Identity

Identity is a big thing – who you are, who you think you are, who others think you are – all make up a piece of you. 

Some of my earliest memories are wrapped up in who my parents were molding me to be.  Many of my middle school memories are consumed with who my friends thought I should be.  Some high school memories are obscured by who my coaches wanted me to be. My young adult (early marriage) memories include how Doug helped me become who I would be.

One of the harder parts of my cancer journey was losing my hair due to chemo treatments.  I don’t know how it is for you exactly, but for me and many people I have collaborated with on the topic of hair loss, the general consensus is that hairstyle helps you identify who you are and who you want others to think you are. For example, I bet seeing a man sporting a man bun brings up different feelings for you than seeing a man with short hair and sideburns or seeing a man with long dreadlocks or a man wearing a toupee.  They all bring up different feelings in me.  I identify with all of those images differently.

Being cancer-bald for a little while did not exactly assist in building my confidence.  In fact, it echoed the fact that I was sick.  I did not like that at all! I definitely did not want that to become my new identity. 

As a child, my mom liked my hair short.  I did not like it short.  I wanted it long like Marsha Brady’s on the Brady Bunch.  As soon as I was “old enough,” I grew it long.  It never looked much like Marsha Brady’s long, straight, and controlled style.  Mine was curly, longish, and wild.   I liked to primp it, clip it, braid it, and spend way too much time on it in front of the mirror.  In a superficial, intimate way, my hair helps me create me.

More than hairstyle, however, there is also identity in our individuality by what we do or how we see ourselves, what we have achieved, or even by what we have failed to achieve.  It is usually expressed in the form of a label.  Like, I am a middle school student, or I am an athlete, a CEO, a painter, a husband, a caregiver, a mom, a Navy officer, a dyslexic dog-loving gang member…  Sometimes, identity is even established by what has been done to us. Like, I am the child of an alcoholic, or I am divorced, or I am the youngest of 8, or I am old.  You get the point.

I am no expert on the subject of identity.  People have Ph.D.’s in this field!  I only have my life experience as I see it through the lens of my individuality and one college psychology class in which I got a C. There is one thing I know for sure about this topic: I have cared deeply about being identified as Doug’s wife and the mother of our kids.  I have worn that label proudly.

Unfortunately (or fortunately, depending on how you look at it), dementia is not at all concerned about identity.  It flips the importance of clarifying uniqueness on its head.  Doug used to be an impeccable dresser, for instance.  He steam ironed in detail.  He cared about the seam on the sleeve of his pressed shirt.  His identity cared.  Sometimes, he wore wrinkled jeans and a sweatshirt, but his distinctiveness mattered to him when he cleaned up on purpose.  Dementia just doesn’t care that much.  Sadly, without intervention, Doug might now wear a shirt inside out and backward without concern of dishevelment.

Dementia’s disregard for identity also affects relationships.  It is tough watching Doug struggle with the names of our grandkids.  We have 8!  They are each unique and beautiful in their own way.  Doug gets a hollow look in his eyes as he struggles to match names and faces, and he glances over at me with that panicked “bail me out of this, please” look.  I think names have a lot to do with identity, too.  But that’s definitely a topic beyond my scope of knowledge, even with Google at my fingertips. 

Doug knows a lot of people. He knows a lot of people by name.   He has a lot of friends.  He has always cared deeply about friendships and for the people he has called friends and who call him friends.  Doug could tell you where they met, why they became friends, where they have been or traveled together, and the significance of the friendship.

Doug and I have been friends since the first time we met.   That does not mean it was love at first sight (although I admit he caught my eye) or that we have always agreed about everything, but we have always been friends.  He has known me better at times than I have known myself.

Until recently.

Recently, Doug asked me if we were married.  I thought he was kidding and nearly dismissed it with some flippant, sarcastic remark until I looked into his eyes.  His eyes showed honest, empty confusion.  My heart sank.  He also expressed confusion about parenting our children together.  He asked what my holiday traditions were when raising MY children.  Again, I looked at him to see if he was serious. Sadly, he was. When I shared a holiday tradition that WE (he included) enjoyed, he looked at me with that same hollow gaze I am beginning to recognize as the “I’m not quite sure” look. 

When these empty dementia cavities occur, my heart sinks. I know it means further progression into the disease.  It means more to come.  And then, because I really don’t know how to feel about these advancements, I become blankly sad and institutionally practical.  I sweep the floor, clean out the gutters, or knit. The man who has helped me identify me is woefully losing touch with me, with us.

This was never as unmistakable as the recent time dementia interrupted, and identity was utterly abandoned. 

Doug and I sat peacefully at the table, building a 300-piece European streetscape puzzle together.  He started his dialogue with, “I have something I need to tell you…” I thought, “Okay, where could this possibly go? His language is impaired, so I may need patience and help fill in the blanks.” He started telling me a familiar story about his (our) dementia journey. I have heard him tell (and I have told) many times.  He told it like it was the first time I had heard it. No big deal, he has dementia after all. I knew I needed to be patient, which isn’t always easy, and let him tell it again.  

He came to the part where I entered the story.  This is when it got dicey.  He told me about the happenings as if I were an outsider in the account when I was a key player in the plot.  He referred to me in the third person.  He said things like, “then Karen said… Karen was there, and she… I told Karen…”  He told me the story like I was a stranger newly acquainted with his dementia.

A knot formed in the pit of my stomach.  I felt my pulse quicken.    I wanted to interrupt and say something mean like… “What are you talking about? I’m Karen! I was there!” I wanted to run away.  But I also wanted to see where this was going. So, with the knot tightening in my gut, I silently dusted off my courage, and I sat like a statue with a “Chateau” sign puzzle piece between my sweaty thumb and forefinger.  I reminded myself to breathe.  I listened as he struggled with the words, the concepts, and the memories. It was laborious. I could not bring myself to help him.  I was undone. 

Doug finally concluded, “So I just thought you should know that.” I looked at him and wanted to correct him and set him straight with all the who’s who, but instead, I wrapped courage around me tighter and awkwardly uttered, “You were lucky Karen was there.” He said, “Yes, I was.”

I was frozen.  My identity as Doug’s wife, as his friend, and as Karen, just plain ‘ol me, was absent.  I was at the puzzle table in my house with my husband, and at that moment, I was a stranger. I was unknown. Nameless.  Lonely.

I put the “Chateau” puzzle piece down and said, “Thank you for sharing that with me,” as I pushed the chair back and dismissed myself to the kitchen.  Reality felt slippery under my feet.  I took a deep breath and exhaled slowly with the realization that, tragically, more of this is to come. 

Dementia is a robber of knowing.  It chips away at existence like a miner’s pickaxe; slowly, methodically, constantly, and entirely.  Being on this journey is often called “The Long Goodbye.”  I am not ready. I don’t feel ready for the progression that is coming.  I am not ready to be forgotten.  I am not ready for…  any of it.  I am definitely not ready for goodbye.

In short order, Doug was back to being Doug, and I was back to being Karen. Things are back to “normal,” as I write this.  I’m recognized, known, depended on, and nervous and sad, and honestly, kind of mad. I count the good days as blessings.  I am praying and asking for these good days to continue.  I’m not asking for much, really.  Just one day at a time until I am braver, more capable, sturdier, more willing, and ready.

Karen