Guest post from Annie's sister Susan

Five and a half years ago if you would have told me I would be standing in Annie’s kitchen making a Christmas fruitcake under the watch full eye and supervision of Annie, I would have said no way.

But this past Saturday morning I was in Annie’s kitchen facing a beautiful Austin morning sunrise and cutting cherries in three long parallel slices for a fruit cake that Annie would be taking to a party in Dripping Springs Texas.

Annie had all of the ingredients out my job was to slice, measure, combine and pour in to the butter greased glass dish with Annie supervising every step.

I have observed when Annie is in her wheel chair, communication is always chaotic. I have to remind Annie to stay on one subject which is baking the fruitcake. The wheel chair gives Annie’s mind the chance to whirl around because she doesn’t have to focus on walking or standing.   And whirl around it does, a dozen different subjects were brought up.

If Annie is not in her wheel chair, she always is focused on her balance and making sure she will not fall. This makes me realize how unbelievable it is that she has accomplished so much in the past five and a half years since her stroke. If I had to think about every step I take I would never get anything done.

Bob corrected the oven setting from convection to regular, we put the fruit cake in for one hour and it came out perfecto!

It will be too late for you to make this for Christmas but the red cherries look so pretty it will work for Valentines Day. I hope you will make this fruitcake and with every bite think of Annie and remember the love and effort and devotion she puts forth every day in all that she accomplishes!

FRUIT CAKE RECIPE:

Set oven to 325 degrees

1 lb. candied cherries (sliced)

1 7oz. package coconut

½ cup diced dates

3 cups chopped pecans

1 tsp. vanilla

1 can sweetened condensed milk

¼ tsp. salt

¾ cup flour

Mix sliced cherries, coconut, dates and pecans in large bowl.

Mix salt and flour and sprinkle over fruit and nut mixture.

Stir well

Add vanilla and sweetened condensed milk

Mix well

Pack into greased 4 ½ x 2 ¾ loaf pan

Bake 1 hour at 325 degrees

Planning

Everything and I truly mean everything takes longer than I think it used to.  It requires me to be a better planner than b.s. (before stroke).We stroke survivors should be mindful of reducing annoyances our caregivers may have such as; always having to wait for us because we are slower. If we can focus on better planning I think it could really help our respective caregivers. Remember, our caregivers have a thankless job, one which they never wanted in the first place.

Think about this: Typically Bob has to get me ready, get himself ready and then get us both ready.  It can be chaotic, even comical at times. Here are a few examples of things Bob has to help me with:

·        Buttoning or zipping a blouse if it fastens in the back

·        Putting on backs of earrings

·        Styling my hair

·        Applying eyeliner

·        Tying my shoes

·        Basically any two hand function activity

I don’t want to get to the point that my poor planning means we stay home because the hassle factor supersedes the benefit of going out. 

·        I have to apply some cognitive exercises when planning outings. 

·        Maybe I don’t wear the earrings that require assistance;

·        Maybe, I wear my day-to-day tennis shoes

·        Perhaps I wear a simpler blouse.

Always assume you will need more time than you have

Here is a good example:  Last night we were going to a party and I simply didn’t start getting ready early enough.  Before Bob even showered and dressed he styled my hair, fastened my bra, tried to help me put on a shirt that was very complex, (too tight for me to pull over my head and required 50 snaps) adjusted my leg brace, tied my shoes.  By the time he got ready, I made us both late to the function.

A second example:  Yesterday Bob had a meeting at 3:00 and I asked him to drop me at a movie on the way that started at 3:30. We agreed to leave at 2:30 so at 2:21 I made my final attempts to get out the door such as bathroom, put coat on, get purse and walk to the car.  All this took longer than 9 minutes and Bob was late for his meeting.  I guess my key point is the planning is crucial to maintain our caregiver’s sanity. 

Juxtaposition

What performance draws a 2000 person audience vs. a 5 person audience?

What performer has a 10 piece orchestra vs. a 50 piece orchestra?

Who is a 79 year old diva vs. a 29 year old diva?

What costs $58 per ticket vs. $22 per ticket?

What performance is 2 hours late and which starts on time?

Which diva has size 40 double D’s vs. size 36D’s?

In each case the higher number correlates to Aretha Franklin and her concert I attended last Tuesday. The lower number correlates to the  Don Giovanni opera live in HD at the Met a simulcast I attended last Wednesday. While sitting at the opera I couldn’t stop focusing on the juxtaposition between the 2 performances. They were equally entertaining while being so different musically. I attended both performances by myself and this gives me strength to do things outside my comfort zone.

Oh how I wish I could drive! I would go to so many more.

I ask myself why, in addition to loving all music, did I love these performances? Because it provided an escape. In a dark room, surrounded by music, all things stroke fade away.

"A fool born every day and 2 to take 'em"

I have a daily job search regimen.  I subscribe to all the Internet sites such as Monser.com, Jobungo hire.com, etc.  I review the opportunities sent to me from these sites daily.  In addition I work with DARs (Department and Rehabilitative Services) and they are no also now sending me opportunities via email.

About a month ago I received a text from an unknown source asking for mystery shoppers and you can earn $50 an hour. I know $50 isn’t much and since I no longer wear regular shoes, I have no shoe budget or expense. I do, however, still have a clothing fetish.  I responded to the number in the text and basically they want you to shop for items they pick and subsequently fill out paperwork about your experience. It is an effort to improve the customer experience. Every time you do this you make $50 .So you see, you can make as much as you are willing to devote the time. They of course, ask for your credit card to enroll and charge $2.95.  Then they send you a series of emails to help you get started. I think I better fast forward to the end of this venture because once I mentioned the credit card, I can almost hear the gasps through the modem lines. Before I looked at the first product they wanted me to evaluate, I searched the Internet for mystery shoppers. The first entry discussed what a scam it was. Evidently the individual shopped, filled out the paperwork, etc. but could never get paid. They did this repeatedly and very frustrated. This on top of the fact that once a mystery shopper “member “they charge your credit card $49,00 per month  Obviously the math doesn’t work.  This monthly coupled with having to pay a driver an hourly rate to take me to do the shopping. Thankfully, American Express reversed all charges and has a 7 year block on this vendor for any future purchases.

Since the stroke I dabbled with selling Arbonne, listened to the prepaid legal credit cards pitch. Just last week listened to another MLM pitch. About Japanese wellness products.

I hope you walk away with two themes:   I want to and will work again one day.  I will wait for the right opportunity and not do anything stupid. 

The leads from DARS ARE administrative/clerical in nature but if I could get my foot in the door with something lower level I’m all for it.

On being left behind

When I worked I’d travel and spend a lot of time in the office. Bob and I weren’t constantly together. We had stuff we needed to do and we did it. Now Bob has stuff he needs to do and he does it. Sometimes I get left behind. I’m totally ok with this. We sometimes have to break our co-dependence. As my sister Marty said we are like an old retired couple, it just happened a lot earlier than planned.  I secretly revel in my independence.  I have my routine, my friends and my connections via the web. I reach out daily to friends and colleagues looking for work or just checking in. I would love to have gone on this latest trip with Bob but he didn’t take me for a several reasons. First, he felt the urge to drive across the country instead of fly and that would be too hard for me – maybe, maybe not. Second, he didn’t know what he was getting into on the handicap side. Third, I would slow him down.  We had no way of knowing how much i would slow him down but to extend a 1300 mile trip was not an option.  I believe I can do these things. Yes, I’m a little slower. Yes, I need some support. But no, I don’t like being left out.  I think it is more that I want the option of being asked than really wanting to sit in cargo van for 2 days. My assistant Katherine and I spent last week prepping the van for Bob’s trip. We had a blast making sure he had the perfect cooler that fit between the seats, and was easily accessible, the perfect trail mix, beef and turkey jerky, waters, and P.B. and J’s. (Translation:  peanut butter and jelly sandwiches). 

I’ve always been a curious person. I want to see and experience more of what life has to offer. I love being in this world and all it brings. I am confident that Bob will document the trip so well that it will be the equivalent of having been there. Still, I would like to have had the option to say “no thanks” you go.

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Two Events

The confluences of two events this week form today’s blog.  They are:

1.      An award winning documentary, Luckey, about a Connecticut architect, Tom Luckey who is paralyzed when he falls out of a window he designed.  The documentary explores how a crisis impacts your family and quality of life. 

2.      A senior student at the University of Texas studying communication’s disorders interviewed me this week fulfill a course project:  interview one person with a speech/language difference, or disorder that affects their communication in some way. The student asked me quite a few questions about my family’s involvement and how did they react and what are some of the biggest misconceptions about being a stroke survivor?

Today I will focus on Tom Lackey’s experience and how I relate to his experience and some of his messages.   The accident changed his relationship with his wife and son and not necessarily in a good way.

In my case the family relationship was impacted by this crisis in a positive way.  Pure and simple, it brought us all closer together.  I believe my incident also changed the relationship with my family but in a good way.  Tom Luckey explores these areas in the film:

-         He says:  “it is very hard to grasp we have a new adventure; we are on a new life’s adventure.”  “I have to let go of my old life.”

-        “How do I get used to who I am now?”

-        “Who I was gets more and more distant as time goes on.”

A while ago, my sister-in-law, Allison, mentioned I should blog about how I feel?  I couldn’t address this until now because I didn’t know how. Tom’s thoughts above helped me articulate how I feel.     

It has been hard to grasp that this is our new adventure and our “new normal. “When I do explore who I was and who I am, I do it in the context of family. The part that I still question is who am I becoming?

I was and am and hope to always be a:

·        Friend

·        Partner/spouse

·        Daughter

·        Sister

·        Daughter-in-law

·        Sister-in-law

·        Aunt

The only thing missing is being an employee, which I hope to become again someday.

I used to think it was important to hold on to whom I was but now I just don’t think it matters, I/We have to make new memories.

My left arm

I used to be left-handed and am no longer. It shows clearly in my handwriting. Prior to my stroke I was what is called “left-dominant”. The reason this blog is called “stroke survivor” is because I made it through the complications of a massive stroke and every day I have to learn how to manage with a left arm that no longer responds. I could go on and on about the things I will never be able to so again like ride a bicycle outside, swim using both arms, snow ski, and type 120 words a minute. I can no longer chase “personal best” sports activities – something my husband and I enjoyed. If you are curious, tie your dominant hand to your belt and try it yourself. You can see how so many things get harder!  But I’d rather focus on the things that I’m doing to try and make it work again. Remember the mantra:  Focus on the things you can do.

For some reason, my affected arm and hand hangs straight down. Many stroke patients have to be concerned about the bad arm curling up, and the hand clenching, which is why many people wear a hand brace. Perhaps because I exercise the arm the muscles haven’t atrophied. I don’t know. Mine does look different and the weight pulls my shoulder down. I am able to dress myself pretty easily if the fabric stretches since the arm doesn’t fight me. Today is not about addressing my physical appearance with a limp left arm or how I look in clothes, etc.  That’s a topic to address after I have gone shopping.  What I am addressing is the exercises I do to try and keep some muscle tone in the arm, and improve range of motion in the affected shoulder.  Here is what I do:

Arm pulleys that at stretch my left arm above my head or as high as I can go.  I have to wrap my left arm in a sling and tighten it down before I can raise it with right arm. 

Put 5 lbs. of weights in my left hand and using my right arm, curl my left forearm up, keeping the elbow braced between my waist and my chair to protect that elbow joint.  I wouldn’t feel the arm if I hurt it, so I have to pay close attention.

I also have to keep my right side strong, and I use it to help my left.  I have to be able to do these exercises without assistance, so that I’m not depending on my husband or a caregiver to assist me.

At the end of the day I realize my arm probably won’t ever work like it used to. Everyday I try and make it better.

Century Toil

Last Sunday, my good friend and brother-in-law Doug rode 100 miles on his bike in the rain. So when I set out to swim that afternoon I set a goal of 100 lengths in his honor. 

I love goals and a challenge and grateful to Doug for providing both.

Bob left home and I got the house

Growing up I had a lot of supervision through my parents and 6 siblings.  Pre stroke I was pretty much on my own.  Post stroke I required supervision again.  I’m using the Webster’s definition of supervision as “the process of critical watching and directing of activities or a course of action”. This comes primarily from Bob, friends, personal assistants and mine and Bob’s family. Please don’t misunderstand I appreciate the supervision and attention that comes with it; However, when I’m on my own I love doing whatever I want, when I want. To that end,  the first thing I did when Bob left for the Middle East on Monday was decide to have a party a week later with 6 friends centered around the Emmy Awards, with a 60’s theme. Thanks to Bob and his contract work, I am able to afford to host such an event.

I had a lot of fun during  the week working on my cognitive with the planning the detail, menu decorations, costumes etc., combined the party details with running the household such as making sure pool level is good, clean skimmers, water plants, and managing the yard guy picking up limbs around the yard that could be a fire hazard. 

The most challenging for me is coordinating the staging of the food preparation. Fortunately, I was able to solicit the advice of several family members.  On Friday, I called my  sister-in-law, Karen Matocha, to ask her how far in advance of the party could I make the carrot cake.  She said I could make it that day which as a relief because it takes several hours to make. There is no way on this planet I can make the carrot cake on my own because it calls for 2 cups of grated carrots meaning the carrots had to be peeled first.  To my knowledge, a one-handed peeler does not exist – but I am looking.  The recipe does not allow any margin for error so I had to have a short “pow-wow” with my assistant before we started baking.   She tends to read several steps in advance and want to do things very quickly so we agreed that I would read line-by-line and we would methodically bake the cake.  She was a good sport about it.  The end result was perfection if the reaction at the party is my gauge.  Another area I needed help was how to stage the making, rising and baking of the biscuits.  Laura Bacon is my go-to- expert on all things biscuits. The goal was to have the aroma of biscuits in the air when guests arrive.

Saturday night before the party, I emailed my friends asking if we should call it off.  I felt weird about hosting a party because my friend’s father-in-law died and the Bastrop fires with hundreds of stranded people. I just needed another opinion to help me deal with my mixed emotions.  The vote was a resounding “go forward”.   

The party was fun, several people came in costumes and we laughed into the night.

Of course I can do this when Bob is home but it is so much more fun when I can do it myself and make it all happen.

It’s the little things

Activities that I will describe below make me realize #1 how lucky I am to be alive and #2, sometimes the  simplest little things have the biggest impact.   On Tuesday morning, Bob surprised me with a breakfast stop at a local taco stand.  He knows my favorite thing in the world is to go out to breakfast and through a mutual friend recently discovered a taco shack about 3 miles from home.  It was a beautiful morning, the first with the cool front and the first non-triple digit degree day in 79 days!  We looked at a friend’s house she is trying to buy and then taco stand a block away.  It is only outdoor seating and we ordered migas tacos.  They are fresh, hot, grilled and crispy.  Absolutely scrumptious!  And we came home to Orioles and Road Runners working the trees.

We ate among local residents also enjoying this first cool morning.  We came home and both in such good moods. This is an exceptional taco stand.

As I look back to the goals of the blog to assist stroke survivors in their recovery, I ask myself, how could this blog possibly help? Try to do one small thing that brings you joy a week.  The more spontaneous, the better. Example could include:

Anticipate one thing each day survivor needs without having to ask. Whether it is applying lotion where I can no longer reach; replacing dental floss element, putting cream in my coffee, a simple acknowledgement of the effort each day takes…

This is as much a message for the caregiver as the survivor.  In fact, perhaps as stroke survivors we should aspire and conduct a spontaneous, joyful act for our respective caregivers once a week.

Example for caregiver is: Tell your caregiver to take a “me” day, acknowledge their effort with a “thank you” – it really is the little things that make life a pleasure. 

Therapy - It never ends…

Prior to my stroke, I did some form of exercise 4-5 times a week.  The reasons then were to stay fit, look good in clothes and a bathing suit, stay healthy, try to stave off osteoporosis and almost eat whatever I wanted. My routine consisted of running or some form of aerobic exercise, cycling, weight training and lots and lots and lots of ab work.  Although my routine changed after my stroke, no longer able to run, cycle or weight train, I have to do some form of therapy 4 – 5 times a week.  If I don’t exercise it is a setback for me.  If you are a stroke survivor, I strongly recommend you have a therapy routine.

This blog is to discuss here is where I was, here is what I did and here is where I am today as a result of my routine and the help of Bob, my physical therapist, Programs with a Purpose in Kansas City, and my family, and friends.

Here is where I was:

After 7 months in the hospital and first day at home I was wheelchair bound. I could not stand, walk, sit up straight, eat without difficulty, dress myself, bathe or groom. Any motion was painful. Bob, rightly so, limited the pain meds. One of the more frustrating things was I couldn’t straighten my legs so Bob spent 20 minutes every morning and 20 minutes every evening just straightening my legs.  He did this for 6 months.  Every trip to the bathroom and getting in and out of bed required assistance.  I was in therapist’s vernacular “maximum assist “. Here is what got me to “minimum assist”. 

I was going to get out of this thing. Rules were “if we have to take the chair we are not going”.

My introduction to physical therapy post stroke was at TIRR rehab hospital in Houston. The therapists followed their curriculum. I was hoping to walk out of TIRR but this did not happen.  It wasn’t until I hired a physical therapist in Austin with a background in Pilates that I started seeing major results.

The home therapy focused on getting me walking. My caregiver/spouse and physical therapist had one goal, i.e. get me walking as soon as possible. Just standing would have been a feat since every trip to the bathroom and getting in and out of bed required assistance. Bob spent hours trying to get me to stand in our living room. Like any husband and wife instructional activity, I was stubborn and unwilling to listen, Bob thank goodness, was unwilling to give up.

I supplemented the physical therapy with programs I heard about through others.  One example is Programs with a Purpose in Kansas City.  After my stroke, my sister-in-law, Elizabeth, started volunteering at a stroke clinic in Kansas City http://www.programswithapurpose.com/dev/ the program run by Tracy Netherton, has served as a therapy reinforcement program.  In my case, I will always need some form of physical therapy.   I have found there are many different types of therapy and it is good to consider there is more than one way.  Tracy’s clinic for example has a fit and balance room that simulates environments outside my comfort zone like stepping up on curbs, walking over rough terrain such as cobblestones, walking on uneven sidewalks, etc.

My daily routine consists of

- 20-30 minutes on my recumbent bike

-Squats at ballet bar

-Arm pulley to exercise my left arm

-Left arm weight lifting 10 minutes of ab work

All the above and the relentless concern of a setback keep me motivated to maintain my current minimum assist status.  This status allows me to travel across the country independently, go to movies, shop, grocery store, etc. by myself.

Priorities

Before the stroke and when I had a career my priorities were:  health, family, remuneration and responsibility.  Post stroke, I “blew up” the health piece, was forced to retire but still have priorities.  They are: family, fitness, fun, and financial contributions.

The family priority hit a pinnacle this week with some key activities and exemplified why it is so important to me.

On Monday my sister, Susie, flew to Austin from Las Vegas with her 21 yr. old son John.  We planned 2 weeks ago to meet at the airport, drive to Houston and spend the night with my parents. I was particularly excited because I had not seen my nephew,   John for many years and he is beginning his 4^th year at Cal Poly. Bob dropped me at the airport and when we pulled up, Susie was in a rental car.  Bob commented “there are 4 people in her car what’s going on?”

Unbeknownst to me, two of my sister Theresa’s children, Angela (18) and Joey (14), flew from Vermont that morning to meet Susie’s plane. Apparently, Theresa and Susie began planning this rendezvous’ four days prior to their arrival.  Needless to say I was shocked when Angela and Joey popped out of the car.  I can’t remember when I felt this elated before.  We drove to Houston, shocked my parents. It’s wise not to give my Mother too much notice for these things to eliminate stress on what meals to prepare and where will everyone sleep.  We determined it had been ~7 years since my parents and John were together John was so engaging with them and he indicated he would like to come for more frequent visits. 

We returned to Austin Wednesday morning, made the obligatory stop at Rudy’s barbeque for lunch, spent the rest of the afternoon at Barton Springs.  We had Mexican food for dinner where my brother John’s son Vincent (21) joined us.   The highlight at the dinner was observing Joey and his art of conversation with his cousin 7 years his senior.  He was “holding court” at his end of the table and I was in awe.

Thursday morning, Susie took everyone home to Vegas with her where she will show them all the tourist attractions.

The conclusion is at the end of the 36 hours with my family, I can with 100% confidence say there was no place else or anything I would have rather been doing. I’m so glad to be able to still do these things that mean so much to me. My nieces and nephews will be moving on to their adult lives and these visits will fade as their responsibilities grow. It is a wonderful time in life.

I believe I combined 2 priorities this week:  family and fun my next blog will cover other priorities.

to adapt or not to adapt

Last time I wrote about living in a one-armed world and adapting.  Sometimes I’m learning I simply cannot adapt and have to ask for help.  Such was the case week ago when I wanted to try a new recipe:  carrot soup with lemon and ginger courtesy of my sister-in-law, Karen Matocha. The recipe called for 4 lbs. of grated carrots.  To my knowledge a grater designed for a one-handed person does not yet exist so I solicited the help of my husband, Bob. He graciously agreed to help and we made this delicious soup together.

This is clearly a case where I think I’m happier that adaptation tools don’t exist because as with most things, Bob simply makes it more fun.   

Another activity I cannot handle by myself is swimming. Last year Bob built a railing so I can walk down to the pool from our patio but when it comes to getting in the pool, here are the steps:  I sit in a chair Bob lowers me from the chair to the edge of the pool.  One-by-one he lowers me onto each step at the third step I can take over and swim laps.  I generally swim laps for about 30 minutes or until “pruning” sets in, whichever comes first.   Getting out is trickier because Bob has to lift me from the edge back to the chair and it requires me to stand putting all my weight on my right foot while he lifts me to the chair.  I have not mastered this step and currently failing at it because the way I’m doing it puts too much weight on Bobs back and if I not careful I will put him in traction.  I wish I could adequately describe the sensation of swimming.  I feel it works on my balance, ability to stand up straight, and works both legs while kicking in a way that my stationary bike cannot.  Even though I don’t feel my left side, it is working it in a way I cannot do with any other exercise. I need to give my friend Edie a callout here.  If it wasn’t for her persistence every weekend last summer to get me in the pool, I would not be able to swim by myself.  Thank you Edie!

Living in a world where you only have the use of one arm

Even though it is no picnic living with a stroke, it is helpful that products have been designed to allow me to work around my disability of only having the use of my right arm.

I make the mistake of forgetting about my left arm and my three visits to the NIH brought this to light. I need to do better and focus on my left side or it will never come back.  More later on what I plan to do about this.

Please allow me to share a few tools given my goal of the blog is to shortcut steps for other stroke survivors.

THE FIRST amazing tool that allowed me to maintain a passion is the Amazon Kindle It took two years after the stroke to discover the joy of reading again and it was 100% thanks to the Kindle. I now read the New York Times daily, the New Yorker magazine weekly and probably 3 -4 books a month.

You will recall I have no left-side peripheral vision; it’s called left-side neglect. While in the hospital and in my speech cognitive sessions, the therapist would draw a fat red line on the left with a magic marker to remind me to scan to the left when reading.  You can imagine that drawing a red line on each page of a thick book or document is a non-starter.  The Kindle reading space is 6” so I can pretty much see the whole page without turning my head.  Another advantage with the Kindle is during page turning, I can use my right thumb vs. having to put the book down on my lap and turn the page.  Reading is now much faster.

The two additional product categories that make living in a one-armed world tolerable are cooking products and grooming products:

Cooking essentials are:

-One-Touch can opener and One Touch jar opener (both can be purchased at Walgreens or Target)

-Immobile cutting board and electric knife

My 2010 Christmas present from Bob was candy apple red Kitchen Aide stand mixer this is a game-changer for my life in the kitchen and expanded my recipe repertoire considerably.

On the grooming side, because unfortunately, I didn’t lose my vanity from the stroke--the style of my hair is always #1 priority.  When Bob is around and has the time he does an amazing job with styling.  Just ask my girlfriends.  When he is away, I need a brush and hair dryer but what to do with only one usable hand.  We bought a tripod for the hair dryer.

I know there are other products that would enhance my life.

The last category is exercise and rehab tools for my disability but I will save this information for part 2.

My dream design product that I am waiting for is a pair of shoes or boots that I can fit over my leg brace that are not tennis shoes. Again with the vanity – sorry.

Top things that suck about having a stroke

While in Calistoga, My friend Sandra the writer and I spoke about my blog and potential future topics to blog about.  She said and I agree:  “People like lists.” So, this is the genesis of this blog.  We will likely do the same on the caregiver side in the future.

Other possible lists will include:

·        Top emotional changes you will experience

·        Top threats to marriage

·        Top things to do to stay in shape

·        Top things you can do cognitively

Here are top things (5 so far) that suck about living with a stroke and what I can do about it.  (In priority order)

1.      Not being able to drive:

For 32 years I could jump in a car and go wherever I wanted, whenever I wanted.  I have something called left-side neglect which means I have zero peripheral vision on my left side.  Driving would be lethal for me and for anyone in the vicinity of me.

To have this freedom taken away is indescribable. It is a jolt to have this taken away.   I cannot run a last minute errand. If I’m cooking and forgot an ingredient, I generally have to abandon the effort.  Instant example: My friends just called from Barton Springs. Had I been able to drive I’d have been out the door.

Bob is totally patient about helping me to learn again.  He will let me drive on short trips to the store if it is early and no traffic, while I’m driving; he generally has one hand ready to grab the wheel and one ready to grab the brake.  We made a deal, if I could make 10 trips with zero errors, perhaps we could venture away from these short trips.  I have not been successful, nor have we really practiced in months.  It tends to get to the bottom of the priority stack.  I’m ok with this because it is absolutely no fun for Bob.   So I counter this by having access to 4 -5 driving assistants during the week.

2.   Not having a job and earning an income. I started working at 15 and had a job even before I graduated from college.  I love to work and always felt satisfied that contributed to our household income. This is gone.  My sense of self-worth is low. My father taught all six of his daughters to always be independent as you may be on your own. So be sure and earn as if that is the case. Bob works hard to keep me in the lifestyle I am accustomed. This leads to guilt. He put his life on hold for the first 3 of my 5-yr. rehab plan to stay home and take care of me.  When I first came home. Bob literally could not leave me alone for 5 minutes.  It wasn’t until relearning how to walk, eat, cook, get in and out of bed etc. It took about a year for Bob to be able to leave and run errands. 

Thanks to my sister, Theresa, I became involved with D.A.R.S. which stands for Department and Rehabilitative Services.  DARS’ role is to help disabled people get back in the work force.  Over the last 3 years through DARS funded the following activities:

-     Administered a $6,000 neuro/psych test to get a baseline of my post-stroke cognitive ability. The outcome of the test leads to a list of recommended activities to address your deficits. I have been conducting the following activities since the test Also funded by DARS:

-     Attended  a 2-day  skills workshop

-     Attended 3 semesters at UT speech and hearing to address my cognitive deficits such as:

o   Vocal prosody

o   Left-side neglect

o   Short-term memory

o   Spatial skills limitations

As you can see, I had a lot to work on before I could go back to work.  Through UT Speech and Hearing, I worked 2 volunteer jobs during the semester sessions as well as participating in the local Toastmasters club, I am addressing my deficits.  I still have a long way to go before I can fully reenter the work force so for now I consult on marketing projects.  It works for me since I cannot drive.  Remember the mantra:  revel in the things you can do. 

Here is the rest of the list but since this is getting too long, I will address these areas in a subsequent blog.

3.       The lack of intimacy in my marriage:

4.       Not being able to wear regular shoes or high heels:

5.       Always having to rely on others:

NIH follow-up

You may recall a “manic Monday earlier post, this week it was “wacky Wednesday”

Let me explain, I traveled to Baltimore on Tuesday to complete a follow-up MRI for the NIH clinical trial I am participating in.

I woke early Wednesday to take advantage of the hotel’s free breakfast and opted for Total cereal, you know, in one of those self-contained packages where you just add milk. I did this and almost immediately spilled it on my pant leg and floor.  The table was about 15” round and on it was my spoon, newspaper and the cereal.  A very nice woman immediately came to my rescue and we replaced the cereal, again I poured the milk and within 2 minutes did the same thing—milk all over me.  I felt like a 2year old and smelled like an 8-month old.  The same kind woman helped me and said “go get some more breakfast, sit down, relax and read your paper.”  I said “no, I’m just going to eat a banana in my room”.  I grabbed the banana and off I went.  First things first - wipe the milk from my pants. When I got to my room, the phone rang and it was the front desk stating they were going to deliver some cereal to me.  I guess the woman from the breakfast room was worried that I didn’t get enough breakfast.  I declined.   

By now, it was time to get to the NIH for my MRI.  I took the courtesy car and arrived at 9:00 for my 9:00 appointment.  I walked as fast as I could and on the way the head guy called asking where I was and was happy to hear I was in the building. 

Once in the MRI machine, they told me repeatedly not to move for 50 minutes.  “Do not go to sleep, because often if you sleep, you twitch, remember to keep your eyes open, they inserted the ear plugs, secure your head in place and then they said go.

I tried as hard as I could to not move because I knew if I did, they would have to repeat the tests.  At the end, he said I moved a little at the beginning. They were not concerned.

Now it was time to catch the plane back to Austin with a stop in Dallas My connection was so tight that before landing had to ask the girl next to me to grab my red bag and carry it outside the plane and the man across from me to grab my cane.  I am in awe of the kindness people show and their immediate willingness to help I also did not have time to make a bathroom stop.  When I boarded the plane, I explained my situation to the flight attendant and she said you can go right now before you get to your seat which I did.  When I came out of the bathroom, a 3-yearold darling girl was waiting.  She had a pink glittery cowboy hat in her hand I told her,   I love your hat.”  She said, “I won it in a bowling tournament.”  I said, “You did, what was your score?”  She did not understand my question and by this time everyone is boarding or had already boarded so I had to curtail the questions I made the connection barely but on the way to Austin my Kindle ran out of battery life.  For the Bacon family members, there is nothing worse than being without reading material.  Fortunately it was only for 15 minutes.

Hectic day calamities averted and I never cried over spilled milk.

guest post from my friend, Sandra Miller

The day my friend  T. called me to tell me about Annie’s stroke, I was sitting on my front step in the California sunshine, lacing up my running shoes.   I will always remember the conversation.  T. described the horror of Annie’s bandaged head after the  craniotomy “She hardly looks human,” she choked.  The words were like a cold fistful of jelly in the face, and for a long time there was no sound between us but our shared sobbing.  There are hundreds if not thousands of people all over  the world who have a similar story of the fear of losing her, and the hole it created was like something in space, black, infinite, swallowing all light as it collapsed in on itself. 

There are all kinds of things you think when something so cataclysmic happens to someone you love.  I’ll save that for another guest post, maybe.  For now, I’m going to fast forward five years: my husband and I are planning a house party for the July 4^th weekend,  in the wine country.  We’re not much good at planning (to put it mildly) so the evite that was meant to go out no later than March 1^st arrived in the email boxes of friends and family in mid-June.   I was delighted that Annie said yes and disappointed that her  husband wouldn’t join. Right away Bob sent me a list of all the things Annie would need help with.  I was unperturbed – my theory was, Annie is a big girl. She knows what she needs, and she knows how to ask for it, so we’d be fine.

And we were. The most difficult part was before the trip. Annie contacted me daily – sometimes multiply – for details about the house and grounds.  Understandably, she wanted to know exactly what she was getting herself into.  My long work day, plus the two hour time difference, made it difficult for us to connect voice to voice. We exchanged a lot of messages with very little information – a telecomedy of errors, if you will.  Annie got insistent, I got crabby, she got snippy, I got pissy , but we got it planned, and on July 2^nd Annie rolled up to the house with my friends K. and M, drenched in sweat (M couldn’t’ figure out how to work it the convertible top OR the air conditioner) but none the worse for worry.

I did not give anyone any details of Annie’s condition other than “My friend Annie is flying in from Austin. She had a stroke and it sucks that she has to walk with a cane now – she’ll need some help navigating the grass.”  I figured it was up to Annie to decide what and how much to say about the stroke.  In her blog Annie  marveled at how normally everyone treated her; it could be because everyone in San Francisco is a crunchy-liberal compassionate commie, but I think it’s because Annie is all in all pretty easy to like. The stroke has not changed everything, after all.

In his blog, Bob (Annie’s caregiver husband) mentions that in the past, he avoided handicapped people, didn’t want to open a dialogue with them, afraid where it might lead.  I confess I had the same attitude, more or less, until I moved to San Francisco. I joined a writing group, and the first night we met, there was a blind girl , K., sitting  in the corner with a guide dog at her feet. She was not only blind, but, I later found, suffered from Marfan’s Syndrome. I had never seen anyone so frail-looking.  During the session she read one of her stories, and though I deeply admired her writing, I didn’t really speak to her.   After a few sessions the host turned to me one night and said “Can you take K home?”   

“I don’t think so,” I said to him nervously, as she cocked her head.  “I have a Miata, there isn’t much room.” 

“We can manage,” K. told me in a straightforward, no-nonsense way , and I blushed with embarrassment at my passive attempt to evade  her or take any responsibility for her.  She folded her long frame into the Miata bucket seat, her dog curled neatly at her feet, and on the ride home I found out all kinds of things: how she lost her mom as a teenager, her Ivy League  degree, her hyper-literacy and her  crazy acerbic wit.  Also her love of fashion.   She was so much more than her blindness, or the frailties of her body.  I’m glad I was pushed  into overcoming my nervous aversion to interacting with someone who is handicapped.  Apparently, I’d been missing out on knowing some pretty cool individuals.

When Annie asked me, “was it harder or easier than Bob and I led you to believe?”  I had to think about that for a bit.  It wasn’t ‘hard’ per se to assist Annie  with her physical needs, i.e. she needs help in the shower – it’s a fact, and the best way to deal with such facts, I’ve found is to just deal with them.   Keeping an eye out to make sure she had someone on hand to help her to the pool, across the yard, etc  was just one of those things we have to do now. 

The thought haunts me  that it could just as easily be me in that wheelchair with that cane, recovering from a stroke – it’s a thought that has a way of softening the edges of the tasks that accompany hanging out with Annie.

What I found hardest to deal with was the emotional impact of seeing her day-to-day, minute-by-minute reality.  Watching her do everything with one hand,  plotting every step –  I am acutely aware that ‘helping out’ isn’t the same as living with it as my reality.   It hurt my heart to hear Annie’s constant apologizing and thanking those who are helping her.  Thank you thank you thank you, she’d say, almost chant, when R. waked her from the pool to the house. It made me mad  - at the stroke, at  the effing unfairness of it all. 

Sorry- sorry! she’d repeat when L. and I lifted her into the pool.  Exasperated, L said to her, not unkindly “Can we all just agree that you’re glad for the help and  we’re happy to help you, and stop with the apologizing already!”  

“Ok,”  Annie said, to her credit sounding only a little apologetic. 

I hated the constant apologizing because it was a reminder – as much as her stiff foot and limp arm are reminders – which things have irrevocably changed for my friend.  I wanted Annie to feel ‘normal’;  sure the stroke has changed her, but I don’t’ want her to feel that the resultant incapacitations have defined her.  It’s a selfish thing to want, I recognize that – as much about me  wanting to feel reassured that all is well in Annie’s world as it is about Annie herself.  It’s appalling sometimes, to try and stare down your own ego. 

When I heard Annie apologizing yet again as someone assisted her to the dining patio, it was a bald reminder of her emotional vulnerability, and my own aching helplessness in the face of it.  Maybe the stroke and its aftermath don’t even have much to do with it – after all, it’s not a place our friendship took us before the stroke, being vulnerable with each other.   We were too busy travelling at high speed through our experiences together - - working in Japan, partying in Santa Fe, running in the Grand Canyon.  

 Now, post-stroke, we find ourselves navigating quieter waters.  I picture us in a rowboat, side by side (me on the left) learning a new rhythm to our friendship a we pull through waters that are quieter than the frothy rapids of our 30s and 40s, but no less deep.  

“I didn’t leave my heart”

At the end of my 4 days in Calistoga, California, my friend, Sandra asked if I was glad came? 

There was some angst leading up to this trip so it was a good question.

Could I shower? Was the step into the shower too tall? What were the grounds like, e.g., could I walk from my sleeping quarters to the dining area and pool?  Sandra was very patient with my questions and in some cases didn’t really remember the layout of the house and I was asking micro details to the point of annoyance.  In the past I regretted not knowing the details and I simply wanted to be prepared since this was my first real pure pleasure trip without a sister or sister-in-law nearby.

My angst was so unnecessary.  The home in Calistoga was to me was the equivalent of a 6-star resort.  Sandra went to great lengths to ensure my comfort.  I slept in the main house so there was only a short walk to the dining area and pool and minimum steps.  The shower had no step.  The most difficulty I had was getting down the steps to the pool or making it to outdoor dining time. There were about 13 people at the house for the weekend and always someone willing to help me get down the steps or into the pool.  In fact, I made 8 new friends, which is a true joy at my age. We are already exchanging emails and face booking. They are all from the San Francisco o Bay area and occupations range from filmmaker to singer/songwriter to food server at a popular SF restaurant. The daily activities included a leisurely coffee/breakfast, pool time, lunch, snack, pool, dinner, bed.  It was about 90 degrees during the day and air conditioning and Calistoga are not necessarily abundant; hence all the time in the pool.

What I was fascinated by was how irrelevant my stroke was with the crowd.  Don’t know if Sandra told anyone in advance but I do know that no one asked me about what happened.

What I learned about myself is do I crave attention about the stroke from strangers?

I think it is so healthy that no one mentions it nor feels sorry for me.

In answer to Sandra’s question, I didn’t leave my Texas heart in San Francisco but I sure had a great time!

Two Sisters Together - A guest post by Marty Matocha

Having Annie in Bethesda for the last 2 ½ weeks was an unforgettable experience! When I first learned she was coming, I was absolutely thrilled but wondered how it would turn out – would she adapt to the clinical trial routine, manage the hotel stay, come to my house and like my cooking and wine choices?  How would she stay busy in-between the coming and goings to NIH? All unknowns.  In hindsight these were needless worries as she managed the full spectrum of activities thrown her way.  Perhaps the first of these was the long walks down the hallways leading to the MEG. Then there was need for her to patiently perform a repetitive task with her left hand while it was connected to an orthosis.  A benefit of the latter is that it allowed Annie a chance to focus for about 20 minutes, 4-5 times per session, on a specific task without the distractions of daily life.  Perhaps an analogy to this is meditation, but how many people take the time to do this every day? Another benefit was meeting the NIH staff involved in the trial – they are smart and friendly and truly dedicated to a better understanding of the brain and its ability to recover from a stroke injury.

Of course, there were also some fun activities.  Annie introduced me to several restaurants in Bethesda I had never tried. We experienced stand-up comedy (aka “Laugh Riot at the Hyatt”). We saw “Midnight in Paris.” We visited Penzey’s in Rockville and Balducci’s and Madeline in Bethesda. After Bob arrived we toured the Steven F. Udvar-Hazy Center near Washington Dulles Airport and received his expert commentary on the flying machines in the huge hanger. As for me, I learned the meaning of “bodega” and the reason a hotel has a courtesy car. My husband and son enjoyed her company too and, for all of us, her visit added something different and interesting to our lives.

Last Wednesday, we said our goodbyes and each agreed it would be good to get back to our normal routines.  But it was rewarding to me to spend time together and see her independence expand and hopefully, she left with the motivation to practice “Offene linke Hand” over and over and over again.

Home sweet home

A couple days ago, when I read about Gabby Giffords leaving TIRR to go home my very first thought was, that is the only way she will get better because this is exactly what happened to me. I was at TIRR for 7 months and although I had 6 -8 hours of rehab every day, it is still a hospital. I remember hearing that you can become "institutionalized."  I didn’t exactly know what that meant at the time, but I do now.

The doctor asked Bob:  "Are you sure you are ready for Annie to come home?" We naively said, unequivocally, “Absolutely”.

In hindsight, I was in no position to know if I was ready or not to go home. I was told it was time. All I knew was I thought I wanted to go home. Bob seemed excited to get me home. He was living at a friend’s home for 7 months and came to see me every day. I didn’t truly understand my limitations until after we arrived and the severity of what we were going to have to overcome. I knew I couldn’t walk, shower, get to bed on my own, get to the bathroom, or prepare any meals. I had difficulty eating due to my medication, e.g. I regurgitated my food at the end of every meal. And my dignity, well I checked that at the door of the hospital and forgot it. It took years before I could reach for it again.

We were completely unprepared for Bob having to take over 100% of what the nurses performed in addition to the physical therapy and I was 100% wheelchair dependent.  I was in the therapy vernacular, maximum assist. We were prisoners in our own home. Couldn’t go out for fear I’d have an accident – bathroom variety – and I did a couple times. I’d fall out of my wheelchair. I was in pain – for reasons we’ve never understood.

Bob had to spend 20 minutes every morning and evening straightening my leg so I cold sleep comfortably.  I was wearing diapers at the time.  It was the only way we knew how to both try and get some sleep. The process of lifting me out of bed to toilet, etc. was too time consuming so we eventually graduated to bedpans after about 6 months. I was 100% dead weight and about put Bob in traction with all the lifting and transferring he did. Thank goodness he is so strong.  When he wasn’t feeding me, changing me, transferring me he was trying to teach me how to walk again.  You might ask at this point:  When did Bob have time for himself? What did he for a release?  Why didn’t he jump off a building?  I truly don’t know how I would have handled this had the situation been reversed.  

Eventually we found physical therapists, caregivers and of course leaned on family. Going home was tough, but it was time and it taught us a lot. 

During a quiet moment

mel·an·chol·y/ˈmelənˌkälē/

Adjective: Sad, gloomy, or depressed.

Noun: A deep, pensive, and long-lasting sadness

Melancholy…

When I used to travel a lot for work I found 2 weeks or more on the road to affect my productivity. Maybe it is the same here at NIH. Home is where I drift to between sessions. What’s going on, what am I missing, what’s everybody up to without me? Probably not much other than a few dinners out and some drop-bys to see what’s coming out of the metal shop. Still I wonder.

Melancholy may be too strong of a word. A little bit lonely? I miss my friends and family – aka my Bobby. My home routine which seemed a little boring at the time looks pretty good to me. But of course, “the grass is always greener”. Maybe I have gotten so used to having my exercise gear, my computer, my co-pilots and most important my kitchen near by to fill the gaps in the day. Seems like I am always doing something. Maybe I should revel in this time. After all, it is for a good cause and I will know I was part of something important.

The stroke has shortened my “piece of string”. That’s what Bob calls it when someone tightens the radius of their life. It’s like pinning a string piece at the home base and moving it in a circle – that’s ones range. Before the stroke the string I had few limits but now it is pretty short. It’s not so much a negative it is just that the stroke makes everything much more difficult. More time consuming.

I try not to dwell in this space. There is nothing to be done about it but to continue to try harder to get past my limitations. So maybe melancholy is okay for a little while. Remember the mantra “Revel in what we can do”.