My Treasured Friend Lewis Passed Away. Rest in Peace my Friend.

tatother

Hello my dear friends.  

A short time after I Published Epilepsy Unveiled Lewis sent me an email.  We became friends through a series of emails and shared experiences with epilepsy. I learned to love Lewis because he was determined to not allow epilepsy to rule his life. 

Lewis was my very first source of first-hand knowledge about psychosis other than my husband, Charley. Lewis told me he had experienced psychosis many times during his life with epilepsy and he was no longer bothered by people knowing that he had occasions of “crazy.”  At that time I was wondering how many people would have an interest in reading Epilepsy Unveiled and how crazy the people who did read the book would think I was due to my desire to expose and explain clusters of seizures that create psychosis.  In time, Lewis sent me some of what he had written about his feelings toward seizures and psychosis.  I am sure some of his and Charley’s feelings were the same at times.  Lewis and I (and his sweetheart, Heather) were a team trying to help others who have seizures and were experiencing psychosis to understand that the phenomenon they are living with is real, not a source of shame and they are not alone.  Ever.

Lewis told me that in 2009 his right temporal lobe was removed. He was seizure free for two years and then began the long road with seizures again.

Lewis also suffered with psychosis nearly on a daily basis. Like me as I observed Charley, Lewis knew something was wrong but could not obtain a definition of the problem.  Lewis extensively researched (the best that a regular person can do because information is scarce) epilepsy and psychosis.

Lewis was kind enough to share some of his writing with me.  As I read the words he had written I cried. My husband, Charley, suffered with the same ghosts haunting him but could not describe through writing how it made him feel.  I read the words Lewis had written and wanted to run to Charley and say, “Now I understand and I am so sorry.”  Charley died in 2006 which left his epilepsy, seizures and psychosis hanging in the closet of my mind like a ghost.  Because of Lewis, I occasionally whisper to Charley’s spirit and say, “I know you better and love you even more.” 

As the number of people continually increased of people desperately seeking information about psychosis and epilepsy I reached out to Lewis and asked him to be a mentor to others suffering the same as he. 

I also asked Lewis if he would allow me to publish his writing on my website.  I believe the words Lewis wrote can help others understand how horrible being psychotic can make a person feel about themselves and also the way society judges them.  I hoped some of the behaviors Lewis described would help those in seizure/psychosis situations recognize what was happening and seek medical help.  I lived with Charley’s epilepsy and erratic behavior for 22 years before he was diagnosed with psychosis. 

Though Lewis battled seizures and had bad days like every one dealing with epilepsy he wanted to help others learn to recognize and understand psychosis.  Sadly, Lewis is no longer here to help support the epilepsy community. 

If you are someone who knows they have psychosis and you want to share your story to help others please go to facebook.com/epilepsyunveiled and send me a message and I will post your story (or any questions you may have). This website was created to help everyone who has epilepsy. Psychosis is one aspect of seizures I take very seriously (and so did Lewis). So little information is available that describes the behaviors associated with clusters of seizures creating psychosis. Absolutely knowing you are dealing with psychosis is nearly impossible.

Rest in Peace my sweet friend, Lewis. Your help was greatly appreciated and I know you led others to understanding the truth about their psychosis. One seizure ended your life but epilepsy never did. You will forever be special in my heart. 

Until we meet again. 

Following are the writings that Lewis shared with me. Some are graphic, just as psychosis is. 

Lewis: 

I have already done a ton of research as I just had to… I needed to know what I was dealing with for myself…

#1

I will start with the first day in August 2006.
The now ex-wife woke me up and said to get ready we were going to the flea market.  They tell me I started yelling at her …  calling her “that fucking bitch.”  She got into the shower and I went in there and was yelling at her . . . .  I remember none of this.  The first memory I do have of that day is shaking my head standing in the bathroom in the middle of yelling at her and saying how did I get here?  So they explained it to me.  Then my memory is gone again.  They tell me that every 15 min they had to explain to me what had happened all day until around 2 p.m.  The next memory I have of that day was about 4 in afternoon I was half way out of the driveway walking to my truck when the memory begins. I remember getting in the truck and cranking it up.  I remember pulling away.  The next memory I have is in the hospital and a doctor telling me they don’t know what is wrong with me and maybe someone slipped me some drugs.  I got pissed at him told him he was a dumb ass. I only go to work and home no way that happened. I  walked out with him telling me I can’t leave and me telling him to try and stop me.  When I got in the truck there was a broken road reflector on my dash board and half the brush guard under the front bumper was missing . . . apparently I was driving around for almost 3 hours that I don’t remember; talking on the phone with a few friends that were trying to get me to go to hospital.  I remember none of this.  So December 2006 I was driving in the f-350 with 3 other guys who worked for me on the way to a job…the last thing I remember was going up over an overpass.   The next thing I remember was standing in the middle of the street shaking my head and talking to a cop? I asked him, “what is going on?”  “how the hell did I get here?” One of my guys (also a good friend) said, “you just wrecked the truck man! ” I said “holy shit are you f’n with me?  Is everyone ok?”   The car I ran into was pushed in to the truck in front of it no one was hurt, thank God!  I told everyone I was sorry and blacked out again.
The next memory was waking up in the hospital. The neurologist came in and told me that I had more back to back partial seizures on the E.E.G. than anyone he had seen in 20 years of being a neurologist!!!
 
Jake, my man in the truck with me, told me later that the car I hit was stopped at a red light and I hit her at 55 mph.  I never touched the brakes . . . he said that he asked me if I was going to hit the brakes and I looked at him and smiled real big!!! I haven’t driven since that day . . . they wont let me?
 
#2
 
This last time I was in status a friend found me . . . . out in a large field . . . .
soaking wet . . . . sweeping the grass with an old broom.
He tells me he asked what I was doing and my response was something to the effect of,  “cleaning up . . . just like you asked me to.”
As I continued to sweep the grass . . . . . undeterred by his interruption . . . .
the only thing I remember is him asking if i had a seizure . . . . and feeling fresh bites on the sides of my tongue.
I remember trying to say something about how I may have because my tongue was a mess.
The next memory is waking up in bed a day later.
 
I found out later that before going to clean the field I had gone thru a wall . . . . . left a body sized/shaped . . . hole in the drywall..
 
This is what I wrote in the post-ictal state after that particular status:
 
Seizurerific days come along when they please . . .
Days when every thought is blurred.
Not unlike the edge of a dream
every step . . . each motion as through quickly drying cement.
On the hardest of these days . . .  I just keep pushing.
Feel the sweat starting to run down my face . . .
feel my center being drawn far from here.
I cannot stop and simply let it take over.
I go on in spite of them all..
Even when the rain is my only company,
Torn between worlds . . .  each claiming to be the real one
when maybe neither is.
All I know of the past comes in tiny fragments . . . I do not know which of them are real;
I do not know that it matters what is and what is not real anymore . . .
here and who I am in each moment is all I ever have . . . when I even have that.
 
#3 
 
Some days it creeps around the edges of everything . . .
waiting around each turn . . . pulling at me.
Trying to tug me loose.
Some days I don’t know wtf i am doing from one moment to the next.
Some days I wish I didn’t like this.
Hard to fight it off when it the most powerful thing in my life.
Sometimes I just want to run . . . leave it all ablaze and never look back,
but the trail behind me is already littered with the ashes of a past I can no longer see.
I don’t know where I have been . . . I barely know where  I am sometimes; even that is too much to ask of me.
Some days the fucking beast walks beside me
claiming all the while to be the only company I am capable of keeping.
Whispering stories of things it has done wearing my skin.
Stories of how anyone who does happen to get too close is always hurt at my expense in the end.
It finds ways . . .  at times
to make to make anything I try and do have the opposite of my intended effect.
Better not to try at all . . . (half a lie).
It picks at any little flaw . . . it slowly tears away . . . slowly breaks down . . . the battle is never ending.
Of coarse that fucker is only one side of the coin.
There are whole other worlds which reach out to me.
When the music would come . . . I would hold onto it as long as I could.
Those moments which were never destined to last . . . so beautiful . . . so encompassing.
It was my abandoning this world for those moments which allowed the fiend to walk in my skin.
None of it has ever been anyone’s fault but my own.
To use neurology as an excuse, to shrug off blame is just that . . . an excuse
you see in the final score.
It is only from here inside my mind that I am separate from this thing.
No matter how I see it . . . to them it is/was all me.
The fact that from my perspective I was never even there
means nothing at all to those who know it was me they saw . . . heard . . . felt.
For me to even ask them to understand that it wasn’t me is far too much.
For me to ask anyone to make the type of exceptions it takes to truly know me is ludicrous.
“Everything is beautiful as long as I ain’t there.”

#4

Sometimes the storm picks us up and drags us off thru a flurry of dreams
yet all storms of circumstance spin and spin.
Stormy dreams are no different
so as we spin . . . .
I treasure each and every time we pass close to one another
those are the moments the sun shines thru the clouds . . .   
and as I drift thru the storm alone . . .
I look for that ray of light to cut into my darkness
if even for a moment, 
For those moments are worth every tear it took to find them.

#5


Today feels like an on the edge day
and it could go either way. 
Today it would be so simple to leave it all behind and simply drift away into nothing;
Today just as much force is pulling the other way
it could all go so well . . . .
but it never does
It could be so great!
but it never is.

Always the same mess . . . .
and the cleaning lady quit . . . .
something about wanting to be paid. 

I can only hold it all up so long . . . .
it wears on me . . . until i am ready to break.
No one gets it; 
No one wants to.

#6

 

I cant take their pills today
I like it better out here
trying to balance
back and forth across the line.
I’d stay on the other side if i could.
 
Is it selfish not to care for myself
falling down and bleeding out?
Some days reach beneath my skin
digging deep,
plucking nerves which haven’t felt shit in fucking eons.
There wallowing in self created pain;
I catch a glimpse . . .
something reminds me
I had a purpose once.
 
There was a time I did more,
More than digging in my own wounds
like trying to find china in the sand box.
 
Still the same kid
bleeding all over my fucking life.
This isn’t poetry . . . its how I’ll remember this fucking night
half in pain yet half alive.
 
Shit . . . for what its worth I cant even stop me!
Perhaps their is hope yet!
 
Thank you Lewis. I will forever be honored to have called you my friend.
 
 

About Lola Jines-Burritt