multiiple support system

This morning I got dressed just like I always do except I put my shirt on upside down. Before you think "uh, oh" is up. This one had a printed tag and a "floppy" tag. I followed the floppy tag and to my dismay it was a Chinese Finger Trap after that. Fortunately Bob was there and helped me out. But I was stuck which brings me to I’m glad I now have a roommate for the times Bob is away.

About two months ago, I acquired a roommate.  She was a past driver/caregiver who was looking to move closer to town while she goes back to school. At first I really didn’t know how this would work out since I am used to being on my own now for 9 months. We had a typical startup relationship-- “bumps” One night I came home late and really tipsy after an annual girlfriend Christmas party.  I came inside and went back out to close the garage door.  Upon reentering, I fell and yelled for my roommate for help. I did not realize she had to get up the next morning at 4:00 am and she was angry with me that I was insensitive to her schedule.  She was also worried about what I would have done had she been not been there.  I apologized and we moved on.

I am happy to report after two months it is working out to have a roommate.   I appreciate and like the company; I  enjoy her youth (she is 19) and perspective.  I have a sense of calm knowing she is here and Bob has a sense of calm knowing I have support in the event of an emergency.  The point is that stroke survivors need a support system and need to “think outside the box” when it comes to support with a focus on not leaning on my spouse for 100% of my care. Support systems for stroke survivors come in all shapes and sizes.

Romance

I don’t often speak about Bob and my relationship.   I tend to focus and write about his role as my caregiver.

What I crave and nag him about is romance.

After 30 years of marriage and 7 years of post-stroke it’s difficult to “conjure up” romance.

But, I digress

 Last weekend I went to New York to be with 3 of my sisters and see my niece Angela perform the lead role in the play “streetcar Named Desire, “I was anxious to see if I had the stamina to travel like this and have it be a template for future travel.  We spent 3 hours at the Guggenheim museum and visited the new 9/11 Memorial. Our first trip to the memorial was just after it happened and now I went back to see how they honored the victims.   My niece was exquisite in the role of Blanche.  I sat through her 3 hour performance thinking I believe she could be a star one day.  Learned I can do things like this and the lesson is to get out of your comfort zone if you can. 

 

Upon returning to Texas, I stopped in Houston.  As I was wheeled out to the terminal, there was a man on my left who said to the wheelchair attendant:  “I’ll give you $10 bucks so I can take that girl for a beer.  He said: “ Well, Who are you?”  “I’m her husband,” says Bob.  He surprised me and came to be with me during my two 2-hour layover in Houston that turned into a 4 hour layover.   If you travel, you know it’s almost impossible to get through security without a ticket, but Bob found a way.  Now that’s what I call romance; Not, jewelry, gifts or nice dinners but finding ways to be together.  It was a perfect end to a perfect trip.  Thank you Bob.  The picture below captures my glee upon seeing Bob.

prevision

I sometimes have to write about topics several times. At the risk of repeating myself to let the message “sink in”. This time it’s about stroke survivors needing something to look forward to. In my case it’s an upcoming trip to New York. The trip is centered on visiting my niece and attending A Street Car Named Desire, in which she has the lead role. I’m meeting three of my sisters in New Jersey. We are planning several site-seeing activities during our visit including the Guggenheim Museum, the 911 Memorial and hopefully, the Donald Judd exhibit. I find myself energized. While planning, though, I have to consider how not to be a burden being with three able-bodied adults. To that end, I am practicing walking so as not to be a burden while walking in the cold. I have to figure out how to increase my stamina and be able to do things out of my comfort zone since I’m used to staying home most days. This includes walking in different temperatures, on uneven payment, and in new territory that I may or may not be able to navigate. Being with my sisters is a great motivator since they are fun, highly intelligent, caring women. I will report after my trip with an honest assessment of my ability to travel. I also view this as a test. If I accomplish my goals, i. e. stamina and walking strong, it may mean future trips with Bob where I am not a burden, which should be the goal of anyone with a disability – standing on their own two feet (so to speak).

figure it out

You’ve heard the saying: “things happen in threes.” Well they did for me lately. The things that happened to me fall under the category of “just figure it out.” The first is I’ve been riding my trike for almost eight months and every single time someone has had to help me put my left foot in the stirrup. Last week while waiting for my neighbor to do this for me, I just took a little more time and was able to do it myself. I can now ride my trike whenever I want. The second thing was I took the Mega bus to Houston last weekend. Traffic was so bad leaving Austin that a three hour trip turned into a five and half hour trip I had no choice but to use the bathroom on the bus. To do this required walking from the front to the very back while the bus was moving. The width of the bus is about 6 inches. While walking to the back I had to hang on to the headrest of each seat I passed while furthering my cane down the aisle. Because I only have one functioning hand, I couldn’t do these things simultaneously, so the people on the bus would take my cane and push it forward for me row by row. In two instances people were sleeping and the people moving my cane would tap the person to wake up and move the cane. Never underestimate the kindness of people. When I got go the back the bus, it started rolling again. I cannot under any circumstance go to the bathroom while the bus is moving. A gentleman at the back allowed me to sit next to him. The third occurrence was today in the shower. I am totally in no clothes and realize too late that the soap and shampoo are out of reach. I cannot stand without my brace so I sat there for several minutes and weighed my options. If I try to stand, I could slip in the shower and no one would find me. I figure out the only course is to get dressed and put a sock and brace over wet legs. In the past with all three of these examples I probably would have relied on Bob to come to my rescue, but this was not an option so “I figured it out. It makes me stronger; makes me less reliant on Bob, which is what we want and it makes me want to tackle new things.

new sisterhood

I went to a movie with my friend Patty yesterday and she suggested I blog about my trike rides and events around them and the fellowship that occurred as a result. I generally ride in the mornings for two hours 3 - 4 days a week. Often I see my neighbors from their cars. One of my neighbors helps me on the trike. As a thank you gesture, I invited four of the neighbor women for wine and appetizers one evening this week. A couple of the women I had never seen outside their cars. We discussed making this get together a regular occurrence. One neighbor suggested we start a kind of “sorority” and we should give ourselves a name. At my age it is not that common or easy to make new friends and my stroke brings out interesting behavior in others. Neighbors and my new friends want to go out of their way to help me. Since Bob and I are often apart, it is very comforting for both of us to know we have such a strong support network. Stroke survivors need many different types of support and this group provided a great respite. They helped me know that I can build new friendships and there are many caring people in this world. …It takes a village to raise a child; it takes a village to support a stroke survivor.

motivators

Before my stroke and when I worked fulltime, I was busy all day, every day. I have not experienced this kind of busy until the last couple of weeks. The first of the two was the planning and hosting our first artist reception in our new gallery, in Houston aka, Capitol Street Gallery It was the most fulfilling time for me – to have something to look forward to every day that did not include rehabilitation. I did, however always include some form of daily exercise. Two sisters visited me prior to the reception and one after. Their visits were timely and also kept me busy. Just having the company puts a spring in my step. In addition, I am a volunteer for the Greater East end Houston Management District. Since we will live in the East end of Houston when we move, I have a vested interest to get involved with the activities in this district. Since I don’t work fulltime, I should always have something to occupy my time and skills. When people ask me how I spend my day I’m very conscientious about my answer. As my sister Martha, says, “If you can’t find volunteer work, you’re not trying.” I am currently planning future artist receptions and my goal is to try and always have something to look forward to. It’s huge motivator. Stroke survivors like others need a reason to get out of bed every morning.

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.

a reset

Several years after my stroke I aspired for independent living.  Now that I have it I can safely say it’s worth it but not all its cracked up to be.  Bob does not come home every weekend due to work demands but when he does I refer to him as “reset Bob”. This weekend in less than24 hours he:

·        Reset the TV (it wasn’t working before he came)

·        Fixed things around the house so it will show better such as burning brush down by the driveway; he also removed a lot of clutter

·        Reset my eating and sleeping habits (I don’t do either well when he is away)

·        Took care of my Mexican food fix

·        Made sure my trike is  maintained

·        Found a King snake and made sure it will not get in my way

·        Recalibrated my speech I have to give on Tuesday to UT Speech and Hearing grad students

·        Overall, it is just more fun with Bob around

In my last blog, I suggested if you don’t have form of exercise, you should get one.  Today I recommend if you don’t have a “Bob/partner, you should get one.one could argue that if I was truly independent, why do I need “resetting” and my answer is:  “I just do.”

Life's elixir

Last Friday my brother-in-law was in town from Chicago and we wanted to go on a bike ride.  I took him on my ~8 mile.  route Here is what he wrote to his siblings after our ride: 

“Annie invited me biking today. I figured what the hey, I can putter up and down their street for 30 minutes then wade into Bobby's beer supply. Nearly two hours later I am in "Laura's Room" (their front deck) bathed in sweat with my heart still at about 160 bpm. (And, yes, in Bobby's beer supply.) Annie does 8.8 miles! Highways! Monster hills! It was exhilarating and terrifying. The cars fear her more than she fears the cars. I don't care how courageous you thought Annie was, you have no idea until you have tried to keep up with her on this trek.”  While on this ride, it occurred to me that there was no place on the planet I would rather be for those 2 hours. Living in the moment is very important for those recovering from stroke. Don’t dwell too much in what you can’t do but what you can do don’t focus too much on what others can do; enjoy what you can do and keep pushing the envelope.   My recommendation is if you don’t have some form of exercise you can do, you need to get one and in a hurry.  In my opinion, it is life’s elixir, e. g. it cures anything that ails you. Or at a minimum takes your mind off of it.

I get it

For  years Bob has said when we travel he has to think about getting himself ready, getting me ready and getting us ready; Consequently, the hassle factor can almost negate our ability to travel.

This past weekend I traveled to Houston via bus and finally get what Bob has been saying.

Just to get out the door I had to make sure the house was "show ready", remember to ask my assistant to put my luggage in the back of my car before she left so the cab driver didn’t have to come in the house to get my bags, and ask cab driver to close the garage door. I carried something to the car to add to my bag and realized I had never opened the trunk of my car because I don’t drive. In the process I dropped my cane three times and panicked because I was on an incline. By the time I got in the cab, I was exhausted. I instantly reflected on Bob's comment and pondered all he has done for us in the past.

...I liked this process because now I get it and knowI can and want to can do it myself.

home alone

A few years ago I suggested to Bob that I try living on my own for several reasons, the primary being free Bob from being a caregiver fulltime.  (At that time I required quite a bit of assistance.) It was a difficult time because I was totally convinced I could live on my own.  My stubbornness was unwavering. Bob, as my caregiver knew I was not ready.    One fall in the shower and that would be the end.  Ultimately, we jointly concluded that I was not ready.

Fast forward 3 years I am now living on my own due to Bob’s new job requiring him to be out of town all week.  The purpose of this blog is to share the pros and cons of living alone and is it all I was hoping it would be. 

Pros:  I am totally independent this will help me in the future if I did have my own place or if I have to go live with a relative.

I love not being told what to do and figuring it out for myself. For example, I have to plan a lot more and coordinate with my assistants/drivers in a more efficient manner

I have to run our household, coordinate with all contractors, realtors, etc.

Keep the house “potential buyer ready” at all times

I have to coordinate my entertainment/social so I don’t allow myself to get bored

Work through possible issues without always relying on Bob.  For example today, I knew we were going to have a thunderstorm so I prepared in the event of a power outage. 

The bottom line is I typically rely on Bob for everything and that’s not fair to either of us.  This “forced “independence will only help me in the future.  The trick is when Bob is home not to fall back to old habits.

The cons include:

I miss my pal, Bob, during the week, particularly around the dinner hour because he is such a good companion. 

I watch too much TV/movies

When I do go out, My hair never looks as good as when Bob is here and gives me a hand with the styling.

It is always, always more fun when Bob is around.

I have to rely on my neighbors more than usual

I comfortably conclude that independent living exceeds my expectations.

report card

Today, I’m starting my third week of independence.  Bob started his new job in Houston three weeks ago, which leaves me home during the week--so far so good with some twists, (more on this later).  A typical day consists of reading the paper, Spanish class and homework, a two-hour bike ride, errands, de-cluttering the house in preparation for our move to Houston, and house chores to prepare for showings. Bob handled our move to Austin 100% on his own since I was traveling,   ’m determined to make up for this 13 years later.When I get bored I cook and  I went a little crazy preparing for bob's homecoming the first weekend. I made a quiche, blueberry corncakes, chocolate chip cookies, and meatloaf and mashed potatoes.  Several of these were challenging with one hand. This is one of the twists, before cooking I have to stop and think through all the steps to make sure I can handle with one hand.One afternoon I was in our dressing area and I dropped my cane.   When I tried to move, I couldn't and certain I would fall.   I now know t the meaning of apoplectic, i.e., I froze .  I was very shaky and just didn’t want to fall.  If I fell it would ruin the entire weekend.  I stood there frozen and my PT training kicked in; “shift your weight and take a step”.  I did this and it worked, but I had to talk myself through the entire process, which was scary. . Just like cooking I have challenges and I work through them.   

Those days and hours of PT are critical to the long-term rehabilitation of stroke survival. Six plus years later, lessons learned in the early days post stroke– surface time and time again.

“Get back on that trike!”

My last blog elicited concern from family and friends but don’t worry. For some reason, I was surprisingly calm during and after the event.  I guess it means I'm getting used to these things and the panic is gone. Twenty-four hours after my brake failing incident, I went on another ride (Bob gave me the necessary troubleshooting measures from afar).  During this ride three neighbors unsolicited, pulled over just to say hi and to introduce themselves.  It was pure joy.  The trike is so unusual looking that people are curious and want to know more.  One new neighbor whom I had not yet met pulled over to introduce herself and thank me for the cookies I had delivered the previous day.  Her young daughter leaned out of the window to tell me how much she liked the cookies, which were packed for her school lunch that day.  I was overwhelmed with glee.  I have to admit my trepidation due to concern over the brakes. Bob will return to Austin for the weekend and I’m planning to ask him to shadow me on my route to allay my family’s fears.  My goals are 30 miles per week to reduce the atrophy in my legs. My vanity has no bounds.

be careful out there

Bob started his new job in Houston on Monday so I rely on my neighbor to help me get on my trike in the evenings. On Monday, I set out for a 10-mile ride.    I stressed the brake system on a big hill that resulted in an issue later during my ride.   (While tackling a big hill, I was four gears away from the easiest or granny gear and had to rely on the brakes quite a bit).  While returning, I rode by a tennis court and my reflector light fell off.  I was going back to retrieve it and while turning around and going downhill, my brakes failed.  I had to circle the cars at the tennis court twice since I had no way to stop.  On the third go round, I ran off the road on the right and into a small bush to stop the trike.  The whole time I was circling I was yelling: “HELP.” A couple playing tennis helped me retrieve my light, turned me around, and fixed my brake.  When I relayed the story to Bob, he asked if I explained that I couldn’t walk, etc.  I find  it interesting that I’m reminded of the stroke every time I take a step, but when this happened it nevereven occurred to me to explain to this couple that I had a stroke and couldn’t turn the trike around on my own.

These challenges strengthen my resolve to continue to exercise and keep my mind alert.

Hidden in Plain Sight

I created a panic. It wasn’t intentional. The panic tested my support team

About 3 years ago I was less than subtle about what I wanted for Christmas – a very special pair of earrings that I had wanted forever.  If purchased, they would be my “go to” earrings for any occasion.  After several holidays passed, I gave up on the thought of ever owning them. But Bob came through on Christmas 2010 – beautiful earrings.

Fast-forward to 2012 and I lose one of the earrings over the Christmas holiday while staying with my parents. I looked everywhere; retraced every step for two months.  My father went to my cousins where we had lunch Christmas day and retraced my every move from getting out of the car to walking through her grass, etc. My sister in Kansas searched her car, I called the store where I tried on some clothes and asked them to search their dressing room. My parents tore apart the room where I stay. Everyone knew how special they were and were willing to participate in the search.  Bob’s initial comment understandably was “well that’s it for expensive jewelry.”

Finally, I had to do something I was so distraught over this loss.  I visited two jewelers to see if I could buy one earing or have an earring made to match. I hit a low moment after these visits because there was no good solution other than just buying a new pair, which was not an option.

And then. I found it – it was here all the time, interlocked with another earring.

Suddenly all that was wrong was right again.  It wasn’t about the earring; it was about the loss, the stroke, the left side neglect and remembering to look to the left where things are magically found.

…or things magically reappear.

reslution update

In January I resolved to stay out of my wheelchair as much as possible.  My report card after 36 days into 2013 is average at best, the first 10 days in January I stayed out of my wheelchair as planned. I had the soreness and fatigue to prove it.  Slowly I fell back into my old habits, but now I am back on track.  When I walk at home, I always try to have the cane up in the air to work towards weaning myself totally from the cane – another resolution. 

I was totally inspired by Senator Mark Kirk and his walk up the Capitol steps on January 3 after his stroke in 2012. His quote in the Washington Post says it best:   “I regarded my left leg as a lifeless appendage”. Mike kept insisting that it would bear weight.   The moment I realized that it would and that I could swing it from my hip and propel myself forward, was the breakthrough revelation of my rehabilitation. If I could just trust my left leg, my world would be  right side up again.  

Senator Kirk also said:  “I wanted to give up almost every day. I was indescribably fatigued. I wanted to sleep all the time, a common desire in stroke sufferers. But I was beginning to believe. I used the prospect of returning to work, of climbing up the steps of the Capitol and walking the 50 paces to the Senate floor, as motivation.”  I too have a left leg and arm that I don’t trust. I also have days of giving up. I can’t give up or sleep all day because Sgt Major Bob won’t let me.  My motivation is the confidence of my family and the future of running Bob’s sculpture gallery in Houston in a year. Never, never, never give up.

friends - the harsh reality and stroke

I remember reading years ago that when you have an illness, friends will stick with you for approximately six weeks.  The article said, friends will stick by your side and after about six weeks they simply want you to get better. My friends have stayed with me for six years.  There are multiple levels of “stick by”.  Some friends I know are always there if I need them.  Even my best friends I don’t call because sometimes it’s just easier to do something and not worry about the support they might need to provide me.  For example, going to a movie requires a bit of an effort.  They have to think about picking me up, helping me walk up a step, carrying food, etc. In the old days I could just meet them at the theatre.  Even friends who have had a stroke don’t call because we are at different levels in our recovery.  

Some have stopped calling because I cannot participate in the same activities such as my running friends.  When you lose something that bonded you in the first place, its natural this goes away. Since I no longer work it means I have no current work friends. My work was such a big part of my lifeso this is a huge void.  However, my former work friends have been wonderful about keeping up either through my blog, email, or lunches. My family members I count as friends and they are always there for me.  My father-in-law, whom I considered a friend, recently died.  The one positive, is his legacy lives on through my Bob, who is my best friend.  This is a” lose/win” for me.  What does all this mean?  Life is about constant reinvention and evolving with friends, much like the Scout Song:  “Make new friends, but keep the old, one is silver and the other’s gold.” 

Resolutions

They say greater than 90% of New Year resolutions made are not kept.  This is why many no longer make them.  I resisted until the last minute.  I finally decided on two, maybe three.  The first is stay out of my wheelchair all day, every day. I tend to rely on it too much and it becomes more of a habit than a necessity.  My second resolution is to improve my walking.  When I grocery shop. And walk behind the cart, my walking gait and speed is ideal.  I’m trying to emulate this on a regular basis.  These resolutions go hand-in-hand.  When I walk around the house, this entails walking with my cane up in the air so I can carry things.  The more I do this, the less I rely on my cane. My third resolution is to walk without the cane entirely by year-end. I really don’t need it and proved in therapy I can walk without it.  I just need the confidence and stamina to do this on a regular basis.

Today is day three of the New Year and so far I have not used the wheelchair as resolved.  I’ll report back regularly.  This is going to happen!