Post encephalitis – the survivors view

The following is a collection of thoughts and ideas shared since Encephalitis Global was created in September 2000. Please remember that no one at this site is a medical representative in any way. We are a support group, offering suggestions and strength to each other. We have used the female gender for sample suggestions… either would do, of course.

Activities for survivors

If I remember correctly (lol)…. camaraderie was of the highest benefit of all. I would not have wanted to go out for a meal, or to a movie, or anything…. I was very comfortable and secure, being in my own home. My own father would handle this problem in a manner which now, in hindsight, I view as the best answer. Twice a week, he’d park his car out front… and we would go walking (which, deep inside, I was feeling a bit nervous about!). We’d walk to a nearby coffee shop. He would offer to buy me lunch, but I was never hungry. So, we would each order just a ‘cup’ of soup. Delicious, healthy, home made soup. I would only eat half of it… then we’d walk home again. Total distance, there plus back… half a mile.

That whole outing took about an hour….perhaps an hour and a half. And, that was truly enough! But, it made me move, got me going…. both physically, and mentally.

A friend continues… “Wendy is 100% on target about walking. At least in my case, walking wakes me up. And, if it’s long enough, and brisk enough to go a little aerobic, I get sharper and clearer mentally. If you are able to walk and talk, chances are you’ll both feel a lot better about the situation after a good long, brisk, walk. A little hand holding goes a long way too! Even a scheduled walk…. as in…. “We must do our morning walk” … or…. “…Our after dinner walk.” “

Another friend comments, “ I’m just about at the end of my rope trying to get through this. I did find one thing that has helped me to cope. My doctor’s prescribed “animal therapy” so I got a puppy. He makes me smile every day and I had gotten to a point where I was not able to do that due to my unhappiness and frustration with the whole headache thing. I’ve pretty much recovered except for the debilitating headache and the need for at least one extended period of rest every day. I usually require two rest periods. Just doing the simple task of laundry or emptying the dishwasher exhausts me to the point of having to take a break.”

How do you explain encephalitis to friends?

Members here were asked, “If you are in a social situation, and the topic of encephalitis comes up… how do you discuss/describe E? Does it become the topic for the next five minutes? The next ten minutes?”

I find so often, that I try to NOT pour my encephalitis into the conversation. I try to step back, and let other folks carry the topic. It’s really very refreshing, to listen to friends talk, and be distracted to other topics. Refreshing, and relaxing, to let the conversation pour past. Usually, it was not my first choice to go out socially… so to sit back and let others converse is very relaxing. Then, by the time they’ve all talked out and turned to you… you can have a question or two ready.

Other times, when folks ASK me about my E, I find myself giving a brief answer. Then, if they encourage more, I get talking… and talking… and some times, it’s like a dam has burst, and I find it rather difficult to stop!

Do you have friends outside the home who want to know more? Do you have friends who are uncomfortable to even hear the word? Or, (I hope!) friends who treat it just right, ask for an update, then carry on with another topic?

Since there are a lot of people who have known me for some time and did not know about the E. I notice their mouths open and they stare as if I am telling them some kind of Joke.

…herpes simplex encephalitis explained?

I also had Herpes Encephalitis in 1999. And I’ve come up with a way to explain it, to folks who don’t understand. I start off by saying…   “Have you ever had chicken pox, or shingles? (they reply ‘yes’)  Ah, then you carry the herpes virus in your system. Most people do. In some very rare occasions, that virus manages to break through the natural barrier into the brain itself. That is herpes encephalitis.”  This is a very non-medical, non-professional way to explain it. But, it truly helps folks look in a different light. And puts their raised eyebrows BACK in PLACE !!

…and speaking of friends…   How do your friends cope with the new you?

This is a toughie. I have to ask myself, “how would I have handled it if the situation was reversed?”  Personally, I have been very lucky. A friend from my past, who I had seen two or three times in the past ten years, heard of my illness, and stepped forward. She made a date with me, to take me shopping, visit with me, whatever I wanted to do, every Thursday. A woman I’ve met since having encephalitis cannot understand what all the FUSS is about… she did not know the old Wendy, and is quite happy to be friends with the new one. A third friend, stood strongly beside me for a year post encephalitis… but we have slowly drifted apart, as the new Wendy cannot keep up with her.

Survivor’s self-confidence

This story describes when a survivor can be uncertain that his or her own judgment is correct. “OH, I’m so sorry. I apologize in advance. But, jeeze louise ! Usually, my Goodspouse comes with me weekly to do grocery shopping. But, I just ran up to Safeway, it’s my daughter’s day off of college, so I ran up to grab some bread and eggs for her. I’ve dealt with this Safeway for 20+ years. At the cash register, the screen indicated I should receive 8.24 change. I scooped the $3.24 from the change dispenser, the cashier handed me my receipt. Then I said, “Excuse me, shouldn’t I receive a $5 bill?” She says, “I gave it to you already, with your receipt” “No, I’m still holding my receipt, and there’s no $5 with it” I opened my wallet. My purse. Both of my hands. She shrugs. As I walked away, I said to her, “Please, remember my name. And, when your balance has an extra $5, do give me a call.” Dammit, the old Wendy would have stood her ground. Stood strong. But, now…. I have two options. Walk …. or burst into tears. Oh, dammit dammit DAMMIT !

 Oh, strength in support! Truly. That’s what this site does for me.

Emotional Stamina

Comment posted…….As long as I have a very simple life, I manage just fine. I spent the afternoon with a very, very good friend. As I was leaving (about one hour ago), I felt the need to apologize to her…. and…. unfortunately, burst into tears, and I’ve been near sobbing ever since

Reply received….that is ok Wendy. I have done the same thing in front of truck drivers, teamsters and warehousemen. (; . Now THAT is embarrassing, especially for a guy. (:

Dizzy, Nausea

Ah…. what about your tummy, friends? I get the most unusual nausea spells now, post E. It happens three or four times a day…. a most unusual wave of nausea…. hang on…. hang on another moment…. then, it’s gone. As long as I stand still and focus, it never becomes more than the passing feeling.


…. weird headaches. They all started the same way, flu-like, he felt run down, and then he starts having these sharp stabbing pains in his head – I think always the right side. I mean unbearable ice pick stabbing pains every 2-3 minutes all day long – first time 12 days, last time 8 days, we are on our 5th day this time.

…. I get sharp shooting pains which feel like someone is twisting a screwdriver up through under my chin going straight up through the brain near both temples and sometimes behind one of my eyes. They don’t last long, a minute to two, but scare the heck out of me. The incidence is sporadic and not often. I don’t do anything special accept lie still and drift off to sleep. I’m usually afraid to move when I get them. I wouldn’t call them headaches though. They are more like stabbing incidents.

Music Therapy

A friend at Encephalitis Global recommends, “Last summer my son Douglas did the Tomatis Listening Program…in Denver CO..There are many centers in the USA that do it and Canada as well. We also bought a home program. Douglas is legally blind and seems to operate monochannel but after the therapy he could use his ears and eyes at the same time. Many therapy locations are introducing listening therapy.  Hope you have the results we did….”

Where the heck ARE the SPOONS?

I remember in my first days at home after being in hospital for four weeks with encephalitis. My mother and father had volunteered to supervise me during the day, so that my Goodspouse and children could go to work/school. My parents gently tried to let me do things for myself, but….. I poured myself a cup of coffee, then wanted to add sugar. But where, where would I find a spoon? I stood in the middle of my own kitchen, gazing around. Hmmmm. Spoons. Do they hang from the ceiling? No. Are they in the oven? Checked there… No. I’ll check my own pockets! No spoon there. OH! Perhaps the dog has them! No luck. So, I had to ask my ‘babysitter’…. My own mother. She pointed out the silverware drawer, and voila! Spoons! Now, that fact was returned to my brain, to my memory…. And I did not forget again.

Then of course, it was a year after first coming home, that my family told me of the evening when I insisted that I could help with the after dinner tidy up. I went over, put on two thick asbestos oven mitts…. and plunged my hands into the sink, to wash the dishes!