A childhood illness led to encephalitis, seizures, and a long journey toward being believed and properly diagnosed.

Becoming seriously ill as a baby

I was diagnosed with encephalitis at 10 months old after becoming seriously ill in 1958. I do not know whether my parents were ever told the exact type, but it followed influenza from my brother and sister. At first, I seemed so happy my parents weren’t worried. I would throw up and smile, then throw up and smile.

At the end of the week, our family doctor prescribed an antibiotic.  The next day I went downhill and my skin turned grey.  I was taken to the hospital that night. In 1958, there was not much that doctors could do to treat encephalitis other than supporting airways and general care and monitoring – there were not the drugs they have today. In spite of all that was done for me, I went into status seizures for 4 hours, then I was paralyzed on my left side and in a coma for 4 days.  The doctors told my parents that I would probably die or be ‘a vegetable’ (the term they used in 1958).

My understanding is that the encephalitis diagnosis was made during that hospital admission, after I had status seizures, paralysis on my left side, and a coma. I was too young to remember this myself, so these details come from what my parents were told.

I awoke 4 days later and was in hospital for a further 6 days; then discharged home with seemingly no untoward effects.  However, for years I had what I thought were dreams that felt like brushing my head against a rough Brillo pad.

Frightening spells in adolescence

When I was 14, I had the same feeling during the day and started having many of these ‘spells’ that really frightened me and made me think I was going mad, especially because multiple doctors kept saying it was all in my head or I was too stressed or I was ‘just a teenager’.

Then when I was 17, I started smelling burnt rubber during the spells, which REALLY made me think I was going crazy.   When I was in college, I started having visual hallucinations during the spells, which really scared me.  My college years were pure hell because of all this, but I managed to graduate with a degree in music in spite of it all.

Finding a link to epilepsy

Two weeks before my senior recital, I went to a gynaecologist because the spells happened more often during my period, which is very common for women with epilepsy. He sent me to a neurologist, who was the first doctor to connect the encephalitis with the spells and diagnosed me with temporal lobe epilepsy.

It took another 16 years to get them under control, and it was a doctor who thought I was faking them who sent me to an epilepsy centre to prove that.  In fact, they found seizures on the EEG and changed my meds and in an odd way it turned out to be a blessing as I haven’t had a seizure now for almost 30 years since I’ve been on the new drug!

Learning to live with the impact

Although the seizures have been controlled for many years, the long journey to being believed and properly diagnosed stayed with me. The hardest part was not only the seizures themselves, but the years of fear, confusion, and being told that nothing neurological was happening.

If you would like to speak to our support team about encephalitis, please contact our helpline.

Story published September 2026