near death experience
I’ve thought a lot about change lately. Like they say it is the only constant. My life has been full to the brim of it as long as I can remember. So much so that I got to where I expected change, even looked forward to it like an old comfortable blanket. Although, I wasn’t always that way I just adapted to the ride. I was married young by today’s standards at 18 years old but was more than ready to settle down to a warm home with a picket fence with children and a smattering of dogs and cats. I yearned for stability because it felt safe and reassuring. However, it didn’t put demands on me to take risks or to explore who I really was underneath the persona of the perfect wife, mom, daughter etc. Then little changes began to happen like the first daughter and the second and the third. Then a tsunami of a change occurred in the form of a divorce.
This change brought me to my knees and forced me to reach way down into a place of strength and courage I did not know I possessed. But I found out I did possess this power and it was my first inkling of who I was and what I might be capable of. Change became a normal part of my life after that. Struggling, surviving, always looking for the light at the end of the tunnel taking every opportunity offered to create what I lost. We travelled like gypsies over more than a dozen states looking for stability but change was always right behind us as I was trying to run from my heart pain.
Then in Florida I got sick, really sick and almost died. The illness left me with many disabilities. My youngest daughter was diagnosed with Hodgkin’s during the time I was in a coma. We all made it through, lucky to be alive, trying to adjust to the biggest life change yet. There were five of us now with the addition of a beautiful son six years ago and I was in charge of their lives regardless of my new disabilities. By now I was a fighter and a survivor so I was determined to fulfill whatever mission God saved me for.
After a year learning to walk and drive again and my daughter was back home and in remission, the kids and I moved to the Midwest to be near my family. There I found what I was saved for when I took a job as a disability advocate for a civil rights organization. This was a perfect platform in which I could redirect my anger and survival skills to assist people with disabilities to thrive and become independent in a society bound and determined to warehouse them. These were my people and I instantly knew I had a responsibility to play it forward.
I just retired after 26 years and if that sounds like I finally found what I lost so long ago with the divorce you would be wrong. During those years the changes kept coming with challenges, deaths of loved ones, raising teenagers, moving residences constantly to adjust to new developments good and bad. I know now that what I forever tried to replace wasn’t mine anyway but rather a springboard for me to jump from in order to explore and use the essence of who I really am in this life.
I am now embarking on a new adventure with the same mission of reaching out to humanity only on my terms. It is a partnership with others who are just as dedicated to change society’s perception of people with disabilities as I am. Change has become my friend and although I can finally relax with the children grown and a successful career put to rest I welcome change when it comes for the opportunity it is to grow spiritually and intellectually. Managing it becomes an expanding drill but the way we embrace, oh yes, the way we embrace it, defines our future and ourselves.
1991 & on –
Life now is all about “bucking up” and getting on with our lives. My daughter and her sister came home two months after I did. She is in complete remission. I can walk with crutches now but can only use my thumbs because of the contractures. I taught myself to drive wearing leg braces and finally kicked my ex out. I am apprehensive on my own in my condition but I have faith I’ve done the right thing. The kids and I are all together again and that will get me through anything. I know someone is still by me from the other side as I can feel the presence at times and when I am conflicted over a decision or direction I want to go the knowledge is there. It is not a voice like it was in the coma rather it’s like intuition only more persistent.
I trusted it whatever it was and knew something was waiting for me to fulfill. During the next year I learned to walk with a cane and do most everything with my hands even though they were still in contractures. We all licked our wounds physically and emotionally and counted our blessings. I knew it was time to move toward my destiny but did not know where that was. My old plan to return to Phoenix didn’t feel right anymore. Then one evening sitting with the kids on the pier watching the crashing waves smash the shore it came to me. We had relatives who lived in Missouri. I had only drove through the town one time but I could not shake the feel of urgency. It was like a divine decree.
There was no way I could ignore this powerful pull. So, I sold the RV dirt cheap and everything in it. I bought new tires for my old 79 Ford pick-up, filled it with gas, three kids, two cats, clothes and one TV and headed north. I understood this was my destiny and I would make it. Within a week we rented our first house in six years. We had finally come full circle. Money was very scarce with just social security disability and a little child support but we were free, together and alive. It was good to be with family again. We had been through so much that the struggle to survive now was nothing comparatively.
But, surely this was not what I was pulled here for. One morning while enjoying a strong cup of coffee that powerful tugging returned. I knew I had to go find a job. My family thought I was crazy with all my complicated disabilities but I could not deny it. I was apprehensive of course. My only transferrable skills was my mind and my life experience. Everything else was braced up, atrophied or contracted. Nevertheless, I trusted this direction of my destiny. I was afraid the job search itself would do me in let alone a forty hour work week but by now I knew how to push through my egos fear.
My second interview was with an organization called Southwest Center for Independent Living. I was hired with a hand written resume in my hand but had no idea why or what they even did. It all soon fell in place as I learned they empowered people with disabilities to live their dreams by removing barriers physically, attritional and mental. All the lessons I had overcome, the struggles, the despair, the determination are now going to be played forward.
I have just retired after 22 years of empowering so many people with disabilities to see their potential and their self-worth, a career I never dreamed of pursuing. It was the most rewarding thing I’ve ever done in my life. I wondered what I’m to do now with all those years of working in the disability field and the intertwining of my life experiences. I had entertained the idea about blogging because I have always loved to write but knew nothing about blogs. About six months before I retired I got an email out of the blue from a blogging site so I looked into it. I created anyoneteachone.com and here I am. I’m still playing it forward and hope I can until I cross back over.
Never give up your dreams, never believe in prognosis and believe with all your heart the enormous power you own when you acknowledge you’re potential.
Living inside a serious illness puts you, literally, into someone else’s hands. You lose a sense of autonomy and power. You are isolated, sealed into the private rooms of your own mind. You are in excruciating pain but it is hard for those outside the illness to understand, even those extensively trained for such work. Minutes have become the same as hours. There is no escape, no distraction, no peace.
I had some great nurses and I had a few who made me feel like I was just a patient with lots of needs they did not have time for. Those nurses came in handled me roughly, never made eye contact, completed their tasks and left without ever speaking. I could only move my eyes not yet able to speak. I was a prisoner without a crime.
I cannot emphasize enough how much I wanted someone to look at me, to touch me, to remind me I was still part of the human race. Even after endless painful turning of my body that had wasted to skin and skeleton, I longed for physical touch. Tears rolled down the side of my face as I tried to remember the last time someone caressed me. It was long, long ago before I was ever sick before I lost my first love.
All my life my Mother had fought for me, had kept me safe. At even the hint of harm she threw open her wings of courage and fought. But, she was not here and for the first time in my life I was starkly vulnerable and way too debilitated to fight for myself. I needed to know there was someone who would fight for my life. I became more afraid that no one might care than I did of dying.
I thought of my children and where they could be. Why haven’t they come to see me? I needed to look at them, to hear their voices. I became angry locked in this body. The more I thought of my children the more infuriated I became. I felt a rush of power come over me, a fury that pushed me over some invisible barrier and busted through the wall of helplessness.
And then, this vehicle that had failed me, that the doctors said had no hope of recovering from the severe damage the sickness had ravaged on it, began to heal itself. My vitals started to stabilize; my heart began to beat stronger and with balanced rhythm. My kidneys began to function and my ability to push breath began triggering the ventilator alarm forcing them to start weaning me off of it. I was visibly awake and aware. I was back, I knew it, and at that moment my cup runneth over with the desire to live again and I was going to fight with every cell in my body.
Out of Body Out of Time
It is now the day before the deadline to remove me from life support. My body is in the same critical condition. The doctor has told my ex to go ahead and make funeral arrangements. They have done all they can do. But life has a way of flexing its muscles just when you think there’s no hope. I am about to be reborn and enter a life full of purpose. However, before that can happen struggle and determination like I’ve never known before will have to be conquered. It will stretch my mental and physical endurance to the breaking point. It is a destiny I had never even considered and a 360 degree turn of where I was going before.
Dr Recall – end of March 1989
The doctor just left a meeting with the hospital ethics committee and met with my ex to confirm the decision to take me off life support was really what he wanted. The other option would be to try and move me regardless of risk to a facility appropriate for long term critical care. The doctor stated he felt I would not make the trip before I coded but wanted to put it as an option. My ex stood by his decision. I think he was afraid I would linger there the rest of my life.
My Spirit – end of March 1989
I realize, beyond doubt, I have to go back. I must answer my destiny whatever it is. The resistance is pulsing within me viewing that pitiful body. What could I possibly give to humanity now? All the questions, all the ambiguity and perplexity would not be answered on this side. I had to live it.
My Spirit – evening before the date with death
Focusing back in the body was seamless but painful beyond belief. I have made a commitment to follow my destiny so whatever it takes I must do. Memories from my life started to flow back into me like a tsunami. Where are my children? What happened to me? Where am I? How long was I asleep? I cannot talk or move. The nurse notices my eyes are open and I hear her calling for the doctor. The ventilator alarm is screeching because I am breathing, although shallow, and trigging it because the breath I take replaces the machines. It thinks I am not breathing. Medical staff rush in to take vitals and re-evaluate my condition. No one expected my recovery and they are in amazement.
I am still critical but this is the first sign of improvement in three months and it is only the beginning.
Nothing is improving my condition including time. It’s the third month of the coma and I remain unresponsive. When patients show no improvement they are usually transferred to a nursing home or rehab but there are no nursing homes around that can deal with such an unstable situation. There is a rehab in Pensacola but I am too fragile to transport. The financial office is voicing their discontent because it is costing a lot of money to keep me alive. They are pressuring my doctor to re-evaluate the justification of continuing life support with apparently no hope of recovery. He is in a precarious situation so he lets the decision rest with my ex-husband who he thinks is my legal husband. My life literally lies in the hands of the man I was trying to flee from.
My daughters have been flown back to their father in Arizona as my youngest daughter at 13 yrs. has just been diagnosed with Hodgkin’s Lymphoma stage 4 while I am in a coma. My son remains with his dad here in Destin who I must give credit has stayed with me instead of fleeing with our son. My relatives are unaware of how critical I am and live across the United States so are not available. I am basically alone now.
DR Recall – March 1989
My body remains in limbo. The life support equipment is sustaining my life. I cannot live without it. The doctor must make a time line as to how long to continue treatment with no improvement and give to the financial department who are now insisting there has to be an end to the money being spent on this expensive care. The dilemma he sees is that I have brain activity but nothing else. He confers with my ex-husband who breaks down and states I never wanted to be kept alive on machines and gives his permission to pull the plug by next week if there’s no improvement. This mercy killing has now been put in place. Time is running out.
My Spirit – March 1989
I touch the colors in sequence like I’m instructed and the melody fills my Soul then I am back but not in my body. I watch the nurses caring for me. The body is in agony which I can feel. The nerve endings are hyperextended and even a breeze as the nurse walks by is excruciating. My body is on fire from a raging fever and the muscles ache from not being used. As the nurses attempt to reposition me my back feels as though it will snap in two. My hands are curled into contractures. Nothing is functioning on its own. I do not understand why I came back and I do not want to stay. There is too much devastation here.
I turn away and I am back in beauty and peace. This is where I want to remain. But I am conflicted in my decision because I have a feeling I am not done with this life. I have not finished. It is so ethereal sitting here in front of the magnificent alabaster buildings. I ask in the stillness of the mist why I am unsettled and I hear it say, because you have not given all the gifts you intended to share this lifetime. What are they? I ask. You will discover them it says if you return. But, I don’t want to still. I am aware the body cannot last much longer and then I will not have a choice. The voice speaks again and tells me if I choose to return there will be guardians to watch over me and guide but I am also welcome to stay here. “I am afraid”, I say “that the body is not fighting. It seems to have lost its will to live, its strength and determination.” “That’s because it does not possess those things within its vessel, you are carrying those things within you and unless your Spirit returns your vessel will fail to thrive. Every single Soul has that choice.”
I lie motionless like I have for the last month and will continue for the next two. Several times they tried to make plans to transfer me to the larger and the better equipped Humana in Fort Walton Beach but every movement of my body triggers the alarms that monitor my heart. So I remain in the small satellite meant for minor illnesses and procedures. Other patients that are considered complicated are quickly transferred to the big Humana. Everyone is stepping up to the plate to take care of my rapidly deteriorating body that is determined to die. But, I remain unaware as my sojourn spurs me on to mystical realms I’ve never even imagined.
DR Recall – February 1988
My heart is in extreme danger. It is in congestive failure, it is double its size and it is infected. A heart transplant is considered and I’m put on a waiting list but only if I recover enough to withstand it. My lungs are still not able to function on their own. My kidneys have ceased to give output and I am on dialysis. I am on the strongest kidney medication available. I have a feeding tube, a surgically inserted vent tube and four IV’s flowing blood, electrolytes, pain medication and nutrients to my failing body. Every day there are new complications on top of the existing ones. The doctor has already spent many all-night sessions expecting me to code at any moment like I have twice before.
My Spirit – February 1988
Colors, beautiful bright colors that I must chose correctly. The colors represent tones. I’m spinning and I feel lost but the Voice directs me. “Watch”, he says, “You know this you have just forgotten”. He touches a color one at a time in some sort of sequence and a familiar melody comes forth. The tones are connected to a color each color producing a tone. The spinning increases speed and the whirl creates a circle. We don’t go to a place rather the place comes to us. It is strangely recognizable with alabaster buildings that look more like holograms than solid structures. The beauty is luminous but unpretentious at the same time.
I want to touch them but the Voice says, “no need for they are a creation of your Spirit, there is no solid here nor time, or past or present or future there is only now.” “You can be any age, go anywhere, experience any sequence of events you desire.” I try this concept out by thinking of an immense ballroom with white marble floors with thousands of tiny azure stars imbedded. I create a rendezvous with a handsome partner and we glide on the dance floor to an orchestra. I am over whelmed with happiness and love. “The language here he says is “feeling” not thinking, there is no need for ego.”
I think of a question that I have been afraid to ask because I think I know the answer. I ask if I am dead. The Voice says,” absolutely not as we are eternal beings, death is a concept of earth society created out of fear of the unknown.” Why am I here then I wonder. He says, “Because you are placing your focus here, when your desire is to return you will focus back into the physical, it’s as simple as that.” So now I wonder what my intentions were. I want to stay but something is pushing me forward. I have not yet learned all I need to know. Can I visit my body and come back? I ask. “You have always been able to do that,” he explains. I’m not sure why I need to do this but the desire is over powering even though I know I will not stay there.
“I can’t breathe!” is the last thing I remember saying on January 1, 1989. My left lung had collapsed and my heart was beginning to starve for oxygen. Somehow my ex-husband got me to the pickup and drove to the emergency room at the small Humana satellite hospital near the campground. My eyes try to open in the sterile room I’m in but they won’t comply. I am spinning from vertigo and they are trying to put something down my throat. It feels like a tube and it hurts. I am in and out of consciousness but I am aware that I am totally in the control of other people. The rest of this story is a chronological history of what was happening outside my body (DR Recall) and what my Spirit (Me) was experiencing on the inside.
DR Recall – January 1, 1988
My left lung had collapsed and my heart was in tachycardia. They attempted to use a scope to see if I was bleeding internally but had to abort until I was stabilized. They put me in a trauma room to observe me. After an hour I opened my eyes in a stare and began talking in what seemed to be another language but no one recognized what it could be. I spoke like this for approximately 5 to 10 minutes then in English said, “I am going now and won’t be back.” At that moment I went into cardiac arrest and was rushed to intensive care and put on life support systems including a ventilator because I was no longer breathing on my own. Extensive blood and toxicology tests were ordered.
My Spirit – January 1, 1988
I was in no pain whatsoever. A film of green the color of sea foam floated down and covered my body. I could not feel it but rather sensed it. If Nirvana was a color it would be this. I felt I was in a kind of holding pattern. I had no desire to leave this place. I had no fear. I was alone but not alone. Like a baby being rocked by a loving mother I was content and I was safe.
DR Recall – Mid January
Toxicology and blood work gave no indicators that would cause the life threatening symptoms. The doctors are stumped as to how to proceed. I had lost huge amounts of blood by throwing up while unconscious so extra blood is being given, the heart remains a huge problem as it is inflamed and twice the normal size. The kidneys have shut down and dialysis has been started. The lung is being drained but both lungs are unresponsive. I evidently tried to pull the vent tube out and all my IV’s by thrashing about. An ICU nurse on each shift has been assigned to me alone. I am monitored 24 hours a day because my condition is so unstable.
My Spirit– Mid January
I’m traveling to a beautiful lush green environment with soft rolling hills and cottages lined along the road. There is light shining out and I can hear people laughing and talking. I cannot see myself but I am aware I exist. I cross a small bridge and walk into the first cottage. I do not feel like a visitor. I feel like I belong. It’s like I’ve always been there. I recognize my relatives that have passed many years ago. Someone from behind me is saying these are your people who you have shared your life with. It feels like home but I don’t know why. I enter the next cottage with more happy people and recognize them also. Some were childhood neighbors, friends, teachers and some just people I met once a long time ago. The voice explains that these are people who made an impact on my journey. It makes no difference the duration of the encounter he explains, only the significance of the influence on your soul. I want to stay here but feel a momentum pulling me away. I know I have died but it has no connotation to it. There is no sadness, no regret only acceptance. So I trust where I am being taken.
I’m struggling now to find out what is wrong with me. The chronic pain is peeling off the layers of my strength and determination. Things are deteriorating in my body in other places besides my stomach. I am no longer hiding my discomfort but I am trying to hide my fear. I know now my dream of leaving will have to be postponed until I’m better. I’m still thinking this is just a bad case of something and I will get better. Losing control of my body is causing me to lose control of my life. I’m swinging between despair and determination as the realization I am helpless covers me like a dark shadow. These are the last entries I found before I will slip into a coma. I will tell that story too from the doctor’s recollections and from mine which was a voyage to another realm.
Journal entry – November 1988
It’s almost Thanksgiving and I’m still living with this awful pain in my stomach. I’ve missed my first day of work today but will drag myself in tomorrow. I feel weak and unable to chase down the waiting orders as fast as I did before. My old black waitress shoes from Walmart feel like I’m wearing concrete blocks. I quit using the huge food trays because I can’t seem to lift them stacked with earthenware platters laden with food. Of course this means I have to make many trips back to the kitchen instead of just one. I am falling behind here at home with chores. The girls are helping by doing the laundry and getting their little brother ready for school. I’m disgusted with myself for getting sick.
Journal entry – December – 1988
I missed two days of work in a row. The boss is concerned and insisted I go to her doctor or my hours would have to be cut drastically. So I went today and he took lab work but nothing stood out as a problem. It was $155 that I was guarding in my travel money but I needed those hours at work. He said I needed extensive tests that they could do in the hospital. That is impossible of course with no insurance and needing to be here for the children. I am consumed with fatigue tonight and my muscles quiver like Jello to keep me upright.
Journal entry – December next morning
I woke this morning still exhausted and when I put my feet on the floor I could not feel them. They were numb and tingling. I rubbed them, elevated them but nothing works. Whatever has invaded my body is advancing every day. I am now truly scared. I want so badly to get through Christmas as it is a favorite holiday for us. I tried to get dressed but I am so feeble it’s impossible. I have no fever so must not have an infection I’m thinking. My body is literally shutting down. Reluctantly I asked the kids to call me in sick to work.
Journal entry – Christmas 1988
I made it until Christmas but did not really enjoy it. My travel money has dwindled down so when I recover I will have to start over, Maybe we can shoot for Spring Break. I never returned to Western Sizzlin because of my condition. I tried to work a few hours in the KOA store because I thought sitting on a stool would not be hard physically but as I stumbled home I fell and the kids had to help me up. My life is closing in on me. I’m depressed and terror stricken that I will never get better. My legs as well as my feet are numb now. My hands and fingers feel like they are asleep and my skin is hypersensitive. I can’t sleep, I can’t eat and I feel like I’m dragging around an extra 200 pounds. I’m trying not to cry but foreboding envelops me.