- Posted June 20, 2014 by
White Plains, New York
This iReport is part of an assignment:
Living with a chronic illness
I Almost Died in December '95
I took the train home from Grand Central to Tarrytown, NY and what normally take 10 minutes to walk, took 45. I had no strength and with each step my head was pounding.
When I got home my husband, George, was worried about my being late but when I explained I didn't feel well and thought I might have the flu he understood. I told him I was going to be right then and probably wouldn't be going into work the next day.
The following morning he woke me to see if I was going to stay home and if so, I should call in which I did. I went back to bed and did not open my eyes again until he came home from work at 7:30 p.m. He couldn't believe it but 'understood' because I didn't feel well. He made me a light dinner and brought me a newspaper. I had no appetite and when I tried to read my eyes were crossing. Then I got scared but didn't want to say anything. I felt warm but did not take my temperature. I decided to go back to bed but before I did, I wanted to have a cigarette and told my hubby I was going to 'have a mustard'. I had no idea I had said anything wrong.
Well, that night, 12/19/1995, we had a record-breaking snowstorm. George woke me up, told me he would be shoveling our car out and then taking me to the hospital and that I should stay in bed. Of course, I did not listen to him. I got up and was ready to.
One of my sisters (Barbara) called me to see if I was home and when she heard me talking she got worried and called my other sister (Doris) who lives in Arizona; she asked her to call me and to let her know what she thought. Doris heard 'something wrong' in the way I was speaking and called her back to say so.
Barbara called me back and said she was going to come over and take me to the ER because I sounded so 'bad' and I was really angry at her. I said, "George is taking me; he's out cleaning off the car."
Well, George finally came back in and off we went. We must have sat in the ER waiting room for about 3 hours until I was taken in. A nurse came and took my pulse, blood pressure and temp which happened to be 105 F. She called the ER in because she got worried that I may have had a stroke.
When he came in and examined me he decided it was not a stroke but something else because I had no weakness on either side, I was 45 years old, and I had a fever. Usually when you have a stroke, you do not have a temperature.
He called for a neurologist and if it weren't for the doctor who was 'on duty' because of the snowstorm, I know I wouldn't be alive today. He ordered tests for me: EEG, EKG, blood work, an MRI and a spinal tap. The reason he did so was because when he was in medical school his roommate had died from a rare brain illness called ENCEPHALITIS and I had all of the symptoms.
After all of the tests, I was admitted to the ICU and placed on heavy duty antibiotics, a drug for herpes simplex encephalitis, intravenous Acyclovir, and . . . because of my fever, I was put on an ice pack (for two days). Another doctor, a specialist in rare diseases also came to see me and run blood tests.
The MRI showed swelling but was not 'specific' enough so the doctor had me have another one and this time with contrast. On that he could see where the inflammation was and how much swelling and could positively diagnose the "HSE".
I was in ICU for the first four days of my two weeks in the hospital and after that I had a private room because of my sensitivity to light and sound. I knew that something was wrong with my memory but I didn't quite know what. I had trouble naming anything or anyone, even though I could recognize them. All my body wanted to do was sleep, which it did for about 20 out of 24 hours of each day. I could not watch TV and have someone talk to me at the same time; I could not concentrate on either.
Finally, on January 2, 1996 my doctor said I was 'off' the Acyclovir and could go home and to call his office and make an appointment for the following week.
I had to spend my first night home alone because George had to work. i was alright but had a hard time remembering where things were and/or what I had to do. My little dog, Lee Lee, was very happy to have her mommy home.
Sometimes time flew by, other times it dragged. Now it was time to see Dr. Rothman again and I was certain he would tell me I could go back to work in a week or two. Instead he told me I had to be out in disability for three full months and I had to have an MRI every other week and see him every other week so he could see how I was coming along.
At the end of those three months he wrote a letter to the benefits department at work and told them for the next three months I could only come back for three half days a week and then from Memorial Day to Labor Day I could come back for three full days.
When i got back to work I was surprised at how 'bad' I was. I recognized everyone's face and voice but could not remember anyone's name. I sort of knew what I was supposed to do but made many mistakes; I transposed letters in words and words in sentences. Never once did my neurologist tell me that there are rehabilitation clinics for 'brain-damaged' people to help them regain memory, control emotions, etc. So, not knowing there was anything like this, I had to do it on my own.
Dr. Rothman thought my only 'residual' from my "E" was depression and recommended that I see a psychiatrist and get put on antidepressants. I did take his advice and still see the doctor and take the meds, but I get angry that most physicians know nothing about what "E" does to an individuals brain and how frustrating it is to try and explain it when you look 'just fine' and can't find the words.
When I went back to work at the end of March 1996 modern-day technology was just staring to kick in. I work for a large international law firm and because I work for a partner, I was one of the few assistants given access to the internet.
Naturally, the first word I search was 'encephalitis'. Not only did I find information on the illness itself but I found an online support group. I immediately joined that group which had about 30 members and was based in California (The National Encephalitis Foundation).
I went to their first (and only) annual meeting of survivors, caregivers, doctors, etc. and met, in person, other survivors and many doctors who wanted to learn how to diagnose this illness quickly and treat it so that there would be less of a percentage of death and the residuals would not be so extreme.
Since then, another survivor and I have incorporated a non-profit organization, Encephalitis Global, Inc. -- www.encephalitisglobal.org where we have an online support group of over 3,000 members worldwide. We try to have an annual meeting and will in the future since last February 22nd was the first Annual Encephalitis Day.
It has been 18 years since I had E but I've come a long way; I still have residuals such as a headache every day, memory problems, ringing in my ears, sensitivity to light and noise but I feel as if I am in the right place at the right time.
Because of computers and the internet I have been able to help so many others deal with their encephalitis residuals and for caregivers to realize that even though their loved on looks just fine, they still have residuals.
Thank you so much for letting me share my story.