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’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 .
Once again my hopes are dashed but as you read in the journal entries below I will not succumb to victimization. I am a fighter and survivor and I’m all my children have. I still had goals and dreams that would not come to fruition for two years after an unbelievable crisis for me and the children. Never say it can’t get any worse because life will show it can.
Journal Entry – August – Wednesday 1988
We drove in to Destin three days ago. It is everything he said it would be. It looks like the Caribbean. However, seems like he never confirmed he would come back and work for the company so they hired someone else. We ended up in a small RV park nowhere near any beauty because it was very reasonable.
With no phone and little money left for gas it was going to be difficult to job search but someone had to do it. One of us would need to watch the kids and one of us had to get a quick job. Because I knew I was more driven it was going to be me and because I needed a babysitter, and couldn’t pay one, he is still alive.
I struck out yesterday walking in the scorching heat to whatever business I could find and put in 10 applications. I am desperate find something and settle in a better campground before school starts in about three weeks. I left the phone number of the pay phone in the park hoping I could hear it ring from my camper. About 7:00 p.m. I got a call from the Winn-Dixie grocery store offering me a position in the deli department. So tomorrow I start a job I’ve never done in my life at minimum wage but it’s a start and I learn fast.
This work is so exhausting and nerve racking but I don’t mind that as much as the terrible attitude of the manager. Everyone is related to him that works in the deli but me. My hours keep getting cut and now are less than 10 per week then I found out I will not get a check for three weeks! We can’t last that long. I need fast cash so knew I would need to find a waitress job that would enable me to bring home some money every day. So when I got off today at 4:00 I walked another few blocks where I noticed a Western Sizzilin restaurant. They were really busy so I knew tips would be good if you were fast and efficient and I was. I weaved my way through the customers and asked for the manager. I explained to him I was desperate for work and would even just work for tips. He said they were not hiring but to fill out an application and he would pass it on to the owner. I did and started my walk back to the trailer park feeling way more exhausted than before. Thank goodness tomorrows my day off.
At 11:00 a.m. the pay phone rang as I was coming out of the shower house. As I stumbled trying to get to it and breathlessly said hello, a voice asked for me. I acknowledged it was me and the female voice said “Do you still want a job at Western Sizzlin”? I said of course I did. The voice said, “Well I’m the owner and I need someone by 3:00 today to work until close.” I’ll be there I said. I am so elated, so relieved and so grateful. I called Winn-Dixie and quit.
It never occurred to me that I didn’t have any waitress clothes. I put on a pair of kakis and a cream colored blouse, my cleanest tennis shoes and hoped they would give me a break until I got paid. The boss was a former Virginia Slims model about 6 feet tall with white spiked hair. She looked me over and said I would have to get black pants, white blouse and black shoes soon as I could. She said she was two waitresses short so I would need to take both their tables which would be 22 tables. I said fine as I was not about to let this job slip away. Friday night was packed but I never missed a table. I stumbled home a little before 1:00 A.M. My back aches, my feet are on fire, my head is throbbing but I have $176.00 in my apron. And, tomorrow is their busiest night.
My plans are going to come together. On my day off I’ll start looking for a nice campground near the ocean with facilities the kids can enjoy and schools nearby. By Christmas break the kids and I will have the money to finally go home to Phoenix and lease a home never to roam again.
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.
It is so easy to judge the homeless and so easy to become one. I was there once and it was an almost impossible climb back up. I sit now in an in a nice little mobile home I bought myself to make sure fate doesn’t leave me homeless ever again. Retired after over 26 years of Disability Advocate work, I am reading an old journal of mine from 1988. It is astonishing where the journey takes you and the strength you find along the way. I’ve decided to share these musings in my life in hopes of empowering someone else to never give up. A year after this entry my life would change, becoming even more devastating, before I could start my uphill climb to a normal life.
Journal entry from 1988 –
Another summer almost gone. The seventh one actually and no permanent home before school starts. Another year in the 30-foot travel trailer, the box of tin on wheels as our friends call it.
There is never enough money saved to pay the deposit and first month’s rent on a house let alone utilities. We always come close to this dream but then a child needs shoes, the truck breaks down, someone gets an ear infection and the pot gives reluctantly until it looks more like gas money than homestead money.
So, we sit again in a campground on the southern coast of Mississippi where the heat and humidity turn you into one big sticky fly attraction while pretending to be just another snowbird vacationing for the winter. The job of managing the KOA campground pays slightly more than the lot rent but it’s better than nothing.
1988 and the pot we do have to piss in has a leaky holding tank again. It’s not that it’s all been bad. We finally upgraded this month to a fifth-wheel trailer that is only six years old and close quarters have forced us to bond in ways reminiscent of earlier American life.
But, on those sweltering, muggy nights when trying to sleep is the most oppressive thing you can do, I sit on the picnic table top under the awning and dream my dream of a home I once had. As tears crawl ever so slowly down my hot cheeks I realize how easy it was to become homeless and how hard it is to try and climb back up
Hell, I thought, what do I need a house for anyway as I pop the top off my Miller Lite. “Buck up, there are people worse off than you” I hear my Mothers voice echo in my ears as I light up my last cigarette in the pack. My heart opens momentary to store another sorrow. Maybe I’ll just sleep outside on the lounge chair tonight.
Anger days and sorrow nights — that is my life. If I just had lyrics I would be a great country song.
In 1989 my life changed forever. I did not realize yet, as I awoke from a coma, that I would never physically function the same again. I did regain walking with the help of adaptive aids but remained weak from nerve and muscle damage which remains. After I was home recovering I wrote the musings below but I have since learned hindsight is worthless except for beautiful memories. My life turned out to be wonderful with joy and successes I could have never imagined possible.
Every once in while I drag this prose out because it now makes me smile that I have come so far in my ability to appreciate life with no regrets.
If I would have known,
I would have ran one more time
I would have raced until the wind took my hair,
Until the landscape was but a blur
Until my muscles were used up with joy and exhaustion
My heart beat thundering in my ear
My skin glistening with sweat
My eyes burning from salt
I would have jumped with abandon
Every stump, every fence,
every moss covered rock
I would have hiked a lonely trail
And walked after dinner until sunset sent me home
If I had known,
I would have ran one more time.