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.