Living in bed is eerily surreal You exist in a world that doesn't make sense Where escape remains forever elusive.
You memorize every crack on your ceiling Every cobweb taunts you, yet stubbornly remains You want to reach up and swoop them away Yet pathetically, lack the energy to do so.
The marks on the walls become a tapestry Every inch indelibly committed to memory The dust on the furniture, a permanent fixture And close cousin to the bunnies under the bed.
Your bedside table is littered with pill bottles Half drunk glasses of water, maybe a dish or two Books lay open but never finished Words blur together before anything makes sense.
Over 700 channels and nothing to watch Nothing really matters, it is all so trivial Attention is fleeting and hard to sustain Back to the maze of ceiling cracks.
Though at first it feels like a sanctuary Sinking down into the softness and calm Aching muscles sighing with relief Before long it becomes like quicksand Sucking you down into its angry abyss.
I am falling, I am being swallowed whole Into this blackness, this eternal trap This hollow place of sickness and endless fatigue
The same sheets that soothe and envelop me Placate me with comfort and warmth Soon become soaked with salty sweat, Twisted by the endless, restless writhing Of a body seeking ever elusive peace Evidence of invisible monsters wrestled Yet again, to no avail.
Night becomes day, Day becomes night Dreams vividly haunt my sleep Lingering relentlessly into my wakefulness Creating a semi conscious cloud of confusion Where I eventually succumb to the exhaustion
My brain, filled with microscopic evil corkscrews Can no longer negotiate time and space My body, lifeless and drab Is left behind, agonizing wreckage on the bed.
This bed. I live in this bed. My prison, my dungeon, my solitary confinement. My solitude, my comfort, my saving grace.
My bed.
Tracy A. Will April 6, 2008
[ 21. April 2008, 02:14 PM: Message edited by: Tracy9 ]
Posted by UnexpectedIlls (Member # 15144) on :
That is my life....*tear*
Very well written!
Posted by charlie (Member # 25) on :
Tracy....this is very, very good, but I think you could use a margarita.
This is also why the chat room is a lifesaver when we're down...
(except when the chat room's down)
Charlie
Posted by wiserforit (Member # 9732) on :
Tracy,
Never, never stop writing. You are so talented.
You weave words that express communal anguish and joy.
You are important.
Things will improve...crawlingly slow...but incrementally large ultimately.
My bed was not evil today. My bed may be evil tomorrow.
hugs and admiration of your writerly skills,
wiserforit
Posted by laurie sm (Member # 14584) on :
Tracy- Are you sure that you are not in my head???
What a wonderful writer you are!
You should make a collection of all your beautiful poems and sell them!!!
I hope your bed becomes a "safe haven" real soon
Laurie
Posted by Dancer (Member # 11039) on :
OMG.
I just hauled myself off that bed... the only thing I seem to have any interest in today (or yesterday or the day before... I've lost count how many days) is checking email and things related to Lyme disease. What a life. I'm not always like this. Usually I can summon up some enthusiasm for something on the worst days even. Maybe I'm just worn out. Maybe its brain herx. I'm not even that sick or in pain now. Just completely apathetic and wrung out. I know I've come up from this place before and I probably will again, but I have to say, this really sucks. This is not where I expected my life to go.
Thanks for sharing this poem that is so very right on. I am glad that even though I am alone right now, I'm not alone in all this.
Posted by daise (Member # 13622) on :
What a gorgeous thread. It's a thing of beauty.
And yes, thank goodness for the Internet, where we can share and others with Lyme can hear words and understand.
Tracy, your writing is beautiful and honest.
There must be better days ahead for you when you can slowly say GOOD BYE to the abyss.
daise Posted by lymeladyinNY (Member # 10235) on :
Very well written, Tracy, and right on the money.
This week I SHOULD have stayed in bed because I felt so, so bad - but the weather was so nice and there was so much to do - so I cleaned house, cleaned the yard, and basically drove myself into the ground.
To avoid the abyss of bed-boundness!!!
Now, I am forced to return to bed because I did way too much, more than I can truly handle. But, how wonderful it felt to be out in the sunshine and feeling the spring fever!
Stolen moments away from the dungeon. Painful and sweet.
- Lymelady
Posted by Lymeblue (Member # 6897) on :
I think I have to visit you SOON!!
I love what you wrote, my dear friend, you will get better....
Posted by Robin123 (Member # 9197) on :
Wow, Tracy. I hope you appreciate what a strong and talented person you are. I want to see you make it out of bed some day!
Your Bed poem reminded me of one I wrote in the 90s. It got published in an anthology on fibromyalgia(We Laughed, We Cried). So I will post it here. I have a feeling a lot of us have spent those eons in bed.
ROOM SEASONS
Alone in my room, lying down on my bed for all of these years that I've been so ground-ed with fibromyalgia pain not understood - it crept upon me - I didn't know it would - and took me from traveling and freedom to roam 'til gradually a seasonal room became home with cloths and with pictures and keepsakes and stuff - I've grown years of scenery - it's creative enough!
A flower-wrap paper collage was the start - my Springtime bouquets flowered forth a new art. Since then I've had springtimes of all different hues - from first blossom pinks growing 'midst winter blues to yellows and purples in green blanket parks with whimsical butterflies, pinwheels and larks.
Then Summers with primary colors so bright with beach scenes so warm and with boats in clear sight and deep water scenes full of coral and fish, with sea shells and sand dunes to make a warm wish.
Then tawny and golden and beige-colored Falls, with bright Autumn foliage pics dotting the walls, with warm setting suns sending forth streamer rays and one Roman villa with harvest displays.
To winters in white, with their sparkles and dancers and Winters all dark - black, blue, subtle enhancers, with veils over everything 'til the time turns to thawing and melting, for new life concerns.
Which is kinda my drama and hope that we may find out how to send fibromyalgia away, granting us all a new Season to live, Yet we will remember the ways we did give ourselves and each other some different designs - a new art to life, and to life some new shrines.
Robin Krop, 1995.
I would pick out poster pictures I liked at a local poster shop and decorate my room using them as a starting theme. Plus adding colored cloths, knickknacks, and some of my own artwork. It was fun and gave me something to do and something beautiful to look at. I took pics of all my rooms. I still do my room seasonally, shifting through the seasons. Makes me feel like I can still "travel" through the seasons.
Posted by lymebytes (Member # 11830) on :
Tracy, I can't help but post my poem that was published in Public Health Alert for you.
You need HOPE and for me that is the Word Network - especially Joyce Meyer, Enjoying Everyday Life. It is one of your 700 channels and it is something power packed to watch.
You can lay there I suppose and look at the cracks in the ceiling or you can start to empower yourself. As my favorite minister Joyce Meyer says, "You can be pitiful or you can be powerful, but you cannot be both" So FIGHT...and never give up and settle for this ever! For a Hope filled message click here - will open to Windows Media. mms://media3.joycemeyer.org/jmm_broadcast/wmp/video/february/021708_video_hi_en.wmv
I will never forget what a recovered LD patient said, "the fight is 90% mental" - it is - you can read my story below and see how bad I have had this, but I refuse to ever give in to it, ever. I have watched my husband suffer for years with this, my son nearly die from LD and then I was hit with a grenade of LD and nearly died - then 3 other family members hit - 6 so far total. I know this disease, I may have it for now, but it does NOT have me. Don't let it have you.
(My poem published in PHA a few months ago) I am solider
I am soldier tough and strong everyday I fight the war within me that goes on and on
I have never held a rifle, a grenade or a gun Instead my mind is my weapon if this war is to be won
I soldier through the night and the day time too Fighting and unseen enemy that attacks out of the blue
No place to run, no place to hide The enemy will find me it lives inside
Weeks, months and sometimes years go by But I am a soldier and I refuse to die
I am not a Marine, or even a Navy Seal But I have spirit and fight and I will heal
So when the enemy throws a grenade of doubt My answer back I do shout!
I will win this war, on that you can bet Lyme Disease won't beat me, I'll be an LD vet! (veteran)
So if you have your days, when you think you will lose Remember you are a soldier and you will win if you choose!
Posted by Tracy9 (Member # 7521) on :
Lymebytes said:
"You can lay there I suppose and look at the cracks in the ceiling or you can start to empower yourself. As my favorite minister Joyce Meyer says, "You can be pitiful or you can be powerful, but you cannot be both" So FIGHT...and never give up and settle for this ever!
"I will never forget what a recovered LD patient said, "the fight is 90% mental" - it is - you can read my story below and see how bad I have had this, but I refuse to ever give in to it, ever. I have watched my husband suffer for years with this, my son nearly die from LD and then I was hit with a grenade of LD and nearly died - then 3 other family members hit - 6 so far total. I know this disease, I may have it for now, but it does NOT have me. Don't let it have you."
Just to clarify, I have a strong positive attitude, really. I have not one ounce of depression in my body (thanks to some good drugs, lol.)
I am sorry my poem seems to have given the impression I feel defeated, nothing could be further from the truth.
I find it a wonderful release to put my feelings on paper and share them; I guess more in a way to validate my experiences than anything else. I feel so much better after recognizing and acknowleging my feelings, expressing them, and knowing that I earmarked that observation somewhere, I guess.
I also find it incredibly validating to hear others say they recognize and share my thoughts and feelings. For me, it represents another step in the path toward healing; knowing I am not on this journey alone and feeling like someone really understands me, and maybe I even understand them a little.
I was trying to convey my feelings that my bed is kind of a paradox of sorts; it's my most comfy, favorite place; yet one I am sorta stuck in a little too long.
That's all!
Thank you so much to others who posted their poems too; I love reading them. I think it is very important and yes, cathartic to be able to express our full range of feelings.
Rest assured, I am happy, joyful, hopeful, and every day putting one foot in front of the other on the road to recovery!
Posted by Tracy9 (Member # 7521) on :
Lymebytes said:
"I will never forget what a recovered LD patient said, "the fight is 90% mental" - it is"
I do have to disagree with you there. Having a positive attitude, filling your life with hopeful thoughts, affirmations, and the will to get better is INCREDIBLY important and IMMENSELY helpful.
But 90% of the fight? I don't think so. I spent every night in Lyme Chat with lots of lymies who are the most positive, hopeful, funny, endearing, supportive people I have ever met. I can assure you beyond the shadow of a doubt, if 90% of the fight was mental, NONE of us would be there everynight.
This is a real illness, and thinking happy thoughts won't make those spirochetes go away. It sure can make the journey a heck of a lot more tolerable, but if we could cure ourselves by sheer will, dammit we would have done so already.
Posted by ElaineC (Member # 9857) on :
Tracy,
Thsi is really good, you have a wonderful talent for writing and Lyme cannot take that away from you!
Weird timing also, as yesterday I was lying imprisoned in my room (yet again) feeling the exact same thoughts and feelings which you captured so very well in your poem!
Let's hope some day soon we can all escape from the confinement of our bedrooms! Posted by METALLlC BLUE (Member # 6628) on :
That is excellent. It portrays exactly my own experience in the past. I wrote a funny poem recently, but I'll have to find it.
Posted by METALLlC BLUE (Member # 6628) on :
Here it is:
"Lymie Blues"
I'm feeling so dizzy My headache's so strong My body is aching Please tell me what's wrong?
Got pains in my muscles And I'm numb all around So I went to my doctor And here's what he found
He says it could be ALS, Fibro, CFS, Cancer, HIV, Lupus Or maybe........... MS Do you know what he settles on? I bet you can guess.
He says I need counseling That I'm going berserk But I don't believe that I just think he's a jerk!
I saw lots of doctors And got sicker with time Until I found out that I really have Lyme!
Too bad the tests, Are inaccurate at best Without solid proof I'm told not to rest
One band, two bands, three bands, four Without five bands, Doctors point for the door
So it's off to see an *LLMD He's smart, He's bright, He diagnosed me
A clinical diagnosis It's just not enough Without evidence My doc must be nuts
With a great reputation Good results under his belt Family and friends still don't believe He'll get me well
Patients they love him He cares what they say He listens, he e-mails He even waves fees
So twenty-eight days pass Of life on IV And if I'm not better Then *I* must be crazy!
If you're not well Friends say more tests should be run What if Lyme Disease Isn't what's wrong?
But I am still sick now And it's hard to get well If it's Lyme, Those spirochetes are clever Or couldn't you tell?
So I chat with my "lymies" And stay on my drugs I just keep on fighting And stay away from those bugs!
P.S. I'm talking about Dr. D when I talk about getting diagnosed. Posted by METALLlC BLUE (Member # 6628) on :
I really miss CT. I lived in Enfield. I miss it a lot.
Posted by Dancer (Member # 11039) on :
Hi Tracy,
I get it, I think - it is not, to me, a poem of depression, maybe more a poem of waiting. I love my cozy bed too... it's my haven, it soothes me. Sometimes it becomes too close to being my whole world. I look out at the world from it. I look out at my room from it - the undone. I listen to the birds chirping from it, or people's voices outside.
I cannot thank you enough for writing that and sharing it!
Dancer
Posted by Robin123 (Member # 9197) on :
Good poems!! Anyone else have any poetry about lymelife/bedlife?
Posted by bettyg (Member # 6147) on :
WOW!! LOOK AT ALL THE TALENTED WRITERS & POETS!! way to go everyone! loved them all.
for those of you who did NOT sign your poems, please copyright them with your names so you are given credit for them vs. ANONYMOUS!
well, you're going to be published in another area, i'm adding this link to my newbie package in the area of support:
lymedad's letter to family/friends; dar's toy story; spoon theory, and now this! you'll be in good company there!
again, thanks to ALL for sharing your talents that touched each of our hearts and our tears! Posted by Cold Feet (Member # 9882) on :
Betty gives some good advice! Protect your heat-felt inspirations!
I can consolidate and work towards publication. Any helpers out there!?
Maybe that's too hard. How about a simple, specific site that is nothing except this eloquent, truthful poetry? Or, the web admin can set up a forum on this board just for this -- it's easy to do -- and would be a nice touch and complement to the board.
These poems also help non-patients too. Many people do not understand this terrible disease!
Posted by Tracy9 (Member # 7521) on :
Cold Feet, I love it! I do envision a book along the lines of PJ Langhoffs, full of patient stories, only ours would be full of creative works instead.
Posted by bettyg (Member # 6147) on :
tracy, could we use YOUR thread here to start the LYME POETRY COLLECTION?
IF YES, please just edit your title to ADD THE LYME POEM TO OUR COLLECTION or something to that affect!
thanks; that would be special since PJ did include 10 plus pages of poems/poetry in her ALL IN YOUR HEAD SERIES! Posted by UnexpectedIlls (Member # 15144) on :
I hope it is ok to add my poem if not just erase it!
This is a short poem, and I am sorry if it is a little more negative than the others...but in short this is how it is for me.
~Unexpected Illness
Life is so strange through sick eyes. Everything is cloudy and the sun doesnt shine as bright
Life is now filled with pajamas and tears, no sunlight, no stage only worries and fears
Illness creeps up on you like a stalker in the night, when all I wanted was a family not a battle for my life
I want to be healthy and be part of life once again, but all that I feel is the darkness moving in
Why did this happent to me I scream with rage. The answer I don't know I only hope it goes away
I have never been this scared in my whole life as I cling to my past, all the doctors that lied and told me this pain wouldnt last.
It's all in your head there is nothing wrong with you, We cant find anything, just go home, Shoo!
This long list of symptoms that keep me so down keep me crying at night, clinging to life, praying to God please make me strong, please dont take me away from the place and the people I know I belong.
My life is a bed, pajamas, no hope, no light, All I can do is wish that oneday I will win this unexpected fight. -------------- Shandy Monte In an act of desperation
[ 21. April 2008, 01:54 PM: Message edited by: UnexpectedIlls ]
Posted by Robin123 (Member # 9197) on :
Shandy, it's ok to tell your truth. When you do so, you speak for others too. Lyme is a crime against our lives, and we are all fighting back now.
Posted by ElaineC (Member # 9857) on :
Shandy,
You have voiced what most of us feel! We all want our lives back and some justice in the world for sufferers like us.
Writing is a good way to release the fears and frustrations - this is a gift you certainly have! Posted by Tracy9 (Member # 7521) on :
Shandy, Your poem is wonderful!!! Sad but it embodies the truth we all feel, if not all the time, at one time or another!
Someone suggested to me today we ought to fax our poems to the Legislators and people involved with the bills; I say GREAT IDEA!!!
Anyone and everyone have my permission to use either of my poems and fax away!! My first poem is "My body has betrayed me" in medical, a few pages back.
Posted by Robin123 (Member # 9197) on :
Hi Tracy - thx for starting off the poetry post! Can you add your first poem here? And any other Lyme-related ones. Thx!
Posted by AlisonP (Member # 7771) on :
You don't believe in Lyme disease, but it believes in me. You're skeptical, you say, but I don't have that luxury. Twelve doctors, Twelve diagnoses, and years of misery Do you know what pain is? Look in my eyes, you'll see.
They call it Lyme disease, but oh, it's so much more Than a fuzzy little happy tick, showing up at my front door. I was never even bit, though ``Impossible!'' you may roar, Nor my three siblings, all sick too, it chills me to my core.
I've got co-infections, no immune protection, no CDC affection, Just plenty of time Because of the Lyme Flat on my back for reflection
A champion to my cause, My nurse practitioner is my savior We share many guffaws About `Antibiotic seeking Behavior'
And how bout those of us Accused of strange psychoses? When all we are is sick with Lyme Not `delusional parasitosis'?
Get a grip, CDC You haven't helped me Millions sick and you don't see ``The ELISA test useless?! It can't be, oh golly gee!''
The fastest growing vector borne disease Is growing oh so fast And yet you pretend it's nothing By sitting on your ... um ... posterior.
We are so sick It's spreading oh so quick You couldn't care a lick You're all a bunch of ... um ... people who should be better informed about the nature of this extremely infectious and debilitating disease, spend more money on real research, stop attacking doctors who are actually trying and succeeding in treating infected people, and alerting the population to this international health crisis. Ahem.
Why do people not know, that you can get Lyme from mosquitoes? Or is this information that you somehow have vetoed? What about gnats, lice or fleas, or blood donations - please! Let people know so that this unchecked spread can cease.
Two weeks of antibiotics cures this? What, are you completely mental? This is obviously not true Unless you have the brain of a lentil
You say I have chronic fatigue, I say it's an infection You say I'm out of my league I hear your snide inflection (My $200 visit: quite quick Me: still sick)
You say I have Fibromyalgia Yet you don't even know what that is! I can't find anything to rhyme with this, But I bet it's Lyme disease.
You say I have MS You point to all the lesions Which, coincidentally, are the same in Lyme How about using logic and reason?
You say I have Reynaud's Phenomenon Now you're just making that stuff up Throwing syndrome after syndrome at me Hmmm, avoiding the real problem much? Yup!
This poem is a bit tongue-in-cheek This disease made me quite silly, I think that I shall scream and scream From taking all these pill-ies.
Just remember the next time a loved one gets sick With a mysterious malady, You didn't believe in Lyme disease, But it believed in me!
Posted by oxygenbabe (Member # 5831) on :
I met a tick. It made me sick. Posted by Tracy9 (Member # 7521) on :
ROFLMAO!!!!!
I love it, perfect!!!!!
Posted by Tracy9 (Member # 7521) on :
My Body has Betrayed Me
I am living each day Jailed in this broken body That surely can't be mine.
This body doesn't move well, This body can't talk right. This body bumps into walls and doors It stumbles, it trips, it falls. This body is a cruel imposter.
This body is bloated and shapeless It doesn't fit into my clothes or shoes This body can't run or even walk some days It can't exercise without falling into a heap Of feeble useless exhaustion. This body is a fraud.
The body is stranded in some insidious wasteland Where used up shells are forced to reside Suffering through some pathetic half existence Worthy of only the lame and hopeless.
Not even in my college days Of pulling all nighters to cram Or partying till the dawn Or popping diet pills to lose five pounds Did my body rebel like this.
Not even when wracked with fevers Or wretching with flus Or twisted and stretched past all possible limits With the agony of childbirth Did my body surrender like this.
I am locked between the frustraton of being misunderstood And the sickening emptiness of being pitied. Somewhere in between I am forced to exist Wishing for understanding and empathy Without sympathy and sorrow. Yearning for friendship and strength Without fear and avoidance.
My body has betrayed me. God, help me to remember That as long as your spirit lives in me My spirit still lives.
My spirit still lives.
Tracy A. Will April 5, 2008
Posted by OConnor800 (Member # 14895) on :
i like writing poetry.
here is something i wrote when i felt really sick, it doesn't address lyme directly but rather i was trying to express how it felt to me at that moment. it's extremely simple/plain and short because i was nauseous.
i wrote another one the other day, but that was with bartonella rage, and i don't relate to its anger right now.
HERX
This is a poem that no one will read. How do you do? Why has the cat Left the porch? Why have the astroids Morphed into yellow carnations? We must not know to know these things. Then who will find them out? The black banks of the river pour Glitter of cobwebs across the sky. Yes, the moon is high tonight. No one will know. This is just a poem no one will read.
Posted by Robin123 (Member # 9197) on :
ICKY LYME-RICK
There once was a ticky named Ricky That wasn't really that picky. Be it mouse or a grouse, Or, heavens, one's spouse, Ricky made any quite sicky.
Posted by Cobweb (Member # 10053) on :
Metallic Blue- I loved the tone of your poem. I wrote one similiar about "The Devil Tick" which of course I can't remember right now, nor can I find a copy-but I'll keep looking.
Meanwhile here's one on a more serious note:
Trying to Make Use of Suffering
I live suspended in the time and space of illness.
The malaise of Lyme blended with the melancholy of Depression.
My feet do not touch the ground. I cannot put one foot in front of the other. How can I move forward?
The days move from light to dark to grey. When it is grey, I cannot even see the clouds moving And it feels as if time is stuck,too, Until the sun shines again, And I realize the universe is going on without me.
My life used to be moving in a good Orderly Direction Until it collided with tragedy. Now I do not live in the real world, I live inside my head where no one can see me.
So I write.
I write to make use of suffering, To touch someone else no one can see, To connect across the pain, So I will not feel so alone.
I live suspended between life and death.
Posted by Larkspur (Member # 5131) on :
I really enjoyed reading everyone's poems. I wrote this one a year ago about having chronic Lyme..
Waiting(As a State of Grace)
I'm weary, but I can't sleep. I'm hungry, but I can't eat. Waiting for this garden to grow.
My young(ish) bones feel old and tired; A rusted watering can's weighing me down. I wonder:Is this journey ever gonna end?
But if I'm still and listen closely, the garden tells me what it needs.
So I'm gonna go ahead - get down into the dirt, tend to some things. Do heavy lifting if I have to. Remove all those weeds leftover from past seasons. And just in case, I'll make sure to leave some open space Waiting for this garden to grow.
I'm gonna water those plants so they can flourish and thrive And also, I know, I've still got a few seeds here left to sow. Waiting for this garden to grow.
But one day soon, this garden's gonna bloom, And will overflow the boundaries I created so long ago. Flowers blooming everywhere, abundant, beautiful, alive I'm going to give them away to all who pass by. Once this garden has grown.
- Abby (aka "Larkspur") 2007
Posted by Lymetoo (Member # 743) on :
Lymebytes said, "As my favorite minister Joyce Meyer says, "You can be pitiful or you can be powerful, but you cannot be both" So FIGHT...and never give up and settle for this ever! "
Joyce Meyer does not just tell people to "think happy thoughts." Tune in sometime and see what you find!
The link DOES work if you copy and paste it to your browser. I don't understand why it's not clickable here???
Posted by aklnwlf (Member # 5960) on :
Love them. And wow OConnor.
Ok folks right out of my Lyme Journal #1.
Sept. 17, 2004-First 2 days of orals
Life spiralling down into a spirochete.
That's not me! That's not me!
I am more.
Posted by victoria (Member # 11267) on :
the wall.
It's starting to get hard to keep my sheet rock from crumbling down these days...
Holding all this weight.
I stand alone watching over a bed of a man all alone- They have mentioned terminal cancer tried to reach a family. No one came and he spent his last hours weeping alone. A little bit of dust decays from a corner unnoticed it is- as the room is stripped and cleaned and the chunks of me are swept away no one pays attention.
It's interesting how life plays out- I heard one nurse say he was famous in his day. Tonight his fame didn't matter all that much For tonight he was left astray.
After 3 long hours of scrubbing my surface Bleach rich in the air... My surface feels beaten and tired and completely worn to shreds but I keep on standing for-
A new story is unfolding and a bed is wheeled in- A young girl coming in from complications of pregnancy They keep her over night reassuring her everything will be alright the next morning she is handed a sheet- signs by the X and is gone as quickly as she came.
For cases like these they change the sheets and sweep the floor. The room is barely unoccupied when a knock comes at the door. With an all too familiar rattle, clank, and clunk then yes one more bump and the bed is in place. I don't believe this says one man another says the same They wheel in an unresponsive victim and they quickly leave the room. Family enters one by one a mother, father, and aunt with tear stained faces from what looks like a long night.
This case are the cases I like to watch meticulously For who knows what you may see. A doctor walk in with a troublesome gait and explains surely this must be a sin- For he can no longer treat their daughter So he must hand her over to another man who isn't as well practiced as him!
A new man enters pretentiously he pokes and prods The family stares at him anxiously. Then states this case is a bore. It must be psychological. For nothing else adds up right. With a turned up nose he is quick to dismiss the case.
Gradually the patient opens her eyes Days pass and she's permitted to leave unable to walk or render a plea
Soon her birthday will come says her original PCP. I will have the right to take her in just a matter of months When she will be 17 then and I will take her back to my care. Until then they shall go home and wait till the day they aren't fighting for their medical care.
I always wonder what happens to these cases once they are out the door.
Days are never slow at this place For it surely shows with the crayon on my surface With cracks in my corners I am weathering more as the years pass soon they will replace me I know new panneling is on it's way- I hear the order made; I've seen the halls change. Until then I do not rest. I just wait until I have another guest. Written by- Victoria Wilcox
here's my poem
Posted by bettyg (Member # 6147) on :
powerful poems everyone.
victoria, you can sure tell you've spent a LOT OF TIME in hospitals at your young age of 17 then!
thanks for sharing them here with us all! Posted by ForestNymph (Member # 15109) on :
I finally read through them all. I enjoyed every one of them! It's interesting how we're all telling a similar story yet each perspective is so unique. There is some real talent among us. Thanks everyone for sharing your work. Posted by foggedup (Member # 7415) on :
This is written by my daughter Courtney (18 years). She attended the funeral of a friends child (baby), maybe the hardest thing any of her friends have ever experienced while in HS.
The small, white box.
I remember the day. Ordinary...but sad. I saw a butterfly, and thought of you. I sat through the service, tears streaming down my face. You were only three. It's over now. They are playing 'Twinkle, Twinkle Little Star'. You wanted to be a princess. I only saw you for a moment that day... and I had one thought; Little girls shouldn't wear makeup. Courtney Lynn Bingham
Copyright �2008 Courtney Lynn Bingham
Posted by foggedup (Member # 7415) on :
Glass
I am glass, don't touch me, for I will break. I am delicate, beautiful, eternal. I am transparent, see me. I am colorful, bright, vibrant. I am hard, feel me. I am peaceful, calm, never ending I am happy , be me. Don't doubt my stability. I will break. You push me too far. I am shattered. Ha! I win. I am part of you. I am glass, don't touch me, a warning, for I will break, truth.
Courtney Bingham 2-06-00
Posted by heiwalove (Member # 6467) on :
i wrote this recently to/about my mother, who didn't believe i was sick when i needed her the most. *
When You Called Me Crazy and Meant It
I should have screamed with the bone rage illness stole.
Should have undone the thrust from womb to world, stilled that first pink wail, pulled the caul back over my face. Torn
the clock from the hospital wall, bent the months in reverse: a jellyfish with fins. A single cell to call my own.
How skilled I am at being your daughter.
You yell, shake your head. I rehearse the script in flawless silence. How could you have birthed a child like this.
When your phone call strapped me to the gurney, when the positive blood test wasn't enough, when you took their white coat words over my own corroding body
I should've pulled you into the bathroom. Showed you how avocado and fruit and meat broke the levee of my intestines.
Should have flipped my skin inside out so you could see the bees I slept on at night.
And when you still thought I was trying to die, I would pry my brain from its wet cave. Lay it swollen and cold on your kitchen table. Sing a children's rhyme it could no longer understand.
You'd see it praying each night to a god made of toothpicks and glue, knuckles whiter than mine: Please let me wake. Just one more day.
Mother, let me tell you what little I know now:
I was never so wed to life as those eight and a half months I clung to its last crumbling edge.
[ 04. May 2008, 05:58 AM: Message edited by: heiwalove ]
Posted by heiwalove (Member # 6467) on :
up for more poems Posted by Yemaya (Member # 8842) on :
Beautiful Poems Everybody.
Pains of Lyme
Intense, intense the word is bouncing around in my brain.
Making itself the reflection of my pain.
I just want to scream, & make it stop.
It invades every fiber of my being, overflowing until I pop.
Its taken away a life that I can't spare.
Making you want to just rip out your hair.
This pain, this pain that is in no way fun.
Just want to make it all go numb.
Its throbs are the background music to my life.
I try to make it go away with Rife.
Electromagnatizing my condition.
Killing all the spirochetes is my mission.
Please don't say, but you don't look sick.
Because you won't know until you are bitten by a Tick.
Why would I lie about being sick, there is nothing to gain.
I'm barely living this life, in a fog of pain. Inaccurate Tests that are never sure.
ABX, Alternative Treatments, looking for a cure.
Trying anything to get your Health back.
So you can live again & get on track.
There is more to this all then what it seems.
It messes with my head & invades my dreams.
I can't deal with this Life of Lyme.
What they're doing to us all is a Crime.
The Government, Insurance Companies, & IDSA.
Allowing us to rot & decay.
We need to make them look at us & see.
Make them pay, & break open their conspiracy. . � 2008 Yemaya
Blessings & Healing, Yemaya
Posted by believe3 (Member # 6216) on :
I wrote a poem today. I thought I would share it.
Fight
Im so tired Headaches Stomachaches Body aches
How do I live? How do I fight?
My mind is numb My body is numb
I am alone Surrounded by people Who can not understand My pain
How long will I live this way? How long is this fight?
Keep on fighting Keep on living
Don't Cry Don't Stop Don't give in
Just Fight
Merrie Kisch June 2008
Posted by mtree (Member # 14305) on :
posted 28 March, 2008 11:02 AM -------------------------------------------------------------------------------- I'm lost....
Where am I going.....what was I doing.....where was I......
All I know is that.....everyday I am in pain...everyday .....it may either be physically...emotionally.....or.....mentally.....
I open my eyes.....and attempt to have a productive somewhat purposeful day. I have to be proud of the mundane things that I CAN do..... I have to not dwell on what I can't do.....can't have.....don't have.........
I'm confused with my life....and trying so desperately to hold on to one.....a life .....find a place where I belong......
I sometimes just want to disappear from this life......not die......just find somewhere that people are proud of me......understand and never forget the life I am living everyday......
and that the only choice I have in my day is to either exist.....or to live.......and when I try to choose to live......it's a battle....an unfair war zone that no matter what I do....how hard I try and fight...the reality is maybe I am just existing......
That to me is sad........I don't want a life of just existing......
I want to matter......
I don't want this life...........never did.....and I never will be able to make peace with myself or this life unless I find purpose......a way to matter......
I am trying to regain some strength again to get back into the real world....
....like a fighter that has to practice before his big fight......I need to prepare....toughen up.....put my gloves on.....
... and know that it will hurt.....there will be hits that I can't duck.....and some that I have to take....
But lately Im thinking why....why do I have to get back into that world.....that fight.....why do I have to be the one that has to compromise my feelings........my pain.....for someone else's ....
........take those hits and not hit back..... Maybe if I hit back just a little I won't be knocked down completely......
I'm tired of fighting everyday......for my health........I just don't want to be tired of fighting ... to live and to have a life.....
I am in pain..... I am afraid...... I am sad...... I am struggling.... I am fighting...... I am also... Hopeful..... Blessed..... Alive..... Content.....
But sometimes I just feel lost.........
Thanks for listening........ mtree
-------------------- worrying about tomorrow takes its strength away from today
Posted by Robin123 (Member # 9197) on :
I wrote a poem today, inspired by Tina Garcia's passionate and eloquent opening testimony on behalf of patients for the 7/30/09 IDSA hearing.
It's based on her early statement that living with Lyme disease/coinfections is equivalent to "life in prison for the chronically ill."
So I thought about that, and came up with this:
LIFE IN PRISON, WITHOUT WALLS
Life in prison, without walls: Captured inside, chemistry stalls. Arrested inner, normal life, Causing invisible, outer strife.
To look at us, you will not see Our sentenced biochemistry. Our nerves, soft-tissues now inflamed, With hidden illness we've been framed.
Locked up in sickened body cells, We can't join you in life's dells, Not until we find some keys To free us from these miseries.
With guarded hope, we enter a plea For any helpful strategy That can release us, on parole, For a chance to live life-whole.
By Robin Krop c2009 Dedicated to our shared experience
[ 08-02-2009, 05:06 AM: Message edited by: Robin123 ]
Posted by bettyg (Member # 6147) on :
robin, good, thoughtful one...
may i suggest you show ownership and show your name and copyright at the bottom?
you wrote it; you deserve the praise; not someone else my dear friend Posted by Robin123 (Member # 9197) on :
Ok, Mrs Bettyg - just did so - may we be able to move on and out from here...
Posted by garunner (Member # 19474) on :
On a lighter note.......
MEPRON HAIKU
Such a sunny hue Cleverly disguising the Evil on my spoon
and the sequel....
Even my good friends Ben and Jerry don't offer Much consolation
Posted by btrflynana (Member # 21117) on :
My Biggest Fight
The last few years have been scary I must admit I have often felt weary
From doctor to doctor we did go Most of them had no clue, they just didn't know
from skin rashes, to body pain, and more than the stiffness you see finally five years later the true diagnosis Lyme disease came to be
Yes at times I stutter, my vision not quite right, and my gait can be painful and quite slow for me these physical issues and many more have often left an emotional blow
I realize it's up to me to do my part to work towards helping our doctors and government open their minds and their hearts
I struggle to read everyday all that I can in an effort to help educate modern man
Yes I have Lyme disease you see This is the battle that has been thrust not by my choice upon me
My mind feels tired my body is ill my daily routine filled with dozens of pills
With each new sunrise I tackle the day and pray that more researchers will look our way
There can be no doubt this is my biggest fight Lyme disease...these inner bugs trying to take over my precious life
here in this body weak at times as it may be My attitude I've found is my survival key
I try to stand tall and hold my head high and look at each passer straight in the eye
For as ill as I am so wise is my mind Once again the question for all to hear; Why are the educated so deaf and so blind
A country that has the knowledge and skills to research and seek A cure for those of us who continue to be so ill and so weak Btrflynana 2009
Posted by Robin123 (Member # 9197) on :
Thx for adding more poems!
Good haikus, garunner - do us a flavor and keep it up!
And btrfly - Welcome!
It's cool that your first post here is a poem! May you find lymenet to be a wonderful home!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[hi]](graemlins/hi.gif)
![[kiss]](graemlins/kissing.gif)
![[bonk]](graemlins/bonk.gif)
![[Razz]](tongue.gif)