Mike – Meningitis Survivor | New York
In March 2012 I was at the gym and slipped in the steam-room hitting my head. I passed out for a few minutes but eventually made it to the hospital. Three months later I was slowly riding my bike when a pedestrian stepped in front of me and grabbed my handlebars, I fell, hit my head and fractured my hip and pelvis. That summer I inexplicably broke out in hives all over my body. By November I was fatigued, running a low fever. I went to the doctor several times. He couldn’t find much wrong with me. A few days later I was still sick so I went back, they took blood and the next morning I got a call telling me to get to the emergency room as soon as possible, my white blood count was dangerously high.
I remember having a terrible fever in the ER, it hit 105.9. My eyes were unfocused and I wasn’t able to respond to simple commands. My respiration rate became irregular. That’s the last thing I remember.
I fell into a coma for two weeks.
I was given a tracheotomy and put on a ventilator. A few of the doctors in the medical intensive care unit in New York City’s Beth Israel hospital told my wife and children to think about funeral arrangements. They did not think I could possibly survive. My sodium levels sky-rocketed. My organs failed. I was diagnosed with tubercular meningitis.
I finally started responding to aggressive treatments but was still in a coma.
When I started to wake up my family realized I had lost my hearing. I could not walk, I could not lift my arms or legs, I was filled with fluid and had bedsores which took almost a year to fully heal.
Six weeks after entering the hospital I was delirious.
Then began eight weeks as an inpatient at a rehab facility in New Jersey where they taught me to sit-up again, stand, and finally walk although with a severe limp.
I began my new life in silence, but at least I was able to interact with my family. They would type messages on computer screens and iPads to explain what happened to me.
I don’t remember everything but I do remember the terrible nightmares, doctors later told me they were probably caused by the powerful doses of medication I was on to fight off whatever had infected my body and brain.
In one dream I was in the basement where I watched patients being dismembered and incinerated. On another occasion I was held captive on a Japanese submarine on the way to attack Pearl Harbor. I tried to escape but was recaptured and dumped in a storeroom with rats. I was so confused when I was awake I thought I was in Europe then Central America. I even tried to communicate with doctors and staff-members in Spanish.
I tried to escape. I got out of bed, took one step and collapsed when my right leg gave out. I fractured my coccyx which caused me a lot of pain for the next few months. I woke up back in bed with thick cloth mittens on my hands and a strap around my waist holding me in bed. Another escape attempt led me to attack the valves above my bed. After that I had an attendant watching me 24-7. My hands were encased in canvas mittens that were taped on so I could not remove them. It also helped me avoid scratching a terrible rash that covered my entire body.
Eight weeks later I was finally able to go home. It took a while but I was able to get into an outpatient rehab program near home in New York City. A few months later I was able to get cochlear implants which work very well, but it’s not a full substitute for true hearing, sound is metallic but I’m getting used to it.
My new life consisted of visits to physicians as well as physical therapy. Dragging myself from one appointment to another tired me and left me more and more depressed, I always hated going to the doctor, now it was the only thing I did. When I began going to those appointments I was in a wheelchair. Eventually I was able to use a cane, now I’m able to walk without one albeit awkwardly.
I am severely depressed. I had just retired from my job as an Administrative Law Judge before getting sick. I was very active embarking on 100 mile bike rides several times a week.
My short-term memory has been affected along with my decision making skills. I am no longer fully in charge of my finances and I need help keeping track of bills.
In September 2013 I began a program to help me understand there are ways to compensate for my cognitive limitations. 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 is gone, I can learn to use other methods to manage my life. The main goal is to make a written record of events that occurred each day as well as a schedule of what I am planning to do in the future so I can refer to it and be organized. I need written reminders to help me with my daily exercises, appointments and just about everything.
My calendar and notepad are to become my “auxiliary memory.” While I understand the logic of this method, at my age I find it difficult to implement even though it works. I have begun to record my activities and future obligations so I can refer to this log several times a day. I am trying to help myself and free my family from constantly answering the same questions. It is a difficult process that I will probably never master completely.
My life is difficult and much different than I expected. Despite my fondest hopes I have begun to accept that I can never go back. I must try every day to keep going forward. When I forget this, I am gently reminded by my family that I have a future, and it is here with them.
While this of course has been a terrible experience for all of us I am proof that some people can survive this. My life will be much different than I would have ever imagined however I know it can still be meaningful.