Every now and then I feel the overwhelming need to write. Word vomit everything that is currently
stirring around in my brain. Someday I
plan to really write. Put our entire
story into print but for now I just need to unload.
June 2014 marked my three year post Gamma appointment. It was suppose to be the appointment that
told all. Was I going to actually be AVM
free? John and I arrived as usual early
in the morning. I had my MRI and was
promptly seen by an unknown Neurosurgeon.
My regular surgeons were both absent.
He told me basically nothing.
They still couldn’t see the AVM because of my “Gamma Footprint”. He suggested that I follow up with a cerebral
angiogram but we agreed it could wait until year four.
I left the appointment feeling somewhat defeated. This new team member couldn’t answer any of
my questions. He had no explanation of
why I feel so poorly. Why my bad days
out number my good. It felt like a waste
of a trip.
A couple of weeks after that appointment I received a referral
to a different vascular neurosurgeon at a different hospital. The mystery was who had sent the referral in. It wasn’t the Gamma Clinic. It wasn’t my family physician.
It took a team effort but we discovered it was Dr. C, one of
my original surgeons. The question
remained why. I had not seen him in
almost a year. The answer came six
months later in the form of an email from his assistant. (Not kidding.
She must have been really busy).
“The reason for the referral to the Neurovascular clinic
was because the last MRI you had said that the AVM was gone, so Dr. Cusimano
wanted to confirm that with an angiogram. The angiogram should be done at
St. Michael’s.”
Well that’s ironic. I
was told it couldn’t be seen because of the footprint by the new guy. I actually called him on the phone to confirm
that. Besides I can still hear it.
Now don’t get me wrong.
I want the little monster gone but there seems to be some conflicting
information. I decided ultimately to
wait until the four year mark to have a MRI and angiogram at the new hospital and
new doctor. I don’t really feel up to
having anyone poke around in my brain right now. Thanks but no thanks.
Let’s talk side effects.
John tells me I have more bad days than good ones. I believe him because he is my memory.
I get the basics done.
Feed animals, do the laundry, try to feed the family. My personal care suffers sometimes. I try to keep medicated. It’s worse when I forget to take my meds, as
to be expected.
It’s not that I don’t want to do things. Sometimes outside forces get in the way (I
will tell you about that in a minute.)
Sometimes the sheer amount that needs to be done is too overwhelming and
I get stuck. You know? I would rather do nothing than take on the challenge. Sometimes I am simply too exhausted.
I sleep a lot but it’s never enough. My sleep is broken into tiny chunks of
time. It is rarely restful.
The more tired I am the more side effects I have. I end up stumbling
words, talking nonsense, hallucinating and have lots of tears.
One of the most important things I was told when I was
diagnosed with an AVM and subsequently diagnosed with a brain injury post Gamma
was, “You must control your environment.”
That’s great in theory but not so easy to practice when the universe
keeps screwing with us.
How you ask? Let me give
you a condensed version. I will save the
rest for my book.
At the beginning of the school year one of our children was
threatened daily by another student. He
told her the details for how he planned to kill her and stalked her around the
school for 10 days. When he was
confronted he claimed she was harassing him.
He was quickly discredited, disciplined and allowed to carry on as if
nothing happened. I spoke to the school,
the school board, police, therapists, counselors, and a lawyer almost daily for
eight weeks. In the course of a couple
of weeks our daughter became a statistic and had to learn to navigate the world
differently. It shouldn’t be that way
but it is.
We had to put our beloved dog Spirit to sleep after
suffering for more than a year with a brain tumor. She and I shared anticonvulsants for most of
that year. Her last day was spent eating
too many cookies and going for a huge walk with the kids and I. Her ashes keep me company in my office.
We have a farm!!
There are lots of joys of owning a farm but it’s also a tremendous amount
of work. Chicken, cows and pigs all had
to be sent for processing. Customers are
always coming and going. Daily chores. Weekly chores. Picking up feed. The end of the
season chores that never really ever get completely done but we will wish in
the spring they did.
In November wee Moose died. He is the reason we have goats. The little goat we welcomed
into the world in February 2013 who wouldn't have survived without John’s
intervention. Moose had a deformed hind leg, a grade V heart arrhythmia
and was given the life expectancy of a week.
Well he proved the world wrong and we all fell more deeply in love with
him. His loss was painful for all of us
but especially John.
Speaking of John keep in mind he works full time away from
the house and teaches Karate two nights a week.
He is the grocery shopper, the driver, the errand runner. He is an only child with no siblings to rely on and my only constant support.
Because our life isn’t exciting enough we took on renovating
three bedrooms and working on the final stages of completing our family room
downstairs.
I also decided to start a small home based business because…
I have no idea. It seemed like a good
idea.
On Christmas Eve John’s Dad was admitted to the
hospital. He spent a couple of days but
he probably should have never been released.
I went through Christmas on autopilot. I remember almost nothing.
On December 28th my own Father was airlifted to
an Intensive Care Unit in a city about 1 ½ hours away with complications of pneumonia. For two weeks we weren’t sure what the
outcome would be. At four weeks he
returned home and is slowly recovering.
He and my Mom are discovering a new normal.
While he was away everyone in our house became sick with a
never ending cold. It just cycles around
and around. Maybe it’s because we were
hanging out in hospitals so much.
Did I tell you that two of our children just finished exams? The other
one missed a week of school because of this dreadful cold?
Did I say that our son has decided to take charge of his
education and do some major self advocacy?
As I have always been the one to advocate for him this role reversal is
very scary for me.
Did I mention our goats are all pregnant and Lizzy had a
miscarriage last Sunday?
In the meantime John’s Dad was rushed by ambulance back to
the hospital on Monday where he still is today.
John has been juggling all his own responsibilities as well
as looking after his fathers. Only to
add to his stress I had a small nervous breakdown. Not because I chose to. I like pretending to be strong. I fell apart because one can only be so
strong for so long without losing it. My
brain injury supports this hypothesis.
On Tuesday night John tucked me into bed before he left for
the night and told me he needed me to be okay.
He needed me to stay in bed, sleep away the pain and just be okay.
Today I am.
The pain
has lifted a little.
I can think
clearer.
I needed to write.
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