Two things.

[EmersonAilidh]

I promised to write a little bit. Well, I did.

 

I wasn't going to write until I had a happy ending. Until the hero saved the day, until the prince rescued the damsel in distress, until the sick child got well. Everytime I mustered up the courage to introduce pencil to paper once again, I was faced with a daunting task; to write a story still in the making. Whenever I gathered the strength, motivation, & energy to try, I was confronted by that glaring error, that particularly inconvenient elephant in the room. How do you finish a story that has yet to conclude?

It was only after reading the story of a sixteen year old Autistic boy named Josh that i was made aware of that first elephant's uglier, more obnoxious companion.. If I wait around for my ending to find me, it might not be such a happy one. If I don't write it down, who can read it? If I don't shout it from the rooftops, who can I expect to hear me? If I don't make them listen, who will help? By sitting back & waiting for that happy ending to come my way, I was ensuring that countless other afflicted children would be joining me in my wait. But by writing my fifteen years, by making not only my voice but the voice of millions of other children worldwide left sick by a failing medical system heard, I would be helping to ensure that the children of future generations would be able to get what they need, when they need it. I would be doing my part to guarantee that no child has to go through what I & innumerable other kids in your country, state, & city have been forced to endure for the sake of doctor's egos. By sharing, I would be making a difference for those already here, & those to come.

I'm no Pamela Weintraub. I don't have the money to fly to join fellow patients in their living rooms, I don't have the resources to interview doctors, & I sure as ###### don't have a degree in science journalism. However, I do have P.A.N.D.A.S., Dystonia, possible Third-Stage Lyme Disease/Epilepsy, God-Only-Knows-What-Else Syndrome, & a drive like you've never seen before. I may not have the credentials, I may not have the experience, but I have a body that's against me & I know better than any textbook or school-made expert. I have what is making so many doctors, congressmen, & parents lose sleep at night. I have it. It has been said that anecdotal evidence is subjective & has been brushed off as practically worthless by most, but personal experience is all I have to contribute. In the beginning, when I was young & still trusted any man or woman with a white coat & a stethoscope, I had this crazy idea that medicine was about healing. That doctors worked not for a paycheck, but just to make their patients feel better. That medicine was all benevolence & philanthropy. Over the years though it has become painfully evident that things are not as they seem on the surface. While pharmaceutical companies stack their dollar bills, we are passing out, staying awake, twitching, obsessing, having seizures, losing our minds, stuck in a ###### unimaginable to any of those fortunate enough to never have ventured into it. While doctor's frame their accomplishments, their degrees & certificates, we are getting sicker. While the CDC, NIMH, & everyone else tells us that nothing is wrong, we are dying.

My myriad of both discovered & yet-to-be diagnosed medical problems may not have put me in the grave, but my own defective body has most definitely taken my life, & I'll be d###ed if I sit quietly & watch as so many other children just like me lose their livelihoods to completely treatable conditions/diseases. So, how do I write a story that has yet to finish? I don't know, because I don't have to. This is my testimony, which echoes that of millions of other helpless people all around the world. It's your move, medicine.

 

(Also, just had to add, my handwriting is so "off" that all of that only took the front side of one page, hahah. Now you know why my teachers hate grading my stuff).

 

& a perfect example of what I always refer to as "Narcoleptic symptoms". On Friday night I spent the night with my friend Lauren & slept about nine hours. That's not much at all on a weekend night for me, but it was storming & I just don't do storms (total meltdown. Oh my God), so sleep just wasn't coming like it normally did that night. When Saturday came around we went over to my house, & I took a nap from three to five. She left somewhere during that time, I always fall asleep on my poor friends, hahah. I woke up only to go to a birthday dinner at seven, & got back around nine. My Mom & stepdad had gone out to Dallas for some fun with friends so I had the house to myself & was planning on staying up way late catching up on five episodes of Mystery Diagnosis & three episodes of Medical Incredible. One strange upside to P.A.N.D.A.S., the only thing my parentals have to worry about when leaving me home alone for the night is me watching too much Discovery Health Channel, hahah. I made it through one episode, & woke up half an hour later with the television on that "Your episode is done" TiVo screen. But I hadn't fallen asleep. All too used to this "Where did that half hour go..?" feeling, I just took off my false eyelashes incase it happened again (you can't sleep in those) & started another episode. When I leaned over to check my phone, it was an hour later. 11:30. & the television was back to the "Your episode is done" screen. I started it over & realized that I had seen literally none of it. Whatever, I thought, getting a little frustrated, & I started watching the episode over again. Then I woke up to my Mom walking through the door. I was asleep, somehow on the floor instead of the couch this time, & it was one in the morning. Three hours after I first "fell asleep". When I woke up I was furious & just kept shouting "What the F###" over & over. All I wanted to do was have a night to watch TV. I had already slept eleven hours that day, & I had only been awake for four hours when I got comfy on the couch. When I got up at one & went to bed I was asleep before the previews for the DVD I put in were over & I slept for ten more hours. I don't think "Hm, I'm tired. Maybe a nap would be nice.". I AM ALWAYS TIRED, there's not even any thought about it anymore. It's just.. How it is. The way I explain it is that I don't fall asleep, I wake up.

[keeptrying]

I promised to write a little bit. Well, I did.

 

I wasn't going to write until I had a happy ending. Until the hero saved the day, until the prince rescued the damsel in distress, until the sick child got well. Everytime I mustered up the courage to introduce pencil to paper once again, I was faced with a daunting task; to write a story still in the making. Whenever I gathered the strength, motivation, & energy to try, I was confronted by that glaring error, that particularly inconvenient elephant in the room. How do you finish a story that has yet to conclude?

It was only after reading the story of a sixteen year old Autistic boy named Josh that i was made aware of that first elephant's uglier, more obnoxious companion.. If I wait around for my ending to find me, it might not be such a happy one. If I don't write it down, who can read it? If I don't shout it from the rooftops, who can I expect to hear me? If I don't make them listen, who will help? By sitting back & waiting for that happy ending to come my way, I was ensuring that countless other afflicted children would be joining me in my wait. But by writing my fifteen years, by making not only my voice but the voice of millions of other children worldwide left sick by a failing medical system heard, I would be helping to ensure that the children of future generations would be able to get what they need, when they need it. I would be doing my part to guarantee that no child has to go through what I & innumerable other kids in your country, state, & city have been forced to endure for the sake of doctor's egos. By sharing, I would be making a difference for those already here, & those to come.

I'm no Pamela Weintraub. I don't have the money to fly to join fellow patients in their living rooms, I don't have the resources to interview doctors, & I sure as ###### don't have a degree in science journalism. However, I do have P.A.N.D.A.S., Dystonia, possible Third-Stage Lyme Disease/Epilepsy, God-Only-Knows-What-Else Syndrome, & a drive like you've never seen before. I may not have the credentials, I may not have the experience, but I have a body that's against me & I know better than any textbook or school-made expert. I have what is making so many doctors, congressmen, & parents lose sleep at night. I have it. It has been said that anecdotal evidence is subjective & has been brushed off as practically worthless by most, but personal experience is all I have to contribute. In the beginning, when I was young & still trusted any man or woman with a white coat & a stethoscope, I had this crazy idea that medicine was about healing. That doctors worked not for a paycheck, but just to make their patients feel better. That medicine was all benevolence & philanthropy. Over the years though it has become painfully evident that things are not as they seem on the surface. While pharmaceutical companies stack their dollar bills, we are passing out, staying awake, twitching, obsessing, having seizures, losing our minds, stuck in a ###### unimaginable to any of those fortunate enough to never have ventured into it. While doctor's frame their accomplishments, their degrees & certificates, we are getting sicker. While the CDC, NIMH, & everyone else tells us that nothing is wrong, we are dying.

My myriad of both discovered & yet-to-be diagnosed medical problems may not have put me in the grave, but my own defective body has most definitely taken my life, & I'll be d###ed if I sit quietly & watch as so many other children just like me lose their livelihoods to completely treatable conditions/diseases. So, how do I write a story that has yet to finish? I don't know, because I don't have to. This is my testimony, which echoes that of millions of other helpless people all around the world. It's your move, medicine.

 

(Also, just had to add, my handwriting is so "off" that all of that only took the front side of one page, hahah. Now you know why my teachers hate grading my stuff).

 

& a perfect example of what I always refer to as "Narcoleptic symptoms". On Friday night I spent the night with my friend Lauren & slept about nine hours. That's not much at all on a weekend night for me, but it was storming & I just don't do storms (total meltdown. Oh my God), so sleep just wasn't coming like it normally did that night. When Saturday came around we went over to my house, & I took a nap from three to five. She left somewhere during that time, I always fall asleep on my poor friends, hahah. I woke up only to go to a birthday dinner at seven, & got back around nine. My Mom & stepdad had gone out to Dallas for some fun with friends so I had the house to myself & was planning on staying up way late catching up on five episodes of Mystery Diagnosis & three episodes of Medical Incredible. One strange upside to P.A.N.D.A.S., the only thing my parentals have to worry about when leaving me home alone for the night is me watching too much Discovery Health Channel, hahah. I made it through one episode, & woke up half an hour later with the television on that "Your episode is done" TiVo screen. But I hadn't fallen asleep. All too used to this "Where did that half hour go..?" feeling, I just took off my false eyelashes incase it happened again (you can't sleep in those) & started another episode. When I leaned over to check my phone, it was an hour later. 11:30. & the television was back to the "Your episode is done" screen. I started it over & realized that I had seen literally none of it. Whatever, I thought, getting a little frustrated, & I started watching the episode over again. Then I woke up to my Mom walking through the door. I was asleep, somehow on the floor instead of the couch this time, & it was one in the morning. Three hours after I first "fell asleep". When I woke up I was furious & just kept shouting "What the F###" over & over. All I wanted to do was have a night to watch TV. I had already slept eleven hours that day, & I had only been awake for four hours when I got comfy on the couch. When I got up at one & went to bed I was asleep before the previews for the DVD I put in were over & I slept for ten more hours. I don't think "Hm, I'm tired. Maybe a nap would be nice.". I AM ALWAYS TIRED, there's not even any thought about it anymore. It's just.. How it is. The way I explain it is that I don't fall asleep, I wake up.

[keeptrying]

I promised to write a little bit. Well, I did.

 

I wasn't going to write until I had a happy ending. Until the hero saved the day, until the prince rescued the damsel in distress, until the sick child got well. Everytime I mustered up the courage to introduce pencil to paper once again, I was faced with a daunting task; to write a story still in the making. Whenever I gathered the strength, motivation, & energy to try, I was confronted by that glaring error, that particularly inconvenient elephant in the room. How do you finish a story that has yet to conclude?

It was only after reading the story of a sixteen year old Autistic boy named Josh that i was made aware of that first elephant's uglier, more obnoxious companion.. If I wait around for my ending to find me, it might not be such a happy one. If I don't write it down, who can read it? If I don't shout it from the rooftops, who can I expect to hear me? If I don't make them listen, who will help? By sitting back & waiting for that happy ending to come my way, I was ensuring that countless other afflicted children would be joining me in my wait. But by writing my fifteen years, by making not only my voice but the voice of millions of other children worldwide left sick by a failing medical system heard, I would be helping to ensure that the children of future generations would be able to get what they need, when they need it. I would be doing my part to guarantee that no child has to go through what I & innumerable other kids in your country, state, & city have been forced to endure for the sake of doctor's egos. By sharing, I would be making a difference for those already here, & those to come.

I'm no Pamela Weintraub. I don't have the money to fly to join fellow patients in their living rooms, I don't have the resources to interview doctors, & I sure as ###### don't have a degree in science journalism. However, I do have P.A.N.D.A.S., Dystonia, possible Third-Stage Lyme Disease/Epilepsy, God-Only-Knows-What-Else Syndrome, & a drive like you've never seen before. I may not have the credentials, I may not have the experience, but I have a body that's against me & I know better than any textbook or school-made expert. I have what is making so many doctors, congressmen, & parents lose sleep at night. I have it. It has been said that anecdotal evidence is subjective & has been brushed off as practically worthless by most, but personal experience is all I have to contribute. In the beginning, when I was young & still trusted any man or woman with a white coat & a stethoscope, I had this crazy idea that medicine was about healing. That doctors worked not for a paycheck, but just to make their patients feel better. That medicine was all benevolence & philanthropy. Over the years though it has become painfully evident that things are not as they seem on the surface. While pharmaceutical companies stack their dollar bills, we are passing out, staying awake, twitching, obsessing, having seizures, losing our minds, stuck in a ###### unimaginable to any of those fortunate enough to never have ventured into it. While doctor's frame their accomplishments, their degrees & certificates, we are getting sicker. While the CDC, NIMH, & everyone else tells us that nothing is wrong, we are dying.

My myriad of both discovered & yet-to-be diagnosed medical problems may not have put me in the grave, but my own defective body has most definitely taken my life, & I'll be d###ed if I sit quietly & watch as so many other children just like me lose their livelihoods to completely treatable conditions/diseases. So, how do I write a story that has yet to finish? I don't know, because I don't have to. This is my testimony, which echoes that of millions of other helpless people all around the world. It's your move, medicine.

 

(Also, just had to add, my handwriting is so "off" that all of that only took the front side of one page, hahah. Now you know why my teachers hate grading my stuff).

 

& a perfect example of what I always refer to as "Narcoleptic symptoms". On Friday night I spent the night with my friend Lauren & slept about nine hours. That's not much at all on a weekend night for me, but it was storming & I just don't do storms (total meltdown. Oh my God), so sleep just wasn't coming like it normally did that night. When Saturday came around we went over to my house, & I took a nap from three to five. She left somewhere during that time, I always fall asleep on my poor friends, hahah. I woke up only to go to a birthday dinner at seven, & got back around nine. My Mom & stepdad had gone out to Dallas for some fun with friends so I had the house to myself & was planning on staying up way late catching up on five episodes of Mystery Diagnosis & three episodes of Medical Incredible. One strange upside to P.A.N.D.A.S., the only thing my parentals have to worry about when leaving me home alone for the night is me watching too much Discovery Health Channel, hahah. I made it through one episode, & woke up half an hour later with the television on that "Your episode is done" TiVo screen. But I hadn't fallen asleep. All too used to this "Where did that half hour go..?" feeling, I just took off my false eyelashes incase it happened again (you can't sleep in those) & started another episode. When I leaned over to check my phone, it was an hour later. 11:30. & the television was back to the "Your episode is done" screen. I started it over & realized that I had seen literally none of it. Whatever, I thought, getting a little frustrated, & I started watching the episode over again. Then I woke up to my Mom walking through the door. I was asleep, somehow on the floor instead of the couch this time, & it was one in the morning. Three hours after I first "fell asleep". When I woke up I was furious & just kept shouting "What the F###" over & over. All I wanted to do was have a night to watch TV. I had already slept eleven hours that day, & I had only been awake for four hours when I got comfy on the couch. When I got up at one & went to bed I was asleep before the previews for the DVD I put in were over & I slept for ten more hours. I don't think "Hm, I'm tired. Maybe a nap would be nice.". I AM ALWAYS TIRED, there's not even any thought about it anymore. It's just.. How it is. The way I explain it is that I don't fall asleep, I wake up.

Oops, pushed add reply before actually replying.

 

I do not have anything brilliant to post after reading this. I just wanted you to know that someone read this, feels for you, and is listening. You continuously amaze me with your posts. You are inspiring.

 

I had a meltdown today, feeling sorry for our situation and myself. I read this, and thought, if this young woman can continue on and fight then so can I. Thank you.

[momto2pandas]

What a great writer you are, Emerson. Keep at it.

 

But I'm sorry that you're in pain. I know what it's like. It will get better; hang in there. And keep on writing.