March 2012 I began an unexpected journey that has changed my life forever. I don’t know how or when it will end. I can only hope that I will eventually be able to find my way back home. With the help of my family I am struggling to recover my independence and my self- esteem. By sharing my experience I hope to help and inspire others who are battling with similar problems.
I believe it may have started in March when I slipped and fell, hitting my head in the sauna of the health club where I belonged in Manhattan. Before I briefly lost consciousness, I was able to punch the alarm bell. The attendant responded and gave me a towel to apply to the wound at the back of my head. He also called for an ambulance. When help did not arrive after what seemed to be a long time, I started walking toward the NYU Hospital Emergency Room. The ambulance crew spotted me probably because I had a bloody towel wrapped around my head. I was seen in the emergency room and discharged after getting eight stitches in the back of my head.
In July 2012 I had a bicycle accident on 45th Street just west of Broadway in New York City when a pedestrian stepped off the curb in the middle of the block directly in front of me. I was able to avoid hitting him but the strap of his satchel caught on the end of my handlebars and threw me over. He took off, probably because he knew he was J walking and did not want to stick around. I was wearing a bicycle helmet, something I always did even on the shortest of rides, so I assumed I was all right. I could not have been more wrong.
By the time I reached home, I was in terrible pain. An x-ray examination at NYU Hospital revealed a fractured hip and pelvis. I was non-weight bearing for the remainder of the summer and had to use crutches and a wheelchair to get around. I had help at home from the visiting nurse service and at home physical therapy. I also had an outbreak of hives, but they resolved pretty quickly without any treatment.
Soon after that summer I started breaking out in strange and giant hives all over my body, from face to my legs.
But by October 2012 things had calmed down and I was feeling much better, but still had some residual hip pan. I decided to go to Florida to help my younger son Jeffrey move into his new apartment and spend some time swimming and walking on the beach for therapy. While I was there I began to experience severe fatigue. Nevertheless, I found the energy to swim, walk on the beach, and ride a rented bicycle and help Jeffrey pack up and move. I noticed that I seemed to need more rest than I normally did, but I attributed this to the increased activity.
I returned to New York just before Thanksgiving to rest and help my wife get ready for the holiday. I remember that on Thanksgiving Day I sliced the turkey as I normally did, but was too tired to enjoy the food. I went to bed early without eating despite the fact that my older son, Jason and his wife who was about to deliver our first grandchild were spending the evening with us. The next day I really did not feel well and Sarah had to assist me on the short walk to see my physician, Dr. Schwartz. That’s the last thing I remember until I began the slow process of coming back almost three months later in February 2013.
In November 2012 I was suffering low grade fevers. A doctor at a walk-in clinic diagnosed me with bronchitis. When I started taking medicine and wasn’t feeling better I went to see my regular doctor, Doctor Schwartz. After an exam he doubted much was wrong but sent me for blood-work. After the blood test I went home and went to sleep. The next morning Dr. Schwartz called first thing and said that he was alarmed that my red and white blood cell counts were very abnormal and my wife should immediately take me to Beth Israel Medical Center to get a complete workup. He said he would call ahead to make sure I was seen immediately.
When we arrived at Beth Israel I was seen by Dr. Bekkor, an infectious disease specialist. I am told that my fever was dangerously high spiking to 105.9, my eyes were unfocused and looking in different directions, and I was unable to respond to simple commands. Fortunately Dr. Bekkor correctly made a preliminary diagnosis of Tubercular Meningitis, a dangerous swelling of the membrane surrounding the brain and immediately ordered the administration of strong intravenous steroid medications. His correct diagnosis and quick actions surely saved my life.
In the meanwhile, my respiration rate became very irregular. I was given a tracheotomy and put on a ventilator in the Medical Intensive Care Unit. One of the attending physicians advised my family that they should be making funeral arrangements because the outlook was very dim. Thankfully my family and two good friends who are doctors rejected this advice and insisted that I be treated aggressively.
Even though I suffer daily with depression due to my loss of independence and reduced mobility, I guess they made the right decision because I am still here and able to interact with my wonderful family and learn to get the most I can out of life.
I have no recollection of my time at Beth Israel. For the first two weeks I was in a coma and because of the medications I was on to keep me calm while I was on the ventilator my mind is blank. My sodium hit levels doctors said weren’t survivable. I was filled with fluids and sweating profusely at the same time.
After being moved to a step-down unit I slowly started coming out of the coma. At first everyone thought I was unable to respond to even simple commands. Fortunately, by watching my demeanor, my family concluded that I was unable to hear. I was deaf. Meningitis had taken my ability to hear.
Doctors and my family started communicating with me by asking simple yes and no questions written on an erasable board and telling me to blink once for yes and twice for no. Thus began my new life, a life in silence. I will not go into the sacrifices they made, but someone was with me every day at Beth Israel and later at the rehabilitation center in New Jersey where I remained until February 2013.
Finally the trach tube was removed and I was transported to the Kessler Rehabilitation Center in West Orange, New Jersey where I spent the next six weeks. In the beginning I suffered with terrible hallucinations that were induced by the very strong medication I was taking. I could fill several volumes with my nightmares, but I think a few examples will be sufficient for now.
In one of my most frequent dreams, I was transported to the basement where I was forced to watch as other patients were being tortured, then dismembered and incinerated. For some reason I was always able to escape and hide before it was my turn.
I remember escaping through a series of underground tunnels that ran all the way to Switzerland of all places. I tried to hide in Zurich, but I was pursued by demons that captured me and returned me to New Jersey. On another occasion I was being held captive on a Japanese submarine that was on the way to attack Pearl Harbor. I tried to disrupt the plan by escaping and sending a distress call, but I was recaptured and dumped in a foul smelling storeroom inhabited by rats and rotting food.
Despite the fact that the nurses and attendants were all nice professionals who took very good care of me, I was half afraid of them because at night I dreamed they were tormenting me by filling me with harmful substances that caused my stomach to fill up and my intestines to bloat. This was probably caused by the fact that I was being fed through a stomach tube inserted through my navel. As the liquid drained from the bag into my stomach, I could feel my stomach filling up. I was also put on a catheter several times.
In the beginning my younger son Jeffrey slept in the room with me, sometimes on the bed and sometimes on two chairs put together. This was quite a feat because at six feet two inches he really had to squeeze himself in. For a period of time I thought he was my dog Buck trying to comfort me. I was saddened to learn that Buck as well as my parents had passed away several years ago. I decided that in order to survive I needed to escape and expose the terrible things going on behind the scenes. First, I wrote to my attending physician. When I asked him if he had received my email, he said he did not. I therefore concluded he was in on the plot and the cover up of these horrible activities. I then sent emails to The New York Times, The Washington Post and several other leading news outlets. I never received a response or saw any evidence of an investigation so I have to assume in retrospect that I only imagined sending the emails. At the time, however, I was terrified.
I decided I had to escape. Sometime during the night I determined to get dressed, sneak out, and take a cab back to New York. I did not realize that my right leg did not function. I got out of bed, took one step on my good left leg, and collapsed when my right leg did not support my weight. I fractured my coccyx which caused me a lot of pain for the next few months. I was rushed to another hospital in New Jersey where I was stabilized. When I woke up I was back in bed with thick cloth mittens on my hands and a seat belt strap around my waist holding me in the bed. I was in effect, a prisoner. Once I realized that I could not escape, I decided that the only way to get the attention to the authorities was to start a fire or cause an explosion.
There were a bunch of valves on the wall at the head of the bed. One night I attacked the valves I could reach either turning them on or tearing them out of the wall. I remember making quite a mess but thankfully there was no explosion. The room was repaired and I found that I now had an attendant occupying a chair each night next to the window. I was strapped into the bed by a seatbelt type device that I was unable to unbuckle. It had a strange buckle that I worked on for the next several weeks but was unable to open. In addition, my hands were encased in canvas mittens that were taped on the top so try as I might, I could not remove them.
Time seemed to pass by very slowly, but I was occupied during the day with various periods of physical and occupational therapy. I was also visited by a psychologist who constantly tested my memory by having me read passages and then asking me to recall what I had read. At night I slept fitfully, my dreams haunted by recurrent nightmares filled by demons.
I was told I would be discharged at the end of February 2013. I counted each day nervously, convinced that I would that I would never leave there alive. However, Sarah, Jason and Jeffrey arrived as promised and we returned to Manhattan to begin my new life. I kept looking back to see if we were being pursued, but despite my paranoia the trip was uneventful. When we crossed the George Washington Bridge, I began to feel safe. When we arrived at my apartment, I saw that some changes had been made. The king sized bed that I used to share with Sarah was still there, but next to it was a hospital bed with railings and an air mattress operated by a compressor that periodically turned itself on and off. It also had railings that I was unable to operate so I needed help every time I had to go to the bathroom.
MY NEW LIFE
My new life consisted of visits to my personal physician, the dentist, the eye doctor and the infectious disease doctor, in addition to physical therapy twice a week. The work of dragging myself from one appointment to another tired me out and left me depressed but I knew I had to keep going. When I began going to these appointments I was confined to a wheelchair, but over time I improved to the point that I was using a cane. While still challenging, this was a vast improvement for using public transportation and getting around in general. It also gave me a measure of confidence that I could get around more on my own.
A few weeks later I was told I was an acceptable candidate for cochlear implants. I had the surgery in the spring of 2013. About two months later the device was activated. It has taken some getting used to but it really is a medical miracle. With the help of the electronics implanted in my hour and connected to a unit that sits above each ear, I can now hear again.
In September 2013 I began a program of intensive cognitive therapy at the Rusk Institute in New York City. I admit to having a love-hate relationship with Rusk. It is an intensive four day a week program designed to help people with brain injuries, like me, recognize that we actually have problems and develop ways to compensate. To be brief, my memory is deficient. I have a great deal of difficulty remembering past and current events as well as plans I have made for the future. At first I thought the program would help me regain my lost competencies. I soon learned that this would not happen. Instead I must accept that although what was lost was gone, I could be trained to use alternate means, or strategies, to manage my life. The main goal was to make a written record of events that occurred each day as well as a schedule of what I was planning to do in the future so I could refer to it to keep myself on track so to speak.
In other words, my calendar and notepad would become my “auxiliary memory.” While I can certainly understand the logic of this method, at my age I find it difficult to implement this burdensome procedure even though I know that it works. With great difficulty, I have begun to undertake the task of recording my activities and future obligations so I can refer to this log when necessary, usually several times a day. I am doing this to try to help myself and to relieve my family of the burden of constantly answering the same questions. However, for me, it is a difficult process that I do not think I will ever master completely. While my memory is improving I will likely always need to rely on alternate ways of remembering appointments and every day events.
My confidence has also been shaken but I can now get around the city by myself. I can walk to and from my doctor and rehabilitation appointments alone and it gives me a sense of accomplishment and independence. Despite the fact that my life is difficult, and much different than what I expected, I am learning that it is what it is and I need to get what I can out of it. Despite my fondest hopes I have begun to accept that I can never go back and that I must try my best, every day, to keep going forward. When I forget this, I am gently reminded by my loved ones that I have a future, and it is here with them.
Liz Holderby-Fedynich commented 1 year ago
Mike, I am glad you’re well and healing from this terrible ordeal. But l am completely appalled at the decision to strap you down and put mittens on your hands to make you unable to move or free yourself. They should have sent someone in to TALK to you and understand your terror, not chain you up like a dog! I was so disturbed reading your story and your treatment by medical “professionals.” It’s like something out of the dark ages! I hope they never do this to another human being! God bless you.