posted
This was written by a friend of mine. He asked me to post it here. We hope you like it!!!
*********************************************
The last essay I did was how I feel having Lyme disease and all the other things I have wrong going on inside me. Last night I was awake at 3 a.m. and once my mind gets going, I'm all done sleeping.
So now you know how I feel, but you don't know how we feel looking back at all of you who are healthy. All of us who have immune-compromising diseases such as Lyme, Crohns, CFS, ALS, Alzheimer's, MS, non Hodgkins lymphoma, muscular dystrophy, bipolar disease or any other chronic illness.
People with chronic illness face two hurdles. One is the illness itself, and the other is the perception others have of them because they are ill. The illness becomes their identity, essentially making them faceless.
People have no clue what it's like to be us! Well, now you will. See, all of us with something broken have been taken out of the real world, or the working world and we just can't explain what it's like.
Well, imagine for a moment that all of us are toys lying on the living room floor. The toy box is next to the kids' bedroom doorway. Mom and Dad say, ``OK, kids, pick up all your toys and get them into the toy box and back into the closet. It's time for bed!''
OK......and in go all the new toys from Christmas and birthdays past. (That would be all of YOU!) Along with the newer toys goes a truck with the front tires missing, a car with the doors off, a matchbox car that has no hood, a 56 T-Bird without the top on it, and the trunk is missing.
Then there's that ole tractor that once had a bucket on the front and a back-hoe on the back, but somehow they're gone and and broken off.
Susie loved that doll, but over time her head got broken off and one arm was missing. GI Joe has seen better days, because his left arm and his right leg have come up missing.
Johnny's plastic train with 9 cars was the best thing last Christmas, but 3 cars are missing and the caboose has no wheels. Now when the toys come back out another day and get dumped on the floor, there's all the good ones that are played with right away. All the ones that have parts missing (That's all of US!).... Well, nobody plays with them because they're defective. They can't roll because the wheels are missing and parts are long since gone.
But they are still toys that the kids got and don't have the heart to throw away. So even though we get to come out and sit on the floor, nobody plays with us because we're not ``whole'' anymore.
But we still get to be with all of you and get to watch and see what's going on! And then there's lots of times we never get out of the toy box. There's days on end that we just sit on the bottom of the toy box, because we can't do the things that we once could, and nobody needs us anymore.
Then it's back in the closet and the door is shut, and it's dark once more in our lives. Not that we're not alive, we just can't fit in anymore and have to wait till everyone comes back from the real world and lets us out from the dark closet and we just sit on the floor and get to see what y'all are doing all over again.
We know we have parts missing and can't roll with the good toys. We know we'll never fit in with all the toys that have all their parts and are newer and shinier and we expect that.
Thank you for not throwing us away though, even though we can't compete with the new toys. Some of us do better than others. Those with only one wheel missing get around better than the ones with all the tires missing.
And we have gotten used to the dark closet when all of you get to go out in the world and do whatever y'all do. We just know that we can't do that anymore.
We used to be able to run with you too, but somehow got some parts missing and we're `Stay at Home Dars All Day Long', like my new Lyme song goes. We've even got used to watching all of the good toys go roaring up and down the carpet, and some of you even get to go outside and play in the sandbox too. But we have to just stay where we are because that's just what has happened to some of us, and tonight it's back in the toy box and into the dark closet.
There may be a cure for some of us, but it's hard to get the big companies to send those few little parts, like hoods, trunks, wheels, heads, arms, legs, and missing eyes. They are just too busy to take time for such little things like that.
We accept that too. And if you look at us just right, you can't even see there are parts missing and you think we should be able to come out and play.
It looks like we should be able to keep up with all the good toys, but it's so hard being stuck in this old broken frame, knowing we once were part of the big picture and had something to offer, and could go places.
But no, we're dependent on everyone else to help us out of the toy box and back in again in the dark closet. You can't imagine how lonely it gets in there, day after day, all alone, knowing that all the healthy toys get to go out and play.
What makes us feel good though is to hear stories of how we would rip up and down the hallway and across the family room and into the kitchen. Or how much sand we could dig on a good day in the sand box.
Those are called ``memories'' and all of us broken toys have lots of them, because that's all we have left! We really appreciate all the things all of the good toys do for us and hope they all understand it's not our fault. We just got stuck with weak or broken parts!
Hopefully my broken-toy story will help all of you understand what it's like being us. Up until last night, I didn't know how to put it either. But somehow I think I got it right now. It's just the way I feel, stuck at home trying to do the best I can with what little parts I have left.
I once had ``big dreams'' of being a real country music star, with my songs on the radio, and the videos on TV. You can plan your career, plot the success ladder all you want, but you can't count on your health to be there for you.
Not everyone gets to stay healthy. There are a lot bigger guys than me that were taken to their knees by a health problem and taken out of the game. I'm just glad I can do what little I still can. Like the ole saying goes, we don't have to look too far away to find someone that would gladly trade places with us.
Be glad what you do have! There's a lot of people worse off!
On days where I feel like I have the energy to do something, my mind is flooded with everything that needs done that I am behind on, then just
as I tackel a small project the energy leaves, and unable to complete it, let alone all the other needed projects that had flooded my mind.
I hope its ok for me to print out your example, I also would like permission to post it on my site, may I?
I think this will help a lot of people to understand what we are going thru!
Let me know, Later Bruce
-------------------- CFS for 20 Years then found LYME the root cause! Am dealing with several viruses also. Posts: 89 | From Alliance Ne | Registered: May 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you Dar and Tutu for posting this.
Sometimes I feel like the Velveteen Rabbit. Even though all the other toys are newer and they're all new and shiny and our velveteen is all worn off the love that remains for what we once, were and are, makes us real.
Your story made me feel that. Thank you!
(Boy, I hope that made sense to someone but me. )
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Im Here..............! LymeTuTu, said, I thought you were on Lyme Net? No, other wise I would be on every day, reading what every one has to say, and getting nothing done,or record'ed.
Well, im on Lyme Net now,and happy I came up with ( Dar's Toy Story 1)what it's like to live our live's day in,and day out.My mind works best, wile every one else is asleep.
Now Every One, can post My Story, any place they want. Print if off and hand it out,or have it print'ed in yr local news paper. That's why I wrote it.
If ya'll like'ed My first story, then yr gona love Dar's Toy Story 2, "Looking@Life Threw Dar's Eye's"
Gale's going to help me, and put it in form, like she did the first one. And should have link's to both site's, where you can hear my new song, and vote for it on American Idol. It's 103 today on the chart's, in part for the other song Can I Check You For Tic's. Why dident Dar think of that...........?
The tilte to my next song is "Dam Tic" Out by this fall. Vidio for Stay@Home Dar, should be on You Tube by this summer ! Thanks Again Texas Dar,,,,,or TixanDar, on Lyme Net !
Posts: 39 | From Branson Mo. | Registered: May 2007
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posted
Please dont tell anybody, but Dar has them water-thing's falling off my cheek's, cuz I had no clue how my story would touch people. All I did is put into word's, how I feel being a Stay@Home Dar,and record'ed a song about it. That's all I have left, I've already lost my Music Career, and just Sit@Home, watching everyone else get to have-a-life. Funny, you can read the type, but when it's on the front-page, you did'ent realize what you dun-rit, till you see it on the big-screen........! It's like reading somebody's post,and making you feel the pain thAre going threw. "BUT" Im the guy....! And reading it,makes me want to write more,and dedacate the rest of my life to making sure I've got 1 Lime song on every cd that's releast'ed on the PCB web-site. The tear's are gone now,and my mind is already thinking on the next song, after I record "Dam Tic" out this fall. Im the guy, that is Jonny-on-the-Spot, to lift everyone else up,cuz,that's what I do. This time,,,,im the one that need's a helping-hand. I neaver knew I could touch so many people with my mind, or my song's. I've got a lot of work in head of me, trying to touch outer Lyme's Hart,and sing them-a-Song........Stay-Tuned,,,,,,,,,,,and Dont Tell Anybody, Dar Was Crying..............! OuT ! Posts: 39 | From Branson Mo. | Registered: May 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Dar, what a wonderful way of expressing things! Now I've got those water things rolling down my cheeks, too.
Don't give up on your dreams. I've learned that they may take on new forms, but they aren't completely gone away. You may just surprise yourself one day.
Besides, we all need dreams to hold onto, to give us hope. Wishing you all the best in your battle!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
tutu, thanks a million for posting dar's story!
DAR, thank you for joining our board, but more importantly for expressing in words what we chronic lymies have been unable to do to tell our drs., families, friends, co-workers, neighbors, and the list goes on and on!
dar, thank you also for giving your permission for us all to print, copy it off for family/friends, etc.
TUTU, how about showing a COPYRIGHT with his name at the bottom; this story is going to get international traveling mileage!
dar, i'm going to put this link into my newbie links/advise i sent out. BTW, i'll be sending it to you too in a PM, PRIVATE MESSAGE.
also, going to ask treepatrol to add this to his extensive lyme archive of newbie's links, etc.
it will be a nice addition to the SPOON THEORY, LYMEDAD'S LETTER TO FAMILY/FRIENDS, etc.
dar, you can look in the massive amount of info i'm sending you and click on LYMEDAD'S letter also; both your letters brought tears to our eyes.
dar, YOU ARE A VERY GIFTED WRITER, and it is reflected over and over in the above letter.
dar, how long have you had lyme? been correctly diagnosed with it?
i was going to listen to the song, but i messed it up somehow, will try tomorrow when hubby isn't sleeping by pc!
glad you got hooked up w/gayle/tutu, and she formatted your story for our neuro lyme brains!
THANKS TUTU!! dar, see you on the board.
when you get my newbie stuff, please pass along the 2 lyme petition sites to your band/crew and OTHER celebrities in Branson. WE NEED TO MAKE A DIFFERENCE TOO!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Dar,
Loved the analogy of being a "broken" toy.
It really fits.
I find that I only have tolerance for other "broken" toys.
New or nearly perfect toys drive me nuts.
I don't know if it is a higher level of conciousness or spirituality
Or maybe even a lack thereof,
But I find that the inane chatter of "normal" people
Drives me crazy!!! I just feel like there are so many more important issues in life
As opposed to talking about what color couch one has bought.
I know I must learn patience with these "merely normal" persons....
However, even when I get to remission, I don't believe that "normal" will ever apply to me again.
Maybe that is a good thing...I think it is.
Thanks again for the story and your wonderful ability to write and
Paint a picture of what life is like with a chronic illness.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Hi, I'm Dar's wife and would like to tell my side of living with a broken toy.
When you first find out that the toy is broken you have high hopes that someone can fix it. But as time goes on and you've spent all of your savings, you realize that all attempts have failed and the toy is still broke, never to be the same.
It's almost like a death, you cry many tears. You start to treasure the broken toy, hold it, protect it, put it where no one can hurt it again.
When your feeling down, you get this toy and set with it and remember all the things you used to do together, go camping, hiking, visit all types of neat places. You would like to do this again but your toy can no longer do these types of thing and you aren't strong enough to carry it with you. So you go alone, but it's not the same. It's lonely and there's no one to share special things with. Your memories are what keep you going.
You do what you can to find things to keep your toy company so it won't be alone all day while your at work. You check frequently to make sure it's ok and the first time you can't find it you panic and run around franticly until you do and are sure it's still there and ok. Your toy becomes agrivated with you because you worry to much and he just want to go and play with the other toys or find a quiet place to take a nap and not be disturbed. You try to understand but still get upset and hurt because your toy is angry. You know it's not his fault but it still hurts.
In some ways being the caretaker of the broken toys is as hard as it is for the toy. You feel guilty that you can't fix your toy and that your life still goes on normally, or some what normally. You do your best to make everything ok but once in a while thing just become overwhelming and you fall apart. That's when your toy is most important. It makes you feel better just to know it's there and it still loves you and counts on you to take care of it.
Some times it's very hard to be the care taker of the broken toys. Would I change anything? Only if I could fix MY broken toy.
Posts: 39 | From Branson Mo. | Registered: May 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
dar's wife, you did a very nice complimentary, heart-warming counterpart of being CAREGIVER to the broken toy in your life.
beautifully written, and i related my hubby so much to you.
thanks so much for you 2 joining our board!
fyi, i send dar's toy story and lymedad's letter for family/friends to ONE of my 3 brothers by email asking him to email other 2 since they won't give me their eail.
i hope they might finally "GET IT" by dar's and lymedad's postings! wish me luck.
i don't think i'll hear anything but i tried!!!
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
mrs dar and dar Thank you for both your stories.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Dar's Toy Story #2 Comming Out in 5 Day's.In Two Part's. Had way to much time, to think about my life. Viset'ed some places I realy did'ent want to go,or think about too. Agian,Please pass this on, to every-one, who dos'ent know what it's like, Living-a-Day, in our live's. They have no clue, how hard it is, being a Stay@Home Lymey,or Cronic-Illness, with nothing to do, all day long......! Texas-Down-Dar OuT ! Posts: 39 | From Branson Mo. | Registered: May 2007
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