Rachel
Rachel was my beautiful partner turned fiancée whom I met whilst living and working in the Lake District.
Six months before Rachel passed away, we bought our first home together and were very much planning for our joint future in an area we loved. We'd established roots in our new community and were so excited to explore life together.
Growing up, Rachel was diagnosed with epilepsy and mainly had nocturnal seizures.
For reasons I’m unsure about, the belief in the following years was that she didn’t have epilepsy, and so medication was no longer prescribed. It wasn’t until a number of years later when doctors had further opportunities to investigate her epilepsy.
When I met Rachel for the first time, she told me that she was having tests done at the hospital for what I soon realised were dissociative seizures. Rachel developed these a couple of years prior to meeting me and they were brought on by stress and heightened emotion. These were considered to be more psychological than anything else but masked the more serious convulsive attacks I witnessed on occasions.
The dissociative episodes affected Rachel quite a bit and were very much the focus of doctors’ investigations for the time we were together. These investigations took place seventy or so miles from where we lived, and with Rachel’s line of work and the distance involved it was sometimes a struggle to attend an appointment on a particular date.
Throughout my time with Rachel, I witnessed her having nocturnal seizures. I raised these with her and expressed my worry that they were different to her dissociative episodes. Despite this, Rachel was never investigated for the nocturnal attacks, and she never underwent any nighttime observations from the hospital, which I believe would have identified her epilepsy.
Before the coroner confirmed Rachel’s passing was a result of SUDEP, I naively thought that the biggest risk from having a seizure was a bump to the head or a fall. I never knew sudden death could be caused by epilepsy and to this day, I wish I did. Through lack of resources for investigating her epilepsy and the failure to mention the risk of Sudden Unexpected Death at appointments, we’re left missing her beyond words.
Following Rachel’s passing, the doctor admitted his failure to pick up the fact that Rachel had epilepsy. In part, he believed her seizures to be a result of gender, hormones, and her age. He suggested that, going forward, more training should be on offer for specialist nurses and changes implemented to the way he practiced, as well as the hospital.
Rachel never wanted to be defined by her dissociative seizures or her epilepsy. On a daily basis, she showed and taught me resilience, strength, selflessness, and positivity. She loved the fresh air, sunrises, sunsets, and the coastline that we lived next to. She was a doting auntie, her nephew’s biggest fan, and she would have been the most special mother to the children that we never got to have.
Love you Rach 🧡 x
Ewan
