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Herpes Simplex Encephalitis Lived Experience- Tim’s Story

One day in May 2014, I woke up with a high fever (103+), and a severe headache that wouldn’t go away. This was odd because I was never sick before. I was 48 and in the best shape of my life at the time, as a personal trainer, a P90X Xtreme finisher, a soccer coach, and new to the obstacle racing sport. I was extremely active as a parent and husband and never stopped moving.

But this headache wouldn’t go away, and after being diagnosed with a severe sinus infection, I was sent home with some antibiotics to fight it off. I thought all was fine, and I went on my way. A few days later, I woke up with a severe headache and high fever again, so obviously the antibiotics weren’t helping. I was also really confused and didn’t seem to know where things were. Worried that something else was wrong, my wife at the time took me to the ER. This time, she pleaded for them to look into it further, and even to have a spinal tap, but we were told that this would be too painful and too costly, for a guy with a sinus infection, so they sent me home with more antibiotics and told me to sleep it off. Well, a few days later, things got even worse, and the headache and fever had gotten insane. I was so confused about what was going on, that I didn’t even know my wife or daughter’s name, or where everyday things were. That really put my wife in a panic, and she demanded we go back to the ER, and get more help.

Thankfully this time they agreed to doing a lumbar puncture and that’s when they discovered it was way more than a sinus infection. They told my wife it was encephalitis caused by the herpes virus that had gone to my brain. They said it had progressed quite a bit and had done some damage. I was immediately admitted, and put on anti-viral medicines, instead of antibiotics. The doctors told my wife that due to lateness I might not wake up, and if I did, I might not be in a very good state. That was tough for her to hear as she looked at her previously healthy husband, now slipping into a coma-like state for three days. Thankfully, I woke up three days later, but to a new world.

That’s when my story really begins, as I woke up with no memory of who I was, or the person by the side of my bed. I had suffered some severe brain damage that had stolen my memory, but the extent of which was still to be determined. However, I was alive and able to still walk and talk. My prior good health saved me those days. I was in the ICU for nearly three weeks, as the doctors monitored my progress, and was finally sent home, to recover as best as I could. I had some home healthcare for a while, but it was limited.

For the next three months I was at home on my couch on various medication (steroids, anti-seizure) to help repair my brain, but which unfortunately also affected how I looked after myself. This turned into an insatiable appetite, that made me want to eat everything, and had me up at all hours of the night, really not knowing where I was, who I was with, or who I was for that matter. This continued for quite some time, with little to no help of assistance, and I gained 50 lbs, and lost interest in my health, or anything else. I was in a world of my own and lost a lot more than just my memory.  One morning in 2014, three months after my encephalitis illness, I woke up with a sharp shooting pain up my leg which led straight to my heart. I ended up again at ER where they admitted me immediately for emergency surgery. It was a massive pulmonary embolism, and the doctors couldn’t believe I walked in there. Again, I had been a strong and healthy man. The doctors performed the surgery and saved my life.

Thankfully, I had survived another near fatal event, just three months after the near fatal encephalitis, and the treatment for that, nearly killed me again. After another week or so in the ICU, I was sent home to recover again. This time, off the antivirals and anti-seizure meds, and only on blood thinners, to prevent more clots. That seemed to at least slow down my appetite, and clear my mind up a bit, and get me back on track. I was home for the Fall, and focused on my recovery, and getting my life back.

Long story from here, I got back to the man I was before that next Spring, and started working out again, and before you know it, I was back out on a Spartan racecourse, less than a year after my encephalitis. I was running a race, and proving I CAN, and trying to be the dad and husband I used to be. Not sure that was ever gone happen again, as that man was gone, but the new man who had survived it all, grew even stronger, and more determined, and hasn’t stopped ever since. In 2017, I had to deal with other health issues again, linked to the medication I took after encephalitis. I had to get my right hip and left shoulder replaced. That was hard to accept, but I didn’t let that stop me either, and I kept doing it ANYWAY, even on crutches or in a sling.

So, long story short, I never stopped moving, and I continued to stay active. That goes for both my body and my brain. I re-earned my personal trainers license in 2017 and my Spartan training certification in 2018. I focused on my physical and mental health every single day and haven’t stopped since.  I’ve gone on to run Spartan races, other hundreds of races, challenges and events since then, including 50k Ultras.

But as I approach my 10-year Anniversary of my Encephalitis on Memorial Day weekend this year in 2024, I’ll be tackling my biggest challenge ever, and running three marathons in three days, on those same three days that I was in a coma in 2014. I will be proving that encephalitis couldn’t stop a strong and healthy man back then and can’t stop one now either. That event is called the Texas Triple in Dallas on May 25th, 26th and 27th Memorial Day. I will use it to help raise awareness and funds for Encephalitis and raise awareness for both physical and mental health as well.  I can’t wait to cross all three finish lines and keep GO-ing & doing it ANYWAY.

Encephalitis stole WAY more than just my memories back then (family, finances), and many things I’ll never get back. But the message that I do hope comes through, is that I didn’t lose my life on those two separate occasions, because I had always focused on my health. That’s not only what saved me both times, but it is what has helped me recover from so much too, and that is still something that I had control of, even when things seemed out of control.

Now, I’ve moved to Florida to be with my aging parents and to help with their health. I work and play Pickleball for a living, and I am in full control of my life, and in great health.

So, not all parts of my story have a happy ending, but I’m still here, making new memories, and living  a healthy and active life, and that’s the story I want to share with you.

(Published May 2024)

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Page Created: 24 May 2024
Last Modified: 15 July 2024
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