I was born into the world with some unique medical issues that required surgery.  I wish I could say that the medical issues stopped there and I have been a picture of health since then, but that is not the case.  For the most part, my first issues were taken care of in my very young days and have not caused too many issues over the last 40 years.  I have, however, developed some other issues in my nearly 40 years of life.  Most are incurable.  All are not contagious.  Some I deal with on a daily basis and others have been successfully managed.  All have been difficult to find proper medical assistance.

No issue was more baffling than the one we call Ethel.  Ethel was a name my mom and her friend used to call each other when they were feeling old.  I think it was a reference to a television show, but I don’t really know.  Anyway, Ethel, came into my life around 2007.  We named the episodes Ethel because I needed a way to tell close people in my life what had happened in a quick manner.  If I said, “Ethel happened last night,” my friends would understand and then I could give them the details without having to go into a whole story.

Writing about Ethel is difficult.  One, I don’t remember being Ethel.  Two, Ethel created a lot of difficulty for people I love.  Ethel moments were episodes of memory loss.  I didn’t know who I was or what I was supposed to be doing.  I didn’t remember my family or that I was married.  I was never dangerous, violent or angry.  I was told that I looked scared and I got really quiet.  I would often cry.  The episodes were brief and could always be managed by going to sleep and waking up.  In the later days, it could be managed quicker by relaxation techniques because we had a better handle on what we thought was happening.

I won’t lie, when Ethel was at her worst and happening 4-5 times a week, it was unnerving.  I was seeing all kinds of doctors who were running all kinds of tests to rule out different things.  All tests came back negative.  That was super frustrating.  Ethel was a diagnosis I gave myself.  If I could get one from a doctor then we could treat it, but without a diagnosis we were just trying to figure it out on our own and praying for answers.  Kevin was amazing and he helped me set up a plan in case episodes happened while I was not at home.  I had signs up in places where I was alone (home, car, on my phone) that told me to call Kevin if I needed help.  He also bought me a GPS that had preprogrammed destinations, so if I did call for help he could tell me how to get to the closest “safe” place until he could get there or had someone who could help me.

I had episodes in all kinds of places and situations.  We kept a journal to try to see patterns and we did, eventually.  Doctors had ruled out so many things, but in the process of ruling out narcolepsy they found out I have sleep apnea!  At first, I was disappointed.  I thought, “Great, just another thing we have to deal with right now!”  But it turned out it was the answer to the pattern of Ethel episodes.  Kevin and I started to realize that episodes were happening when I had not had a lot of sleep and were combined with stressful moments.  I began researching the effects of sleep deprivation and stress on the brain and found out I was not alone.  The research had different names and descriptions for what they were finding, so I never got a true diagnosis, but were given a way to keep Ethel at bay.

For the most part Ethel had a very low impact on my life because I don’t remember it and in other ways it was a huge part of my life.  I had a great support system.  When the episodes first started, I was afraid to tell anyone about them.  I didn’t want people to think I was crazy or weak.  I wanted to keep doing life how I had been doing life, but God put a group of people around me that didn’t make me feel crazy at all.  They prayed for me and gave me the freedom to talk about what I was going through.  They were there for me when they got a call from Kevin that I was headed their way and I didn’t know who I was.

I received my CPAP machine in early 2008 and the Ethel episodes stopped almost immediately.  There have been a few since then and they have all followed the pattern of sleepless nights and major stress.  The most recent was a few years ago and my CPAP mask was broken at the time.  It was a wake up call for Kevin and me.  We had gone so long without an episode that we had become lax in routine check-ins.  The episode made us more vigilant in making sure my CPAP was operational, but it did not alarm us into thinking we had entered a new season of Ethel episodes.

This has been really hard to write about, but the effects of Ethel are going to spill into other memories in my countdown to 40, so I thought I would share this sooner than later.  I am so thankful we got through this season.  Kevin was amazing and stayed so calm.  Even mid-episode when I couldn’t remember who he was, that we were married and telling him I didn’t feel comfortable sleeping in the same room, he was able to keep his emotions in check.  He always believed that these episodes where just episodes.  It was during this time he heard a song by Death Cab for Cutie called “I Will Follow You Into the Dark.”  It’s a song about death, heaven, hell and the after life, so it doesn’t really speak directly to our situation, but it encapsulates Kevin’s care for me.  Our dark was not death.  Our dark was episodes of memory loss, but Kevin graciously, fearlessly and carefully followed me into the dark, every time, to help bring me back to light.

So that is Ethel.  I’m glad she is not around anymore, but I’m so thankful for all things she taught me and how she brought Kevin and I together at a deeper level.  It is like so many hard things in life.  You wouldn’t wish them upon anyone, but you are so thankful for the strength they give you.