You would think that, sleeping for seventeen days would produce some rather wild dreams.  I had only one, if it was a dream.

When I was told, I was talking and taking control of my care during the beginning of my hospitalization; my reaction was, “Are you kidding?” “You listened to me?” “ I was out of it.”  It is unsettling to know I was making decisions without any memory of where I was, what the decisions were or who was involved.

At some point, the paralysis took over my arms and my ability to breathe.  I contracted pneumonia, had a main line put in, was intubated and developed three blood clots.  My friends told me, it was a good thing I didn’t remember any of this.  I didn’t remember my doctors (I had four specialists and several others) who were pooling their resources to discover what was destroying me.  They diagnosed the Guillain Barre Syndrome early, but they knew there was something else which was killing me.  The doctors advised my family farewells should be planned.  Family members came from parts of the country to visit, but I didn’t remember any of it. My doctors sent emails to colleagues and contacted experts when tests proved positive for West Nile virus.  They learned of a study was being conducted by five universities in the United States and Canada.  My doctors rushed off paperwork to have me considered for this study involving an experimental drug.  I was approved for the study.  The hospital’s board convened to permit the drug be administered.  My neurologist told me, he waited at my bedside for hours waiting for the drug to be delivered from California.  I had about two hours left, when the drug arrived.

No memory, no dreams – just a blank during this span of time and activity except for a single event which I call, dreamtime.  Dreamtime began suddenly, not like the sensation of waking up out of deep sleep, but the sense of being in a dark expanse when a bright spotlight was switched on.  The light did not illuminate, just focused on elements as I mentally turned my attention to them.  My experience was beyond the constraints of time.  In front and above me up on a high ledge was a white diorama like box containing my family and friends dressed in brilliant white, their faces contrasted against the sterile surrounding.  To my left was a graphic clip art image of a baby within a pink square.  Without explanation, I knew this represented my daughter who died when she was nearly six months old.  This graphic was closest to me while the box was in the distance.  The same voice which warned me on the beach, was again behind and above me instructing me to choose.  Comfort and peace emanating from the graphic began to lead me to the left, where I felt I could easily slide away with her.  I looked over my right shoulder locking my gaze on two individuals who I felt, I could not leave.  I was swaying left and right with uncertainty.  I began to turn right, when the voice advised me, “If, you choose this way, it will be hard work.”  I took one last look at the graphic as she drifted away getting smaller with distance.  I turned toward the box and was confronted with a wall of rock.  It took all my strength to mentally pull myself up each jagged, black boulder.  For the first time, I felt pain.  The voice repeated, “It will be hard work.”  I responded to the voice, “I can do this.”  Suddenly, the box was gone.  My body had substance; it was consumed with pain so great, it threw my shoulders writhing backward.  The voice was with me, but said nothing.  I was given a set of huge, soft wings. When the pain increased I struggled to bring my shoulders inward pulling the wings in front of me, encasing me with a shield against the pain.  My existence was not defined by time, but endless waves of pain and wrapping of comforting wings.

This event was incredibly real to me.  Explanations could be: the effects of drugs on brain function, the dying of neurons in the brain, angels or the supernatural.  I do not know how or why.   I just know I am not questioning it – it just is.  Maybe, I regret not going with my daughter.  Maybe, the time for me to understand is yet to come.

I realize the voice’s admonition of “hard work” was more than the struggle to survive, but the struggle to recover.

October 29, 2012, was my nephew’s birthday.  He lives in California.  In New Jersey, I was in the dark; boats were floating past the house under the power of the tidal current and the ferocious wind.  The full moon high tide and the dangerous storm surge were still hours away.  Yes, I was scared.   My phone was still working so, I texted him to open an account for me to start this blog.  It seems very frivolous now, but it kept my mind off what was happening outside.  I thank him for taking time on his birthday to do this favor for his crazy aunt.

During the previous days, I contemplated the mandatory evacuation order.  This would be our first storm in this little, one storied house located just up the street from a creek off the Shrewsbury River.  We knew the high water mark for the one hundred year storm of 1992 and felt confident an extra two or more feet of water would not cause much damage.  With a sump pump and a submersible pump working any water getting in the basement could be dealt with.  Before we moved in seven months ago, we purchased a new, powerful generator.  Upon delivery we started the new generator and it started right up.  The day before the storm new gas and oil were checked and it was vented; the generator ran perfectly.  That is, until 7:10pm when the lights went out and so did the sump pump in the basement.  My husband ran down to the basement, starting up the generator; what a comforting sound of it humming, confident in the knowledge water is being pumped out.  Until, it suddenly stopped.  My breath stopped, I could feel the adrenaline stiffen my muscles.  It started again.  It stopped again.  This was repeated several times until it was silent enough to hear his footsteps coming up the basement stairs.  All our preparations were dashed and now, we were vulnerable.

As the storm raged and water began seeping into the house, I reevaluated our decision to stay.  This choice hinged on our past experience with a Red Cross evacuation center we escaped to during Hurricane Irene the year before which turned out to be a worse disaster than the actual storm.  I had a miserable cold; because of the vulnerable health of a family member, my cold exempted them from the list of possibilities.  Being dependent on an electric wheelchair caused access problems to nearly all of our friends’ homes; even if I got in the house, bathroom access would be difficult also.  Another factor to consider, many of my friends have homes in more vulnerable locations than ours.  In retrospect, we should have gotten in our van and headed for high ground to spend the night in a parking lot on the southwest side of a sturdy building.   Although it was terrifying, we survived.  Our neighbors did not fare as well; they came home to ruined houses which are still vacant three weeks later.

The concept of time has left my reality.  These past weeks seem to be one, long, sleepless night.  I seem to be suspended within the time of this catastrophe.   I would look at the calendar with amazement, how did it become November?  Was there a Halloween?  Thanksgiving is when?  I don’t know the dates of events beyond Oct 29^th.  I would sleep for ten to twelve hours and awake exhausted.   Being able to process events in real time will be a sign of true recovery.

PMF