Living with Memory Loss…

I’ve been on hiatus for the last week…digesting my Thanksgiving meal, catching up with family and friends and overall…just resting. WOW did that feel good! So sorry if you’ve checked in and wondered if I went missing! But sometimes I think we all need some time to re-group!

We journeyed to Maryland for Thanksgiving 2010 for a few days, to stay with my husband’s parents. Since I lived in his hometown during two different periods of my life, I have many friends and acquaintances there, so as is typical with our visits, there were many reunions with people from my past. And, also typical…there was much anxiety and frustration.

I’ve written several times about memory loss and the aggravation and stress that go along with it, but visits like my holiday stint last week really add to my difficulty of living this life with Epilepsy.

It’s one thing to not recognize people you meet or bump into, but it’s entirely a different story when you can’t remember important times in your life. Life events and our memories of these times really identify us and help form our personality. They shape us. So, when your mind tosses out these memories, it’s almost as if you become an incomplete person. That’s where the frustration lies.

My brother-in-law is a huge off-shore fisherman. But it turns out, my husband once loved the sport, and I had little or no recollection of that. I vaguely remember weekend days when he would go, but it was very sketchy to me, and that was overwhelmingly upsetting. My very sweet sister-in-law is accepting and understanding of my affected brain, and almost automatically, she takes it upon herself to remind me of events and moments in my life. But still…to not remember something so important to the one you love? For some reason, this holiday trip had a bigger impact than usual on my ability to remember. My memory loss affected me more so than usual.

So, when I returned home Monday evening, I began to dig…dig into my past. I looked through literally hundreds, even thousands of photos which are stored on my computer, some are prints…in books and bins. I came to the conclusion that I barely remember certain events, but the pictures certainly help trigger my memory.

Memory loss due to my seizures is something I know I will always struggle with, and the fact that it will most likely worsen is quite daunting, but I’m thankful for my close friends and family who can tolerate and console me.

Worth, accepting the 2009 Epilepsy Foundation of Michigan Flame of Hope Service Award

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December 13, 2011 at 10:40 am

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Jeff Nelson December 2, 2010 at 12:04 pm

I deeply understand the frustration of memory loss! I used to be a really great writer in college for my essays etc., though, after graduation when the seizures took a harder hold of me, I could hardly catch the words I wanted when having a simple conversation with someone. One thing I know is that you shouldn’t feel like you are loosing your personality due to memory loss of past events! My wife and I are having a child in a few months, and I know that God has plans already set for that little guy in the womb…..personality and all. Yeah…o.k,…daily life events, experiences, and teachings help to mold out how we view life, and ourselves, though I don’t think they can change our spirit! In the deepest part of my heart, despite being a grown man, adult, and husband, I know that my spirit is still the same little happy child it was when I was born. I’m thinking all the fear, worry, unhappy thoughts, frustration etc., are only things on life’s path to either keep us from enjoying what is happening right now, focusing on what is most important, or helping us to get closer to what is most important! I am a Christian, though one of my college professors was a Buddhist, and I remember him saying something that I never forgot! “To become enlightened one must not live in the past or the future, but in the moment as direct as possible.” It is wonderfully pleasurable to discuss old time memories and such, but it an interesting thing to think about considering how often we tend to worry about what we need to do tomorrow, or what we did or happened the other day, completely loosing that very moment to live in happiness. Note to self……”Try my best to stop worries and frustrations, seizures that have taken place, or may take place in the future, and just seize the moment!”

bryan farley December 2, 2010 at 12:13 pm

it is sweet that you care.

there are many people who lose memories, whether a person has epilepsy or not, and they just don’t care about their loved ones.

I am guessing that your family continues to show you old photos, because they know you care… and because they care about you. I doubt that they really care if you remember details about their fishing trips or other activities. They are happy that you remember that you care about them.

Of course, I know what it is like to lose memories and wonder how much I have forgotten. I try to reconstruct the past, and this might explain why some people think that I “live in the past.” I just don’t want to forget. Anything.


Mark Espy January 4, 2011 at 2:20 am

I have had epilepsy for the past 37 years. Since I was 12 years old. It seemed each time after a seizure there was time lost were you couldn’t remember, but you would try to get back and remember what happened. Like somehow it would help you. After all this time the only thing I have found is a since or feeling when a seizure might start coming. An Aura if you will. However memory loss I have experienced for years. We sometimes will not put down that we have epilepsy on an application due to fear of not getting a job. And try to deal with it later after we get a job. Explaining that our medical condition and medication makes us slower because it slows our thought process down so we don’t have a seizure. This in turn might cause us to forget some of the details we were suppose to do. Makes it kind of hard to keep a job this way. Wouldn’t you agree. Family try’s to understand but that can’t really. After they ask a few times for different things I’m sure it gets annoying. And may even make a good party joke. So how do we, as epileptics live with this? One day at a time. First : reignize your warning signs.before you have a seizure.smells,lights,feelings,sound etc.try to keep track. I did not for years and finally realized to pay attention to myself. 2: remember the basic rule. take medication at the same time each day, eat regularly, and get at least 8 hrs of good sleep. Any one of these three missed can cause a seizure. I have found some things to help with memory. playing chess, reading, games that make you concentrate and challenge your mind may help. Reading the news paper. Simply sitting in front of the T.V won’t do it. Keep your mind active. It might help. Good luck

Alysse March 5, 2011 at 10:58 am

And good luck to you too! Thanks so much for reading and writing!

Myles Harris April 22, 2012 at 9:26 am

I’m 25 years old and have been living with epilepsy since I was 12. I find my frustration levels increasing as each day goes by due to my memory loss. The thing that irratates me the most is that when I try have a conversation with someone I cant get the words out and sometimes completely forget what I’m saying in mid-sentence! I thought perhaps my mind was getting faulty due to me hitting my head against the corner of a table every time I have a seizure, but now I see others speak of having the same problem. P.s does alcahol aggrivate epilepsy?

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