Monday, September 23, 2019

Flashbacks and moving forward

  Living with epilepsy was always like waiting for the other shoe to drop. I might feel fine when I woke in the morning, but never could predict when or where the next seizure would happen.  I felt like there was an ever-present storm cloud on my radar, darkening my mind with  “what-ifs” and “where will I be when it hits?”
Look at my journal from April 2005, when I was working as a personal trainer:

   “I’m troubled and scared with seizures popping up at very bad moments.  Last week, it was the first session I had with a sweet lady about 60 years old, finishing up standing at the front desk area when I felt that aura coming over me. Oooh, the sick, twisted stomach and deja-vu. Will it pass? I wondered.
Next thing I know my pants are all damp. And I know it’s not water. Coming back to my right mind, I realized what happened, and while the client is getting her receipt I clumsily grab some tissues and try to nonchalantly soak it up. As if it was totally normal. I was mortified! When I gathered my thoughts I explained my situation to this lady, hoping I hadn’t freaked her out. She was sweet and gave me a big hug, & I’ll see her again, but oh I wanted to die!
“Where are you, Lord? What is this supposed to teach me? I had one last night at dinner and another this morning...the helpless feeling of NO CONTROL is so disturbing.”

Friends, I wish I could say this was a one-time occurrence, but it happened repeatedly. Why share it now? For a long time I wanted to bury it, finding the memories unbearable. I couldn’t stand to replay them, much less speak them aloud.

But as time went on, I came to a new perspective. I learned not to be ashamed of something I couldn’t control, and I could acknowledge the struggle without re-living it.

And perhaps most importantly, recalling the turmoil I lived through gives me such gratitude for what I have now, and a real understanding of how it feels to live with a chronic condition. The old story of two footprints in the sand rings true for me... and it is only looking back that I see how I was carried, by the only One who could shoulder the load.

Sunday, July 14, 2019

A Strange Guilt

July 2019

At this writing I am nearing 18 months since brain surgery. What was once a pipe dream is my reality: a brain that doesn’t misfire! A year and a half out, 17 and a half years since diagnosis...the emotions have been so intense, pulsating in excitement, jubilee, and recently a feeling of discomfort when I read other survivors’ stories.

I’ve found great support in connecting with other epilepsy survivors online, and knowing my seizures weren’t so uncommon. I’ve made a few great friends too. Now, I feel a bit like an outsider. And the stories just break my heart, make me want to reach out and give everyone a virtual hug. I feel bad that I have it so good now.

I hate seeing other walking through the sludge when I’m living seizure-free. I hate hearing about friends’ seizure episodes and reactions to their meds, because I know that misery. I hate seeing others in bondage when I have this new freedom.

What do I even call it? Survivor’s guilt? Maybe that’s too strong a term, but I’m going to roll with it. Those years of seizures were quite traumatic at times, now I feel like I’ve been given a new lease on life. I just wish I could give this gift to everyone dealing with chronic conditions. I only pray to God to help me not waste what I’ve been given.

Sunday, June 2, 2019

Stormy Days

For the first 16 years of marriage, Wayne and I knew nothing but this: my epilepsy was part of our norm.  We had a jump start learning the “worse” side of “for better or worse”. I felt like I was walking on a minefield- how many seizures might blow up on my face this week?

The trepidation is hard to describe. I only knew that inside my brain, the clock was ticking. And if it had been a few days, get ready, because seizures were inevitable. I lived in a fearful anticipation, wondering when it might happen or how bad the next episode might be.

Counselors tell us not to hold things in, not to deny our emotions or heartache. While I would share my distress with a counselor, for the most part I kept it hidden. I was afraid of judgement, of negative response and I was just plain embarrassed. Even now, I shiver when I read journal entries of my darkest seizure days.
I talked to God a lot about this distress.  And one day Paul’s words to the Roman believers hit me like a bomb: “We have also obtained access through Him by faith into this grace in which we stand....not only that, but we also rejoice in our afflictions, because we know that affliction produces endurance, endurance produces proven character, and proven character produces hope.” -Romans 5:2-4

It’s a passage I could read a bit too quickly before my epilepsy came along. Such a lovely idea! Thank you, Paul, I couldn’t agree more.
But to follow Paul’s attitude and example is so out of our natural ability. You don’t realize this until you’re dealing with a true “affliction” with no foreseeable solution.
When will this end? I wondered and cried out to God repeatedly. Over time, I developed a tempered yearning for healing. I discovered life’s joys to be all the brighter when they shone through my stormy days.  And that discovery buoyed me, sustained me with just enough strength for each day’s need.

Wednesday, April 24, 2019

On Losing Control

Epilepsy control

We all like to be in control...And most of us function better with some regularity and predictability in life; you don’t have to be a “control freak” to recognize this. I’ve seen this truth solidified since becoming a parent; kids thrive with routine. And you’ve undoubtedly heard someone tell you “control is an illusion”- which is also true; so much of life and relationship is out of your hands. It’s a strange paradox.
And nothing teaches you the myth of control like having an uncontrollable health condition. Epilepsy is notoriously difficult to manage, even with the ongoing advances in neurology. “Epilepsy fails to come under control in about one-third of cases...” according to the Epilepsy Foundation.

Many years ago now, I went through a difficult and painful battle with an eating disorder.  It was several years of pain and battling inner demons and obsessions before I finally went inpatient, which pulled me out of my lowest place. I learned a LOT about letting go. It was the most humbling experience of my life.

Until epilepsy hit. Suddenly I was completely out of control again, but this time I had no choice, no ability to redirect, and there was no comfort in phrases like “this too shall pass” or the trite “one day at a time.”
  Those words don’t help when you get on the bus thinking “I hope I don’t have a seizure in front of everyone today”... or when you have a seizure and lose bladder control at work, a few days into a new job...When you long for a baby, but don’t know how that could ever happen unless your seizures are “controlled”.
I battled each of those situations, sometimes gracefully but often not. The answers would not come easily, or in the way I hoped.

Tuesday, April 9, 2019

Scary seizure episodes

   Battling long-term physical conditions takes its toll on you. Day by day, you trudge along, hoping for a brighter future or some kind of relief. If I went a few days without a seizure I would think, wow, if only this could last. But it didn’t, and my bubble was burst, and you can understand why so many of us dealing with incurable physical conditions also end up taking antidepressants. I did, and there is no shame in that.

Travel with me back to one of my scariest episodes... here’s my journal from November 11, 2005:

    What an awful week I’ve had. Starting Sunday, when I spent the entire day in the ER. Sunday morning I woke up not knowing what day it was, where I was, why I was getting up, & utterly confused. I remembered NOTHING of our trip to Ga in Oct, it was hard to believe I’d actually been there. 
Saturday night I had a seizure while we were just relaxing, & Wayne said I had another one during the night that lasted longer than usual. Maybe I had more, or maybe it was an especially intense one, but I was SO frightened to have no memory of the trip. Wayne called the on-call neuro who said go to the ER. And I cried throughout the day, asking lots of questions, trying to gather the pieces of the puzzle to slide into place. I remember hugging Wayne, telling him how scared I was. He was scared too, crying with me.
 And I had no idea what was going on- I could barely figure out where I was. That was the most frightening experience I’ve ever had, period. They gave me IV seizure meds & did an MRI, said increase my Keppra and call my main neuro Monday.

In the coming days the missing memories slowly returned. Still, the seizures continued, all hours of the day, and so I lived in fear of “when will the next one happen?”

Depressing, yes. Hopeless? No, but I was hanging on by a thread those days. I couldn’t see any light at the end of my tunnel. I clung to my husband, my faith and my friends...and I still do.

Saturday, March 30, 2019

Epilepsy 101


One in 26. That’s the statistic for the number of us who will develop epilepsy in our lifetime. Look around the crowded restaurant, the church service, the grocery store. There are plenty of us; many are afraid to speak it out loud, like I was for so long.
But not now. Now I will not be quiet! There is much that is misunderstood about epilepsy in the general public. So consider this “Epilepsy 101”. (There will be a test attention!) 😉

There are many types of seizures, typically described as either “generalized” or “focal”, the difference being how and where they begin in the brain. Mine were focal impaired awareness seizures. Yes, it’s a mouthful! AKA simple partial & complex partial seizures. These begin on one side of the brain and last 1-2 minutes. Mine came from the left hippocampus.

Without fail, I experienced a strange aura, a nightmarish sense of deja-vu. My body felt warm and tingly and I felt stuck to the ground, unable to move or speak. This is itself the “simple partial” seizure.
Then came the automatisms: lip smacking, mumbling nonsense, fumbling or sometimes falling down. That’s the part I never remembered. Afterward, I felt mentally foggy, scatterbrained and lightheaded. If you didn’t know I had epilepsy, you might think I was daydreaming or on some type of hallucinogen. A few times I lost control of my bladder. This left me hysterical and increasingly anxious.

Many of my seizures happened in my sleep. My hubby Wayne says my body twitching woke him up, and my breath-holding was what made his heart pound. I would grind my teeth hard enough to break them. Wayne says it was “horrifyingly scary”, particularly the anticipation of a long, bad seizure. And we dealt with a few of those.

Epilepsy is notoriously difficult to treat. And when the seizures morph over the years like mine did, you’ve got a complicated exercise in frustration. No medication or combo of meds could ever fully control my seizures.

So there you have it— a little taste of what we dealt with for 16 years. I’m an open book, as you can tell by now. Send your questions my way...and whatever you’re battling, I promise you’re not alone! Speak up and speak out. Knowledge really is power!

Saturday, March 16, 2019

Help is on the way

Remember that excitement and counting the days till your 16th birthday, that oh-so-magical new freedom of driving? I enjoyed that privilege for seven years, then epilepsy stole that freedom. Thus began my daily lesson in asking for help.
In Colorado, the rule is “3 months seizure free” before you’re clear to drive. If you told me it would be another 16 years before I would get behind the wheel, I would not have handled it well.
I was sure that some medication would take hold and I’d be free, but sadly that was only a pipe dream. Over the years my attitude about needing help would change greatly, but initially I fought it tooth and nail. Look at my journal:
     “I’ve got to be ok with depending on others which I have an inner struggle about. It’s humbling for sure. I hate relying on everyone for rides! And this is my place right now. I’m not really angry—more frustrated, annoyed by the lack of freedom & the smothered feeling I have when getting into someone’s car. Sometimes I can let it roll off...I’m just tense, and I think, funny how traffic can be so annoying and now I wish I could drive in it!”

I battled my mental strife and had more than a few frustrating episodes with transportation. I felt as though I was the eternally needy woman, a hassle for people to deal with. Let’s see, who haven’t I asked for a ride lately? Did she drive me last week? Have I used her help too much?”  And then I’m battling not only the seizures, but the mental anguish of having a condition with no known cure. Understandably, my mindset was quite dismal.

I think I was hell-bent on proving something. You’ve done it too, let’s be real. In our fiercely independent culture, that’s how we roll. This isn’t too much for me, I think I’ll be fine on my own. Honestly, friends, there is no shame in needing help; there is something precious about learning inter-dependence. It would take a long time for me to embrace this idea. I’ll unpack it more as the weeks go by here. But the challenge is, can you and I graciously ask for and give help when needed?