Ronnie.
My best friend and older brother until he died not long
before turning 15.
As a 12 year old I had no understanding of how to deal
with the very complex and sorrowful emotions that
comes with losing someone you love.
I had no words. I didn't know any words.
Sad? not deep enough. Unhappy? too light. Upset?
Hurt? Angry? Heartbroken? I kept trying different words
but none of them seemed adequate. There was one word
however which kept hounding me day and night: WHY???
My brother was the kindest, loveliest, person I knew, so why
did he die?
Unable to verbalize my internal turmoil I sought consolation
in music. I pounded the keys on the piano, I blew the trumpet,
strummed the guitar, listened to whatever sad classical music
I could lay my hands on. I spent hours wailing along with
sorrowful blues and jazz singers and started to compose my
own pieces of music on the piano.
Music, I discovered, is a language that says everything without
the need of a single word.
Music has helped me work my way through the loss of
my father and many, many, many friends.
However, though I have experienced a lot of heartache and
a plethora of difficult experiences, nothing so far compares
to what my son and I are going through right now.
My son is suffering with an incurable disease called
Schwannamotosis, plus bi-polar disorder, plus asthma and TMJ.
None of these ailments are curable, only manageable.
Schwannamotosis: a nasty genetically driven illness causing tumors
(mostly benign) to grow on nerve endings anywhere it chooses to.
In my son's case, most of his tumors are situated in the worst possible
place: the brain and the brainstem.
Long story short: after having being pushed about by doctors,
hospitals, etc. etc. ala ''pass the parcel'' for almost 10 years,
the tumors have now reached critical mass and my son's life
is hanging in the balance.
(Watching my mother go through losing her son I concluded
that losing a child is probably the very most painful
experience a human being may have to endure.)
Due to procrastination and unwillingness by the health system
to actually deal with my son's situation, my son is now
suffering with so much pain that he can hardly walk, one
of the tumors is pushing out his left eyeball, his hearing
is worsening, he can't see properly, etc. etc. etc.
and so sub sequentially, he is super depressed.
As to not bore you with too many details describing the hell we
are going through right now, let me just say that
we are running short on hope and the old ''WHY!@#%$!??''
that bothered me so much as a twelve year old.....
is back.
Once again I am searching for words.
Words that do not seem patronizing or glib, words that
may strengthen, encourage, and comfort my child as he deals
with a disease that is truly terrifying.
Though I don't know what to say to my son, I do know
what NOT to say:
Anything the trivializes, simplifies, minimizes or underestimates
what he is feeling going through this very difficult experience.
When someone is hurting,
sometimes...
the most helpful thing
to do...
may be.....
to pretend to be a dog.
Just being there,
just not saying anything.
about the image: the only photo I have of my brother
edited in photoshop.
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