Elizabeth shares her experience of herpes simplex virus encephalitis

Before encephalitis

I’m a 62-year-old woman living in Colorado and have always pursued endurance sports: I was a competitive swimmer for 10 years, specializing in one and two-mile open water events before college. I’ve run 11 marathons, including five Boston marathons and four New York City marathons. I have also done Ride the Rockies and RAGBRAI, a week-long bike ride across Iowa that draws upwards of 10,000 cyclists each year. That was all 20 years ago. Everything changed when I was diagnosed with herpes simplex virus 1 encephalitis.

My encephalitis story

To cut a long story short, this August (2024) I swam around Manhattan Island; a 28.5-mile swim which took me 9.5 hours. It is aptly named 20 Bridges, since my swim partner and I swam under all 20 bridges linking Manhattan to the mainland. As I had run the NYC marathon, swimming under bridges I had run across was just amazing.

The thing I am most proud of is that exactly one year earlier, in August 2023, I was scheduled to compete in another marathon swim across the 21-mile Catalina Channel, but was instead hospitalised with meningitis and herpes simplex virus 1 encephalitis. I was in Boulder Community Hospital (BCH) for nearly a month before being transferred to a rehabilitation unit. I had memory issues, as well as problems with walking and speaking. The loss of mobility was especially devastating to me.

I wouldn’t be here today without the fast-acting staff at BCH, and the ensuing speech/memory/rehab therapy I received under their care for the next six months. I have always been fit and tried to keep up on good eating habits, ensure regular doctor visits etc. The only time I was in the hospital was to have my two daughters.

After encephalitis

After encephalitis I never thought I would be able to swim long distance again, but as I gradually got my strength, stamina, and ‘brain’ back over nearly six months, I felt it was time to try swimming again last January and reignite my swimming goals, which included swimming 20 Bridges (around Manhattan), the Catalina Channel and the English Channel.

I had tremendous support from the international marathon swimming community, especially those in Colorado and the staff at a restorative yoga center in Boulder. Slowly, I started pool swimming before feeling strong and confident enough to get back into the open water.

I wanted to share my story because I was so emotionally devastated when I was hospitalised, I didn’t think I would ever be able to swim again, let alone get back to marathon swimming; I had to take four months of disability leave from my job as a technical writer. Hopefully, my journey can show others that it IS possible to resume a normal life after herpes simplex virus 1 encephalitis and meningitis. Some symptoms still linger, such as some memory issues—at times just can’t find the right word. I give myself breaks at work if I feel myself getting overwhelmed.

Where I am now

It was important for me to read stories like this when I was recovering so wanted to share my experience. I spent a lot of time on the Encephalitis International webpage during my recovery. Thanks so much for what you do to educate people about encephalitis and show that recovery is possible. It gave me hope when I was at a very low point.

(story published August 2024)