# New Yorker Article



## GailSusan (Dec 23, 2000)

The author of the bestseller "Seabiscuit: An American Legend" has suffered from CFS since 1987. She wrote a harrowing story about her illness in the July 7, 2003 issue of The New Yorker, which I just finished reading. Has anyone else read it?"A Sudden Illness" by Laura Hillenbrand. What a horrible illness. I'm so sorry for any of you who suffer from this. I never realized what it all meant until I read this article. My heart goes out to you.


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## Guest (Jul 11, 2003)

Haven't read the book but I will tell you from first hand experience that a life with FMS/CFS is wrought with constant pain and fatigue that make you willing to do just about anything to feel better. A neurologist diagnosed mine 12 years ago already.In general, medications to enable deep sleep and moderate, low or non-impact exercise are the ticket to feeling a little better. Pain relievers are a given. I add stretching & flexing to that. Have also found the hypnotherapy to be beneficial.With fibro, everything is ten times harder than it is for a person who doesn't have fibro. There can be days or weeks when getting out of bed is an accomplishment or once in a while there can also be a brief period of relief. But the pain and fatigue are typically and usually relentless.I find that in general I am unable to keep up the same pace that others do. My days are very structured to give me enough time for rest/sleep.I find also that it takes longer to "bounce back" after any kind of prolonged activity. Almost without exception, every day after work I come home and rest/sleep for an hour so that I can get through the rest of the day. As much as I love dance, I am often unable to get through an entire workout without resting. I've been known to curl up on the floor and briefly fall asleep during class. Hard to describe... it's an overwhelming urge to sleep.For some reason I also find that I cry a lot and the physical act of shedding tears somehow helps the malaise.Brain fog can also be an issue. On some days it can be so bad that it challenges your sanity.Evie Evie


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## M&M (Jan 20, 2002)

I'll have to look up the article. The interesting thing to me about all these diseases is how they differ from patient to patient. So, I'm always interested in reading someone else's experience with the same disease. Some people are able to work full or part-time, and have a lot of extra activities, while others are completely unable to work, some are even bedridden, or stuck in wheel chairs due to the same disease. Thanks for posting about it, now I'll know to try to find the article!PS - I just found out about this and wanted to add it:Additionally, Laura was interviewed by Bob Brown of ABC's 20/20 for asegment scheduled to air on July 18. Please note the scheduled air dateis subject to change. Check your local listings or visit http://abcnews.go.com/Sections/2020/ for more information.


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## Guest (Jul 12, 2003)

MM.... I often wonder if being passionate about things or people in our lives are what help us to get past some of the weight of FMS/CFS? Since I took my sabbatical from dance, I've been feeling worse.... so I think it is clear that I need to go back, even if it's tough.I can be in the depths of despair, but when I sing through a few of my favorite, uplifting gospel choir songs..... suddenly my heart starts to look up again.And I know that if I didn't have my wonderful and adoring husband that my life would be a whole helluva lot more horrible than it is. He helps me laugh when I'm crying..... he helps me to experience Heaven on earth when I feel lousey ...... I am blessed... and I often think it has a great deal to do with how well I am able to still function.Without a doubt, there is a bonafide connection among body, mind, heart and soul. I think maybe Christopher Reeve is a terrific example of what someone can do when they have the will to live, the guts to try, and a whole lot of loving, caring giving people in their lives (money also helps...







)Even when the physical constraints are overwhelming.... positive thoughts, feelings, emotions and actions still have the ability to help temper the very worst.Evie


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## M&M (Jan 20, 2002)

I'm going to be completely candid and honest in this post. I really hope I don't offend, that is not my intent. (Susan, feel free to moderate me if you need to







) That being said, here goes:I get really tired of hearing people (especially people who have been diagnosed with CFS or FMS and should "know better") say that if you just think positively your symptoms will be less. I think the only people that really believe this are people who are not very limited by their physical symptoms. Not to say there is no mind/body connection, becuase there is a connection. But, I am a very positive person. I have a lot of things in my life I am passionate about. I have a wonderful relationship with Mr. M, and a lot of genuine, dear friends. This is all wonderfully helpful when it comes to my attitude. I very rarely feel depressed, and often feel blessed to be where I am in my life. I do not wallow in self-pity about being as ill as I am. So, there is the mind. Now on to the body. My body simply cannot do what your body does. If I tried to work as much as you for one day, and go to dance classes once, I would faint, and then be stuck in bed for several days. That physical response/symptom is not affected by what is in my mind. Take also your example of Superman. (he still is Superman in my book, ya know?) He does have a wonderful spirit that has not been broken by his trials. But, he is still a quadruplegic. His wonderful attitude and positive thinking does not get his body to work any better than it already does. To summarize, people whose symptoms are more severe, or more disabling, are not people who are bigger babies, bigger complainers, or more negative. They simply have more disabling symptoms, that refuse to go away or be controlled. Again, I'm not saying I feel there is NO mind/body connection, because I am convinced that there IS some sort of connection. What I am saying is that people who are more disabled are NOT necessarily more negative than those who are not disabled at all. I sincerely hope this does not sound rude, its rather late for me, and I've taken medicine that makes me sleepy. I apologize if it doesn't make sense, or offends anyone in any way.


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## Guest (Jul 12, 2003)

i read the article too. it made me cry. i don't have cfs or fm either GailSusan. but i guess just from having ibs i can sympathize with having a disease that controls your life and is chronic. but i had no idea fm/cfs was that bad. its so frustrating that they can't find the cure for this stuff. i just don't understand that. medicine certainly has a long way to go, doesn't it?essence tries and mrs mason--i think you guys are both right.


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## Guest (Jul 14, 2003)

MM.... I agree with much of what you posted... and in no way was I passing judgement on anyone. It's just that sometimes I marvel at my own body's ability to bounce back when my head is in the right place. But yes, every day I still awaken to the pain and fatigue... it's a given... and I may not have the same level of severity as you or someone else. Some days are bad and some days are not so bad. Once in a while I even have a good day. It's all very relative.I do know what it is to have to cave in.... sometimes the pain and fatigue are overwhelming and people in my real life sometimes think I am just not sociable when really I am just needing to sleep.Basically, when I am happy, I hurt less and feel less tired.I guess I posted with the intent of giving hope, but it seems to have backfired. Don't know what else to say about it except that I am sorry if anyone took offense at it. I am not judging anyone... just posting what helps me in my distress... that's all. I also thank my lucky stars that I can function as well as I do, given my diagnoses, which, I have been told, preclude most people from leading the kind of life that I do.Please don't be angry with me for finding a way to fight off this illness and be the best that I can be.One day, I may also be filing for disability... and I think in another thread I congratulated you on being able to get yours. I DO understand... maybe more than you know.To summarize, when I know that there can be hope, I want to talk about it so that others might also be encouraged even when the going is tough.I've also learned that not getting angry is far better for my FMS/CFS/IBS/Dyslimbia/Clinical depression/Generalized Anxiety Disorder as well as all of this GAS !!! ....














 I sympathize with you, I wish you the best, and hope you're not upset with me for posting what works for me at my level of distress?Smiling helps my hurt. I am sorry that you are in so much distress. It may be that my life circumstances are more conducive to being better able to fen off this disease? I'm not rich in material wealth, but I AM very rich in immediate caring family, friends, co-workers, dance & choir commarades. What and who we have to live with can have a huge impact on how well we deal with our illnesses.Evie


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## M&M (Jan 20, 2002)

I'm not distressed at all. I just think it's important for people to receive accurate information about these diseases. I think it's important for people to know they are physical diseases, not mental conditions that can be cured by positive thinking. There is already such a stigma on these diseases, there are already so many people that think they are psychosomatic, that those of us who are affected by them (in my opinion) have the obligation to clear up those misconceptions. I'm not offended, mad or distressed in anyway. I just wanted to clear up the issue, and provide accurate medical information, about physcial disorders. That's it.


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## GailSusan (Dec 23, 2000)

MrsMason, thank you for letting me know Laura will be on 20/20 on July 18, I will definitely try to see that program. Evie, I think there is CFS and then there is CFS. You really need to read the article to see what this woman went through. She was not able to work or even leave her bed for years. We can sometimes have the same diagnosis, but be worlds apart in terms of our experience of it. I remember when I was housebound with IBS and people on the BB were saying, "Oh, just get on with it and live your life." I was doubled over in pain 24/7. How exactly do you "get on with your life" under those conditions. The truth is that most people on this BB have a moderate level of severity with IBS, but very few have experienced what I went through. In fact, my case was the first one to convince the FDA that IBS could be totally disabling and they granted me emergency use of Zelnorm almost a year before the public was able to get it. If it hadn't been for the Zelnorm, I wouldn't be alive today.This isn't meant to put down positive thoughts, Evie. I believe that a well-disciplined mind is critical to happiness and can overcome many physical problems due to the mind-body connection, but sometimes I do get frustrated with the folks on this BB who push positive thinking with people who are so clearly in the severe category and there are quite a few people like that. Some of them are not as kind or empathetic as you.


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## Wes and Tracy (Apr 14, 1999)

Not trying to stir the pot I swear but...I have a number of doctor friends that I bowl with and we've discussed CFS and their general opinion (and I'm only going by what they said and what they feel the medical community at whole thinks) is that CFS is a made up disease.Before everyones panties catch fire let me explain. They said that those with CSF who respond well to anti depression meds or anti anxiety meds probably don't have CFS but in fact have depression. Those who have severly afflicted physical ailments probably have something more serious going on but don't get properly diagnosed because they've been labelled as having CFS. And then they said the majority of those who suffer from CFS actually suffer from a negligent lifestyle, poor diet, poor exercise, (smoking, drinking, drugs, other medications, etc.).So, to sum up, I'm not saying that the individual is making up their claim to CFS, what I'm saying is that doctors feel that the title CFS is being used to catch and improperly assign a condition to a person.FWIWWes


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## Guest (Jul 14, 2003)

Wes, it isn't a made-up disease any more than multiple sclerosis or lupus isn't a made-up disease.I'm glad that you didn't take offense at what I posted MM.Appreciate the clarifications, Gail.I've read about and talked in real time with other FMS/CFS victims. We have a local support group here. Some are better off than me and others are worse off than me.I just do what I need to do for me, which entails a monumental daily struggle to attempt to think positively. And when I'm able to think positively, I always feel better. It's sorta like the "placebo effect" perhaps? Not sure. Just know that if I didn't do this, there would be days I would not go to work or to dance or anything else.I have a sister who is now barely alive with multiple sclerosis, so I do understand that these illnesses are not made up. I've read there may even be a connection among some of these autoimmune diseases.Anyway.... good wishes to allEvie


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## Wes and Tracy (Apr 14, 1999)

Who said anything about MS? Who said anything about lupus, don't get your panties in a knot, I'm just repeating what I overheard. The only reason I'm even on this board is because Tracy's sister in law has FM and I'm doing some research for her, I'm not here to stick a pin in ya. Wes


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## Susan Purry (Nov 6, 2001)

Wes, you make an excellent point, but reach the wrong conclusion (that CFS is a 'made-up' disease), in my opinion. I think it would be useful to remind ourselves of some facts. There exists 
chronic fatigue - people who are chronically tired, but do not have CFS.
Chronic Fatigue Syndrome - the case definition in the US means that this can include people with psychiatric disease.
Myalgic Encephalomyopathy/CFS - this case definition is what CFS 'really' is IMHO. Symptoms are not iatrogenic or due to psychiatric disease or lifestyle factors.


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## M&M (Jan 20, 2002)

Wes, I don't know why you felt the need to come here and post that. It is obvious you know nothing about CFIDS or FMS. Sad really. You know most doctors say the same thing about IBS - that its a manifestation of depression, or that its psychological - not a "real" disaese. And, not so many years ago doctors said the same thing about diabetes. If you want to research the disease, talk to specialists. I don't know what more to say to you than that. You go ahead and think what you want, but don't come here and tell us we're all wackos. That was really rude and heartless. I'm glad I don't have to count on you to be my support system.


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## GailSusan (Dec 23, 2000)

Wes, When doctors can't diagnose an illness, they don't say, "Geez, I can't figure this one out", instead they say "it's all in your head" and send you off to a psychiatrist. Perhaps if your doctor friends spent more time reading their medical journals and less time on the golf course or socializing with you, then they would have a better understanding of CFS and be able to differentiate between the catch all diagnostic basket called CFS and the specific Myalgic Encephalomyopathy/CFS diagnosis that Susan is referring to. Shame on them for not knowing the difference!


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## moldie (Sep 25, 1999)

In defense of Evie this time, I believe she did not get her "panties in a knot." She answered in a very controlled and reserved manner.In defense of Wes, he is only repeating what the doctors relayed to him. It is probably true that doctors will sometimes put the label of CFS on someone when they can't find the cause. Does that mean that there is no such thing as CFS? Not really. It just means that some people can be treated for something else and end up responding and they then no longer have symptoms of CFS as they did before. This would indicate that they may never really have had "true" CFS as Susan mentioned in the first place.As far as "lifestyle" goes, it may be a factor of the stress that brings a response in the immune system triggering the condition - perhaps even something that was dormant in the body. When they use "lifestyle" it tends to sound like it is putting blame on the patient for not "behaving" properly. Sometimes people are forced to work to hard on their jobs or suffer the stresses of accidents or life factors they have little control over. Sometimes they have trusted their doctors in prescribing the correct medication and care that their body responds negatively to. The name "Chronic Fatigue Syndrome" is sort of a non-specific label like "Irritable Bowel Syndrome" in the first place. The doctors/scientists do not know the cause, so they cannot be more "specific" in naming it. They didn't know what caused stomach ulcers or asthma and labeled them as conditions of the mind. The stressors ended up not being mental stress, but actually a bacterial infection in the case of ulcers, and environmental allergins or pollutants in the case of asthma. CFS is also thought to be do to a virus. Some day the truth will emerge. I am confident of that. There are just too many coincidences and evidence of an immune system response disorder. M.


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## Clair (Sep 16, 2000)

In some ways I can sort of see where Wes is coming from - the title 'CFS: chronic fatigue syndrome' has been utilised by the medical profession to cover a multitude of 'syndromes' where they can't find any evidence of organic disease and whereby fatigue is one of the predominant symptoms.Dr Charles Shepherd (ex-Medical Director ME Association in Britain) comments that only around 70% of those diagnosed with CFS/ME are correctly diagnosed, the other 30% of those labelled CFS/ME are made up of incorrect diagnoses, psychiatric disroders, and over lapping medical conditions.So unfortunately the sub-group that I belong to (which Susan identifies as the CFS/Myalgic Encephalomyelitis group) gets lumped into a medical diagnosis alongside what essentially maybe something completely different.However, the sub-group CFS/Myalgic Emcephalomyelitis sufferers are those who have had 'lifestyle' factors and 'psychiatric disorders' ruled out in their extension testing en-route to diagnosis - that is where the difference lies.This sub-group do not just hav 'fatigue' as their predominant symptom - they have a whole list of other symptoms as long as the arm - which have just as much impact on their lives as the fatigue if not more - and which cannot be explained by 'lifestyle' factors.I've probably explained myself very badly indeed, brain fog







but what i'm saying is that the catch all title CFS isnt helping anyone least of all the 'ME' sub-group.


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## ezarek1 (May 12, 2003)

Does anyone know where or how I can find a copy of this article online??


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## GailSusan (Dec 23, 2000)

Elise, I don't think you can get it online, unfortunately.


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## Guest (Jul 15, 2003)

Well, I have BOTH.... I have FMS/CFS and I also have behavioral health issues. I can't say they are completely independent of each other because when I am in the most pain and feeling the most fatigued, I can be very difficult to get along with. And it isn't that I am a snobby person, it's that I feel like total #### and need to do what I need to do to feel better. I move a lot... sometimes I even squirm... because the pain and discomfort is awful.... especially in my hips.But there are also times when I can be depressed while the CFS/FMS appears to be regressing.Wes... if I had really gotten upset with you, then you could start talking about my underwear... but I think I was pretty nice to you in consideration of what you said ... don't you? I don't let just any guy comment on my underwear ya know...







And M.S. and Lupus are "sisters" to CFS/FMS according to what I've read. I believe one day they will be globally linked.I don't enjoy reading articles about horrible things. My emotions get all twisted and I do better if I dwell on the positive.Maybe I am in denial? I have so many things wrong with me that if I stop to think about them too often or too deeply.... I lose what spirit is remaining.I've decided to go back to dance in August. It won't be easy and I'll never be able to do what the others do... but I will give it what I can... and enjoy it for as long as I can. I have this horrible fear that if I once give up.... I'll be a goner. So.... blessings on all.... and in appreciation of all the levels of severity of FMS/CFS.... I want to post that I consider myself lucky to be able to function as well as I do... I'm not sure how long it will last... so I intend to do the best that I can for as long as I can. I promised my sister I would do this.E*


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## kel1059 (Feb 28, 2003)

> quote:They didn't know what caused stomach ulcers or asthma and labeled them as conditions of the mind. The stressors ended up not being mental stress, but actually a bacterial infection in the case of ulcers, and environmental allergins or pollutants in the case of asthma. CFS is also thought to be do to a virus. Some day the truth will emerge. I am confident of that. There are just too many coincidences and evidence of an immune system response disorder.


This pretty much says it all!!!I know that there is some logical explanation behind CFIDS. I don't care what anyone says. i know it is a very real condition with devastating consequences. I also know that it can be near impossible to think positively when you are in the throes of severe (or even moderate) depression or anxiety.i wonder what would happen if patients had every last scrap of mercury removed from their body (not counting the 0.3mcg/day that non-fish eaters take in daily)(for fish eaters multiply that by 8)Also, if antifungals were used in the same fashion as Dr Carol Jessop used on her patients which resulted in some startling results....and, if intestinal flora were to be completely optimized, and mycoplasma, micoplasma, and mycobacterium could be eliminated or driven to the brink of eradication....and each patient were to be placed on a specific (and indivualized) highly nutrient dense diet....all intolerances, hypersensitivities, and other "loads" to the immune system were identified and dramatically lessened to give the immune system a chance to recover.


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## Susan Purry (Nov 6, 2001)

Gail, it was sweet of you to make your original post.


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## Feisty (Aug 14, 2000)

Gail, thanks for posting this. I'm going to try to remember to watch 20/20 on July 18th also. We all have different levels of FM/CFS including IBS in different levels. Every person is different. What one can do or tolerate, the next may not be able to or simply cannot.Mrs. Mason---thank you for your responses. I back you 100%!SusanP--Thanks for stating that!Evie---I'm so glad you have found what works best for you. Kel---You just may be on to something there!Moulage and Claire---You are both right.Thanks for posting this Gail!


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## M&M (Jan 20, 2002)

Thanks for redirecting this thread y'all. In all the commotion I forgot to thank Gail Susan myself. Thank you so much for posting this. Your words were very thoughtful and kind. I really appreciate it!


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## Wes and Tracy (Apr 14, 1999)

I think I understand how Tim and Norb got started. They were originally nice guys, just trying to help and participate in conversation, then some ultra sensitive individuals kept changing their words around and blaming them for some implied meaning that never existed in their posts and eventually they quit trying to explain themselves and decided to just be the mean jerks people wanted to make them. It's sad that people can't read two paragraphs of common english and understand the words on the screen. Maybe it's a side effect of the illness.I didn't call anyone a whakoI wasn't rudeI wasn't heartlessyou don't have to worry about counting on my supportI never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.I never said CFS was made up.Can you all repeat after me.I never said CFS was made up.I just relayed what a couple of bowling doctors mentioned one thursday night, big whoopdido! They said similiar things about depression, but I better not mention that or else I'll be labelling every depressed person a whako.


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## Ian (Apr 18, 1999)

How do you have '"psychatric disorders" ruled out in their extension testing en-route to diagnosis'?Do you complete a 20 point questionaire from your GP?Do you see a psychiatrist for 60 minutes?Do you take an anti-depressant for 3 months to see if it does any good?Do you undergo therapy for 6 years to see if it does any good?None of the above?!Ian


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## moldie (Sep 25, 1999)

I think it was just a misunderstanding Wes. I would say that some on both sides are being a little too sensitive here.We all have heard this from various doctors before and it tends to put one on the defensive when it is brought up that doctors discount your symptoms as coming from some kind of "made-up" disorder without even caring to take it any further than that. Other than the suggestion that: "You might consider seeing a psychiatrist," they don't offer any other possibility. Patients "don't get properly diagnosed" because most doctors just shrug their shoulders and leave it at that. They are discouraged from doing lab tests and from referring you to someone who might be of further help by the healthcare system itself. Also, when a lot of the medical communtiy has labled CFS as having no definitive explanation, there really is no motivation to pursue it further.I have just accepted that there is nothing they can do because they don't know what causes it. Therefore, since I was first diagnosed and realized this, I have not gone back for any Fibromyalgia care in about ten years. I have learned to deal with it the best I can with exercise, a little help with an over-the-counter aid for sleep in the form of benadryl, and a balance of Calcium and Magnesium for my IBS, along with watching my diet.People with Anxiety and Depression can suffer from other ailments like IBS, CFS, heart disease, diabetes, etc. too. Many with depression and anxiety do have sleep problems and when they are treated with anti-anxiety, anti-depressive drugs, they may improve to the point where they no longer feel the symptoms associated with some of these conditions. However, this is not always the case. Some people with heart disease, diabetes, IBS and CFS, etc. suffer from anxiety and depression after the onset of their physical illness because of their loss of health, job, spouse, etc... In both of these mentioned categories, doctors may see these same patients come in with complaints over and over. They may finally label them as needing psyhcological help. They have been through all the meds which eventually causes side-effects and there is nothing more they can do for them. Then the next person that doctor sees that comes in with the diagnosis of CFS or FMS might get labeled too as a "headcase" without even further analysis. The doctor has seen it before, and doesn't want to go through it again. The statement: "they said the majority of those who suffer from CFS actually suffer from a negligent lifestyle, poor diet, poor exercise, (smoking, drinking, drugs, other medications, etc.), as I indicated, places blame on the patient and labels them as not caring about their health anyway, so why should they bother with them. It's really not fair. We would rather hear from them the truth, like: "We don't know what causes CFS/FMS symptoms. We can give you some drugs to help combat some of the symptoms and offer you some preventive exercises and lifestyle changes that might be helpful, but there is really no cure. It may go into remission for awhile, but you may find that stress in your life might cause it to flare-up again." That, at least, does not discount what changes in the body the patient is experiencing.I didn't even know that this condition existed before I was diagnosed with it, but I knew that what I was experiencing was not normal for me. There were a series of little things that should have been clues had I known the symptoms of this disorder. Then, when I finally saw a lot of the same ones that I had on the list, it was: "yeah, that's got to be it!" Why would they have this list and label it as FMS if it wasn't a defined disorder? I had no history of depression or anxiety, and I don't feel I have either of these now. Drugs for these conditions proved not to be helpful at all for me, but rather I was worse off on them. Thank goodness, there are some doctors out there that understand CFS/FMS to be real illnesses. Just because they don't have definitive answers to CFS, FMS, or IBS, doesn't mean that they aren't real conditions with real problems. M.P.S. Evie, I like your attitude. Keep up the dancing as long as you can







I often thought of this condition as being like a mild case of MS or lupus. Like Feisty said, we all do have different pain tolerances, and different levels of this illness. We just have to do the best we can with what we have. Thanks for your inputs too, Clair, Gail, and kel.I wish Tracy's sister-in-law well, Wes. How nice it is for you to help her out. Tell her to stop by if she gets a chance.M.


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## Guest (Jul 16, 2003)

Moulage.... it sure beats crying.....And thanx, Feisty... for being supportive... that means a lot to me.....  And MrsMason.... believe it or not... I am in your corner too.Gail... I guess in all the commotion I forgot to thank you as well.Wes...... If you don't suffer from it, it's difficult to understand the agony.... which can be completely and totally independent of depression. I know you mean well, but it isn't about people overreacting... it's more about people being a bit on the insensitive side, I think? Hey..... I let you play with my underwear... what more do you want?????







Evie


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## Wes and Tracy (Apr 14, 1999)

> quote: I wish Tracy's sister-in-law well, Wes. How nice it is for you to help her out. Tell her to stop by if she gets a chance.


She also has lupus due to some leaky breast implants she had years ago that they ended up having to remove. I dont' know all the details but there was a lawsuit and a settlement and a new set of boobs. Evie said lupus was connected to CFS so there might be something to that in this situation.


> quote: Wes...... If you don't suffer from it, it's difficult to understand the agony.... which can be completely and totally independent of depression. I know you mean well, but it isn't about people overreacting... it's more about people being a bit on the insensitive side, I think?


Evie, you all of all people know better then to accuse me of being sensitive.







I've not been either sensitive or insensitive, in fact I've not given my opinion at all. Wes


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## Clair (Sep 16, 2000)

IanI think your being a little critical of what I have said here, but lets take it on faith here that medically trained professionals have some ability to tell the difference between a psychiatric illness and a physical illness....and yes in some cases ME/CFS sufferers have undergone some of what you mention to no avail. Bear in mind most CFS/ME sufferers usually have been through at least 2 years of extensive medical examination before they are ever diagnosed...it is a diagnosis of exclusion everything else is ruled out first...as with illnesses such as IBS...where the test you for Colitis, Crohns, Coeliacs, Diabetes etc.It is a matter of time before medicine unravels the truth concerning CFS/ME as it did with illnesses such as Mutliple Schlerosis which 30-40 years ago was labelled as 'all in your head'..so I think one has to be careful about what you think you know and what you actually know.I do believe that CFS/ME sufferers like the rest of the population can suffer from psychiatric illness, I'm just saying be careful not to label ME/CFS as a psychiatric illness unless you of course have conclusive irrevocable proof that it is....


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## Ian (Apr 18, 1999)

Clair,I was certainly not being critical of what you had said.Rather, a criticism of the means by which GPs & consultants come to their conclusions - but a criticism that doesn't rest totally with the GPs either.What I'm saying is that I believe it's very difficult to neatly separate CFS, or whatever label you wish to give it, from psychiatric 'disturbances', be they depression, anxiety or the mental response to long term stressors. In my case, I certainly don't feel the many GPs, specialists & consultants I've seen over the last 8 years could give me a conclusive answer as to whether it was 'all in the head' or, as a specialist unit 'confirmed' CFS.In fact I've come to the conclusion that for me - and it may be very different for you and others - sypmtoms & causes, physical and psychological, overlap like some venn (sp?) diagram.Regarding colitis, crohns etc, these conditions can be empirically proven. I guess we'll reach that stage with CFS,IBS, depression, etc when conclusive tests, brain scans or whatever new diognostic tools are developed become available.Ian


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## moldie (Sep 25, 1999)

"Maybe it's a side effect of the illness."I guess there might be some bit of truth to that Wes. There does seem to be a problem with hormonal changes in this illness too. Also, when you are feeling pain nearly every single day of your life and watching your health problems affect your job and lifestyle, it tends to be a little disheartening. It will make you down right crabby if you let it. Really you guys 'n gals here, I know Wes, and Wes is not really insensitive. He can be very sweet and helpful. He tells it like it is sometimes, but he was just relaying what was told to him. Don't kill the messenger. He is really trying to help his wife's sister-in-law.It certainly sounds like her immune-system is all out of wack, Wes. When it is trying to fend off allergens, it can be very hard on the body. It is just like fighting off an illness. When you have the flu, your body gets very tired. It doesn't want to perform like when it is healthy. I hope the docs find something that will help her soon.Regards,M.


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## Clair (Sep 16, 2000)

IanMaybe the experience of CFS is dependant upon which sub-group you belong to...I link my health problems back to when I had glandular fever 12 years ago and have not been 'normal' since..so for me there as always a clear infection/virus trigger so I guess I never thought of my CFS/ME as anything other than a physical illness.But your right its very difficult to seperate out mind and body as they do relate and effect each other...and illness such as depression can co-exist with CFS.I personally don't feel depressed at all, sure I get the days when I get frustrated with my 'disabilities' but mostly I realise I'm a fairly lucky person...and thats why I don't subscribe to the 'psychiatric illness' label that some medical professionals stick on CFS/ME.


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## Guest (Jul 17, 2003)

How about a hug, Wes? It'll make us all feel better....







I don't like it either when people are labeled as "psyche patients" just because the doc doesn't know enough about a disease/disorder to make an accurate diagnosis. This happened to me for years and years and years. I now know the truth... which is... I am very physically sick... and it affects my behavioral health. And as a natural course of things, I've learned to be much more assertive with my healthcare givers.... and if they don't like it, they can mount my finger....







We're all different... all individual... and I do what I need to do to help alleviate my symptoms... and that includes dancing, singing and relaxing...(the hypno is remarkable).I understand that some can't dance (or sing, for that matter....







).... but we all do what we need to do for ourselves... and that's the best that any of us can do.Personally (and this only applies to me).... if I lose heart.... I get sicker physically. So I need to do everything in my power to find that heart and *Spirit again.I don't post my "accomplishments" to make myself appear better than I actually am. I struggle valiantly. And I DO understand and appreciate that some are totally unable to do ANY of the things that I do to temper my symptoms.Some days my efforts are rewarded... other days, I resort to my bed.I post to give hope.... which is the same thing I do when I present dance and when I sing in Gospel Choir concert.I have so many things wrong with me that I am literally frightened to think about them anymore... so I just keep on keepin' on... and try my best to not let it all get me down.Peace to all..... especially you, MrsMason... I do feel a great deal of sympathy for you... and I wish things could be better for you... but I am very glad that you won your case and I salute you for your efforts !!and Wes.... you're a loveable creature with a few rough edges but I won't throw you to the wolves if you'll wash 'n press my undies and give 'em back to me.....







Love, Evie


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## Clair (Sep 16, 2000)

Evie,Your a total inspiration!







I love your positive attitude in the face of all the adversity!I try to adopt a similar approach...try to enjoy the litle things and marvel at the small victories....only I can't dance because I have the co-ordination of a drunk wilderbeest and the grace of a dizzy elephant!


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## Guest (Jul 18, 2003)

Clair... I'll bet there are lots of things that you can do...... that I probably can't do....that help you to feel better... so why not share them with us?.... and maybe it will give even more people a bit of hope when everything seems so painful, fatiguing and dark.I used to get upset when people would target me because I posted what worked for me...mostly because I couldn't understand why others didn't see things the same way.... but I've developed enough self-respect and self-esteem that I can now get past that.... and if anything, I now have great empathy for them.A huge factor in my "success" in living with some of this #### has been the hypno. I also have to credit CBT with helping me to think things through on a more positive basis. The fact that I keep moving...may have something beneficial to do with it... cuz once I stop, I get so stiff and sore and achey (to the tune of excrutiating) that I can hardly breathe !No... this does not mean that everyone can pull themselves out of the distress by moving or doing any of the things that I do. It works for me, that's all. Some day, I may be the one standing in line to file for disability. But until that day comes.... I am going to dance....







"drunk wilderbeest or dizzy elephant" ???Gosh... I really wanna see that.............







Evie


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## Clair (Sep 16, 2000)

Evielet me think...what do I do....I live in the coutryside so I like to take leisurely walks with my dog and listen to the birds and insects singing in the summer air, I like to observe the flowers and plants in the hedgerows growing. Having a dog has been a lifesaver for me, on my darkest days he has been my reason for struggling on...he presents himself ready for his walk as regular as clockwork and with his big beautiful brown eys pleading it is so hard to say 'no I cant take you out'...when I pull on my trainers he gets so excited its touching to see.And on days when I have been upset he has rushed to his toy box and pulled out a soft toy and run to see me....he lays on my bed next to me when I take an afternoon nap and gives dirty looks to anyone who raises their voice at me...he is my old faithful protector, he drives me mad with his antics but he gives me purpose.I would say to anyone with ME/CFS/Fibro to get a pet they can be extremely rewarding and they dont bear a grudge if you can't get out of bed or your too tired to go out


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## celticlady (Aug 6, 2001)

Wes,ya know i agree with you on most things,and you are a nice guy,but the info you got is just WRONG,WRONG,WRONG!If you were to live in my body for a mere 24 hrs when I am having my worst symptoms,you would know what I mean.Or,if Tracy were to have CFS or fibro or CMP(chronic myofascial pain) or any combo of the above,and you had to see your usually very capable wife reduced to a bedridden,painful mess of pain,muschle spasms,fibrofog,etc.She would be unable at times to care for your baby girl. You would certainly know that what you heard is a bunch of b*ll****.It is hard for "normies" to even imagine the #### we go thru on a daily basis,with an "invisible illness".Please, would you take my suggestion and go to fibrohugs.com and get some ACCURATE INFORMATION.Thanks for listening.RespectfullyCeltic


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## celticlady (Aug 6, 2001)

OOPs,its fibrohugs.org,not com.An excellent source of ACCURATE info/


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## kel1059 (Feb 28, 2003)

Clair,What you wrote about your dog was beautiful. It was like reading something from a professional writer. The imagery that it set off was so vivid. As I was reading it, I saw everything in my head.Thanks.


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## moldie (Sep 25, 1999)

To repeat just a little here so that there are no hard feelings on either side; Wes did not come to any conclusions and has said that he didn't say it was a made-up condition. His origingal post says: "They said...." and ends with this summation: "So, to sum up, I'm not saying that the individual is making up their claim to CFS, what I'm saying is that doctors feel that the title CFS is being used to catch and improperly assign a condition to a person."He is trying to do research for his wife's sister-in-law and get a feeling for what it is she faces/will face. He came here to be of help to his family. If you want to get irritated with anyone, get irritated with the doctors he talked with.I am sorry for the confusion and frustration on both sides.Okay, I just realized I missed the program! Did anyone see it? Tell us about it please.


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## Guest (Jul 20, 2003)

I love my pets, too, Clair..... they can be so soothing and helpful even during the worst stress.Thanx for that  Evie


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## GailSusan (Dec 23, 2000)

> quote: Laura was interviewed by Bob Brown of ABC's 20/20 for a segment scheduled to air on July 18


Thank you MrsMason for letting us know about this. Did anyone see it? It was mostly about Seabiscuit -- the book and the movie -- but Laura did talk about her health problems. She looks so young and hip and slender, but in her face, you can see that she has gone through a lot. She still spends much of her time in bed. I hope with all the money from her book and the movie that she will be able to get some kind of help for her condition.


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## Susan Purry (Nov 6, 2001)

Here's the New Yorker article for those that couldn't get a hard copy. It was posted to the Co-Cure email list (www.co-cure.org).


> quote:A Sudden Illness -- How My Life ChangedBy Laura Hillenbrand, author of 'Seabiscuit: An American Legend'We were in Linc's car, an aging yellow Mercedes sedan, big and steady, withslippery blond seats and a deep, strumming idle. Lincoln called it Dr.Diesel. It was a Sunday night, March 22, 1987, nine-thirty. Rural Ohio was asmooth continuity of silence and darkness, except for a faintly golden seamwhere land met sky ahead, promising light and people and sound just beyondthe tree line.We were on our way back to Kenyon College after spring break. Linc, my bestfriend, was driving, his arm easy over the wheel. My boyfriend, Borden, satbehind him. I rode shotgun, a rose from Borden on my lap. Slung over my armwas a 1940s taffeta ball gown I had bought for $20 at a thrift shop. I was19.The conversation had dropped off. I was making plans for the dress and formy coming junior year abroad at the University of Edinburgh. My eyes strayedalong the right shoulder of the road: a white mailbox, the timid glint of anabandoned pick-up's tail-light. The pavement racing under the car wasgunmetal gray. We were doing 50 mph or so. A balled-up bag from adrive-through burger joint bumped against my ankle.A deer.At first, he was only a suggestion of an animal, emerging from the darknessby degrees: a muzzle, a sharp left eye. Then the headlights grasped him.He was massive -- a web of antlers over his head, a heavy barrel, roundhaunches lifting him from the downward slope of the highway apron. Briefly,his forehooves rested on the line between the shoulder and the highway. Isaw his knee bending, the hoof lifting: he was stepping into the car's path.In the instant that I spent waiting for the deer to roll up over the car'shood and crash through the windshield I was aware of my body warm in theseat, Linc's face lit by the dash, Borden breathing in the back, the coolsulfur glow of the car's interior, the salty smell of the burger bag. Iwatched the deer's knee and waited for it to straighten. I drew a sharpbreath.The bumper missed the deer's chest by an inch, maybe two. The animal'smuzzle passed so close that I could see the swirl of hair around hisnostrils. Then he was gone behind us.I blinked at the road. My eyes caught something else. A brilliant lightappeared through the top of the windshield and arced straight ahead of thecar at terrific speed. It was a meteor. It burned through the rising lightof the horizon and vanished in the black place above the road and below thesky.My breath escaped in a rush. I turned toward Linc to share my amazement. Hewas as loose as he had been, his eyes slowly panning the road, his long bodyunfolding over the seat. I looked back at Borden and could just make out hisface. They had seen nothing.I was about to speak when an intense wave of nausea surged through me. Thesmell from the bag on the floor was suddenly sickening. I wrapped my armsover my stomach and slid down in my seat. By the time we reached campus,half an hour later, I was doubled over, burning hot, and racked with chills.Borden called the campus paramedics. They hovered in the doorway, pronouncedit food poisoning, and left.I fell asleep sitting up on my bed, leaning against Borden's shoulder. Inthe morning, my stomach seethed. I walked to the dining hall and sat withLinc, unable to eat. In my history seminar, I drank from a water bottle andtried to concentrate. After class, I walked to my apartment and heated someoatmeal. I swallowed a spoonful; nausea rose in my throat and I pushed thebowl away.In the next few days, everything I ate made my abdomen balloon. I radiatedheat, and my joints and muscles felt bruised. Every day on the way toclasses, I struggled a little harder to make it up the hill behind myapartment. Eventually, I began stopping halfway to rest against the trunk ofa tree.One morning, I woke to find my limbs leaden. I tried to sit up but couldn't.I lay in bed, listening to my apartment-mates move through their morningroutines. It was two hours before I could stand. On the walk to thebathroom, I had to drag my shoulder along the wall to stay upright. Lincdrove me to the campus physician, who ran test after test but couldn't findthe cause of my illness. After three weeks of being stranded in my room, Ihad no choice but to drop out of college. I called my sister and asked ifshe could drive me home to Maryland.I sat in the doorway of the apartment while Borden and Linc packed mysister's car. As they pushed the last of my belongings into the back seat, adownpour broke over them. We pulled out, and Kenyon was lost in a fallinggrayness. I turned to wave to Borden and Linc, but I couldn't see themanymore.My mother's house was a dignified Colonial that sat back from the road,behind a pine tree that had been mostly denuded by Hurricane Agnes and ananemic cherry tree that would soon collapse onto the den. In the back yardstood a hemlock that had been missing its upper third since my brother and Iaccidentally set it on fire. Inside, the house was a warren of small roomsthat had suited our two-parent, four-kid, two-Collie family when my parentsbought it, in 1971. My father had walked out in 1977, the elder collie haddied three days later, and the house had gradually emptied until mydeparture for Kenyon, which had left only my mother and my cat, Fangfoss.The sun was setting as we pulled up to the back door. I walked upstairs andlay down in my childhood bedroom, which overlooked the back yard and thecharred tree. The next morning, I stepped on a scale. I had lost 20 pounds.The lymph nodes on my neck and under my arms and collarbones were painfullyswollen. During the day, I rattled with chills, but at night I soaked myclothes in sweat. I felt unsteady, as if the ground were swaying. My throatwas inflamed and raw. A walk to the mailbox on the corner left me so tiredthat I had to lie down.Sometimes I'd look at words or pictures but see only meaningless shapes. I'dstare at clocks and not understand what the positions of the hands meant.Words from different parts of a page appeared to be grouped together inbizarre sentences: 'Endangered Condors Charged in Shotgun Killing.' Inconversation, I'd think of one word but say something completely unrelated:'hotel' became 'plankton'; 'cup' came out 'elastic.' I couldn't hang on to athought long enough to carry it through a sentence. When I tried to crossthe street, the motion of the cars became so disorienting that I couldn'tmove. I was at a sensory distance from the world, as if I were wrapped inclear plastic.I had never been in poor health and didn't have an internist, so I went tomy old pediatrician. I sat in a child's chair in a waiting room wallpaperedwith jungle scenes, watching a boy dismember an action figure. When mydoctor drew the thermometer from my mouth, he asked me if I knew that mytemperature was 101. He swabbed my throat, left for a few minutes, andreturned with the news that I had strep throat. Puzzled by the othersymptoms, he prescribed antibiotics and suggested that I see an internist.The doctor I found waved me into a chair and began asking questions andmaking notes, pausing to rake his fingers through a hedge of dark hair thatdrifted onto his brow. He ran some tests and found nothing amiss. He told meto take antacids. A few weeks later, when I returned and told him that I wasgetting worse, he sat me down. My problem, he said gravely, was not in mybody but in my mind; the test results proved it. He told me to see apsychiatrist.I went to Dr. Charles Troshinsky, a respected psychiatrist whom I had seenwhen I was fifteen, after my high school boyfriend had died suddenly. He wasshocked at how thin I was. I was just under five feet five, but my weighthad dropped to a hundred pounds. Dr. Troshinsky said that he had seenseveral people with the same constellation of symptoms, all referred byphysicians who dismissed them as mentally ill. He wrote my internist aletter stating that he would stake his reputation on his conclusion that Iwas mentally healthy but suffering from a serious physical illness.'Find another psychiatrist,' my internist said over the phone, a smile inhis voice. How did he explain the fevers, chills, exhaustion, swollen lymphnodes, dizziness? What I was going through, he suggested, was puberty. I hadjust turned 20. 'Laura, everyone goes through this,' he said with thedrizzly slowness one uses with a toddler. 'It's a normal adjustment toadulthood. You'll grow out of it in a few years.' He told me to come back insix months.'But I'm not happy with my treatment,' I said.He laughed. 'Well, I am.'I called his secretary and asked for my medical records. I sat on my bedroomfloor and flipped through the doctor's notes. Couldn't handle school, he hadwritten. Dropped out.My next doctor was a plump, pink man with the indiscriminate gaiety of agolden retriever. He was halfway through a hair transplant, and clumps ofhair were lined up in neat rows on his scalp, like spring seedlings.I again tested positive for strep, and he renewed the antibiotics. He ran ablood test for a virus called Epstein-Barr and found a soaring titer, ameasurement of the antibody in my system. I had, he said with pep-rallyenthusiasm, something called Epstein-Barr virus syndrome. He had it, too, hesaid, but he had discovered nutritional-supplement pills that cured it.'Whenever I feel it coming on,' he said, 'I just take these.' He talkedabout how much skiing he could do.I took the supplements. They had no effect. Nor did the antibiotics; thestrep raged on. The doctor changed my prescription repeatedly, to no avail.At the end of one of my appointments, the doctor followed me into thewaiting room and asked my mother to make an appointment so that he couldtest her for strep. She said she felt fine, but he insisted that she mightbe infected but asymptomatic.Our appointments fell on the same day. I went in first and sat while a nurseswabbed my throat. A few minutes later, the doctor bounded in, waving thepositive-test swab, and bent over to look at my throat. I'd had strep fornearly three months. I dropped my face into my hands. He straightenedabruptly and backed out of the room, repeating that the pills would cure theEpstein-Barr. 'I go skiing a lot!' he hollered from down the hall.I was still crying as I paid the bill. The receptionist gave me asympathetic smile. She understood how I felt, she said, because she hadEpstein-Barr, too. 'It's amazing,' she said. 'The doctor has found thateveryone working here has it.'I sat down. Several other patients were sitting near me, and I asked if thedoctor had given any of them a diagnosis of Epstein-Barr. Each one said yes.While we were talking, my mother emerged from the doctor's office. He hadtold her that she, too, had Epstein-Barr.That year, millions of cicadas boiled up from the ground, teemed over treelimbs, and carpeted lawns and roads. The TV news showed people eating themon skewers. Cicadas burrowed into the house, scaled the curtains, swung fromour clothes. I sat in bed, watching them bounce off the windowpane andnosedive into the grass, where they flapped and floundered as if they weredrowning. Newton, the Dalmatian puppy my mother had adopted, zigzaggedaround the yard and snapped them out of the air. We called them flying dogsnacks.My world narrowed down to my bed and my window. I could no longer walk thelength of my street. My hair was starting to fall out. I hadn't had a periodin four months. My mouth and throat were pocked with dozens of bleedingsores and my temperature was spiking to a hundred and one every 12 hours,attended by a ferocious sweat; in addition to the strep, I now had trenchmouth, a rare infection of the gums. Sleeping on my side was uncomfortablebecause I had little body fat left and my bones pressed into the skin on myhips, knees, and shoulders.In sleep, I dreamed of vigorous motion. I had swum competitively for 10years, from age 7 to 17. I had been riding horses since childhood. Smittenwith thoroughbred racing, I had spent my mid-teens learning to rideshort-stirrup at a gallop, and praying that I wouldn't grow too tall tobecome a jockey. At Kenyon, I had been a tennis junkie. Now, as I lost thecapacity to move, sports took over my dream world. I won at swimming in theOlympics, out-pedalled the peloton in the Tour de France, skimmed over aracetrack on a Kentucky Derby winner. When I woke, I felt the weight ofillness on me before I opened my eyes.Most of the people around me stepped backward. Linc said my friends askedhim how I was, but after one or two get-well cards I stopped hearing fromthem. Now and then, I called people I had known in high school. Theconversations were awkward and halting, and I felt foolish. No one knew whatto say. Everyone had heard rumors that I was sick Someone had heard I hadAIDS. Another heard I was pregnant.I missed Borden. At Kenyon, I had often studied in a deli run by a groovyguy named Craig, who cruised around the place in fluorescent-yellowsunglasses. It was there, in September of 1986, that Borden had first smiledat me. He was a senior, with a gentle, handsome face and wavy black hair. Hehad torn up his knee running track, and to avoid walking he used a batteredbike to get around campus. The bike had no chain, so he could really ride itonly downhill wiggling it to keep it going when the ground levels out. Onthe uphills, he stabbed at the ground with his good leg, Fred Flintstonestyle. Eventually, some frat brothers kidnapped the bike and hung it from atree over the Scrotum Pole, a stone marker that had earned its nicknameduring a legendary fraternity vaulting incident.>From the day we met in the deli, Borden and I had been inseparable. Since Ileft Kenyon, he had sent me off-color postcards and silly drawings, mailedbetween papers and finals and graduation. I wrote dirty limericks and mailedthem back to him.That summer, he showed up at my door. He got a job as an assistant editor ata foreign-policy quarterly, moved in with my mother and me and took care ofme, making plans for the things we'd do when I got better.Of my friends, only Linc visited. Home for the summer in Chicago, he droveDr. Diesel fifteen hours to my house, where he would sit in a dilapidateddenim armchair at the foot of my bed. The seat on the chair had collapsed,but he sat there anyway, his long thighs pointing up at the ceiling. Eachtime he saw me after a long absence, a wide startled look would pass overhis face. He once said that he could sense the disease on me. I knew what hemeant. I was disappearing inside it.I saw my next physician only once. My jeans slid down my hips as I walkedinto the exam room, and he watched me tug them up. He asked how often Iweighed myself. Often, I replied.You shouldn't weigh yourself, he said, and you have to eat. I'm not dieting,I replied. Girls shouldn't be so thin, he said. I know, I don't want to bethis thin. Yes, yes, but girls shouldn't be so thin.After the appointment, I went to the bathroom, and as I opened the door toleave the doctor nearly fell into me. I was halfway home when I realizedthat he had been trying to hear if I was vomiting.The next doctor was a pretty, compact woman with a squirrelly brightness.She found that I still had strep and changed the antibiotics. She ran thesame tests that everyone else had run, and, again, the results were normal.I fought off the strep, but the other symptoms remained. I kept returning tosee this doctor, hoping she could find some way to make me feel better. Shecouldn't, and I could see that it was wearing on her.In September, I was so weak that on a ride over to her office I had to dropmy head to my knees to avoid passing out. When the nurse entered, I waslying down, holding my head, the room swimming around me. She took my bloodpressure: 70/50. The doctor came in. She wouldn't look at me.'I don't know why you keep coming here,' she said, her lips tight.I told her that I felt faint and asked about my blood pressure. She saidthat it was normal and left, saying nothing else. She then went to see mymother, who was in the waiting room. 'When is she going to realize that herproblems are all in her head?' the doctor said.I returned home, lay down, and tried to figure out what to do. Mypsychiatrist had found me to be mentally healthy, but my physicians hadconcluded that if my symptoms and the results of a few conventional testsdidn't fit a disease they knew of, my problem had to be psychological.Rather than admit that they didn't know what I had, they made a diagnosisthey weren't qualified to make.Without my physicians' support, it was almost impossible to find supportfrom others. People told me I was lazy and selfish. Someone lamented howunfortunate Borden was to have a girlfriend who demanded coddling. Some ofBorden's friends suggested that he was foolish and weak to stand by me. 'Thebest thing my parents ever did for my deadbeat brother,' a former professorof his told him, 'was to throw him out.' I was ashamed and angry andindescribably lonely.For seven months I had remained hopeful that I would find a way out of myillness, but the relentless decline of my body, my isolation, and thedismissal and derision I was experiencing took their toll. In the fall of1987, I sank into a profound depression. I stopped seeing my physician anddidn't try to find a new one. One afternoon, I dug through my mother'sdrawer and found a bottle of Valium that had been prescribed for backspasms. I poured the pills onto the bed and fingered them for an hour,pushing them into lines along the patterns on the quilt. I thought aboutBorden and couldn't put the pills in my mouth.I went back to Dr. Troshinsky. He told me to make an appointment with Dr.John G. Bardett, the chief of the Division of Infectious Diseases at JohnsHopkins University School of Medicine. Bardett was the foremost authority inhis field, Dr. Troshinsky said. If there were an answer, he would have it.At Johns Hopkins, after a lengthy exam and review of my records, Dr.Bartlett sat down with Borden and me. My internists, he said, were wrong. Mydisease was real.'You have Chronic Fatigue Syndrome,' he said. He explained that it was oneof the most frustrating illnesses he had encountered in his practice;presented with severely incapacitated patients, he could do very little tohelp them. He suspected that it was viral in origin, although he believedthat the Epstein-Barr virus was not involved; early lab tests had liked thevirus to Chronic Fatigue Syndrome, but subsequent research had demonstratedthat some patients had had no exposure to the virus. He could offer notreatment. Eventually, he said, some patients recovered on their own.'Some don't?''Some don't.'That night, for the first time since March, I didn't dream of being anathlete. I dreamed of being ill. In my dreams, I was never healthy again.In the ensuing months, I began to improve. I hitched Newton to a leash andshe tugged me through the neighborhood, first one block, then two, thenthree. My feet, soft from months in bed, blistered. The fever remained, butI was less prone to chills.In the fall of 1988, Borden began graduate studies in political philosophyat the University of Chicago, and I felt well enough to move there with him.>From the airport, we took a cab to Hyde Park, where Borden had rented aone-room apartment. The front door appeared to have been crowbarred forcriminal purposes at least once. Inside, there was a mattress splayed acrossplastic milk crates and a three-legged dresser propped up on a brick.Roaches skittered over the walls and across the floor. The bathtub washeaped with used kitty litter. A weeks-old hamburger sat on the stove,shrunken into a shape that resembled the head of a mummy. The roaches werein various attitudes of repose around it.We gave the mummy head a proper burial, roachproofed our toothbrushes bystoring them in the refrigerator, and tried to make ends meet on Borden's$9,000-a-year stipend and our savings. The apartment was four flights up,with no elevator, so most days I spent my time inside, reading about theFrench Revolution and listening to our neighbor throw things at her husband.I wanted to be useful but I wasn't strong enough for a conventional job. Theone thing I could still do, however, was write. Shortly after arriving inChicago, while watching a video of the 1988 Kentucky Derby, I had an ideafor an article on the impact of overcrowded fields on the race. I researchedand wrote the piece, then mailed it to an obscure racing magazine. I got ajob offer. Fifty dollars per story, no benefits. I took only assignmentsthat I could do from home and wrote them in bed. The magazine never paid me,but my bylines drew assignments at better publications, ultimately earningme regular work covering equine medicine and horse-industry issues at Equus.I was growing much stronger, but whenever I overextended myself my healthdisintegrated. One mistake could land me in bed for weeks, so the potentialcost of even the most trivial activities, from showering to walking to themailbox, had to be painstakingly considered. Sometimes I relapsed for noreason at all. Living in perpetual fear of collapse was stressful, but on mygood days I was functioning much better. By 1990, I could walk all over HydePark, navigate the stairs of the apartment with ease, and, for half an houron one blissful afternoon, ride a horse. Three years after becoming ill, Iwrote to Linc about the curious sensation of growing younger.In the summer of 1991, while visiting my mother during Borden's summerbreak, he and I decided to drive to New York to see the racetrack atSaratoga. A 10-hour road trip was risky, but I had grown tired of living soconfined a life.As we set out, the skies darkened. By the time we reached the interstate, aferocious thunderstorm was crashing around us. Rain and hail hammered theroof of the car and gusts of wind buffeted us across the lane. We werecaught in speeding traffic, but because the sheets of rain sweeping down thewindshield limited visibility to a blurry tinge of lights ahead and behind,we couldn't slow down or pull over. It was more than an hour before we wereable to escape into a rest stop. I sat on the floor of the bathroom, lookingout a high window and watching the trees sway. The rain tapered off. Myhands were shaking.We had planned to stop at the New Jersey farmhouse where our friends Billand Sarah were staying, but we were very late. Borden called them on a payphone while I waited in the car, watching him through the beads of rain onthe windshield. He climbed back in, and we sat with the engine idling. I wasfrightened by the draining sensation in my body.Should we turn around? I asked. Borden's brow furrowed. Sometimes you'vegotten a second wind, he said gently, as if asking a question. I wanted tobelieve him, so I agreed. He put the car in gear and we drove in silence. Ifelt worse and worse. I think we should turn around, I said, struggling topush the words out. We're closer to Bill's than we are to home, he said. Ifwe keep going, you can rest sooner. He was scared now, leaning forward,driving fast. We entered New Jersey. We have to turn around, I said. Please.My head was pressed against the window, and I was crying. We're almostthere, he said. We turned into the farmhouse driveway. There were rows ofmelons in the field.Bill took us to a guest room. Borden turned on the TV and left me to rest.By the time he returned to check on me, I was sweating profusely and chillswere running over me in waves. He took my hand and was horrified: it wasgray and cold, and the veins had vanished.He spread blankets over me and tried to help me drink a glass of milk. Icouldn't sit up, so he cupped my head in his hand and tipped the milk intomy mouth sideways. It ran down my check and pooled on the pillow. My teethchattered so much that I couldn't speak. Borden called an emergency room.The nurse thought that I was in shock and urged him to rush me in. But wewere far from the hospital, and doctors had never been able to help. I wassure that being moved would kill me.Borden lay down and held me. Wide awake, I slid into delirium. I was in avast desert, looking down at a dead Indian. His body was desiccated andhardened, his skin shiny and black and taut over his sinews, his arms bentupward, hands grasping, clawlike. His shriveled tongue was thrust into anempty eye socket. I lay there and trembled, whispering I love you, I loveyou, I love you to Borden through clenched teeth. I'm sorry, he said.Hours passed. The sun rose over the melon field.Borden drove me back to my mother's house. I lay exhausted for three days.When I opened my eyes on the morning of the fourth day, I had a blackfeeling. I couldn't get up.For as long as two months at a time, I couldn't get down the stairs. Bathingbecame nearly impossible. Once a week or so, I sat on the edge of the tuband rubbed a washcloth over myself. The smallest exertion plunged me into a'crash.' First, my legs would weaken and I'd lose the strength to stand.Then I wouldn't be able to sit up. My arms would go next, and I'd he unableto lift them. I couldn't roll over. Soon, I would lose the strength tospeak. Only my eyes were capable of movement. At the bottom of each breath,I would wonder if I'd be able to draw the next one.The corpse of the Indian hung in my mind. Borden and I never spoke of it, orof the events of that night, and we never spoke of the future. To corral mythoughts, he made lists with me: candy bars from A to Z, Kentucky Derbywinners, Vice-Presidents in backward order, N.F.L. quarterbacks, Union Armycommanders. Over and over, I asked him if I was going to survive. He alwaysanswered yes.Late one night, as I walked down the hall, I heard a soft, low sound andlooked down the stairway. I saw Borden, pacing the foyer and sobbing. Istarted to call to him, then stopped myself realizing that he wished to bealone. The next morning, he was as cheerful and steady as ever. Butsometimes when I looked out the window I'd see him walking around the yardin endless revolutions, head down, hands on his temples.One afternoon in September, he came in, sat on my bed, and told me thatclasses were starting and he had to return to Chicago. Before he left, hegave me a silver ring engraved with the words 'Vous et nul autre (You and noother).' I slid it on my finger and pressed my face to his chest.With Borden in Chicago and my mother at work, I needed assistance to getthrough the day. I went through several helpers hired from nanny services.The first one clattered in with stacks of crimson-beaded Moroccan shoes andharem pants. She dumped them on my bed. 'Twenty for the shoes, thirty forthe pants,' she said. She prowled through the house, appraising thefurniture. 'How much do you want for your refrigerator?' she asked.When I asked the woman who followed to take Newton into the backyard, sheopened the front door and shooed the dog onto the street. Lying in bedupstairs, I heard the dog barking gleefully as she galloped westward. Icalled to the woman but got no response. I sat up and looked out the window.The woman was standing high in our apple tree, mouth open, gaping at thevacant sky. The dog returned; the woman did not.The third helper sympathized and commiserated, then bustled arounddownstairs while I lay upstairs in bed. It wasn't until she abruptlyvanished that I discovered she had been packing armloads of my belongingsinto her car each evening. I went to the closet and found only a hangerwhere my taffeta ball gown had been.On a rainy afternoon in January of 1993, I was sitting on the bed reading amagazine when the room began whirling violently. I dropped the magazine andgrabbed on to the dresser. I felt as though I were rolling and lurching, aship on the high seas. I clung to the dresser and waited for the feeling topass, but it didn't. At five the next morning, I woke with a screeching,metal-on-metal sound in my ears. My eyes were jerking to the left, and Icouldn't stop them. My eyes, upper lip, and cheeks were markedly swollen.I went to a neurologist for tests. A technician asked me to lie down on atable. He produced something that looked like a blowtorch and pushed it intomy ear. A jet of hot air roared out, spinning the vestibular fluid in myinner ear. It triggered such a forceful sensation of spinning that I grippedthe table with all my strength, certain that I was about to fly off and slaminto the wall. The tests determined that my vertigo was neurological inorigin and virtually untreatable. The doctor prescribed diuretics and anextremely low-sodium diet to control the facial edema, which seemed to belinked to the vertigo. He could do little else.The vertigo wouldn't stop. I didn't lie on my bed so much as ride it as itswung and spun. There was a constant shrieking sound in my ears. Thefurniture flexed and skidded around the room, and the walls folded andunfolded. Every few days there was a sudden plunging sensation, and I wouldthrow my arms out to catch myself. The leftward eye-rolling came and went.Sleep brought no respite; every dream took place on the deck of a tossingship, a runaway rollercoaster, a plane caught in violent turbulence, afalling elevator. Looking at anything close-up left me reeling. I couldn'tread or write. I rented audiobooks, but I couldn't follow the narratives.Borden called several times a day. He told me about Xenophon and Thucydides,the wind off Lake Michigan, the athletic feats of the roaches. When I askedhim about himself, he changed the subject.On Valentine's Day, a package from Borden arrived in the mail. Inside was agold pocket watch. I hung it from my window frame and stared at it as theroom bent and arced around it. Weeks passed, and then months. The watch dialmeted out each day, the light sliding across it: reddish in the morning,hard and colorless at midday, red again at dusk. In the dark, I could hearit ticking.Outside, the world went on. Linc got married, my siblings had children, myfriends got graduate degrees and jobs and mortgages. None of it had anyrelation to me. The realm of possibility began and ended in that room, onthat bed. I no longer imagined anything else. If I was asked what month itwas, I had to think a while before I could answer.While I was lying there, I began to believe that we had struck the deer backin 1987, that he had come through the windshield and killed me, and thatthis was Hell.Two years passed. In late 1994, Borden took his qualifying exams, and leftChicago. When I first saw him, lugging his green backpack, he was so thinthat I gasped.In 1995, by tiny increments, the vertigo began to abate. Eventually, I couldread the back of a cornflakes box. My strength began to return. Instead ofsitting on the edge of the tub with a washcloth, I could sit on the showerfloor while the water ran over me. The first time I showered, dead skinpeeled off in sheets. A hair stylist came and cut off eight inches of myhair, which had been growing like kudzu for several years and was nownearing my waist. In time, I could walk down the stairs almost every day. Isat on the patio looking at the trees.Since my visit to Johns Hopkins, I had searched for an internist I couldtrust. In 1988, C.F.S. had been officially recognized and described by theCenters for Disease Control and Prevention. Subsequent research suggestedendocrinologic, immunologic, and neurologic abnormalities in many C.F.S.patients, though the cause remained elusive. Physicians were becoming awareof the disease, but many of them knew less about it than I did. Othershawked dubious treatments. For a while, I tried almost anything. A fewtreatments caused disastrous side effects. The rest did nothing.Then a friend referred me to Dr. Fred Gill, a renowned infectious-diseasespecialist. He was an angular, elegant man with a neat, Amish-style beardrimming a sharp jawline. As Borden and I told him my story, I found mystomach tightening in anticipation of a dismissive verdict. But Dr. Gilllistened for the better part of an hour. When he had finished, he nodded. Hecouldn't cure me, he said, but he would do everything he could to help mecope with the illness. In the following years, Dr. Gill managed my symptomsand coordinated my care with other specialists.Eager to be productive, I called my Equus editor, Laurie Pfinz, and asked ifI could write something. She assigned a story on equine surgery and told menot to worry about a deadline. I did the interviews on the phone from bed.Because looking at the page made the room shimmy crazily around me, I couldwrite only a paragraph or two a day. When I could no longer stand thespinning, I'd take a pillow into the yard and lie in the grass with Newton,fixing my eyes on the treetops while she dissected a bone. It took me sixweeks to write 1,500 words, but, four years after the abortive trip toSaratoga, I was coming back.In 1996, with Borden and Fangfoss the cat, I moved into a small apartment innorthwest Washington, D.C. One block away stood a fire station, and ifWashington has an arson district we were in the heart of it. At theTaiwanese consulate, which was next door, a group of protesters soon set upcamp, hauled in a loudspeaker and blasted a Chinese rallying song, sung byshrieky children. They apparently had a loop tape, so the song never ended.It was like listening to a bone saw. After a few weeks, I started dreamingto it.I turned up my radio and wrote as much as I could, mostly equine veterinarymedical articles for Equus. On breaks, I took brief walks. I bought newshoes -- I'd been lying around in socks for years - and discovered that myfeet had shrunk two sizes. I had lived for so long in silence and isolationthat the world was a sensory explosion. At the grocery store, I dragged myhands along the shelves, touching boxes and bags, smelling oranges and pearsand apples. At the hardware store, I'd plunge my arm into the seed bins tofeel the pleasing weight of the grain against my skin. I was a toddleragain.After years of seeing people almost exclusively on television, I found theirthree-dimensionality startling: the light playing off their faces, thecomplexity of their hands, the strange electric feel of their nearness. Oneafternoon, I spent 15 minutes watching a shirtless man clip a hedge,enthralled by the glide of the muscles under his skin.On a cool fall day in 1996, I was sifting through some documents on thegreat racehorse Seabiscuit when I discovered Red Pollard, the horse'sjockey. I saw him first in a photograph, curled over Seabiscuit's neck.Looking out at me from the summer of 1938, he had wistful eyes and a face asrough as walnut bark.I began looking into his life and found a story to go with the face. Born in1909, Red was an exceptionally intelligent, bookish child with a shock oforange hair. At 15, he was abandoned by his guardian at a makeshiftracetrack cut through a Montana hayfield. He wanted to be a jockey, but hewas too tall and too powerfully built. That didn't stop him, though. Hebegan race riding in the bush leagues and fared so badly that he took topart-time prizefighting in order to survive. He lived in horse stalls for 12years, studying Emerson and the 'Rubaiyat,' piloting neurotic horses at'leaky roof' tracks, getting punched bloody in cow-town clubs, keepingpainfully thin with near-starvation diets, and probably pills containing theeggs of tapeworms.He was appallingly accident-prone. Racehorses blinded his right eye,somersaulted onto his chest at forty miles per hour, trampled him, andrammed him into the corner of a barn, virtually severing his lower leg. Heshattered his teeth and fractured his back, hip, legs, collarbone, shoulder,ribs. He was once so badly mauled that the newspapers announced his death.But he came back every time, struggling through pain and fear and thelimitations of his body to do the only thing he had ever wanted to do. Andin the one lucky moment of his unlucky life he found Seabiscuit, a horse asdamaged and persistent as he was. I hung Red's picture above my desk andbegan to write.What began as an article for American Heritage became an obsession, and inthe next two years the obsession became a book. Borden and I moved to acheap rental house farther downtown, and I arranged my life around theproject. At the local library, I pored over documents and microfilm Irequisitioned from the Library of Congress. If I looked down at my work, theroom spun, so I perched my laptop on a stack of books in my office, andBorden jerry-rigged a device that held documents vertically. When I was tootired to sit at my desk, I set the laptop up on my bed. When I was too dizzyto read, I lay down and wrote with my eyes closed. Living in my subjects'bodies, I forgot about my own.I mailed the manuscript off to Random House in September 2000, then fellinto bed. I was lying there the following day when the room began to gyrate.Reviewing the galleys brought me close to vomiting several times a day. Mostof the gains I had made since 1995 were lost. I spent each afternoon sittingwith Fangfoss on my back steps, watching the world undulate and sliding intodespair.In March 2001, Random House released 'Seabiscuit. An American Legend.' Fivedays later, I was lying down, when the phone rang. 'You are a best-sellingwriter,' my editor said. I screamed. Two weeks later, I picked up the phoneto hear him and my agent shout in tandem, 'You're No. 1!' Borden threw awindow open and yelled it to the neighborhood.That spring, as I tried to cope with the dreamy unreality of success and thecontinuing failure of my health, something began to change in Borden. Atmeals, he sat in silence, his gaze disconnected, his jaw muscles working.His sentences trailed off in the middle. He couldn't sleep or eat. He wasfalling away from me, and I didn't know why.He came into my office one night in June, sat down, and slid his chair up tome, touching his knees to mine. I looked at his face. He was still young andhandsome, his hair black, his skin seamless. But the color was gone from hislips, the quickness from his eyes. He tried to smile, but the corners of hismouth wavered. He dropped his chin to his chest. He began to speak, andfourteen years of unvoiced emotions spilled out: the moment of watching thewoman he loved suffer, his feelings of responsibility and helplessness andanger; his longing for children we probably couldn't have; the endlessstrain of living in obedience to an extraordinarily volatile disease.We talked for much of the night. I found myself revealing all the grief thatI had hidden from him. When I asked him why he hadn't said anything before,he said he thought I would shatter. I recognized that I had feared the sameof him. In protecting each other from the awful repercussions of ourmisfortune, we had become strangers.When we were too tired to talk anymore, I went into the bedroom and sat downalone. I slid his ring from my finger and dropped it into a drawer.We spent a long, painful summer talking, and for both of us there weresurprises. I didn't shatter, and neither did he. I prepared myself for himto leave, but he didn't. We became, for the first time since our days atKenyon, alive with each other.One night that fall, I walked to the back of the yard. As Fangfoss huntedimaginary mice in the grass, I looked out at the hill behind the house.Beyond it, downtown Washington hummed like an idling engine, the city lightsradiating over the ridge. I looked west, where a line of row-house chimneysfiled down the hill until they became indistinguishable from the trunks ofthe walnut trees at the road's end. Borden came out and joined me briefly,draping his arms over my shoulders, then he went inside. I watched thescreen door slap behind him.As I turned back, I saw a slit of light arc over the houses and vanishbehind the trees. It was the first meteor I had seen since that night inLinc's car. I thought, for the first time in a long time, of the deer.In the depths of illness, I believed that the deer had crashed through thewindshield and ushered me into an existence in which the only possibilitywas suffering. I was haunted by his form in front of the car, his bent knee,the seeming inevitability of catastrophe, and the ruin my life became.I had forgotten the critical moment. The deer's knee didn't straighten. Hedidn't step into our path, we didn't strike him, and I didn't die. As sureas I was that he had taken everything from me, I was wrong.The car passed him and moved on.--------Copyright 2003 The New YorkerSource: The New YorkerDate: July 7, 2003URL: www.newyorker.com


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## M&M (Jan 20, 2002)

Susan, thank you so much for posting that. I'm definitely going to print it out and keep it. It really is very moving, and a surprisingly (almost scarily) accurate account. I really really thank you for sharing it.







I missed the interview on the 18th, but I have seen her, and you're right Gail, she is incredibly beautiful.


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