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!