Friday, May 9, 2014

What I Didn't Know About Losing Your Memory...

When I signed on for ECT last year, I knew I would risk losing memory, but I didn't really think through what that might mean.  I assumed it meant I would lose bits and pieces, here and there, good and bad remembrances of the past.  And it did mean that.  It also meant I wouldn't be able to remember simple processes, procedure and aspects of life that previously I took for granted.

Today I went grocery shopping by myself.  While this seems a very mundane and routine task, a year ago I wasn't able to do this.  I wasn't permitted to drive, and I wouldn't have been able to negotiate the store even if I could have made it there.  Who knew grocery shopping could be so darn overwhelming?  I never stopped to think about how many times I rely on memory when in the grocery store.  The layout of the store is the biggest obstacle.  If you have no memory of how the store is laid out, and what is paired with what, it gets really confusing and daunting, not to mention time consuming as you are constantly retracing your steps.  It is so strange to stand in a place that is familiar yet foreign, but I've experienced this many times since my memory became so deeply affected last year.

We've all been in a grocery store countless times, and shopping becomes almost automatic when we've done it so routinely.  But last year stores became bewildering.  I would stand there trying to decide where to start and not knowing where anything was located.  I couldn't remember the pin for my debit cards.  This is still a challenge.  Cashiers would have to prompt me every step of the way through the checkout process.  The automatic knowing of what comes next during checkout disappeared.  Suddenly I was a blank slate and had to be walked through anything with more than one step the way you would guide a small child.

I didn't know how to use things. I didn't know how to follow directions.  I forgot the names of people in my real life and celebrities I've admired for years.  I forgot major events.  I couldn't remember where I was when 9/11 happened.  I didn't remember movies I'd seen, or books I'd read.  I jokingly said I was glad my degrees couldn't be taken like my license had been, but it really wasn't a humorous subject for me.  My education was my prized possession, and it was infuriating and frustrating to remember so little of what I had studied.

My connection and sense of belonging suffered because I didn't have the memories to make associations anymore.  I didn't remember most of my wedding day or any of our honeymoon trip.  I don't remember my graduation day from college.  And while it's sad not to remember specific events, I've found it far more difficult to deal with the day to day functions that are impacted when one can't rely on memory.

My understanding of the world at large changed.  I don't easily remember where other countries are, or how they relate to one another.  I probably couldn't correctly identify all 50 states on the US map.  I sometimes am unsure why we're on unfriendly terms with some countries and allies with others.

It was embarrassing, and still can be, to be unable to answer simple questions.  "What medications are you on?"  Uh...I'm not sure.  "What brand of dog food do you use?"  No idea.  "Have you ever been to...?"  Can't say for sure.  I can't tell you how many times I've heard "Don't you remember?"  No.  I do not.

I lost the continuity of life and the pattern of day to day.  I had no routines, because I didn't remember what they were.  I stopped doing many basic activities, such as cleaning, because it seemed complicated.  I didn't know how to do those things anymore.  What was once a natural process of grabbing the cleaning products, scrubbing, brushing, sweeping and mopping now seemed complex and unfamiliar.  I didn't know what step came first and what came last and because it was all so overwhelming I just withdrew completely.  

Fortunately, my memory is improving, be it a little too slow for my liking.  I am on a medication that is generally used for Alzheimer's patients, and it does seem to be helping.  Memories of events haven't returned much, but my ability to figure out "how-to" is.  Most of the tasks I am relearning tend to stick, or at least become more familiar and I am becoming more at ease with doing activities and tasks on my own.  Getting my driver's license back was a huge aid to my sense of independence and has allowed me to become more confident in going to appointments and running errands on my own.  I am reestablishing patterns and routines that give me much peace and reduce my anxiety by creating a sense of stability and familiarity.

I never thought about how much our sense of who we are in the world is connected to memory.  I never thought about how our memory contributes to how well we navigate life.  I have much more compassion and understanding of what loss of memory really entails than I did before last year.  I hope strides in medicine and science can make progress in understanding memory loss and how to help those who struggle with it.  

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