Don't take your memory for granted

One of the most frustrating experiences I had in hospital was my ability to remember things. Being in ICU for so long was probably part of the reason I don't remember much before entering hospital.  

As soon as my tracheostomy was taken out, I appreciated the ability to converse, something we wouldn't usually think about because having a voice is generally innate. I felt a sense of freedom quite literally having my voice back and greatful that I still obtained my pre-illness inquisitive nature.

I was able to freely converse and discuss the intriguing scientific concepts regarding encephalitis with my neurologist on his morning rounds. But the issue was my forgetfulness.

By the time a family member would arrive I would have forgotten key details about my discussion with the doctor and other health care professionals. This would lead me to being emotional because being someone who could do without memos and reminders before my illness; it was upsetting being unable to remember simple discussions.

I began writing down everything I'd discuss and kept a diary whilst in hospital. This was useful because not only did it help me to improve my memory but it allowed me to reflect on what had happened, by writing down my thoughts I found it easy to overcome the trauma. 

There were 3 key activities my family instructed me to do almost every day once I was physically and cognitively ready to:

  • Explain local routes in my city 

To this day, I guide my 3 older siblings who have been driving for a decade between them around my city. I've always been good at remembering routes and locations.

When in hospital, my mum would ask me to name streets in my city for example; name the address of your high school. I remember explaining to her different routes from our home to my school, university and family/friend homes.

Being in hospital I felt like I was in a "safe prison", a prison because I couldn't leave, encephalitis was causing me to serve time in an unfamiliar environment for a long time and even after discharge I would still remember/feel its effects. I began missing things I would ordinarily criticise; I missed the cold, I missed being the person who was irritated by slow walking in a busy town being a fast walker myself. But obviously I was safe as I was being cared for by excellent health care professionals and my family. 

Explaining routes really helped me to envision normal life in my city, it reminded me of memories I spent in these different locations which not only made me happy, but affirmed that I had great things waiting for me once I left this “safe prison”. 

  •  Maths puzzles 

Maths has connotations of being terrible but honestly I feel it was vital in my cognitive rehabilitation. It's something we use every-day when organising our finances, when eating out and when buying from supermarkets. To do basic maths is a skill we need as a layperson regardless of our profession. So being able to remember methods I learned in school (4 years before my illness), I knew I wouldn't leave hospital incapable of doing things I could do without struggling before.

I was determined I wouldn't be a patient suffering with post-cognitive impairments such as decreased problem solving as long as I could help it. This was one of the main purposes of doing maths. Puzzle books and maths guides from WHSmith served my purpose well. 

  • Read a story and relay 3 key points 

My mum bought me a book called "Chicken Soup for the soul", it included many mini stories with a motivational or inspiring message.  

I would read the short stories aloud ensuring I would use expression we were taught to use when reading as children, my mum thought this was important as it would improve my confidence and fluency which were knocked due to the illness.

To help improve my memory, my mum would ask me, "What was the main message of the story?" "Tell me three things that happened in that story." 

I would then repeat this to whoever came to visit me later on.

Reading and discussing stories enabled me to me to recall facts as well as understand concepts and reason - helping me to justify why I thought the main message was the main message.

To conclude, I would recommend to anyone who has suffered from a head injury to do these three things if you're also struggling to remember things. Not only is our memory essential for everyday living but it helps us to be emotionally happy as it forms who we are and to forget that is debilitating.

About Me

My name is Madiah and I am a 21-year-old survivor of Anti-NMDA Receptor Encephalitis. I hope you find my blog, Conquering Encephalitis, to be helpful to anyone who is also recovering from encephalitis. 

If you have any questions or comments, please get in touch with the Encephalitis Society who will send on your messages to me.