My brain before and after Encephalitis

I noticed during my research of the brain that it is not typical for people to share their medical history and never did I think I would be in this position. However, the diagnoses I had are interesting and a little rarer than the ordinary. Two in a million people get HSV1 Encephalitis and if they are not treated within a few days then it can result in death. There are several variations to Encephalitis, some treatable and some not.

My optimism in sharing this is so that others can get a better grasp on how fragile our brains are and how important it is to take care of them. I had the privilege of physical therapy for both my brain and body, along with a counselor who specializes in acquired brain injury.

I assure you that I will not be sharing my stacks of medical records. What I will be sharing are the journeys and energy it took to overcome these obstacles.  This is all in hopes that it will help others bring their minds, bodies, and spirits to a better balance.

Below you will find my prior medical conditions versus me after Encephalitis. This information will hopefully give you a better appreciation for what our brain controls and understand we must take care of it as much as possible. If we do not, then the repercussions are devastating. I could not stop the virus from entering my brain, however I have learned and grown along the journey.

Some of the medical diagnosis’s above are easy for others to understand. However, my personality changes and energy levels are not so clear to the open eye. Prior to this I was very much known as the go getter in life and never seem to slow down. Now that is not so much the case. I terribly desire to have back that stamina I had, but that will not happen. Luckily though I am now a much more patient mother and very much aware of the moment at hand.

My lack of energy is one of my biggest problems. Keeping up with my wild child, Ms. Brooklyn, would be tough for most as it is, let alone someone with a tired brain and body. I explain my tired brain in this way. Think of how your brain circuits connect back and forth with each other like a roadway. If that roadway has damage, then it would have to reroute. This requires more energy or fuel and takes longer to make it there.

Refilling a brain takes a little more than stopping for gas. The only way to refill a brain is to sleep. Often people respond to this and say, “Oh yes we all need reboots”. Then I think oh yes, but my brain requires 10 times more than the average person. When I push myself too much then, I pay with complete crashes and sleep for a good 20 hours. This happens on a weekly basis and usually I use my 2 child free evenings to do sleep and reboot. I hate wasting the time but if I don’t then seizures, brain fog and weakness of my whole body will kick in fast.

My short-term memory has been the most affected and I regularly compare myself to Dory from Finding Nemo or Drew Barrymore from 50 first dates. So, When I have a conversation with someone I try to focus intently on the person, ask questions and hope that it moves to my long-term memory. If I am tired those moments tend to go right in and back out. Sometimes I hear a story from a friend about an evening we ventured out and I cannot recall any of it. I am not talking memories from years ago but simply a few weeks!

Your brain takes a while to heal when damaged and the process requires an enormous amount of rest. I worked with the Virginia Mason Neurology department during my original diagnosis and still go in for follow ups on an annual basis. The neurologists informed me that at the 18 month point I would have a better understanding of where my long-term complications may stand. I am so happy to say at the 4-year mark I am doing substantially better. In the beginning of the healing process, I could not even remember if I had just cracked an egg a second before. I would sleep 20 plus hours a day while on a permanent IV and stayed bedridden for many months. I am now at a complete acceptance of my capabilities and understand the body, mind, and spirit to an extent that I never thought possible.

The image below will show you the possible aftermath that Encephalitis and Meningitis can have on the body. I do not have all these medical concerns but enough of my mind and body has been affected to easily relate. The key ones being light sensitivity, need for sleep, lack of appetite (when tired), body aches, emotional roller coaster, rigid neck, joint pain, and memory loss.

In my future postings I will be sharing the full story of my journey through Encephalitis but in the meantime, here is a mini preview to one of the craziest moments. The name I called myself when I walked into the emergency room. I do not recall driving to the hospital and according to the staff I came in speaking gibberish. I however do remember the 4 doctors standing in front of me and asking my name, according to the doctors I said my name was “Bright sunny star.” Which was obviously not correct! Fortunately, one of the doctors was a customer of the Coffee shop I owned with my mother. He called the shop who then contacted my mother. Her arrival there was the starting point of the diagnosis. Thank goodness because if not I may not be here today.

Having family, friends and support groups is so important for recovery in anything. Right? Make sure and be there for others as much as possible because you never know when you might need them in return. A big thank you to all my helpers through the journey.