That was my life for a decade and I was literally lost in
space. When I reached out to open a cupboard door I had to stab at it a few
times before I connected. And then there were times when I slammed my fingers
in drawers because I could not think to move them. Those were the little things
but there were big things, too. I walked
into large structures like sundecks and construction scaffolding. Yet even
those bangs on the head did nothing to knock sense into me. But these problems did
not compare to my lack of common sense. When I met a friend for coffee she was
worried that I was going to wander out in traffic and she had to grab me so I
did not step off the curb in front of a fast moving car.
However, being lost extended beyond my perception on my body.
I was lost in time, too. I was in bed half of almost every day –mostly sleeping
but sometimes in a semi-comatose state. Even during my awake periods, I existed
in a fog and I was constantly “veggied out”… For instance when I was toasting
bread on my broiler I could not stay focused on the task. My mind was like a
computer whirling around in a loop – lost in space and not coming back. Only
when the smoke detector announced the arrival of the burnt toast did I come
back to earth.
It was a serious challenge to be able to communicate. It felt like torture to search for names and the words to express myself. I spoke very slowly and often lost my train of thought. And unless others spoke slowly I could not catch what they said. I could not retrieve numbers off the answering machine no matter how hard I tried. It was next to impossible to keep things straight in my normally sharp mind. It was a permanent state of being super stoned…. I was semi aware that this was going on but I did not really care… I lost my ability to feel much of anything.
It felt like a space adventure…..Beam my down, Scottie! I
want to come back to earth! And this happened when I stopped taking all of the
medication my doctors prescribed to me. This came about when I maxed out on the
psychiatric drugs which were supposed to treat the depression caused by CNS
Lupus. I was alone one night when suddenly I felt suicidal. It was a Friday
night - my doctor was not on call and my husband was in Vegas. Per chance I
decided to go on the internet to figure out what could be causing my newest
symptom. What I learned changed my life!!! I found out that I was prescribed a
higher dose of my newest and latest antidepressant drug than recommended. At
the time, this was just one of the “so called” happy pills being pushed my way.
And this was on piled high on top of all of the others drugs that were causing
my brain to misfire. At this point I had taken over 13,000 pills in the previous four years.
Thankfully, I found the website www.drugs.com. That night I learned that 6 out
of the 10 drugs I was swallowed every day interacted with each other. All of my
CNS symptoms were side effects of many of these drugs. This site only described
individual drug interactions. But how about the effects of taking numerous
drugs which interacted with each other? Was the impact (6X2)+4? There is no way
to determine the effect of multiple drug interactions. But I can tell you how
it felt and what it did to my life!
You know I really think that it
is a miracle that I am here to tell you my story.
I mentioned my experience to an American pharmacist who was
a member of my tennis social group in Sun City Anthem (Henderson, NV). He had
witnessed how stunned I was and he did not disagree that I was almost bad
enough to be confined to a locked Alzheimer floor in a care facility. He explained that in the United States I would be
placed hospitalized, taken off all of the drugs and then maybe be reintroduced
to one or two.
This was alarming because I was quite certain I would not be
afforded that treatment in Canada. After all, not one of the scores of doctors
or pharmacists had ever questioned whether one or more of those drugs they prescribed
and dispensed could be the root of my problems. But I knew my friend was right
so I decided to wean myself slowly off of all of the drugs. Even though I was
on disability I was no longer going to be a prisoner of the medical system. I needed
to let go of my fear that without these drugs I was going to die. But it was
not too difficult to do that because death had been hanging over me for a long
period of time. I had a lot of time to adjust to thought of dying after doctors
on three separate occasions had told me that my end was near.
I am happy that I stuck to my recovery plan – it took more than
a year. My last holdout was the clonazepam which numbed me to sleep at night.
It was needed for the nights I remembered how my late sister, Laurie, was left
to die alone in a care facility the year before. But even with this drug I could
not erase the guilt of not being able to prevent her from dying of malnutrition
and untreated infections. You see during my decade “lost in space” my sister was
confined to a care facility with an untreated broken hip. She, too, lived in a
drugged state at the mercy of doctors. Yet my most grievous memory of this whole
decade was how Laurie was treated during her dying days. I witnessed her crying
out in pain after nurses cut away at her bedsores (deep ulcers) without anything
to blunt the pain.
But even this ultimate indignity is lessening. It helps me that
a highly regarded coroner is investigating now and is going to make
recommendations ….so hopefully this does not happen to other disabled people who
are stuck in care facilities.
And I am finally realizing that I could not have done more
to help her when I was in my own zombie state. But this does not mean that I
will ever get over my regret of having unrelenting faith and trust in the Canadian
medical system. I suppose that I am sharing my story so that you, too, can
benefit from my experience.
Today I only take thyroid medication. I have no choice about
this drug. It is needed to replace the hormone I lost 6 years ago when half of
my thyroid gland had be removed due to a rare type of benign tumour.
I am now 60 years old and my career as a financial manager and
a financial planner is long gone. But my life is not over and I intend to make
up for lost time. I have been living the life of leisure for a long time but I
don’t think I am cut out for it. Sure there are people who are envious of my
opportunities to play and travel. But there is has to be more to life than playing
tennis and stuffing my face on cruises. Don’t get me wrong - I love food and I am
enjoying being able to focus and to react on the tennis court. The game is more
enjoyable now I know who is serving and what the score is…. But I don’t think
this is why I was put on this earth!!
I may never ever be completely normal again but I am moving
in the right direction…. These days I am deliberating on how to write the next
chapter of my life. Hopefully, I can move on soon because treading water (after
what I have been through) is not a viable option. Days are too long, and life is too
short…..