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.
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.
The beginning of the crisis has begun only I’m still not aware how my life is beginning to slip slide away. October will be the last full month of work for me. Like seeing the red engine light come on the car dash board you are not immediately alarmed but concern is in the back of your mind. If you don’t hear unusual noises or see smoke you continue to drive and check it out later maybe on payday. That’s how I handled this approaching illness. I had no medical insurance but knew when I got to Phoenix a good job would provide it and I would get the stomach problem fixed for good. I could see the finish line and attempted to drag my body to it.
Journal entry – Early October 1988
The truck broke down last week and no money for the part it needs. I refuse to dig into my secret travel money so will have to take it out of tips. Since I now have to take a cab to and from work I try to work double shifts. The cab is $15 each way so it doesn’t make since to just make a little over cab fare. I should have enough by end of the week for the part to fix it. It’s been frustrating to get a cab every night then at least every other night have him wait at a grocery store so I can buy a few necessities to keep the kids fed. On those nights the meter runs me an additional $7 as he waits. My usual abundant energy is waning from the extra work and stress. I can’t finish a shift without eight to ten Excedrin and a pot of coffee anymore and my stomach remains a fire pit. I feel I’m running out of steam. I know I’ve worked my body way beyond its normal limits for a long time but it’s not too much longer now. I have $900 saved.
Journal entry – middle October 1988
Truck is fixed so no more taxi thank goodness. I bent over in stomach pain today at work. Seems I can’t keep anything down. The boss insisted I go to emergency room so I promised I would right after work. $75.00 later they said I probably have an ulcer and sent me home with a diet sheet and Maalox. The only time the pain is halfway tolerable is if I don’t eat. I don’t understand why I’m not getting better and every day it’s harder to push through this agony. Maybe it’s just a bug, maybe it will pass in a few more days. I’ve always been healthy surly I will overcome.
The stars are out tonight and there’s a soft breeze. It’s not like the night sky in Arizona where the stars seem so close and the brilliance takes your breath away but it is a different beauty. The pain is a constant reminder that I probably won’t be able to work double shifts or weeks with no day off and that slices through my ego like a paper cut. Only six more weeks and things will be very different.
These are the last entries where I do not suspect anything is wrong with me. I’m in a race to be free and running my body into the ground. I’m so close to my goal but the condition of my over used body would be defensive against just about everything. I’m destroying my body to save me mentally.
Journal entry – End of September 1988
Fishing tournaments are in full swing this month so the restaurant stays packed way beyond closing time and the tips are rolling in. This is my first night off in seven days. Waitresses are dropping like flies from the brutal environment of carrying huge platters of steaming hot lobster, steaks and the weekend special red snapper from the overheated kitchen. Most of the customers are drunk by the time they dock and decide to eat and become belligerent about getting food and especially beer refills. These are huge parties of 15 to 20 people and my section alone has 18 tables. I had one group tonight with 31 adults and four children. This is what waitresses call “blood money” because it takes that and more to endure for your tips. But I do endure. I try not to think about the sweat running down between my painful shoulder blades as I heft another tray loaded to the hilt with burning hot plates then swing it gracefully down to a stand. How you do this and the courteous way you present depends on the amount of tip.
I have $550 saved for our traveling money so far. The rest pays bills and school lunches. I am determined to save at least $1200 by end of summer because winter is the extreme slow down for tourist towns. About 8 weeks or so it will be over for any good business until next spring. So although my headache never seems to go away, my stomach feels like I might have an ulcer and I live with leg cramps every night from over used muscles I will not give up. My dream and the kid’s stability in a real home is too important.
Arguments continue every night and day. He doesn’t know I’m planning to leave soon. He makes very little money as a maintenance man at the campground. I usually come home late exhausted from work to find him sitting around the fire pit in front of our trailer with three or four women who are tanked and think he’s wonderful because he fixes everything for them. It’s disgusting but it’s almost over. Little does he know very soon I will wave good by .
Things were looking up as my work at Western Sizzlin continued to bring money in daily. The work is punishing but I have my goal of moving back home to Phoenix soon and it motivates and pushes me along through the fatigue. The relocation to a KOA camp site has relieved some stress. Only four months to go but I don’t know it will be the last four months of living in a non-disabled world. Just around the corner disaster waits.
Journal entry – late August 1988 –
Been too busy and too tired to write in this journal lately but today is finally a day off after eight straight days. They finally hired enough waitresses to cover. The tips have been consistent allowing me to save enough to upgrade to the nice KOA very near the ocean. We are moving before dark. Next Monday I will enroll the kids in school. The owner of the restaurant likes me a lot but that’s because I work 150%. Almost all the staff are just working their way through college or supplementing their husband’s income. They are not as hungry and desperate as me so where they lag I over compensate. I know my body at 42 can’t do this forever but I just need to endure until Christmas break. When we get to Phoenix I will use my brain instead of my brawn. I can put my Associates Degree to work and even go back for bachelors.
I was hoping to get rid of him now but the money is on the night shifts so I need someone home with the kids. We argue daily with a never ending struggle of control but I must endure four months then I can fly. I will never understand why weak men seek out strong women then try to control them, must be a death wish.
Monday morning –
Love the KOA campground. The kids and I just walk a block to the ocean. There are lots of things to do like a swimming pool, game room, little store, huge community fire pits and a big playground. The kids are all enrolled in school which starts in five days. A bus comes right into the campground. It took almost all my tip savings to relocate and buy school clothes and shoes so I need to get back to work this evening to replenish my cash. I’m so grateful for the little child support from the girl’s father every month as it helped to buy school supplies and some extra clothes. I count every blessing. The kids are healthy and happy and I have a strong body to accomplish my dream and an even stronger will power to stay on task.
This is the next journal entry after “Being Homeless” from August 1988. We are still in the KOA campground on the gulf coast of Mississippi. An opportunity has appeared that calls for some serious consideration. We have lived at the KOA for the last few years and it is the only place we found any semblance of stability. But, I do not fool myself into thinking we are not still homeless. I do not even suspect the life altering fate that awaits me.
Journal Entry – Aug 1988
Apprehension nags at the corner of my mind today. He has come back to visit the kids with news he has an opportunity to make some great money hauling tons of ice to the fish houses all along the coast. The main headquarters is in Destin, Florida and he describes beautiful beaches with white sands and emerald green water clear as a swimming pool. He says things will be different and so much fun to be had by the kids. Of course, I’ve heard the job promise before which is how we became sojourners hopping around following the next great offer.
Even though the apprehension won’t shut up I am considering because I am so desperate to leave this depressing place I am trapped in. I feel like a contained animal that just spotted a hole in the fence. I have no attachment to this place and won’t miss the stink from the slimy bayou that lingers under the dock, the green velvet mold that covers anything standing still more than an hour or the sweltering humidity that enters your body and lies there like an old heavy wet rug.
The kids are now excited and want to go and heaven knows they deserve some happiness. If the job falls through I’m pretty flexible and can work anywhere from secretarial to restaurant. So, although leery, I make the decision. But, I wonder what lies ahead? Will he come through this time? I guess if I get stuck at least it’s in a healthier environment. In two days we will be pulling into Destin, Florida with new hopes and dreams which have become dog eared from dragging them around.