Down The Rabbit Hole - via my stroke

THE NIGHT OF

April 2, 2011 I went to bed not feeling well, but thought it was just because I was tired from a busy week.  It was a Saturday night; I had dinner with a friend, returned home, watched some TV, and went to bed.  I woke up around 11 and realized I was having difficulty moving my right leg and arm.  I struggled to get out of bed, called a friend, and waited for her to arrive.

As I waited I attempted to write with a pen and paper and realized I could not coordinate the hand movements to do this.  My friend arrived, helped me down the stairs, into her car, and drove me to the emergency room.  This began my journey through the looking glass and down the rabbit hole.

I was having a stroke.  A stroke is a brain injury.  Mine was from a blood clot in my left front brain which affected my right side.  The ER was a surreal experience for me.  The security guard at the entrance had to help me stand and move to a wheelchair.  Once inside I answered questions an admission person asked me then I was taken to a small exam room.  My vitals were taken, an IV was started, a catheter inserted, and I was asked to smile, make faces, what was my birth date, where I was, the day’s date, and other mental assessment questions. 

My blood pressure was very high so a drug was added to my IV to quickly bring it down.  In the matter of seconds it dropped so low that I couldn’t move. I panicked and the nurse immediately stopped the drug and I began to regain feeling and movement in my body.  With that crisis adverted we still had to deal with the reality of my stroke.

I lay in the ER waiting for a CAT scan.  I slipped in and out of fitful sleep.  I talked with Tad and Jason.  I tried to reassure them, which was hard to do because I could not reassure me.  I told them to not make any plans until we had a better idea of what was going on.  I worried about my cats that I left abruptly in the middle of the night and hoped my house would be okay.

And then I remembered to breathe, and to draw my breath in and out in long, slow, deep breaths, and to silently repeat my mantra; a mind calming practice that would let me relax between the medical staffs’ charging into my ER room.   
  
So I moved from fitful sleep into my meditation practice and the arrival of more medical personnel.   Although I was grateful for the care and attention I received I wanted at times to just be allowed to rest.  I was so tired.  Worry and fear stressed me further.

The CAT scan finally happened and I was eventually told I was being admitted to the intermediate neurological floor.  I was moved to a hospital bed which was far more comfortable than the ER bed I had been lying on, and taken to my room.  It was a long night that wasn’t over yet....  

The next six days - 

A tech rolled me in my hospital bed to the intermediate neurological unit.  It would be my bed for my hospital stay.  It was now the next day, April 3, in the wee hours of the morning.  The route we took to the floor seemed long.  We changed elevators at least once, passed through areas of the hospital that were being remolded, and up and down halls and corridors that were an endless maze.  Then we were there and I was being put in my hospital room.

It was late.  I was exhausted, but anxious, and could not sleep. I can’t recall much of that first night other than I was afraid.  I was in the rabbit hole and everything was very strange and made little sense to me.  I lay in my bed afraid to fall asleep in this strange place, but the exhaustion won and I drifted into periods of short, troubled sleep. 

I remember buzzing for the nurse several times as I would wake up being frightened because my hand and foot were less responsive to my trying to move them.  The nurse calmly and patiently tried to reassure me but fear overrode her words.  I tried to focus on my breath, to repeat my mantra with each breath, but a huge fear sat directly on top of me and I couldn’t get free of it.

I replayed the previous night’s events in my mind.  I chastised myself for not going to the hospital earlier.  I jumped square into self blame, blaming myself for having a stroke.  I felt I had let Tad and Jason down.  I did not want to disrupt their lives or be a burden for them.

 

How long would these stroke symptoms last?  How could I function without use of my right side?  How could I drive?  How would I work?  How could I manage on my own?  These questions and many more bounced around in my head. 

Sitting here, now, three plus years after that night I can feel the anxiety start to enter again.  The anxiety was so powerful that night that it is no wonder that if I could fall asleep my sleep was fitful and filled with fear.   I realized that  my self talk vacillated between criticisms and attempting to comfort me.  That first night I found the self incrimination was far stronger than other thoughts.

I’m not sure if I processed this then or later in my stay on the neuro floor, but I began to think about how this process was a test of my beliefs in what I said I followed.  Earlier in the week, on Tuesday morning, I had taken my friend and teacher, Dharmakeerti, to the airport.  She had been here from India and for the previous week she presented seminars, workshops, and talks on our spiritual path through life.  Deep inside me, behind my fears and anxieties, I recalled her teachings.

Dharmakeerti has been my friend, mentor, and spiritual teacher for years.  Roger and I met her in the late 90’s after a friend had traveled to India, met Dharmakeerti, and invited her to travel to Peoria on her next trip to the USA.  I first met her at a sweat lodge a group of women held to honor her.  Roger met her the next day on a day trip to Dixon Mounds.  Both he and I realized that she was a true spiritual teacher.  She held the title of a swami and was revered by those in her country.  Beyond the title she was a warm, caring, genuine spiritual person who we felt would teach us on the next part of our journey.

She visited Peoria twice before Roger’s death in 2001, and our respect and admiration for her only grew.  On her third trip here in the summer of 2002, about seven months after he died, she began staying at my house and my work with her truly began.  Having taken her to the airport only four days before my stroke seemed important, and as I lay in my hospital room the morning after the stroke I found myself remembering her words, presence, and energy.

The thought, “what am I to learn from this” drifted in and out of my mind as I tried to sleep.   When I moved past my fear I realized that this was a major change taking place in my life, and I needed to process and understand this.  As I was crossing the threshold to sleep another thought ran through my mind; when one door closes another always opens, but I realized that I was now in a dark hallway waiting for the next door to open.  With that thought I finally fell asleep.

***

I was awakened by a disembodied voice coming through the speaker in my room asking the “lord to make me an instrument for peace”; after all this was a Catholic Hospital.  Staff arrived on the heels of this prayer to further examine me.  They needed to evaluate my ability to swallow and manage solid foods.  I could do both, swallow without difficulty, and eat solid food.  Next they needed to check my vitals, the IV was still in place, someone helped me wash up, change my gown, and straightened the bedding.  Breakfast arrived but I was not hungry, just thirsty, so I picked at the food and then sent the tray away.

The days I was on the neuro unit are still hazy.  I was inside myself in that dark hallway waiting for the next door to open.  My inner awareness is much better defined than my outer experiences were from those six days.  I have fragments of memories that lie scattered haphazardly throughout my recall of that time there, while my inner images bump around these outer happenings.  

The hallway I was in was dark and one that I had not traveled before.  I could not see my way through it and I stumbled as I tried to find a light or an open door.  I knew that I was lost in an unfamiliar landscape and that I needed to become still and allow my senses to adjust to this darkness.  Given time this would happen; if I would surrender to the situation.  I realized that just like the night in the ER I had to let go in this place and trust that light would find its way to me.  Surrender to life and it would live itself if I were still enough and brave enough to let this happen.

Many people visited me during that time.  Their visits are not a clear part of my memory but are recalled through deduction and reason.  My feelings of that time are confused and lost.  I was wandering in a dark place with no direction.  My body was confined to the bed, a wheelchair, and a side chair.  My thoughts were scared and confused and my spirit was waiting in this dark hallway.   It was perhaps the most frightening time in my life.

When Roger died I was afraid, but I could move about and others could depend on me to be there.  I took courage from others wanting me to be strong and adapted myself to doing this as a way to move forward.  But there, in the hospital, with my body not responding to commands, my mind scared and confused, and my spirit off in a dark place I was alone; separated from me.  

I had felt this separation when we found Roger after he died, but I could physically move, and even though I hung out for several months in this place of dissociation, I could distract myself from the fugue state that now encompassed me.  I was now trapped by a body that could not respond to mental commands, and a spirit that could not see through the darkness that surrounded it.  

I remembered to breathe.  I drew in one breath at a time and released it to draw in another…time seemed to stand still.  I floated in this darkness not knowing or caring where I was or where I would go.  I had lost my way.  I had no desire to live or die.  Either was acceptable to me; I just floated in this place.  I would occasionally wonder about this but would sink back into the comfort of others caring for me.

Events marked time, but time no longer flowed in a linear fashion.  Things seemed to happen not connected to each other.  A doctor and his staff were in my room; he was asking questions of his students and they answered.  A friend had brought me a small pillow in a pillowcase with Chinese characters on it.  This doctor was Chinese and commented that the writing was from his culture but he couldn’t read it.  He identified a young female student and said, “But she can”, and ask her what it said.  She smiled, took the pillow, looked it over, and said they were just characters that meant good luck, good life.

The friend who gave me the pillow and another young friend were in my room when this doctor came in again.  He assumed they were my children; I didn’t correct him; and he answered questions about my stroke.  His words were reassuring and positive, but I was still in the dark hallway and couldn’t believe him. 

I didn’t want to stay in the darkness but neither did I want to leave it.  Another friend who does reflexology came each day to the hospital and quietly worked on my hands and feet as I continued in this darkness.  My friend and business partner was in and out of my room, supporting me, helping me make work decisions, and offering her compassion and her comfort.  I listened, heard, and responded, but inside I was not willing to venture beyond the dark hallway of waiting.

***

I was sitting on this red bench of waiting.  And like Ferlinghetti writes in his poem, I Am Waiting, I was waiting to decide what I would do.  Did I want to die, or did I want to re-embrace life and begin again?  As I sat on this bench I realized that if I chose life it would be a new and very different sort of life; is that what I wanted?  

Suddenly a sparked flared in the dark hallway; a thought entered my mind; to prepare for death I must live life wholly and completely….  I needed to be fully engaged in life to prepare for death.  This spark was momentary but it triggered the feeling of hope.  I knew I was prepared to die, but that death would be from giving up hope, and not from knowing that my day was truly done.  I knew this was a big awareness, illuminated by a brief spark of light in the hallway of darkness, this awareness and the hope I felt faded in and out of my consciousness as I continued on my physical journey.  But it was a spark, an idea, a thought and the darkness became a little less intense.

***

Life on the neuro floor continued, and I think a routine of sorts began.  I can’t be sure, though, because those six days are still shrouded in a thick fog.  I do know that friends visited me because they have told me so.  I did ask for an anti anxiety medication because I felt so anxious, especially at night.  I realize in hindsight that my fear was of falling asleep and waking up unable to use my right side.  Ativan helped reduce this anxiety, and so each night I would take a half pill of this. 

I do have one very vivid memory from those first six days; it was the second or third day that I was in the hospital.  I had talked to both Tad and Jason each day after my admission and although I didn’t feel I was being reassuring I kept telling them I would let them know when they could visit.  I wasn’t ready to admit to them what was becoming clear to me; my life had changed drastically and would not return to what was normal prior to the stroke.  My friend and business partner contacted them and told them the facts that I was hedging on.  Jason, who was only three hours away by car, arrived on the second or third day of my being in the hospital.

On the second day following my admission both a physical and an occupational therapist began visiting me in my room.  The physical therapist helped me stand and pivot to a chair by the bed that had a harness for a Hoyer lift on it.  The Hoyer was a part of the ceiling of my room and this harness could be attached to me and when I was buckled and strapped safely inside I was then lifted back into my bed.  The therapist worked with me doing some light exercises before helping me pivot into the chair.  Once I was seated the PT left asking me to remain seated for at least an hour.  I rang the nurse when I became tired, and the nurse or a tech would strap the harness around me, and use the Hoyer Lift to assist me back into bed.  I was lifted straight up toward the ceiling, and then moved through the air toward the bed, slowly lowered into the bed, the harness was removed, and I could lie down.

The day of Jason’s first visit I was being returned to bed as he walked into my room.  I was laughing at the experience of “flying” through the air.  What is vivid about this memory is I think at that moment he had a clear visual realization of how serious my situation was and the understanding that my life had changed forever.  I looked at him as the shock registered on his face and tears filled his eyes.  There was nothing I could do to change this.  I realize now that he recognized then what I was struggling to accept within myself; another flash of light appeared through the darkness. 

  

***

It was recommended that I be transferred to the rehab unit as soon as there was an opening.  The doctor whose student had interpreted the symbols on my pillowcase told me of this pending move, as did the therapists who continued with daily visits to my room.  On the sixth day there the staff was told that a bed was available for me on the rehab floor.  The staff told me and began bagging the things I had accumulated during my stay there.  I still had the IV port in my arm, the Hoyer harness, the clothes and shoes I wore to the hospital, plants that were not allowed in my room, some muffins that someone had brought me, and other things that I had no idea where they came from.

The nurse could see that I was becoming anxious about this move and said I could have an Ativan.  I asked for a half pill and she suggested that maybe a whole pill would be better.  The time between doses was 4 hours, so I ask if I could take half now and half later if I still felt anxious?  She said no; I could take a half or a whole pill now and repeat the same dosage in 4 hours.  So I took the whole pill because I felt very anxious.

The transportation staff arrived in the next hour and I was moved in my bed to the rehab unit.  This bed was with me through my entire stay at the hospital.  As I was rolling down halls and elevators I was watching the environment as the scenes changed.  Rolling along I became animated, joking and laughing, my anxiety left behind.  I realized that my anti anxiety pill was perhaps working more than I needed, so I just relaxed and enjoyed the ride.

A couple of funny things happened on my way to rehab.  First I was “looppie” on the “ride to rehab”.  Next my friends were helping me sort through what had come with me as the transport people had delivered me and my things to the room and left.  So as my friends were going through my bags and I was deciding where things should go I remember that someone had made muffins and they were probably in one of these bags.  They were; at the bottom and completely smashed.  There had been three muffins in the bag when my friend gave them to me; now there was only one smashed muffin.  I remarked on this remembering I had eaten only one.  I giggled, the drug still had power, as I said one of the staff must have been hungry and my muffins looked good.  Then I stopped my babble, giggled again, and said oops, I had two.

I looked out the windows in my room.  Did I have windows on the neuro floor?  I couldn’t recall them but here on rehab my room had a wall of windows.  They looked out into the night and a lighted place across from my room.  As I watched people glided through a well lit passage way; unlike the dark hallway of my inner self.  As I watched through this my window into life I remarked to my friends that I didn’t realize that there was a skating rink downtown.  How cool was that?  My friends looked at me, followed my gaze, and then replied that I was looking at the passage from the parking deck into the hospital, and the people were riding on the shuttles.  Again I broke into giggles.

Today, as I write this, it does not seem so hilarious, but at that moment it was the funniest thing I thought I had ever heard.  In retrospect I understand that I was coming to the end of the dark hallway and another door would soon open.

There was light at the end of this tunnel.

***

I had survived my initiation through the fire, where the chaff and doss of my life as it was had burned away.  I had entered the transition of being in between places, had lived in the darkness of that tunnel, and now was standing at a new doorway into me.