GBS Poem-Facebook Survivors (group effort)

    • Anonymous
      July 15, 2011 at 4:06 pm

      Okay GBS survivors….I was thinking about writing a poem about my GBS experience, but I figured why should I have all the fun?……..So I have a proposal for all you creative GBS survivors…….I’ll start a couple of lines for a GBS poem and you add something……doesn’t have to rhyme, but should be something from your personal experience. So here goes:

      Cruising down the highway of life,
      With not much care or strife,
      When I must confess,
      I was knocked down hard by GBS.

      I used to run, to dance, to teach,
      So stubborn, so darned carefree,
      But God had some other plans for me,
      He had lessons within my reach!

      i fall i cry doubled up in pain .. and still inside the hurt remains ….some friends have left me to my fate… yet again i carnt sleep even thou its late

      but hope is always at my door. One step, one step, one step more.

      most days i live my life to the full .. but some i think are just bull

      Doctors tell you to get a shot to protect you from the flu……they keep it a secret that the very same shot can paralyze you too…..more research is needed, no matter what the cause…..this disease must be stopped to prevent even more devastating loss

      How sweet,
      Paralyzed below my head,
      My body and spirit are…
      Crumbled, tumbled, insanely humbled,
      As I lay in this hospital bed,
      A captive to this perfect storm.

      Tunnel’s end light, has yet to be seen, Scarred memories to remind of where I’ve been, To be close to normal is my great quest, Til I get there again, I’ll give it no rest.

      ‎”I may have been down, but I’m not out, cos I have faith you see. This woman may have GBS but it sure don’t have me!” (OK I know its not grammatically correct, LOL, but I had to make it flow, so stay with me!)

      I asked my leg to move,
      It didn’t hear me,
      I wanted to hold a spoon,
      But didn’t have the strength,
      What will the next day bring?
      Pain, sorrow…peace, relief?
      Life seems so unfair………
      Will I ever be able to leap over tall buildings again?
      Who stole my cape?

      Day after day….Month after Month….The pain medication is no longer enough… I may walk with a limp…. and may not have perfect feet… but always find pleasure in taking a seat

      Just when we thought our lives were over…..We are given another chance…It makes us stronger….We no longer will take things for granted…Everyday we worry about being struck again with GBS the villian that stole our capes,until then we condition our bodies to the best they can be…GBS surviours we are here as we beat this thing no matter how……….

      As those around me are in disbelief — I’m yearning for more and more relief. It’s been 39 months since I was struck– This GBS really does suck. I don’t notice daily any changes at all–I just notice monthly it’s harder to fall. Why oh wh…y does this happen to us–are answer seems to be “just because”. The Doctors don’t seem to know any more–they just like to see you out the door. Don’t get me started with poetry today–I just might stay on here all through the day

      here i am at 2 am .. sat alone in pain again .. im tyred but just carnt sleep .. i pray the lord my soel to keep .. its now 5 oclock the sun will rise .. im off to bed to close my eyes .. so god bless to you and all your kin .. cidp wont beat me i will win

      Man….was having a bad hair day,
      GBS downer….things just not going my way,
      Mood swings I couldn’t resist,
      Cried in front of the therapist,
      What did the doctor do?
      Doubled my Prozac, so I wouldn’t feel blue,

      Writing poems has a long time been–I’m going to go for it again. I went on vacation far from home–came home sick with Guillain/Barre’ syndrome. I went to the hospital sick and chilled–came back home not very thrilled. I lost control of …my hands at first–couldn’t grab the glass to quench my thirst. I cried lets go to the hospital–that’s when I had my first fall. I got to ride in an ambulance fast–didn’t know how long I’d last. By morning I was paralyzed–That’s when the Dr. realized. It’s time to go for a spinal tap–to see if I really have this crap. The GBS result was sure–the bad thing was there is no cure. I cheated on the breathing test–no tube for me was the best. From then till now has been so long–I want to someday again be strong.

    • Anonymous
      July 15, 2011 at 10:02 pm

      Well Tom, I really enjoyed your poetry.
      I’m not a poet, but would like to add to the general theme.


      It’s been nearly 4 years with GBS
      And my house has been looking like quite a mess
      I vacuumed once…no, twice last year
      The dust on the high shelves had nothing to fear

      When Christmas came, the tree did not
      For the 2nd year, though it wasn’t forgot
      I was too exhausted to clamber about
      To put up decorations, I was too worn out

      The clutter increased, tho I had room to spare
      But it took all my strength just to pile it there
      Bed-rest before work, and bed-rest after
      I’d put on a smile, but there wasn’t much laughter

      And the errands inside and the chores downtown
      Had got to the point it was getting me down
      One foot forward, and one foot more
      An hour or so later, I’d done that chore

      And just when I though I was getting better
      I could read and talk again, write a letter
      One day, it all got much, much worse
      GBS became CIDP’s curse

      And it was now a life, not just an illness
      I’d pray, and cry in the dark night’s stillness
      Still…faith and hope came to cheer me on
      And I didn’t despair for what had gone

      And when I thought I’d accepted the fight
      And learned many lessons of this dark night
      I found that the enemy could still assail
      And bring complications that made me quail

      And the struggle to do, and the fear to die
      Were mingled with questions of how and why
      And I realized life isn’t what it seems
      As I thought of my life with it’s half-lived dreams

      I mourned the loss until one day…when
      I said, I’d like to do this and that again
      And just at that moment, I heard a small voice
      “Well, why don’t you?” …”You still have a choice”.

      And it seemed to me that permission was granted
      Yet from me the will and effort were wanted
      So I woke every morning with determination
      To put order in my life, as this new creation

      No more times of sheer idleness
      No more excuses for doing less
      Than to finish the work I’m here to do
      And I set myself to see this through

      Well, my garden is weeded, my grass is mowed
      My basement recyclables at the curb are stowed
      The closets are cleaned, my wardrobe in order
      The pantry is sorted, and so is the larder

      There’s food in the fridge, and water is stored
      I spend all my time in touch with the Lord
      I’ve been given some free time to read some good books
      And sometimes a cuppa or two with blank looks

      So these are my days, on earth as they are
      Whatever befall me, from near or from far
      And when my time’s done, and I enter “Forever”
      There’s one lesson I learned…that “It’s Now or Never”.

    • Anonymous
      July 16, 2011 at 3:54 am

      OM G!!!!!……………….Beautiful……………..both of you. ๐Ÿ™‚
      I have tears in my eyes as I was reading yours, Tom.
      What talent you both have. Have a blessed day and keep getting stronger!


    • July 16, 2011 at 3:25 pm

      nerves fail causing pain
      gbs never the same
      weak body strong brain

      a gbs haiku

      nice start Tom, I should put some of your stuff to music, I would tend to favour a sludgy metal sound for this one

    • Anonymous
      July 16, 2011 at 4:35 pm

      Hey NGG,

      I wrote only 4 of the original posts……others did the rest……I encourage anyone who reads these poems to add their own story in verse, like you and D.U. did.

      I kind of picture you starting out slow in your music to show how GBS knocked you down, but gradually picking up the tempo as you recover. Look out Jimi Hendrix and Eddie Van Halen… comes NGG. ๐Ÿ˜€ Keep on rockin’……………….

    • Anonymous
      August 4, 2011 at 7:36 pm

      Chugging & chugging along, coff…coff
      The ole motor gives a murmur and a rumble now and then
      Just a little tremor to let me know it’s there
      A little warning to ease up a bit, just to be fair

      And if that’s not enough, then pain is increased
      Tho not enough yet to render one deceased
      Just enough to impede, and to impart
      A little wisdom to the brain that runs the heart

      So much to do, and yet so little time
      But when all is said and done, what is it worth?
      Those hours of pain and striving to achieve
      A greater or lesser gain undertook.

      When rest is what’s required, be it so
      And let the chores and other activities go
      Get into the huddle that enables one to find
      The needed bodily comfort and peace of mind.

      A day or two in bed, on patio…is fine
      Just what is right for all these woes of mine
      No need to labor to go on a vacation
      When one’s own bed provides a great stay-cation.

      And let there be popcorn, lemonade, a good book
      Some music and soft light in my little nook
      The phone is off the ringer; doorbell ignored
      While I gain in restoration from the Lord.

      Source: Psalm 23

    • Anonymous
      August 6, 2011 at 1:48 pm

      WOW… this thread has me speechless and filled with so much emotion.

      Thank you all!!!

    • Anonymous
      August 6, 2011 at 4:53 pm

      C’mon, Chrissy, where’s your poem? ๐Ÿ™‚

    • Anonymous
      August 6, 2011 at 4:57 pm

      LOL D.U.!!!

      With the way I walk the only thing I’ve said over the years is

      “I weeble and I wobble but I don’t fall down.”

      However, this past year I have started falling – but NOT when I have been drinking (mainly beer). So I will have to come up with a new saying. I’ll be sure and post it when it comes to mind ๐Ÿ˜€

    • Anonymous
      August 6, 2011 at 5:07 pm

      NGG – I’m hearing a Collective Soul sort of tune??!?!

    • August 7, 2011 at 1:07 am

      [QUOTE=Chrissy]NGG – I’m hearing a Collective Soul sort of tune??!?![/QUOTE]
      hey Chrissy baby, I do like them, but I’m gonna go a little more thrashy here, like the Stooges or Motorhead

    • Anonymous
      March 19, 2012 at 4:31 am

      as I struggle for words, I’m reading about my life. thank you for helping me describe what I’ve lived. I read these poems and want to cry and say this is such reality.
      I apologize for not responding sometimes. I feel to overwhelmed at times. But I’m here reading.trying to learn.