Why, why, why are so many government workers rude? I’ve pondered this question all my life but especially during my 26 years as a disability advocate. I experienced people who conquered obstacles so difficult that the impossibility of it was stunning. They came in with pride not regrets of their condition because they had beat the prognosis. Then these same beautiful souls would get humiliated, ignored and embarrassed by some worker at social security, Medicaid or food stamp office as if they were slackers and loafers instead of incredibility courageous and independent. Why would anyone want to disenfranchise another?
There is no satisfactory avenue to complain about staff. Their jobs are very secure as they are protected under the Federal Government Employee’s Union. It is almost impossible to get fired as long as they perform the essential functions of the job which is correct and timely paperwork and does not include politeness. Performance reviews are based on job duties alone and merely being rude to a citizen needing help apparently doesn’t qualify as dereliction of duty. Essentially you’re in for life unless you want to quit.
There is absolutely no incentive to treat people like human beings. In the private business sector these individuals would not last a day. You wonder if these civil workers are products of lower upbringing and enjoy their temporary power over someone who doesn’t understand the overly complicated system.
There needs to be some drastic changes to a system that encourages efficiency over empathy. The government needs to hold their staff to a higher standard and eliminate the “us vs them” mentality. There are many good staff in these government offices also but they are overshadowed by the ugliness of their co-workers and suffer the same reputation they don’t deserve.
A few things you can do are let the supervisor know how you appreciated a good staff. Complaints never go anywhere but compliments do. For bad situations get in touch with your U. S. Congressmen’s office. Helping constituents cut through red tape is the kind of stuff that makes happy voters.
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.
April – 1989
Recovery was slow and tormenting. It took almost two weeks to wean me off the ventilator that had pushed oxygen into my lungs for 91 days but my lungs were ready to take over now. They finally cut my medications back so I’m beginning to think more clearly and remember a few things before the illness. I have permanent systemic nerve damage and severe hand contractures, I may or may not walk again and I cannot raise my arms above my waist, I still try to make sense of what happened to me and why but I’m ready to push through whatever it takes to get my life back.
Soon as my ex entered the room I demanded he tell me where the children were and why I have not seen them. His shoulders slumped and he looked at the floor which immediately raised my anxiety level. He then explained our son was with him but the girls are in Arizona because my youngest daughter, 13 years old, was diagnosed with Hodgkin’s Non-Lymphoma stage 4 the week I went into a coma. A parent had to sign for treatments so her father came and took her and her sister back to Phoenix.
I stare at him in disbelief but I can tell it’s true. My mind is spinning and a silent primal scream comes from a place so deep in my Soul that I am trembling. Finally I find my voice, “CANCER? CANCER”? I thought my life was in chaos before but this is bedlam. “I have to talk to her, I plead. “No I have to go to her”, I yell. I’m thinking of three days ago when I sat up for the first time and only lasted a few minutes before passing out. I am beside myself with agony with the realization of the debilitating status of my body. This can’t be happening! We were all a healthy family just last summer. Its late evening so the nurses said they will help me call her in the morning and that helps to calm me a little.
I can’t sleep from overwhelming fear for my daughter. I shut my eyes when anyone comes in so they won’t give me any strong medication. I can’t wait until morning when I can hear her voice. But, sometime during the night they caught on I was faking and without my knowledge gave me a huge dose of valium through my IV. I was out for two days. Another two days of my life gone. I was beyond furious. The realization they could take complete control of me “for my own good” was a sickening reality and a horrifying one. The only other facility legally allowed to do that is incarceration.
I demanded they hold the phone for me to call my daughter. I felt better talking to her. She was finishing her chemo and radiation in a few months. I wanted to hold her, to rock her. She was so brave and so strong and without her mother. I promised soon as I got out of this hospital and she was finished with treatments she would come home. I called her every night.
Anger was my motivator and I used it to push myself to overcome each physical barrier that would qualify me for discharge. I was in constant fear they would drug me again “for my own good”. I tried to act the right way, say the right things, and not ask for pain medication. It was more stressful than the permanent disabilities I was left with. I lied about having home supports, going to an accessible house and a scheduled appointment with rehab in Pensacola. I was actually going home to an RV, no supports except for a 7year old son and an ex who I continually fought with. There was no way I was going to a 6 month rehab treatment as recommended. I knew by now this satellite hospital had no follow up staff to verify my story. I wanted to bring my daughters home as soon as possible and I no longer trusted the medical field to compromise with me or to honor my decisions.
By the beginning of May I was finally going home. The real struggle was just beginning.
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.