Tuesday, March 22, 2016

A new reality

During the several opportunities I recently had to speak to University students, I always described the following allegory:

Many of us embark on life's journey with a general list of set expectations;  going to school, university, finding work or a profession, get married, having kids, etc.  That's one potential path.  Now when someone experiences any form of trauma, that path suddenly changes and you have to follow the path that takes you in a different direction.  This path is unexpected, unprecedented, and highly undesirable.  

Million dollar question:  So how does one cope with these changes on this new path?

Three months after his hospital discharge in July, Ayal was now eating on his own and was in direct competition with our 1 -year old son who was also trying to master the art of eating with his fingers.  Ayal was allowed to come home to sleep, however, he returned to the hospital everyday for intensive physical, occupational, and speech therapy.  He was now entirely out of a wheelchair, but dependent on crutches to help him walk a few meters at a time.  He hated them.  I hated them. Our son liked to play with them.  Ayal pushed himself in his physical therapy sessions and quickly graduated to using a cane.  Again, like father, like son, they both learned to walk around the same time.  

Occupational therapy was cognitively grueling, and improving his executive functioning and fine motor skills was challenging, especially with no functional use of his right arm and hand.  Who could ever imagine that a highly intelligent business man with an MBA, at 38, would be sitting at a table everyday transferring rubber rings from one wooden stand to another?  

I have this unpleasant and very distinct memory from a specific occupational therapy session.  Ayal's father attended this session about 8 months post trauma.  Throughout the 45 minutes, his father appeared very distraught watching his son struggle to raise his arm only to place a toy block on top of another.  He continuously muttered, "Sad, sad.  I don't believe this.  So sad", while fighting back the tears pooled in the corners of his eyes.  I didn't blame him for saying it.  Who wants to watch his grown son play with blocks?  

For many months (I believe the entire first year), his right arm was nestled in a flimsy blue sling to prevent his arm from flailing and banging into walls, and more importantly, people.

Ayal adapted fairly quickly to only using his left arm, especially when getting dressed.  It inevitably becomes a highly specialized skill, that unfortunately doesn't qualify you for any job opportunities. Challenge yourself: For one day, try dressing and undressing yourself with one arm.  I tried for 5 minutes.  I was tired and annoyed, I gave up.  Shoes with laces were given away and he did not wear button down shirts for a year (only for special occasions, whereby he reluctantly let me help him).

Speech Therapy:  This was the hard part.  This was, and still is, the most debilitating, frustrating, and isolating disability.  From the very beginning, everyone often commented how lucky Ayal was to have a speech therapist for a wife.  *Remember, I hated treating aphasia.  However, a friend gave me the best advice very early on:  "Julie, you are his wife, not his speech therapist".  Our situation almost mirrors that old saying, 'The shoemakers children always go barefoot'.  I will discuss my involvement with his speech rehabilitation in future entries.

For the entire first year, all Ayal could verbally produce to express himself was, "yeah" and "no". I was back in the aphasia group from grad school.  His words stayed the same but depending on the message he was trying  to convey, his intonation fluctuated and volume increased (at least I knew he didn't have a voice disorder accompanying the aphasia).  When he called me, I was, "yeah"; when he wanted an object or someone to help him with something, "yeah, yeah";  when he greeted someone, "yeah, yeah".  When using the word, "no", his intent was fairly obvious.

Challenge yourself:  For one day, try speaking only with the words "yes" and "no".

Aphasia what?

I find it interesting that there is an overwhelmingly large number of people in this world who have never heard of aphasia.  However, I admit, if I wasn't a speech-therapist I undoubtedly would not have known about aphasia.  If you were to walk down the street and ask a variety of people what aphasia is, you would find that the following responses are the most common.  Aphasia is a:
                   a) rare fruit
                   b) place
                   c) disease resulting in an encounter with poisonous insects

According to the National Aphasia Association, the incidence of people in America who suffer from aphasia is approximately 1,000,000 (approximately the same number of individuals with the HIV or AIDS virus).  I will not continue to spew out numbers and statistics from other countries, but needless to say, it is a growing disability worldwide because more people are surviving strokes and other brain trauma related events.  It is very unfortunate, however, that the general population views people with aphasia as psychologically ill or mentally challenged.  In addition, individuals with aphasia have reported encounters with people who assumed they were drunk.

The clinical definition of aphasia:  A communication disorder most commonly acquired due to brain damage of the language center in the brain.  It affects one's ability to process language (occasionally both receptively and expressively), and often their ability to read and write, BUT their overall intelligence is left intact.

I offer a definition from individuals who suffer from it:  Aphasia is a communication disorder, that due to brain damage, affects an individual’s inability to work, provide for their families, isolates them from friends, family and the community at large, which ultimately leaves the individual frustrated, helpless, angry and alone.

Before Ayal's stroke, he was business manager for a high-tech company in Cambridge, Massachusetts. Speech was an essential requirement for his profession.  He was good at it.  Ayal had the 'gift of the gab'.  In July of 2009, this was taken from him.

He religiously attended cognitively draining speech therapy sessions for 15+ months.  Initially, our health care provider allowed for 5 sessions a week, after 3 months they decreased to 3 days a week, then to twice a week after 12 months, and finally once a week.  

Most of our friends and family did not fully understand and grasp the severity of his communication difficulties. His aphasia did not solely affect his speech output.  Ayal had significant deficits in his ability to read and write.  For the first two years, he did not express great interest in working on the computer.  Ayal depended on someone to read his emails to him, write his emails, and make phone calls for him.  Many people suggested that he type his wants and needs.  This was not possible.  He could not formulate simple sentences structures, let alone spell basic words.  

His TRUE disability was his inability to effectively communicate and express himself, and not his difficulty walking or using one arm.

For the first year and a half, Ayal kept a 'communication notebook' shoved into the pocket of his pants.  He required this notebook (as do many individuals with aphasia who are more independent), to converse with family, friends, and his community.  It included his ID number, our names, address, medications, phone number and all of our pictures.  It was a truly inviting opportunity for anyone to access his personal information.  

It might as well have read:

Hi, my name is Ayal Shulman, I have suffered a stroke and I have aphasia.  I have trouble speaking but I am not an idiot nor am I wasted from drinking all morning.  Take a look at by notebook, you can learn everything about me and my private life.  My wife and my kids names are all listed.  Would you like my credit card number and bank details as well? 

Aphasia or no aphasia, many people already have easy access to our personal information.  We post it all throughout our social media networks.


Tuesday, March 15, 2016

A shift from shock to automatic pilot

There is no question, without a doubt, that when people are pommeled, shattered and crippled by any traumatic event, it is always accompanied by the "shock response".  Each individual exhibits a different shock reaction and I now understand and respect a person's initial response to any traumatic event that upset the course of their life.  I used to judge or criticize people and the choices they made. I do not do this anymore.

While Ayal was hospitalized in Beit Loewenstein Rehabilitation Hospital, many events and developments were taking place in tandem; attending to the hospital experience, the kids, finding an apartment, acclimating to the bureaucracy of a foreign country (that is an entirely different blog in and of itself), and maintaining some form of sanity.

I often use analogies to emphasize and illustrate my experiences.  My roller coaster analogy:  The initial stages of Ayal's hospitalization and our overall experience resembled that of going on a roller coaster ride for the first time (however, this roller coaster is the ride where your strapped in from the chest up and your legs are dangling).  You know it will end, you just don't know when, and you feel extreme nausea or actually end up vomiting at some point.

In the event of a trauma, you have two choices; 1. hide in a corner and feel sorry for yourself or 2. try to pull yourself together to be strong for your family.  In exercising option #2 you feel that at least you can try your hardest to prevent your children from becoming "messed up" as a result of it all.

This is when the "automatic-pilot" mode steps in.  Ayal needed an advocate while in the hospital.  He was attached to an IV antibiotic drip for several hours a day for 6 weeks (to kill the bacteria which caused the endocarditis from the beginning).  That meant he had to remain there 24 hours a day.  Who would watch over him at night?  A family member of friend needs to monitor if they are being served their meals and as well as eating their meals.  Did the nurse change the catheter, who will take him to the shower, cut his nails, brush his teeth, cut his hair......talk to him?  Catching the doctor to get updates in the hallway was always a challenge.  In fact, I do recall it took me a while to identify and differentiate between the doctors, students, nurses and cleaning staff.  They all wore the same uniforms, only the colors varied according to the general hierarchy of professionals.

In addition to monitoring and trying to care and advocate for your spouse you can't forget about the kids.  Remember, you have to try hard to be there for them so they don't become "messed up".  Our oldest daughter was in first grade, our second daughter was in preschool and our third child, a boy, was a year old and in some sort of day care.  We were in the learning-how-to-read mode, day care mode, and in the midst of the diaper and bottle stage.  

I will conclude this entry by stressing to everyone that I am NOT a hero nor am I a 'tzadika' (righteous woman).  At this point, I am a mother and a wife who made the conscious decision to stay in automatic-pilot mode.

Sunday, March 13, 2016

Introduction to living with aphasia

My name is Julie Shulman. I am a mother, wife, and speech therapist.  In June 2009, my husband, Ayal, suffered a stroke and an additional CVA (Cerebral Vascular Accident) in July leaving him with severe expressive Broca's aphasia. He is hemiplegic and wears an electric leg brace (Bioness technology) to assist his walking.

At the time of his initial stroke, our three children were ages 5, 3 and 1.

I remember his stroke as if it were yesterday.  We were sitting down to eat Friday night dinner.  He suddenly ran towards the bedroom and collapsed on the bed.  I am still ashamed, even now, that it took me about 3 minutes to realize he was having a stroke.  As he motioned for the phone I immediately dialed 911.  The ambulance took forever to come.  The kids were crying.  I froze....

After four days in Beth Israel Deaconess in Boston, they discharged him with an "unknown cause" for the stroke.  What 37 year-old healthy male suffers a stroke?  When he left he was walking and his speech output was clear but required a bit of effort to produce lengthier sentences.  We thought he was in the clear; unresolved, but over.

We were wrong.  Five weeks later, which was two weeks after we moved to Israel, he suffered a second CVA, whereby the surgeon needed to perform a craniotomy.

You don't realize the severity of a situation when you are in the midst of it.  I clearly remember when the neurosurgeon came out of the surgery.  He took off his surgeon cap and said, "Why don't you have a seat".  It's one of those surreal moments where you are watching a movie, but it's you on the screen.  You hope that you are dreaming and expect someone to slap you across the face, pour water over you, pinch you.

He continued the conversation by asking me the whereabouts of our families.  My family was in America, Ayal's were in South Africa.  I stupidly asked the doctor what he would do if he were in my situation.  I remember him saying, "If I were you......they (our families) should've been here 10 minutes ago.

Why wasn't that obvious to me?  In the midst  of the crisis, you don't have the luxury of stepping back and assessing all the different angles. I never even considered contacting our families... at that moment.

Ayal was in the ICU for two weeks fighting for his life.  Communal prayers around the world were said and phone calls and emails starting pouring in.  It turned out that he had Endocarditis.  A strep bacteria entered his blood stream and vegetated on his heart valve.  To make matters worse he would eventually have to undergo heart surgery to either replace or repair the valve.  Lovely.  When he was cleared for discharge to the Internal Medicine department, that's when I got the first 'wake-up call'.  Initially recovery was very slow and exhausting (getting him onto and off the wheelchair to and from his bed, making sure he was able to swallow yogurts, drink liquids, not choke or aspirate, etc...).

Then came the initial slap in the face.  I needed to know what he understood -- if he recognized me and our family.  I gave him a white board and a marker.  That was a very poor choice.  He looked at it not sure what he was supposed to do with these items I placed in front of him.  I knew this was a very bad sign.  That afternoon the doctor sat me down to explain what was happening from a physical, cognitive and communicative standpoint.  Ayal was informally diagnosed with severe- expressive Broca's aphasia.  Given my knowledge and professional experience, any chance for full recovery and returning to his 'old-self' was not looking hopeful.

Now I digress. Professionally speaking, as a speech therapist, you learn about the many disorders in graduate school involving limited use of speech (aphasia, dysarthria, and apraxia, etc.).  Aphasia, as I clearly recalled, was a disorder that only happened to adults, to the geriatric population.  In fact, during one of my semester graduate placements I assisted the running of an 'aphasia group'.  Imagine a group of 5 adults, ages 55-70, all stroke survivors, and all of them suffering from aphasia.

Some individuals were more verbal, some were more communicative but less verbal. The 45-minute sessions consisted mostly of yelling and one-word utterances, "no, no, no", "ya, ya, ya", "me, me, me".  The more excited or angry someone's mood became, the pitch, intonation, and volume of these utterances fluctuated.  Gestures always accompanied their responses.  I sensed frustration and anger.  How could a 23 year-old second-year graduate student be an effective and patient therapist?  I hated and dreaded these weekly sessions and highly anticipated the end of the semester and return to working with cute, little kids.  I promised myself that at the end of the semester, this would be the last time I would work with anyone who had aphasia.  Isn't it interesting how man plans and God laughs?

Back to 2009, after being hospitalized for a month, Ayal was discharged and placed in the Beit Lowenstein Rehabilitation Hospital in Ra'anana, Israel.

Trust me when I say that my story doesn't end there. I am going to try to share my journey with you in and my personal and professional insights in following posts.