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”.