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".