I Will Never Forget: Guest Post for the International Day of Mourning and Memory

I received an email from a woman I met many years ago when we were both much, much, younger. She wrote this and sent it to me, kind of a personal reflection on the International Day of Mourning and Memory. I felt that it was too powerful and too important a story for my eyes only. I asked her for her permission to put it up here on my blog and she has graciously allowed me to do so. I am very, very, touched by how people have taken this day so seriously and spent time thinking, remembering and reflecting. 

I Will Never Forget

Susan Ludwig-Goharriz

It was almost my first job after graduating from University as a nurse.  There had been an aggressive campaign to recruit new graduates to the State School.  The School was like a small community – at one time housing thousands of individuals with developmental disability in a cluster of “cottages.”  In the same community was a hospital – used to care for the most medically fragile of those individuals as well as any individual from the cottages who became ill.  I would be a staff nurse in this hospital.

The school was supposed to be “progressive” in its care model.  It was an attempt to offer “institutional” care in the most “home like” surroundings.  The hospital was supposed to be a place where care providers were experts in caring for the various specific needs of the community members.

The reality was starkly different from the model that was touted to the country that was still embracing the Kennedy administration’s attempts to give better care to the disabled.  It was a country that was still reeling in shock at the ending of that presidential life . . . but still trusting in the capacity of institutions to make decisions about those who were deemed unable to make their own decisions.

Our new patient was admitted from one of the cottages with a serious ear infection.  Green drainage ran down his neck – so contagious that he had two infected fingers where he had scratched at the itching drainage and the hang-nails on his fingers became angry red and swollen.  He was among strangers in the hospital – and the staff genuinely tried to do what they could to support him in his new environment.

The doctors on the floor were not competent to practice in the community.  They had not passed their State Board exams and so their practice was restricted to institutions.  My strongest recollection of them was when they reported me to my head nurse because I had refused to stand when they entered the nursing station.  Their arrogance was only surpassed by their ignorance.

The plan of care for my new patient?  Well, there was virtually no plan of care.  They prescribed topical antibiotics for the sores on his fingers – and oral antibiotics for the ear infection.  There were no lab tests ordered to be sure that the antibiotics they ordered were appropriate to the infection – just give the oral medications and don’t question our judgment.  The infection showed no sign of abating even after several days on the prescribed regimen.

One afternoon, I arrived for my shift.  This young man was having seizures.  He wasn’t having just one seizure – but one followed by another.  The seizure activity was such that it was driving his temperature up by the hour.  Our head nurse (experienced and kindly but not willing to challenge the medical system) was trying everything she could to control his fever, but the seizures continued – one after the other for the entire shift. 

He appeared to be beyond understanding what was happening to him.  During the few moments between seizures he seemed to be dazed.  I knew he was in pain – but no medication was allowed to relieve his pain.  The fingers continued to be angry red – his ear continued to discharge its steady stream of infection.  The doctors refused to discuss any alternative treatment – there were no IV’s to replenish his fluids or electrolytes.  There was no attempt to sedate him in the hopes that his seizures would diminish.  At the time, it was suggested that administering general anaesthesia would make the seizures pause for a long enough time to bring his fever down.  The physicians smugly declined to offer any treatment that would have helped this young man.

The next day I arrived for my shift and this patient’s bed was empty.  He had lived almost 36 hours with one seizure after another.  Finally, his fever was so high that his vital organs shut down.  One of the doctors visited the floor later that evening – and with a certain amount of smugness advised me that they had immediately contacted the family of this man and requested permission to have his body cremated.  The family had given permission and the doctors had hastened to follow the family’s wishes thereby sidestepping an autopsy.

My mind goes back to him often.  I see him as the head nurse was desperately trying to bring his temperature down – and how everything we tried had failed.  I was filled with the rage that comes from feeling totally helpless in the face of a system that forgets.  It forgets the value of the individual and his quality of life.