Epilepsy Talk

Poetry Is Music To The Soul… | June 13, 2011

And we souls with epilepsy could use a little music.  But, since we can’t hear you, we’ll have to settle for the written word.

So, whether it’s lyrics or poetry…write on!


77 Comments »

  1. That Feeling

    That feeling follows me around again,
    sneaks up behind, then lurks, and pounces hard.
    Its hateful purpose? Steal my oxygen.

    Come, dignify me as a citizen,
    it screams. Parading on my boulevard,
    that feeling follows me around again.

    They try to grab me, ugly, angry men,
    while, as I fade, I wish a muscled guard
    would stop their hateful purpose. Oxygen,

    my lifeblood, regulates my regimen
    and keeps my injured brain from being jarred.
    That feeling follows me around again.

    I wish this all would end. I wish amen,
    so be it, but I disappear. Discard
    its hateful purpose. I need oxygen

    to ride into the sun, equestrienne
    who roams the land for her poetic bard.
    That feeling followed me around again
    but I worked hard to steal its oxygen.

    Copyright 2011 Maggie Mendus

    Like

    Comment by Maggie — June 14, 2011 @ 1:03 AM

  2. That is a beautiful poem, Maggie.

    APOLOGIZE

    I did not write
    This peom ahea
    Of time, I must write
    That I apologize

    I made a mistake
    That I must amend
    My very own mistake
    That I must apologize

    Was it my confusion
    That is part of my epilepsy?
    I have had seizures lately
    I still must apololgize

    My confusion caused me
    Problems that can
    Embarrass me and hurt others
    Please forgive my confusion

    Like

    Comment by ruth brown — June 14, 2011 @ 2:41 AM

  3. Mouth fills with metal…
    Limbs start to dance…
    Is it that time perchance?

    It won’t be long now.

    Like

    Comment by Phylis Feiner Johnson — June 14, 2011 @ 1:33 PM

    • Short, but tells it all. I can relate. And that’s the point in doing this.

      That feeling follows me around again,
      sneaks up behind, then lurks, and pounces hard.
      Its hateful purpose? Steal my oxygen.

      Come, dignify me as a citizen,
      it screams. Parading on my boulevard,
      that feeling follows me around again.

      They try to grab me, ugly, angry men,
      while, as I fade, I wish a muscled guard
      would stop their hateful purpose. Oxygen,

      my lifeblood, regulates my regimen
      and keeps my injured brain from being jarred.
      That feeling follows me around again.

      I wish this all would end. I wish amen,
      so be it, but I disappear. Discard
      its hateful purpose. I need oxygen

      to ride into the sun, equestrienne
      who roams the land for her poetic bard.
      That feeling followed me around again
      but I worked hard to steal its oxygen.

      Copyright 2011 Maggie Mendus

      Like

      Comment by Maggie — June 14, 2011 @ 1:42 PM

  4. What’s this? I replied, but the reply box wasn’t empty. Let’s see what happens here.

    Like

    Comment by Maggie — June 14, 2011 @ 1:43 PM

  5. Hi Maggie,

    I love your poem. as long as you get the “reply box,” that is all that matters. Do you get an email asking if you want to subscribe to the post. You press the link and it is activated. I get an email from WordPress everytime a New Post comes up and I answer to it.

    Like

    Comment by ruth brown — June 14, 2011 @ 4:08 PM

  6. Hi Maggie,

    If your message, is still in the reply box after your reply has been posted Sorry for my grammar. I just delete the old message in the reply box and put in a new one. Next time, I will put in a poem.

    Like

    Comment by ruth brown — June 15, 2011 @ 2:32 AM

  7. I didn’t mean to deceive him,
    but how was I to believe
    when he said he loved me true,
    he’d “love” my epilepsy, too?

    Like

    Comment by Phylis Feiner Johnson — June 16, 2011 @ 7:34 PM

  8. That’s a good poem, Phylis. My husband married me knowing that I have epilepsy. We have been married for 47 years, now.

    YOU RUINED ME MRS. E

    Oh, Mrs. E,
    cannot you see
    how you have ruined me.

    You ruined my dream vacation,
    before I left California.
    Seizures you gave me on my vacation
    I had to come home from my vacation

    I say things I do not remember
    I do things I do not remember
    You are ruining me MRS. E

    You do not care how you ruin me
    You do not care who you ruin
    You do not care how you ruin
    my friends everywhere

    Dedicated to those whose lives are ruined by epilepsy.

    Ruth Brown
    May 23, 2009

    Like

    Comment by ruth brown — June 17, 2011 @ 7:42 AM

  9. We wait and wait
    for the new drugs to take…
    biding our time,
    losing our minds…
    as we seek another solution

    Like

    Comment by Phylis Feiner Johnson — June 17, 2011 @ 10:52 PM

  10. Hi, friends. Well, the “summer cold” has turned into a severe asthma attack. I am so sick. Yesterday the doctor said that if he doesn’t get my coughing under control it could cause a seizure. He was near putting me into the hospital. Instead, I’m home, with an inhaler, Prednisone, Vicodin, and Mucinex. I had a decent night’s sleep last night but I feel terrible again today.

    Like

    Comment by Maggie — June 21, 2011 @ 6:05 PM

  11. Sorry I can’t be there…
    to prevent a seizure.
    But please be sure
    we hope your cure
    is right around the corner.

    Feel better real soon, Maggie!

    Like

    Comment by Phylis Feiner Johnson — June 21, 2011 @ 9:17 PM

  12. Phylis, I love your poem
    Maggie, is your air quality bad?
    It sounds like you have been had
    by bad air quaility at home
    I have asthma that bad
    The air quality weather report
    is not the kind of sort of air you breathe
    What state do you live in?
    Maggie, I live in CA.

    Keep us updated, we want you to get well. We are worried about you. We care about you.

    HUGS

    Ruth

    Like

    Comment by ruth brown — June 22, 2011 @ 4:55 PM

    • Hi Ruth,
      Thank you so much for your concern. I live in Michigan. For sure I will begin to pay more attention to the air quality reports.
      I posted on the “What Part of E Do You Hate Most” but briefly I’ll say that I got home this morning from three days and nights in the hospital. I’ve been very ill, and don’t know where this “serious bronchitis precipitated by a severe asthmatic attack” came from. How awful I’ve felt. I was sent home with a nebulizer, as well as oxygen for a week. Still coughing, still pain, but no more wheezing and no more shortness of breath. Doctor said this will probably last six more weeks. That is unbelievable to me. But I’m resting and doing what he told me to, so hoping to be better every day. Thanks for caring.

      Like

      Comment by Maggie — June 25, 2011 @ 1:18 AM

      • Hi Maggie, I had pneumonia a few years back. I will never forget it. I did not even know that I had it.

        I have asthma attacks, as well.
        They are not so swell.
        I do care about you,
        we are a family here, as well.

        I do not remember how many weeks
        that I was so sick. It is awful. Do not go out in the bad air quailty days.
        I do not. Your system is weak.
        You do not want to get worse. Take Pedialyte for an upset stomach or diareha. I take Echinachea for
        my immune system. You do not want to
        have seizures from this to. Are you?
        HUGS, Ruth

        Like

        Comment by ruth brown — June 25, 2011 @ 1:58 AM

      • Maggie, you’re going through hell,
        and we wish so hard you’d get well…
        But you know you need your rest…
        so that you can be your best,
        and come back to sing for us.

        Like

        Comment by Phylis Feiner Johnson — June 25, 2011 @ 1:25 PM

  13. Hi ! Good reading thanks .It all sounds”feels” so familiar? I wonder why?
    I started writing down some of my ramblings while going through a very long postictal state and was alone inside in the winter.
    I allowed my mind to wander to far sometimes and was also listening to music that had a sometimes ,profound or at least deep meaning while in a type of synaesthetic shock .
    Maybe not so much poetry on purpose ,but it expressed my feelings .
    HURT In response to Johnny Cash HURT
    “” YOU STAY THE HELL AWAY FROM ME YA HEAR” Thanks I awoke suddenly 2.a.m.? pain? confusion? broken? Medication SUCKS I’d rather be an addict again.breathing color,feeling in reds and yellows,taste in silver like metal hearing ,blue gray,fading, I would like to SCREAM but then others will know,burning? cold?afraid to lay down ,haunting dreams,can only smile with eyes closed,pushing,pulling, from the inside,I am pissing “IT” off,clear but numb,a fishbowl,sleep while standing? HURT? NO, LIFE Rick

    Like

    Comment by Rick — June 24, 2011 @ 12:56 AM

    • Rick you said,
      I would rather be an addict again.
      You do not want to be an addict again.
      That will only cause you more seizures.

      You were really hurt, do not hurt yourself more.
      We are a family here.
      We waant tyou to stay here.
      We do not want you to hurt anymore.
      HUGS

      Like

      Comment by ruth brown — June 25, 2011 @ 2:07 AM

      • Yes I fully understand that.
        I do NOT do that or have no real desire to either.
        Understanding where some of those thoughts were starting from might help you.
        That little line probably just came from the fact that the lyrics were written by an addict .
        When we have our emotions in the fore front along with often heightened awareness ,sometimes we may express ourselves in ways not possible even a day later.
        The feelings from those times deal more with Death than anything and can be disturbing if not understood. http://youtu.be/o22eIJDtKho Thanks Rick

        Like

        Comment by Rick — June 25, 2011 @ 5:41 AM

  14. Wow Rick. That IS vivid, powerful and angry. Sometimes a stream of consciousness can be the most powerful tool of all. No restraints, no rules, no grammar…just let it rip!

    (Well, it was certainly good enough for James Joyce!)

    I especially like the color allusions. Do you think any of it was “inspired” by the music?

    Like

    Comment by Phylis Feiner Johnson — June 24, 2011 @ 11:43 AM

  15. Hi! Yes that was written as a response to “hurt” on u tube for 500 letters or less.
    Yes “inspired” is a round a bout of saying it though.
    When dealing with P.T.S.D.,depression and not quite understanding what an impact that it had on my mind,brain with a seizure disorder,I was alone and was just getting lost in the lyrics and when your feelings are on your sleeve so to speak and raw like they are after long t.c. szs. ,well a lot of my self was left exposed I guess.
    Also understand I have went through many ,many periods of what can only be described as ‘near death experiences” I also have come to understand Synesthesia a lot better or differently now .
    My thoughts from that “awakening” were from a new thing ,where I was having szs in my first r.e.m. cycle ,but I was jolted awake first and would go through a long period of an electric feeling over 1/2 my body ,left and right sides.
    Although the near death experiences are nothing new to me ,expressing them in a few words is. I will show some of them here. I now think a lot of this was also the sz. activity switching sides of my brain again .
    Thanks and be careful please Rick Wichita Kansas

    Like

    Comment by Rick — June 24, 2011 @ 6:45 PM

  16. Thanks for your explanation…thanks for trusting us enough to post that…and thanks for being here.

    Like

    Comment by Phylis Feiner Johnson — June 24, 2011 @ 7:11 PM

  17. Yes maam ! And no thank you .
    For providing the place. I have been reading everything as usual all along I just kind of gave up posting i guess for a while . The learning just seemed futile I guess ,kind of why bother learning if there is nothing that can be done ,but use MORE drugs and maybe my attitude from other issues just left me in a position of “If you have nothing nice nice to say the say nothing at all” I laugh at that too because what has scared me the worst of anything so far in life is the idea of me becoming a jerk lol. I copied a lot of stuff and saved it in drafts in folders and will try to show at least some of this in order ,after that first response. I have not shown this to many people and If I played it on Doctor Phil I would get committed but this may be the limited people who will understand all the not so fuzzy details. Thanks Rick Wichita Kansas

    Like

    Comment by Rick — June 24, 2011 @ 7:34 PM

    • You ought to go to the posts “Gratitude is the attitude.” We ran out of room 4 times, so now we’re on the 5th thread!

      Thanks for continuing to post…

      Like

      Comment by Phylis Feiner Johnson — June 24, 2011 @ 8:34 PM

      • Hi Thanks I will. Can you provide the link lol I am a little slow and not finding where it is you meant? Thanks Rick

        Like

        Comment by Rick — June 25, 2011 @ 5:14 AM

  18. I WILL KEEP MYSELF I WILL FIND A WAY” Awake again,2a.m. COLD,rush of warm,BLOOD ?,damn,quiet,choices? confusion? feeling? grey,ringing in very low tones,911 in a blizzard? wait and find the cuts ,big mess ,broken tables,broken? will the others know I am “broken” pain LOL ,LIVING in short bursts,how many joints can you dislocate at once? IT pushes me down WHY,WHEN,MAYBE FORGET THIS TIME? clicking sounds dark,blue,green,feelings flatlined?VERY small mind,closed,peeking out? IT WON’T LEAVE RICK

    Like

    Comment by Rick — June 24, 2011 @ 8:06 PM

  19. I see a mass of confusion…
    with more than its share of contusions.
    But surely there must be a way out…
    with care and friendship, no doubt.

    Like

    Comment by Phylis Feiner Johnson — June 24, 2011 @ 8:37 PM

  20. Rick, you have awful seizures.
    You need to change your medications
    to lessen the severity of your seizures
    Chage neuro’s if you have to or your GP
    Maybe then you will see relief seizures.
    Keep us updated, we are your friends
    We understand what you are going through

    Like

    Comment by ruth brown — June 25, 2011 @ 1:41 AM

  21. LAUGHTER IS THE BEST MEDICINE

    I wathched my favorite movie last night
    “Safety Last,” staring Harold Lloyd
    I laughed during the whole night
    He was a comedian in the 1920’s

    He climbed a 12 story building
    He broke a clock
    The scare made hearts melting
    It was like a lark,

    When he made it to the top
    His wife saved him at the top
    He made the whole 12 stories

    Ruth
    August 18, 2009

    Like

    Comment by ruth brown — June 25, 2011 @ 2:57 AM

  22. THE EDGE
    To explain seems senseless, but was able to “feel” the sounds the senses so ENHANCED that the waves became focused confusion.
    The edge is an odd place ? a date,time SURE, will say goodbye and check in no sweat and lol at “IT” But the unknown is my demon now ?
    losing time in lg. blocks is something we joke with UNTIL it happens.Is like having a stroke but then recovering 100’s of times.
    “IT” pushing me is why I may be acting diff. “IT” is close lol no sweat ,BUT when ? Rick

    Like

    Comment by Rick — June 25, 2011 @ 5:55 AM

  23. Good poem Rick!!

    Rick, is IT death?
    Is that the edge that you feel that you are falling into?
    Do you feel that your seizures are leading you there?
    I have been there, 3 times
    I have remained positive everytime.

    I still say, that Laughter and a positve attitude will keep you from falling from that edge, into IT.

    Like

    Comment by ruth brown — June 25, 2011 @ 6:21 AM

  24. “I still say, that Laughter and a positive attitude will keep you from falling from that edge, into IT.”

    Thanks I have generally lived my entire life like that,and I agree.
    The edge I I referred to there, I don’t know ? death? Sanity? “normal”
    The “edge” you are saying I have been to many ,many times.
    The seizures have changed my view,my perspective of LIFE more than my thoughts on death.
    That edge can also be the blackness of memory ,that blank space you KNOW once had something in it,when you reach for it and IT is just not there.
    Thanks Rick

    Like

    Comment by Rick — June 25, 2011 @ 6:44 AM

  25. You can’t run away from the black…
    though you’d rather look way, way back,
    to a time when colors were safe…
    and you could hang onto your faith.

    Like

    Comment by Phylis Feiner Johnson — June 25, 2011 @ 1:19 PM

  26. “Gratitude is the Attitude” for Rick https://epilepsytalk.com/?s=gratitude+is+the+attitude

    Sometimes, I get into a funk so bad that it’s like a black hole. Until I remember the safety ladder that I always carry in my pocket.

    I think of at least five things I’m grateful for. Or if I’m down there awhile, I stretch it to ten.

    Like

    Comment by Phylis Feiner Johnson — June 25, 2011 @ 1:35 PM

  27. I found your poem, Phylis. It’s so sweet, and generous of you to be thinking of me like that. I feel better today. Finally. The gunk in my lungs or bronchial tubes, or wherever, seems to be thinning, the coughing doesn’t hurt as much, and I feel as if I’m a person again. I guess the doctor is hitting me with so much medicine, and it’s finally taking some kind of effect.

    You have all been so wonderful, and there’s a real sense of community, friendship, and support here. No, I haven’t had any seizures, but one of the docs along the way said it was possible if the coughing wasn’t controlled.

    I’m not quite up to writing any poetry yet, but I’ll get back to it. Be well, all, and especially, if you get a sore throat or laryngitis, see a doctor WITHOUT HESITATION.

    Like

    Comment by Maggie — June 25, 2011 @ 5:06 PM

  28. Oh, one more thing. Phylis, I’d suggested my neurologist’s name to be added to your list of doctors by state, and just this morning he emailed me to thank me for doing so. He wanted your blog address, so I gave it to him. I don’t know whether he’ll leave any messages or not, but his name is Dr. Steven. H. Schechter.

    He wrote an endorsement of my book on the back cover, and offered to keep some books in his waiting room. Guess what? Some have sold. I couldn’t be happier.

    Like

    Comment by Maggie — June 25, 2011 @ 5:11 PM

  29. Terrific. You can tell him that several people from other forums recommended him also!

    Like

    Comment by Phylis Feiner Johnson — June 25, 2011 @ 5:39 PM

  30. Hi ! Thought I would continue to show a few more of these!

    THE WAIT
    Almost overwhelming for many, we all just wait! can we see IT?
    I live every day in redemption but when? why the wait?
    when I peek over the side will IT pull me IN or or will “IT” push me OVER?
    “IT’ hovers over moves around ,front and back, I smiled and waved “IT” slammed me to the ground!
    My soul smiles, my gate is frozen,I lost my ticket, The more steps I take away from the gate, the harder IT pushes me back!
    REDEMPTION IS FINE-WAITING IS HELL! Rick

    Like

    Comment by Rick — June 26, 2011 @ 7:15 AM

  31. Waiting is like bait…
    Anticipating all that you hate.
    The door is locked to redemption…
    while you hover in suspension.

    Like

    Comment by Phylis Feiner Johnson — June 26, 2011 @ 3:35 PM

  32. Rick, in your poem, what is IT?
    Is IT “death.” I do not understand, please explain it to me.

    Like

    Comment by ruth brown — June 27, 2011 @ 8:47 PM

  33. While I normally would not respond to a question with a poem and this is not quite in oder with the others and my mentality during that time ,this is a little better written and in a poem format. I “feel” IT explains itself.

    THE FUMBLE
    IT came as a whisper cutting short my whimper.
    MADE me say hello ,I just wanted IT to go.
    No formal introduction ,No title for IT’S function.
    Does IT need a reason ? Not sure but it may be teasing.

    I LOVE the warning it often leaves me mourning.
    Admire IT’S freedom ,IT’S range ,IT’S ABILITY to change.
    I crave air,IT let me forget ,that’s not fair.
    I read the verses,but IT reminds me rules are for fools.

    Sometimes it sits softly ,never revealing IT’S function.
    Then maybe a Tic a twitch ,A revelation that IT is near.
    IT is always angry with me,a twist ,a twirl,a clinch with a fist.
    Sometimes I smile ,IT has power how can I resist.

    Do I get to prepare, a soft bed or just a cold stare?
    Like a 1,000 anvils the weight, we try but the power is great.
    A BIG whoosh and a SLAM a reminder to beware.
    Angry growl,deafening howl,spit,blood, IT does not hide IT DOES NOT CARE!

    Like

    Comment by Rick — June 27, 2011 @ 10:40 PM

  34. His power is like a tower,
    leaving you weak and to cower…
    twisting, turning, howling,
    While IT reveals itself as a nameless foul.

    Like

    Comment by Phylis Feiner Johnson — June 27, 2011 @ 11:15 PM

  35. Rick, thank you for the explanation.
    Beautiful poem, I now know IT’s revelation.
    We all have IT.
    IT will not go away
    IT stays and plays
    With our brain.

    Like

    Comment by ruth brown — June 28, 2011 @ 2:08 AM

  36. Yes I assumed IT would be obvious.
    Pretty out there stuff for sure. the period of time these first writings came from have been the greatest change in my sz. activity in 18 yrs. My brain changed in many ways Actually effecting my personality and other functions ,like spelling,numbers,dyslexia my gait even how I use simple tools . Fascinating to me actually. I started with some of the most graphic ramblings on purpose . I have shown some of that to some people in chat that are “new” to this and it shook them up ,while another still contacts me because it explained EVERYTHING she had been feeling for months and was afraid to explain to others because of fear of being seen as insane.

    MY GRAIN CONFUSION

    MARCH 2011
    The confusion of my mind is doing it again 2 days in postictal re cooperation, I think Van Gogh would be most fitting
    It is a hard state to describe for others that have not been there,my aura is heavy, with only the cold to keep it at bay
    The sharp silvers have turned to mud!CRUD,If someone touches me I think will scream?cry? WAIT,hold out a little longer
    I go through hell only to see the devil smiling back,grin & bear it they say, never hey,ya wanna play,restless,vomit
    Feeling it! Rick

    Like

    Comment by Rick — June 28, 2011 @ 5:40 AM

    • Perhaps Van Gogh had it right…
      with his “Starry, Starry Night”.
      But I think you’re beyond the stars…
      in Sylvia Plath’s “Bell Jar.”

      Like

      Comment by Phylis Feiner Johnson — June 28, 2011 @ 12:32 PM

  37. Hi Rick,

    I have seen a lot of poetry about epilepsy in the last several years. People will put in a word or statement that means one thing to one person and another meaning to a different poet. I am surprised at how wrong I am about what seems the obvious.

    That is why I asked. Sorry, for not putting in a poem. I wanted to explain my experiences about other poets and their hidden meanings.

    Like

    Comment by ruth brown — June 28, 2011 @ 7:41 AM

  38. Sylvia Plath’s “Bell Jar,”
    You through me ajar
    Is Sylvia in the present time
    Or was she in the past tense time

    Like

    Comment by ruth brown — June 28, 2011 @ 8:15 PM

  39. Hello all. I have read most all of this poetry. It is very good, do not have epilepsy. Although my father does. You all may know him from his posts and comments on this site. His name is “Rick.” I have read his poetry as well. My name is Teresa. I don’t know if I’m good at poetry or not. I’ve tried a few times though.
    I wrote PARANOIA awhile back, it was when my dad was having more seizures. It was kind of an emotional break.

    PARANOIA
    When I hear the starting yell, my eyes bolt open, and I can tell.
    The neurons are misfiring and he is seizing.
    I never think of these things as unusual or weird, it is just a natural phenomenon that occurs.

    The pain must be terribly immense, into tight convulsions, he is really tense.
    When it is over, he can breathe.
    Now in a haze and confused daze.
    Seeing things that he does not think.
    Trips and falls into the sink.

    He laughs it off and says it’s funny.
    But nothing is funny about the facts
    the facts that are truly stunning
    but nothing affects the way he acts.

    – Teresa L. Coons

    Like

    Comment by Teresa Coons — July 1, 2011 @ 12:56 AM

    • Welcome Teresa. And thank you for the beautiful poem.

      Yes, your dad Rick is a treasured member of our family. And we’d love for you to chime in, whenever you’d like…whenever you feel comfortable.

      Like

      Comment by Phylis Feiner Johnson — July 1, 2011 @ 12:50 PM

      • Hi
        Thanks ! She kind of snuck one in on me lol
        I was not aware or maybe did not remember that she had written that. I have spoken many times about the fear factor so many with sz. disorders seem to have and my apparent lack of it.
        But if I ever had or have one, it is that I am always left feeling regret because I have scared the “witness” . It is hard enough with it an adult ,but when dealing with a child and especially someone you are supposed to be protecting from all the evil happenings of the world it has a different effect on my thinking.
        My early teachings on the brain and how nerves work have been a key factor though in her understanding what is happening and probably keeping her fear to a minimum. Thanks to all Rick

        Like

        Comment by wichitarick — July 3, 2011 @ 8:56 PM

  40. Welcome Teresa,

    What a beautiful and a poem of deep feeling. We are glad that Rick has you to support him.

    I would like to hear more of your poems.

    Like

    Comment by ruth brown — July 2, 2011 @ 2:53 PM

  41. I alway’s considered my aura a blessing. As I got older though it began to be very short and I couldn’t prepare.
    This thought/poem has been rambling around in my head and I thought I’d share.

    My friend the Aura.

    What should I do,
    Where should I hide,
    My Aura tells me this
    from way deep inside.

    Where should I go?
    How will I fare?
    A seizure is coming,
    I must prepare.

    The storm is just starting,
    Oh, how I dread,
    The unknown results,
    Of my electrical head

    My Aura warns
    “get off your bike”
    I don’t have much time,
    Soon, it will strike.

    My friend, on occasion,
    Has not warned me in time,
    I’d find my self somewhere
    Badly hurt , why am I?

    Someone please tell me,
    Why do I bleed?
    Tell me what happened
    It’s info I need.

    It turns out my ‘friend’
    Is not one at all!
    It’s just an acquaintance,
    Who I hope need not call.

    Like

    Comment by Charlie — July 3, 2011 @ 5:24 PM

    • Whew. Wow. POWERFUL!

      Like

      Comment by Phylis Feiner Johnson — July 3, 2011 @ 5:29 PM

    • Wow, Charlie, could I ever identify with your poem. However, I have never considered my auras as friends. It’s just another signal that a seizure is about to occur, and I’m not the one who notices. It’s my husband, or someone around me who then has to be on high alert.
      I agree with your last stanza, “my friend is not one at all.”

      Like

      Comment by Maggie — July 3, 2011 @ 7:28 PM

    • Hi- Nice to meet you . Remarkable how similar the feelings are and often the same words used to describe such a complex and huge web of feelings.
      It is interesting for me to read others understanding of this.
      Although I have only had t.c. szs for about 18 yrs. I have come to understand that I have had an “aura” my entire life or at least since early childhood.
      Those extended head rushes ,the vertigo,the “wavy” feelings at certain times of day and night have all been normal to me .
      Only after reading and talking with so many others have I come to understand that maybe all that was not “normal” lol but my brain giving me a heads up for something.
      Unfortunately I had these aura’s in the first yrs. of me having long hard t.c. szs. and just did not understand what they were telling me or us.
      Some of this my former spouse came to understand but never was able to do much to possibly protect me or her before some bad episodes happened.
      I have also come to this as my “FRIEND” or at least so deeply ingrained that it is part of my personality and is part of what I evolved into.
      A person that is new to this is the one that can gain so much from a poem like that,often bringing years of feelings to a final understanding of themselves. Thanks Rick

      Like

      Comment by wichitarick — July 3, 2011 @ 9:19 PM

  42. That familiar taste fills my mouth,
    metallic, disgusting and foul…
    it warns me without a doubt,
    the time has come to twist and shout!

    Like

    Comment by Phylis Feiner Johnson — July 3, 2011 @ 5:33 PM

  43. This may not be the place to leave this, but I had blood levels done yesterday morning. Therapeutic range of Dilantin is between 10-20, and mine was 12.7 this time. When it starts getting toward the low end we get worried. However, my Depakote (50-100) was 51.3, which is high for me. So my husband is on edge. I feel fine, except tired, and that’s from the bronchitis and asthma. I would certainly rather see my Dilantin level around 16 or so, in the middle of the range.

    Like

    Comment by Maggie — July 3, 2011 @ 7:32 PM

  44. Is it the Dilantin that took you in
    to make you so sick as you have been?
    Or was it another passing demon
    that left you in this conundrum?

    Like

    Comment by Phylis Feiner Johnson — July 3, 2011 @ 9:21 PM

  45. I have one more poem I wrote in April 2010, 6 months after my Epilepsy surgery, called 40. I posted it on Epilepsytalk then,(a repeat for some of y’all) thinking I’ve had Epilepsy for 40 years, after finding some old documents, my mother had saved, I should have called it 50. My parents told me my seizures started at 13, the doctor’s report I found showed seizures at 3 yoa. Anyway, here it is again.
    “40”
    40 days doesn’t seem long,
    40 years really does.
    When your life is a struggle,
    One day, is enough.

    40 years Moses wandered,
    The hot desert sand,
    Hoping to find,
    The Lords ‘Promised Land’

    40 days seems quite different,
    Or so it would seem.
    Unless you were Noah,
    who wandered the Sea’s.

    Such is the way,
    We travel through life.
    One day at a time,
    filled with ease, or with strife.

    We welcome the good days,
    That we’re happy to see.
    We claw through the bad ones,
    Much worse, they could be.

    40 days, or 40 years,
    All start with an hour.
    Apart, we might seem weak,
    But, together, have power.

    So when we’re feeling alone,
    And it’s so hard to see,
    There are plenty of others,
    Just like You, and like Me.

    Like

    Comment by Charlie — July 4, 2011 @ 2:35 AM

    • 40 seconds is the blink of an eye, or perhaps an aura…
      40 minutes is a savage seizure, when the enemy takes over,
      40 days, in many ways, can feel like you’re on hold…
      40 years without hope, is when your soul grows cold.

      Like

      Comment by Phylis Feiner Johnson — July 4, 2011 @ 7:20 PM

  46. Charlie, I can really identify with your poem.
    It really hits home.
    With me it has been 62 years
    Since my first seizure

    My aura’s are starting up again
    I hope they will go away
    Not for another day,
    But forever

    My hope is in the Bible,
    There are scriptures that prove
    that illness will be no more
    neither will death nor mourning

    I can prove
    that this will happen
    Write me if you want me to prove it.

    Like

    Comment by ruth brown — July 4, 2011 @ 3:24 AM

  47. I finally have another poem. I call it “Living Through a Seizure.”

    Hard to explain how aura grabs at me.
    As far as I know everything is fine.
    But seizure’s coming. Blind, I cannot see

    its wrath nor feel its weight. Audacity
    describes its hoisted shoulders. I must dine
    on aura, stranger coming straight for me.

    I stare, but do not notice the debris
    around my consciousness while ropes entwine.
    A seizure’s coming. Blind, I cannot see

    the spiral into nothingness. Trustee
    of my awareness, it won’t realign
    my neurons. How does aura grab at me?

    I love the easygoing, swinging, free
    times, summer sun-swept weeks and months that shine.
    But seizure’s coming. Blind, I cannot see.

    Perhaps that’s good. For could I disagree
    with power so strong it throws me down a mine?
    Hard to explain how aura grabs at me.
    I’m blind when seizure comes, and cannot see.

    Copyright 2011 Maggie Mendus

    Like

    Comment by Maggie — July 16, 2011 @ 5:42 PM

  48. Thank you, Phylis. It feels good to be writing again. When I was sick it was as if my creative life was on hold, and I didn’t like that at all. I need to write. In fact, I have a doctor who once said to me, when I was in a seizure-free period, “Have you ever considered that you’re better because you write?” I give that a lot of thought now. That was an impetus for me to publish my book.

    Like

    Comment by Maggie — July 16, 2011 @ 7:29 PM

    • I know that the reason I get up in the morning is to write.

      When I almost died, it took me 3 months to find the keyboard…then 20 minutes to write a 3 sentence email. THAT was frustrating. It was if I had been drained of my life’s blood. (Well, life support wasn’t very inspiring!)

      I NEED to write to live…so I understand you perfectly.

      Like

      Comment by Phylis Feiner Johnson — July 16, 2011 @ 9:28 PM

  49. Hi
    Good reading sorry for the slow response.Not sure if I posted this. a little more positive than how deep some of that other stuff is,or at least it was for me,I found myself forcing the positive feelings and the commitment to them! Thank you so much. Rick

    THE GOLDEN GATE
    Made a commitment to the positive, remember?
    A.m. Confusion? BUT no contusion.
    Ringing loud,intense,IMMENSE, need it to sing ,not ring maybe rhyme just this time.
    No gain with pain,I can keep it away ,it becomes fun,in an odd state of mind,if it is hard to find!
    So many times before ,so much time on the floor,always kept a smile,never ever been its whore

    Feelings are fast ,fleeting,like a race with no definite pace,so many, to try an explain seems almost a waste.
    Am so thankful,grateful ? Would be so much easier with Hate! But its to late.Just could not wait.
    Will walk today ,even tomorrow ,but the next who’s to say ? will it stay?will it go away?
    At any rate we only roll the dice with Fate!
    Who is to say that they hold the keys to the golden Gate!
    Feeling IT ! Rick

    Like

    Comment by wichitarick — July 18, 2011 @ 6:00 AM

  50. I think, therefore I am…
    epilepsy be damned!
    My fate is in my hands…
    I will live my life the best I can.

    Like

    Comment by Phylis Feiner Johnson — July 18, 2011 @ 1:47 PM

  51. My brain is a closet,
    that stores all my med’s.
    Some for my back,
    some for my head.

    Doctors, doctors
    put down your pen’s,
    My closet is full
    but yet you dispense.

    The side effect’s are minor,
    Or, so you say,
    to read all the warnings,
    will take me all day.

    A blessing they are,
    a curse they could be.
    find me the right one,
    To give my brain peace.

    Maybe my closet
    is just way to big,
    to hold all the med’s,
    they’ve tried, on this Guinea Pig.

    If this’s my only worry,
    Consider myself blessed,
    There’s so many people,
    with No med’s, facing death.

    Think of those many,
    who suffer and groan,
    Who live in such places,
    Where med’s are not known.

    With these word’s I must leave,
    and go take my pill’s,
    My doctor is waiting,
    A new prescription to fill.

    Like

    Comment by Charlie — July 18, 2011 @ 2:35 PM

  52. I’m writing again after a very long hiatus.

    Complex-Partial Seizure

    Last month a complex-partial grabbed at me
    with strange new fingers slicing consciousness.
    Words tangled in a knot. I was not free.

    I could not speak. Words went from large to wee.
    Sounds blurred and changed from more to less.
    Last month a complex-partial grabbed at me,

    stole all my words until I had no key
    with which I might unlock the silent mess.
    Words tangled in a knot. I was not free

    to speak, could not agree or disagree.
    My brain cells churned. Could this have come from stress?
    Last month, a complex-partial grabbed at me.

    So turbulent upon the seizure sea,
    my mind would not allow a tiny guess.
    Words tangled in a knot. I was not free

    to utter sounds. The doctor’s “One, two three,”
    then, “What comes next?” seemed like a board of chess.
    Last month a complex-partial grabbed at me.
    Words tangled in a knot. I was not free.

    Like

    Comment by Maggie Mendus — February 24, 2015 @ 12:15 PM


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

    Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 2,292 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: