and I discussed how I could live more frugally. I miss them terribly now that they returned to their homes. Stroke survivors tend to need care giving from multiple sources. As the music goes, it was true in the 50’s and true today; I am so grateful and fortunate to have five such devoted sisters.

A right to make ones own decisions

This past week, Bob forwarded an article from the New York Times:  http://www.nytimes.com/2013/07/21/magazine/a-life-or-death-situation.html?pa&_r=0

 It’s a story about Brook and Peggy.  Brook had a bicycle accident that left him paralyzed from the shoulder down.  He requires 24-hour care and currently has 12 caregivers.  My friend Sandra says: “The article will put you through “emotional exercises.”  They struggle with keeping Brook alive vs. his right to die if he chooses.

It elicited a flurry of activity from our family, so much so that I consumed half a day reading and responding to emails about it.  The comments ranged from profound to poetic to highly insightful. I was asked what I thought and I do think I’m uniquely qualified to have an opinion.  I dislike being dependent on anyone.  I also dislike losing my identity; translation, no career goals. Prior to the stroke I had a wonderful career: managed ~28 people, a $50M budget, worldwide responsibility and on an executive career path.  As my very wise sister-in-law pointed out: “A woman has to reinvent herself every seven years.  It is yet again time for me to redefine myself and who I am.  I think we need to view this as opportunity to change, grow, and move forward to another stage. “ I struggle to figure out my next stage and new identity.

 I could devote an entire blog to my mother. I wish I were a tenth the woman she is.  She raised seven kids (all with advanced degrees except me), while working full-time as an ICU nurse.  Upon retirement, she reinvented herself – she became a craft person extraordinaire – quilting, Brazilian embroidery, and other crafts.  she continues to quilt once a week with a Ladies’ guild. Yesterday she renewed her driver’s license. She is 93.

Not in plain sight

I know, I know you’re tired of hearing how I lost half my brain during the stroke but every once in a while something happens that restores your confidence that you’re not losing your mind.   About a month ago I lost a box of earrings at Bob’s Moms house. It happened when I returned from Bob’s birthday party in Houston.  The box had 4 pair of earrings in it and they are the type that would be hard to replace, not because of their value but because of their style. I was certain I packed them and they made it to Austin but when I retuned I couldn’t find them.  Retracing every step was difficult because I went many places in preparation for the party.  I called or visited every place I went incuding the Houstonian, Neiman Marcus, Megabus, my parents, my driver, and my mother-in-laws's house, Bob’s shop twice, I even posted a reward at 2 places.  This is how special they were to me.  I knew in my heart I did not lose them but a month later I resigned that they were, in fact, gone.

I’m glad I followed my horoscope today.  It said “Don’t be too afraid to make the wrong choice. Wrong choices lead to right choices.”  Today I made the, in my opinion, wrong choice to return to Austin two days early vs. drive back with Bob.  This decision led me to unpack and when stowing my bag upside down and shaking it to fit in the cabinet, the earring box fell out.  So I guess I’m not losing my mind after all.  What a day!

in honor of

Bob and I just lost an incredible friend in a helicopter crash.  Joey was one of the most unique and special people anyone could ever meet. I want to share some thoughts about what it was like to have had the honor of knowing him as a person: 

Joey was initially a business associate/colleague of Bob’s brother, who over time became a good friend to me and Bob.    Very soon after my stroke he flew to Houston to comfort Bob.  In fact, when I was in pretty bad shape he told Bob candidly "She's not going to make it”.  He could sense I was giving up.  I think this candor was healthy and helpful to Bob and the behavior of a good friend. Joey defined friendship, he defined family.  I have never observed anyone more devoted to his family than Joey.  He could be at a party,  with 50 +friends and the minute his family arrived it was as if no one else was in the room.  He embraced them instantly - from his 2 grown children to his baby.  You had to be a little careful what you said around Joey, because he was the type of man who made dreams come true or brought dreams to life.  For example, I expressed a casual interest in learning Spanish. Within 3 months I was living on his ranch in Mexico immersed in Spanish lessons and practicing daily with a Mexican family. He saw to my every need during my 3-week stay here.

His generosity knew no bounds. After my stroke he insisted I come to the Feria in Queretaro.  And this trip would include attending a bullfight.  He knew I would have difficulty navigating the bullfight arena so he modified the bull ring stadium - just for me.  I was astounded.  Our favorite Joey phrase is "We’re going to have a lot of fun” He would say:  “Let’s go to Spain to the bull  fight or let’s go out on my boat”, etc.  Joey would say these things and then actually make them happen and you always, always did - have a lot of fun.

On a couple of visits to Queretaro, we included our friends and Joey embraced them as if they were his own friends.  His impact on our friends is legendary.

Joey loved Bob which made me love him even more. I remember he told Tom once that "Bob is the fun brother."

Joey smoked, drank, laughed, ate, loved, worked, traveled, entertained, partied,  and basically did anything he wanted to do for his 55 years.  I personally think he was happiest when he was surrounded by his family (and this would have to include at least one beautiful woman) and in Joey's case this was his wife, Alma.

As we go on in this world without Joey, we are going to live by his mantra:  "We will have a lot of fun. If we don’t, there no point in doing it.”  I honor you, Joey for the richness, (not riches) you brought to our lives.  I miss you already and wish we could have spent more time together.  You will be in our hearts and minds forever.

vegas Part 2

I’ve just returned from one of the most accessible cities in the country for the “handicapable”. Las Vegas, particularly the areas around the big hotels/casinos cater to those of us with a chronic challenge or two. I visited my sister who had a wonderful “master plan” full of activities that she fit within the four days I was there.  Parking, walking and building access is so good; I could almost go the distance on my own. Stepping out of the car, the valet was ever present to provide assistance. Also, hotels loan wheelchairs, also provided near the entrance to a hotel.  To maneuver through crowded casinos, the wheelchair was the right choice.  Shops and restaurants also are accessible with wide aisles, wheelchair accessibility and caring staff.  We went to a steak place in the Cesar’s Palace Forum shops and sat outside the restaurant so we could still have visibility into the mall. Accessible restrooms can be found throughout Las Vegas and not an after thought as in many of the places I have traveled. Everyone is so accommodating it’s almost as if the planners made a conscious effort to cater to all customers, especially those who needed a little more assistance. Of course, tips are welcome.

Mid Year Report Card

I am giving myself a midterm report on my rehab:  C- for walking and a B overall. Let me explain  If I were to contact my former PT at St David’s and ask to continue therapy with her,  I would  honestly tell her that not much has changed since our last session. With that report, she shouldn’t take me back.  I still don’t know how to completely put weight on my left side (because I can’t feel it) and pass with my right foot.  I do practice everyday at the ballet bar in our house. The exercise is to stand just on my left leg without holding on to anything.  However, it is difficult to place blind trust in something when you can’t feel your leg. Until I can do this I have limited travel options; however, this has not completely limited my travel.

I just returned from a week in Vegas with my sister Susan and her husband TJ.  Susan had a master plan of activities to fill the days.  The first day we drove to the Grand Canyon and toured/walked the Glass Skywalk A top the Skywalk, you stand 4,000 feet above the Grand Canyon on a horseshoe shaped walkway with a glass floor. Look down and you feel as if you are "hovering" over the canyon. Because of the crowds we borrowed a wheelchair to get to the skywalk.  Other activities included shopping at Ceasar’s Palace Forum shops.  Again, we borrowed a wheelchair for this adventure because of amount of ground to cover and maneuvering the crowds.

We also attempted to paddle boat in Lake Las Vegas, however this wasn’t possible because of the three-foot drop to get to the water and paddle boats. No one was willing to risk carrying me down the steps and I don’t blame them. Our last outing was the Spring’s Preserve where the original settlers landed in Nevada. The springs terrain off the path was too tricky for me to manage so we stayed on the path.  Overall there was a lot of walking challenges, yet I managed.  I prefer not to use a wheelchair but it does provide adventures that are not otherwise possible.  The overall B grade is for trying and realizing my limitations.  There are so many things I can do it just means getting out of my comfort zone.

on the horizon

This past weekend was another “reset “with Bobs visit. We barely had 22 hours together and we packed a lot in including spending Saturday evening meeting a new neighbor that wants to commission a piece from Bob and buy one of his existing pieces.   Bob ensures my trike is properly maintained and handles all the necessary outside work to keep the house nice for showing.  Sometimes the visits are difficult because they are so short but I take what I can get. 

We will be apart these next few weeks more than normal due to respective travel plans.  Bob encourages me to travel and do new things.  Having something to look forward to keeps me focused and motivated. And I relish alone times. To that end, I started taking an online art history course. I also am looking forward to planning and attending Bob’s upcoming birthday party and visiting my sister in Las Vegas.  Earlier this month I was asked to give a speech to 30 UT graduate students who are studying to work with brain injured patients with speech issues.  It was motivating to prepare and anticipate their questions.  

Travel to and from Houston is made possible thanks to Mega bus and a $5 ticket.  While bus travel is challenging for an individual with a disability, the challenges are workable and make me stronger.

My point is, if you can, always have something on the horizon.  The planning is as motivating as the event itself. Everyone needs to have something to look forward to.