Wednesday, March 1, 2017


Several months ago, in mid-November, my older brother, while at work, realized he could no longer read.  Just like that.  The ability to read words and numbers - even know his alphabet - had simply vanished!

At first the doctor's thought he had two brain tumors.  He had had brain cancer almost 40 years ago; they thought it had returned.  With quiet disappointment, we accepted this diagnosis.  Though sad, we could understand how cancer could return.

As the neurosurgeon  studied his scans, it was determined that, in fact, the tumors they spotted were too small - too insignificant - to cause what the changes he was displaying.

Suddenly, his eyesight started to diminish.  He lost peripheral vision in the right side of both eyes. The reigning opinion now was multiple strokes.  Unfortunately, with a shunt in his head from surgery 40 years ago, the hospital was not willing to perform an MRI to confirm the diagnosis.  We just had to accept it.  We were not so willing to accept this time around. There were too many unknowns, too many unexplained symptoms.  The neurologist even stated she was stumped.

He was sent to the best rehab facility in our area, only to return to the hospital less than 12 hours later after experiencing a Grand Mal Seizure.  With no answers to be found, he was transferred to a teaching / research hospital nearby.  

Fast forward several months.  My brother has been diagnosed with a rare condition - SMART syndrome - which is a result of the full head radiation he experienced almost 40 years ago.  The condition is very rare.  Most people did not survive the cancer he had for as long as he has, so the body of information is quite small. We don't have a clear vision of what lies ahead for him, except that - at least for now- he is not able to live alone or take care of himself.  

Over the past four months, I have learned a lot - about Medicaid, and Social Security Disability, and long-term care facilities -all things I never expected to be learning about for a brother that is only 19 months older than I am.

I also was reminded how our family comes together in a crisis.  How, no matter what, we are here to support each other. When the going gets tough, we carry the weight together.

I have also been reminded how precious life is - - -each and every moment.  My brother held multiple degrees: music education, business, special ed.  Yet, without any notice, all of that learning vanished. Will it come back?  We just don't know how much or how long it might take.

And I am reminded of my One Little Word for 2017....Joy.  You might ask  "Where is the joy in this situation?"  But it's a sister that shares the work (truth be told, she is doing the brunt of the work right now) a friends and coworkers that ask about him a simple family dinner.  It is also there in my brother and the fact that he is a survivor.  He survived a terrible disease almost 40 years ago. He survived several health setbacks as a result of his cancer.  But he has lived a productive life, touching the lives of many people.  

Joy is everywhere. Even in heartache.  But you have to be willing to look for it, and focus on it.  You have to seek it out and hold it tight.  This year, no matter what, I choose to find the Joy in my life and the lives around me. Life is not perfect.  We all have a choice, focus on the joy or to focus on the disappointments.  I choose Joy!

Thank you to Two Writing Teachers for the opportunity to share a slice of my life, and learn from the wisdom and experiences of other slicers!


  1. Oh my goodness. It must have been terrifying to suddenly lose literacy like that. I actually wrote my slice tonight (late!) about an evening I spent with a family that has had both parents (younger than me, with three kids) face huge health problems in the last year. There were eight people there from three generations, and the room was full of joy.

  2. What a beautiful post. My best friend's husband is going through something very terrible right now as a result of two blood clots after back surgery. It is scary, and we pray constantly. It is really unimaginable, but you have made me stop andthink about where the joy is in this situation. It is in the coming together of friends and loved ones. We all really need to remember to enjoy life. Thanks for the reminder.

  3. Ahhh. Such a beautiful reminder to CHOOSE to find the joy in all of our slices of life. Thank you for sharing your story.

  4. Phyllis,
    Joy was my #OLW for 2016 and I can see how precious it already is for you! Choosing JOY is critical and really frames each of your days! So excited to have you here every day, my friend!