challenged

Nervous, positive, humbled, ready, needy -these are the words that come to mind during my first week of physical, speech and occupational therapy. The outpatient program at TIRR Memorial Hermann is called “challenge” and after one week I know it is aptly named.  We first worked on goals and then started the actual work.  It has been several years since I participated in organized therapy and realize that you can never have enough.  Goals were jointly identified for physical and speech therapy.

For physical therapy:

·        Improve walking speed

·        Improve gait endurance

·        Be able to transfer from floor to standing in the event of a fall.

For speech therapy:

·        improve attention to left visual field using therapies

·        Use memory strategies to improve recall

·        Reduce rate of speech; increase volume

I attend four times per week and generally 3-6 hours each time. 

After my first month, I will report back. I’m now wondering why I ever stopped therapy. It is probably because I thought I had progressed to where I no longer needed therapy; clearly this is not the case.  Bring on the “challenge.”

od friends are ike gold

This week I went to dinner with two friends from high school that I haven’t seen in a very long time.  What was unusual about the evening was all three of us are survivors, one from diabetes and a kidney transplant, one from uterine and breast cancer and me from a stroke--three soldier survivors.  Laughs ensued early because we observed every conversation these days begins with 20 minutes of health updates.   We had snacks and a cocktail at my house and then walked to a neighborhood restaurant for dinner.  Earlier in the week, I practiced the walk with my assistant.  I didn’t want to be a burden to my friends not accustomed to dealing with me. 

I looked up the common expression “Cloud 9” – it means you are having a heavenly experience, as if you were up on a special cloud. I commented to Bob later that evening that walking to a restaurant with friends, at night made me feel that I was on Cloud10.  This ability to walk is 100% attributed to the walker Bob found and purchased in April. It has augmented my life. My point is, find those tools that help you succeed.

friends

In the Sept 21, New York Times, David Brooks writes “Ancient writers from Aristotle to Cicero to Montaigne described friendship as the pre-eminent human institution. You can go without marriage, or justice, or honor, but friendship is indispensable to life. Each friendship, they continued, has positive social effects. Lovers face each other, but friends stand side-by-side, facing the world — often working on its behalf. Aristotle suggested that friendship is the cornerstone of society.”

I took a trip last weekend on my own that ties these thoughts.  My friends invited me for a weekend on the lake, which is great closure for the summer.  While at home in Houston, I spend a lot of time alone so being with my friends helps me remember how to have real conversations, share experiences, ideas, etc.

David Brooks also writes, “Friendship helps people make better judgments. “The reason it felt do good to be with my friends from Austin again is because they know me and bob very well.  They know when   I’m not being sincere and they make me think about areas for improvement.  I really enjoy getting updated on their lives and it makes me realize how in insular I can be because I focus so much on recovery.  For example one friend shared a recent health scare with her son.  I knew nothing about this and felt instantly selfish. 

Another interesting point he wrote that “Middle-aged people have particular problems nurturing friendships and building new ones. They are so busy with work and kids that friendship gets squeezed out.” I have been friends with these women for 30 + years and I’m so thankful they stuck with me.  I’m making new friends in Houston but it is difficult so I relate to this comment.

This trip personifies my ongoing sense of normal. When I am away, I don’t focus or really even think about the stroke.  I just “be”

This blog is a tribute to my friends who have stuck with me all these years through the good and the hard times. Thank you.

Its their turn

I landed in Singapore in 1983 at the age of 25. Bob dropped me at a hotel and took off for Hong Kong, Manila and Taipei. He was gone for two weeks and I had never been past Acapulco. Here I was in a strange city and I knew no one. I carved my path from there.

I'm having a lot of fun watching the next generation figure out their future. They have the next 25 years plus to discover who they are and what they're going to be. It’s pretty neat to see their choices. For example, my niece just got married and is starting her new life in Dallas; my nephew got married in a private ceremony and is living in Austin; another niece just moved to New York to live and start a business; two nieces are in Austin in graduate programs; nephews all over the U.S. starting their careers; one is a guitar performance artist. I find myself not wishing I was in my 20’sagain but musing about their life ahead and choices, hoping they find the happiness and fulfillment that I did.   Their paths motivate me to look at the opportunities ahead and consider my next moves.

taking inventory

No one ever asks me “What’s it like to be me?” Actually, I like talking about the stroke.  Once I asked my very good friend why her husband or brother (also my friends) never mentioned it to me.  She said they are uncomfortable and sad, and don’t know what to say.

So, I thought I could use this forum to answer the question. I’ll give sort of an inventory of my mind, and my body. Generally, I use this blog and have written many times that I prefer to focus on what I can do so for the first time I’m shifting gears and being totallyhonest.

The big picture is I don’t feel the left side of my body, it’s called hemiparesis.  The manifestation of this is that I never quite feel centered.  This manifests when I sleep and walk.  Think of sitting on a hree-legged stool 100% of the time.  You are never completely balanced.  Also, I cannot take a step without putting on my orthotic (Leg brace).  My left arm doesn’t move at all so I’ve learned to adapt to using my right hand for everything. I can’t write legibly because I used to be left-handed so I rely on my assistant or typing. Probably the biggest issue of the hemiparesis is my vision.  I have zero left side peripheral vision which means I can’t drive.  I’m easily startled when people approach me on the left. Only seeing the right side limits my ability to read quickly and type/text without errors. My vocal cords and intestines are impacted by the paralysis, meaning I can no longer sing, which was my passion.   

Regarding my mind, my world is slower--I think slower and move slower.  I think the most difficult aspect of the stroke is that I don’t work or contribute to our income.  Bob takes such good care of me and is committed to making every day happy. He has never once in eight years complained that I don’t earn a salary.   However, I was trained from early on that you make your own way and to be independent. I supplement my time with volunteer work, Spanish lessons, etc. Frankly, it’s not the same. I observe my friend’s achievements and left jealous. My mind thinks faster than I can perform so it is a conscious effort to slow everything down including talking.  The mistakes I consistently make frustrate me.

I accomplished my objective of being brutally honest.  The bottom line is I’m glad to still be here even with all these issues.   I thank Bob every day for saving my life.

You can get there from here

We have several reasons why we settled in the Houston neighborhood in that we did.  They include:  proximity to restaurants, bars, museums, parks, bicycle trails, metro station, etc. Basically places I can walk to. This is a picture I reflect upon occasionally to remind myself how far I’ve come.

 

This was taken seven years ago and I could not walk at this time. Three recent events are the impetus for this blog and they are all centered on walking:

1.       Walking with  my father when I visit him on the weekends

2.      Walking with Bob to our local bistro for a beer and a snack

3.      Walking with my mother-in-law to attend an IMAX film

This is a picture I prefer to focus on because of what it allows me to do now everything I can do now is 100% due to the support of Bob, my family and friends- Both financial and time

I prefer to look forward and while I know I still have lots of room for improvement. My focus now, if ever I think I can’t, I know I can. 

It's about time

These were my sister’s words when she learned I rode my trike or the first time since we moved to Houston months ago.   It’s not that easy.   To make this happen his morning Bob had to bring my trike over to the condo.  He pump up the tires. Walk it down the hallway, put in elevator and walk it outside the parking garage of the condo.  He also solicited help from a good friend to ride in front and guard against traffic while Bob was my wing man.  We rode through our neighborhood to Hermann Park and two loops around the 2 mile track. We encountered lots of joggers and walkers and up and down sidewalks.  In Austin I never dealt with any of this so the support needs are far greater. We rode about 6 miles total and at the end stopped at a neighborhood coffee shop.  While sitting there, I reflected that I r felt as normal as I did before my stroke at that moment.  It was a thrilling sensation.

Now I have completed my 5 self-imposed pillars to get to independence:

While Bob will have to ride next to me for the next few time, we are headed in the right direction.

not possible while in Austin

My steps towards independence include being able to take public transportation so I don’t have to rely on caregivers 100 percent to go somewhere. To that end, today we walked to the rail station using my new walker (it was about a 15-minute walk. We bought rail tickets for $1.25 and jumped on the train. The entry to the rail is a flat surface so the walker rolled right through the door, fortunately before the door closes. There is ample time to get through the door, but once on the train, there is an immediate jolt that almost knocked me down.  I have to either immediately sit down or hang onto something right away. A gentlemen already on the train gave me his seat both directions while riding. We rode the train for about ten minutes and 5 stops to downtown Houston. My goal was to find the closest pub or restaurant using public transportation for Bob and me. I met my goal; from out the front door of the condo and back the entire trip took less than an hour.  Breaking up the trip with draft beer in between seems like nirvana to me.

The next step is can I do this same thing without a caregiver walking next to me.  Always have to have a goal, right?

endings and beginnings

I have not written a blog in a while.  Frankly, I have not been motivated since my Mother died. However, just as life goes on after death and my life continued after my stroke, my blog will survive primarily to serve its original purpose – to help stroke survivors.  Since my last blog entry, I have surpassed eight years as a stroke survivor. Another milestone is three months as a Houstonian and Independent living.

Considering where I was 8 years ago I am proud of my accomplishments, yet I am frustrated about the progress that I still need to make. I’ve had so much support and good fortune that I don’t want to let anyone down.  My Mother continued to contribute everyday of her life and she remains an inspiration to keep fighting for recovery.  Moving to Houston provides the opportunity to look forward -- everything is new.

I now have the ability to walk to museums and use the public transportation system; I am making new friends and have new caregivers.  I’m able to participate in family events and make weekly visits to my father and sister. I have interesting and challenging volunteer work that is the closest thing to a real job. 

Now I need to focus on next steps with rehabilitation and volunteering.  Lots of walking is in order along with left arm movement. My goal is to parlay my volunteer work into a grant-funded paying position.   If you have any suggestions send them my way.

A tribute

My 93 year-old mother died last week.  My emotions would not allow me to orally pay tribute to her during her Vigil.  I decided to use this forum to quietly try and accomplish what I need to say.  It is a thank you note to my Mother.

Dear Mom,

Thank you for everything you did for me growing up

Specifically,

Thank you for teaching me how to bake; thank you for warning me not to eat cookie dough because it could give me worms.

Thank you for teaching me how to be a kind person, specifically if someone gives you food in a dish; never return the dish empty

Always, always handwrite thank you notes your penmanship was beautiful; thank you for teaching me to be neat

Thank you for teaching me grooming tips; specifically, don’t wear jeans or perfume in the summer.

I Thanks for cooking for us, it must really have taken a lot of work to plan meals, to go to the grocery store, to read labels and pick the best foods to keep our bodies healthy.

Thanks for helping me grow up Mom!

Thank you for teaching me to be organized, to do my homework, clean my room and to practice my piano.

Thank you for believing in me, encouraging me to do my best and to try new things love myself and I am proud of myself. I have confidence and I believe in myself because of you. Thank you for supporting my dreams and ideas, even when they seem far-fetched or silly to you. I need to make mistakes and have failures to grow, so thanks for being there when I’m down, and for helping me find my way back up.

Thanks for working so hard for so many years to support all my dreams and needs.  I will never forget watching you get ready for work at 10:30 each night, going to work until 7:00 the next morning and sleeping all day so you could be home when we returned from school.  You were eternally tired.  AS I write this, I wonder when you had fun or did something just for you.  In my 57 years of knowing you, I can’t think of one instance where you just focused on you.  That is astonishing.

Thank you for modeling how to be respectful, kind to others and patient with old or sick people, Even though I didn’t always listen to you, I did always heard you.  Even when there were six other kids around, you always took the time to listen to me.  I was the special person in the room at that moment.

Mom, thanks for driving me all over the town to friends, tryouts, activities, performances, games, concerts, auditions and practices,

Thanks for noticing when I helped around the house. With seven kids it was hard to single any one of us out but you did when it was important.

Tanks for teaching me life skills; you’re helping me learn how to become a happy and healthy adult one day. You’re giving me limits and structure but also space and confidence to step out toward independence.

My mothers, as all mothers, deserve to be thanked for their tireless, passionate, endless work as Moms. They don’t get sick days, personal days and we really don’t even get Mother’s Day off.

I love you. Thank you for loving me in all the ways that you did.

Love,  your child – Ann Margaret A.K.A number 6

game-change

About three weeks ago we received my new walker.  Prior to delivery, I positioned it as a “game-changer” for me in terms of walking. Where we live in Houston now is walking distance or minutes away from every major museum in Houston and Hermann Park.  With just my cane and by myself I am not able to walk to these places.  I tried but the unevenness of the sidewalks was a non-starter.  The proximity to all this culture and my immobility was eating away at me.  I commented to Bob that when I’m at the grocery store and pushing the shopping cart, my mobility is better.  Couldn’t we try and “mirror” this experience?  Bob was on it and found an “off-road” type walker, which is a game-changer. It has three big wheels off-road suspension, a brake for going down hills, a seat if get tired, and a basket for carrying stuff. It folds up for ease of traveling.  The walker allows me the freedom to walk to the museums that surround me.  I call her velvet  

Wave to me when you drive by, I will be walking.

Move Part two

I left behind in Austin a support structure that took six years to build, knowing once I was in Houston I would be starting over.  The support consisted of caregivers, drivers, doctors, an exercise routine, good friends (friends I’ve had for over 30 years), and neighbors. Basically I had a comfortable daily routine-- emphasis on comfortable.  I imploded the comfort level but can safely say that after almost a month my support structure is 75% rebuilt.  Let me explain.  I measured my move success on completion of six key activities including,:

1.       Completion of move into condo (boxes unpacked, able to find my stuff for cooking and dressing, etc.)

2.      Up and running Internet with a new email

3.      Resuming my Spanish lessons via SKYPE

4.      New caregivers hired to alieve Bob of driving responsibilities

5.      Able to shower again on my own

6.      Walk to nearby museums on my own

It took two weeks to get back on email, Internet and Spanish.

I have two caregivers, one woman and one man; both are college students in their 20’s. The caregivers both came from my Austin caregiver referrals.

Bob has installed a bench in the shower but it’s not 100% functional so I have not met this goal

Last Friday I attempted to walk to the Museum of Fine Arts, which is about a mile away.  It was clear due to the cracks in the sidewalk that walking by myself would be too difficult so I need to find another option. 

On a separate note, goal unrelated, I have engaged with old friends in Houston and whenever there is a family event, I’m here for it and I love that.  My mother-in-law is deeply engaged with the Arts in Houston and she invites me to tag along. I am now closer to my volunteer work with the East End Management District and this keeps me occupied in a way that feels like a job. 

I have not figured out how to exercise on my trike outside but we are working on this. 

I have not replaced my hairdresser aestitician, and my other high-maintenance needs.

I suppose if this is what we can accomplish in a month, I’m very optimistic about the future. 

Bottom line, I love being a Houstonian again. 

 I

our move part 1

We moved to Houston ten days ago and as most moves go, the transition was challenging.  We closed on our house in Austin in record time because the new owners asked to move up the date.  This meant we had to ask the owners of our new place in Houston to move out quicker than they were prepared to do. Bob masterfully solved this problem by purchasing all of their furniture so they didn’t have to hire movers. We arrived in Houston on a Saturday and were scheduled to move in the following Tuesday. For five days I was without Internet and email and 100% of our belongings were in a warehouse in Buda, Texas.   As we left Austin I remember thinking I was leaving the support system I built and would have to start a new one on my own. Thanks to my mother-in-law graciously inviting us into her home, the transition was easy.  On Monday night, we learned the movers were delayed due to icy conditions. I fell asleep asking Bob if we made the right decision and should we have just downsized but stayed in Austin. This move was absolutely necessary, because it was too difficult to maintain our house in Austin remotely and there was only so much I could do.  It affords me the opportunity to have the independence I crave.  I can walk to more places and more often.  I am closer to my volunteer work.   The old, old Mark Twain phrase comes to mind:  “I’m all for progress, it’s change I don’t like.” Here’s to both --- progress and change. Come visit

Change is Good

As I’m winding down our life in Austin after 15 years; one event has really stood out and got me thinking.  It was the sale of our dining room table. I kept thinking:  “If that dining room table could talk after 23 years in our possession what would it say”? I could write a short story with the answer.  It was a table made of cherry wood and given to us by Bob’s parents who owned it for 45 years. We refurbished it with beautiful long leaf pine. We had many family dinners in Houston and Austin; we ran businesses, read newspapers, held sales meetings, made lots of friends and even lost a friend. I transitioned from my wheel chair to the table and relearned how to eat a family dinner with everyone. We hashed through many issues before and after my stroke at that table. We held dinner parties; sat, ate and drank wine for hours with friends and family.   We had heated, interesting, intellectual discussions. Our table was a destination point in our home; it was a “healing center” (I did some of my arm rehab on the flat surface). How could we part with such a treasure?  It was time, since the style is incongruent with our new place in Houston.  I wanted to transfer the positive “karma” to someone else. When the new owners received our table, I received an immediate phone call stating how happy they were with the purchase – they bought it from a photo.  It is all about preparing for the future.

a new outlook

Gabrielle Gifford’s recently wrote an editorial in the New York Times on the anniversary of her shooting in Tucson.  She articulated some things that I have wanted to say for many months but didn’t quite know how:  Here is an excerpt from the article:

“I’ve spent the past three years learning how to talk again, how to walk again. I had to learn to sign my name with my left hand. It’s gritty, painful, frustrating work, every day. Rehab is endlessly repetitive. And it’s never easy, because once you’ve mastered some movement or action or word, no matter how small, you move on to the next. You never rest.  I asked myself, if simply completing a normal day requires so much work, how I would ever be able to fulfill a larger purpose.” 

I have been asking this question to myself a lot lately.  What is my larger purpose?

It’s a new year, so the gloves are coming off for this one. My stroke knocked me down, banged up my marriage, cost me friends and screwed up my work life. The stroke left me slightly estranged from my husband because he is also my primary caregiver.  I have had to relearn every aspect of my daily life because my left side is not responsive and I was left hand dominant. This is hard work! I want so badly to return to work.

2014 is good year for women in business. The first woman to head a U.S. Car company was named. The first woman to head the Federal Reserve has been named. What should I be doing to make my mark? What are my options?

Here is what Gabrielle suggests, again another excerpt:  “Every day, we must wake up resolved and determined. We’ll pay attention to the details; look for opportunities for progress, even when the pace is slow. “ Great advice. 

I watch a weekly news program Sunday mornings and a phrase made by a CEO from a Fortune 500 company stuck with me, “To be successful, fail fast, fail hard and fail often.”  Keep a sense of humor was the other piece of advice.

Thank you Gabrielle Gifford’s for your strength and inspiration.   Bring on 2014.

Resolve

During my trike rides I generally deliberate about many things.   For example I might practice my Spanish reflexive verbs.  Today, however, I mused for ten miles what it might be like to be “normal” again. I am not certain that “muse” is the correct word. If I could pick between the following:

1.       Restoring my left-peripheral vision so I could drive and work

2.      Using my left arm to do push-ups, pull-ups, write, etc.

3.      Having my left leg work without a prosthesis so I could wear dresses and regular shoes with heels, dance and generally show that I have legs. (What made me think of this was watching PitBull perform with backup dancers on TV last night.)

I came to the conclusion during my ride that above all, I want my vision back.  It is a tough call between this and being able to give Bob a two-armed hug again. Having said all this and in honor of today, I resolve to focus on things I can do. Tom and Bob have me “musing” on a trike ride across Texas. Happy New Year to all and here’s to musing on your resolutions for 2014.