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.  

Courage Before Comfort...

What is courageous is a matter of perception that is based on any number of varying aspects including culture, age and life events.  Perception is a funny concept.  And by funny I mean odd, not humorous.  Have you ever listened to someone talk about how messed up they are or how they screwed something up and how down on themselves they are for it, and all the while you are thinking about how cool it is that they even put forth the effort in the first place?  Our varying perceptions make life interesting, and it's one of the many reasons I have long loved literature.  Every reader perceives differently, as does every listener.  Perception gives us variety.  It exposes us to new ideas and allows us to see what we were blind to otherwise.  But our own perceptions can really become far from the truth.  That's when it gets tricky.  

I've been taking an e-course about finding the gifts of our imperfections, based on Brene Brown's book "The Gifts of Imperfection".  This book speaks to me through and through because I am a major perfectionist and I am always criticizing myself for falling short.  I usually fail to give much credit to having tried in the first place.  If I was made Vice President of the US, I wouldn't celebrate my success, but rather criticize myself for not having done enough to become President.  One person might see the VP position as an awesome accomplishment.  Others would see it as second-best and clearly not as good enough.  Perception.

I have fallen into a bad habit of being so concerned with falling short that I don't even make the attempt in the first place.  Instead of celebrating baby steps and benchmarks I am often looking to what could be done better.  It becomes so uncomfortable for me to try experiences for fear of failing that I withdraw from life altogether.  And then disconnection rears its ugly head and causes a whole new set of problems.  

One assignment for this class I am taking was to come up with our personal mantra - something to guide us in our quest to become less perfectionistic.  I blatantly stole the author's mantra because it spoke so wholly to me.  "I will choose courage before comfort".

Comfort is also a tricky concept.  For me, "false comfort" is a true beast.  Sometimes it feels like comfort, because whatever it is allows us to feel less anxiety, be it through drugs, alcohol, food or any other number of numbing agents.  But the "comfort" becomes a problem in and of itself.  Drug abuse and addiction.  Alcohol abuse and addiction.  Food addiction and weight management problems.  Avoidance.  The list goes on and on.  None of those are comforting for long.

I've really tried to focus on allowing myself to be uncomfortable for a short term in order to gain longer term contentment.  It's so hard!  And harder in some areas than others.  I am able to apply this concept in some areas of my life and not in others.  Some days I do well at it and others I do not.  And instead of berating myself on the "do not" days, I am trying so to congratulate myself on the "did" days.

In making my way back from the difficulty of the past year, I am finding myself in need of a lot of support.  It's hard for me to admit that, because it seems like failure and lack of strength on my part.  Others tell me it is a strength to ask for help.  So I have been trying to practice courage in this aspect of my life and ask for support when I need it instead of taking pride in doing all on my own.  I'm still not very good at it, and it's really easy to fall back into comfortable routines, but I do see the benefits when I talk to someone and get my thoughts out of my head and feel that connection that comes from that vulnerability of opening up.  It's a bit ironic that I see vulnerability in myself as a weakness, but in others I admire it as a virtue.  

For me, it's teeny tiny steps at this point, but I think I will be more successful in the long run making small strides.  I hope I can get better at asking for what is needed.  I hope I can get better at leaning in to discomfort.  All I know is, this courage stuff is hard work!