Bushel #13: Brain Holes

A little over five years ago, on a Thursday evening in the depths of the first pandemic winter, and about ten months into the 24/7 absolute madness that was the early years of Tune Supply, we started livestreaming our usual virtual session. (It was session #51, in fact.) The theme for that session was "roadtrips," so I was "driving" a "car" using a "steering wheel" made from a ring light, as you can see in this clip. (You'll remember, I'm sure, how out of our minds we all were!)

But this particular session was unique because it was the only one during which we didn't have our instruments, and didn't play any tunes ourselves. The reason I gave for not playing was that I had injured my hand. You can see in the video that my left hand was wrapped in an Ace bandage.

But I wasn't telling the truth.

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Beginning when I was very young, and continuing through college, I was convinced I had a brain tumor. It was a sure enough belief of mine that it became a bit of a joke in my family. "Oh, Caitlin has a headache again? Must be the brain tumor!" (It's true that I've always been the family hypochondriac, a habit I haven't fully kicked.)

I remember my beloved grandmother, who was a nurse, telling my mom that it wasn't good for me to be thinking I had a brain tumor all the time. After all, what if thoughts could become realities? Best not to tempt fate. But I couldn't shake the thought.

As it turns out, I had the right organ, but the wrong disease.

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In the video, my hand is bandaged not because I injured it, but because I had an IV line installed in it that prevented me from playing. That's because a month or so before, I was diagnosed with Multiple Sclerosis, an incurable autoimmune disease that causes lesions on the brain and spinal cord. (Which in turn causes all sorts of unpredictable havoc in the body.) Every day for a week, I was infusing myself with a bag of steroids the size of a small grapefruit in order to stop my brain from burning the protective sheath of myelin off my nerves.

In other words, to stop myself from continuing to attacking myself.

Until today, I'd only told eleven people of my diagnosis, and all were sworn to secrecy. When I finally decided to tell folks, a few weeks ago, I knew that some close friends would be angry at me for not telling them. If that's you, I'm so, so sorry. There are many reasons I kept this to myself, all of which I realize now are pretty invalid. But here are some of them:

-I didn't want anyone to feel sorry for me.
-I didn't want to be a burden to anyone.
-I didn't want anyone to feel like they were obligated to help me.
-I didn't want to be known as someone with a bad disease.
-I worried about how it would affect my ability to work and play music and wanted to figure that out for myself.
-I worried that if I made a single little mistake on anything at all, people would assume it was because of my disease, not because -I just made a dumb mistake.
-I worried that people wouldn't offer me work because they'd assume this diagnosis would cause me to perform badly.
-I wanted to prove that I could do everything I'd always done, at the speed and level I'd always done it.
-I wanted to pretend, through sheer force of will, that it wasn't happening...and therefore that no one needed to know.

A dear friend of mine, one of the few I told early on, asked why I wasn't letting at least some of my close friends know. I gave him many of the reasons above. He looked at me quizically, and perhaps with a little pity, and said, "Don't you think your friends would want to help and support you, not judge you?" I couldn't answer, because I knew I'd cry if I spoke.

This paragraph is hard to write, and probably hard to read, and for that I apologize. I couldn't answer my friend because life had taught me that being vulnerable with others often ended badly. A large part of me believed I deserved no compassion or grace. (A tiny part of me still believes that I deserve this illness.) I understood early on in life that I was to be as close to perfect as humanly possible, and that needing, asking for, accepting, or even desiring help were the greatest sins of all. I was taught to need no one and nothing, to fight my battles not only alone but without anyone knowing, and to simultaneously take care of everyone else while keeping a smile on my face. Now don't get me wrong...I'm not saying these skills haven't come in handy, ha!! They have. I can survive just about anything.

I wanted to be strong. I wanted to pretend this didn't affect me. I wanted reality to be other than it is. But though I try again and again, I am not so strong as to bend reality to my liking. And I've grown weary of the truth festering inside me. So the time has come to tell the story of how I got holes in my brain.

(This is a long essay, so feel free to stop here if that's enough bad news for you. There's a lot of awful in the world right now and I don't want to contribute more to anyone's despair!)

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When Broadway shut down and we started Tune Supply the next day, I didn't realize the extent to which it would take over our lives. We held the first virtual session on Thursday, March 19th, 2020, exactly one week after Broadway closed.

Covid had been going around the theaters in the weeks before the closure, and we were all absolutely terrified. There wasn't any testing to speak of, we didn't fully understand transmission, and people were beginning to die. City government and the Broadway powers-that-be wouldn't shut down the shows, which likely created superspreader events each night.

I was so scared. I could have called in a sub, but I didn't feel it was right to put the risk on someone else. So I played all the shows until we got an email at 5pm on March 12th saying that Broadway was closed indefinitely. We were told to have our stuff out of the theaters by 7pm that night.

A few days later, Chris got sick. His doctor was able to get him a test. It was Covid. I got sick and lost my sense of taste and smell shortly afterwards. But we didn't tell anyone - not even our families. Unbeknownst to everyone tuning in, we both were suffering from this mysterious illness with potentially dire outcomes while streaming that first session.

Why didn't we say anything? I suppose I didn't want anyone to worry on our behalf when there was so much else to worry about. I wanted it to be about the music, about keeping the community together and in good spirits while the outside world was at the mercy of a deadly airborne menace. As if to drive home the point, the hospital that I could see from my bedroom window set up refrigerated morgue trucks in the middle of the street, and the sirens rarely ceased.

The next many months were consumed with so much Tune Supply that I have no earthly clue how we did it. I was trained early in life to always push myself to the utmost limits, with no real regard for food, rest, health, or any other silly barrier that mere mortals might come up against. So that's what I did. Except this time I felt the weight of not just my own responsibilities, but also the wellbeing of the whole traditional music community, as Tune Supply attempted to keep artists working and paid while keeping the community knit together and supported.

This strategy of driving myself to the edge had always worked well in my life, if the definition of "worked well" is "worked every waking hour without collapsing". Childhood showed me these ropes. I started serious classical music training at age three, kindgergarten at four, Algebra 1 at eight, skipped seventh grade, and graduated five months after my 16th birthday. In college I worked 40-50 hours a week at three jobs while double majoring and taking 25 credits a semester. Grad school was more of the same, but I also became the legal guardian of my youngest sister when I was 23. After grad school I taught eight hours of private lessons without a break most days, usually followed by a gig.

During my time on Broadway - well, that's another long story, but suffice to say that playing the actual show was the least of the work. I spent the time I wasn't playing or teaching working (in vain, as it turned out) to improve working conditions and disparities in the industry after being subjected to a whole lot of awful stuff at my own theater. (For the record, I love Come From Away and wouldn't have traded the experience for anything. I just wish the bad stuff hadn't happened.)

All of this is to say that I didn't think there was a limit to the amount I could take on, because I'd never found it, and my body had never punished me for that. Or so I thought.

I am proud of my work ethic, even though, looking back, I see that it was incalculably detrimental to my health, relationships, friendships, sense of purpose outside work (or lack thereof), and to the very few parts of my life that were not work. But we do what we are trained to do, don't we, and we do what we have to in order to survive. I was trained to work like a machine.

Plus, NYC tends to eat people alive who aren't wealthy and don't have family support. And there was no way in hell I was going to let myself be eaten alive.

As it turns out, there's more than one way to be eaten alive. One of those ways is for your body to eat itself from the inside out.

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A few months after getting Covid the first time, two things began happening. The first was that I kept feeling like I had Covid again. This also became a running joke. "I've got Covid #9!" I'd announce. A few weeks later, "I've got Covid #23!" I can't remember what iteration of Covid I got up to. It was near impossible to get tests at first, so there was no way to know whether any of these Covids were real or not...I suspect they were not...but my body knew something wasn't right.

The second was that I started getting what I called "brain holes". (A prophetic name, as it turned out, which is unnerving. The body always knows, even when the mind can't fathom.) It's hard to describe what "brain holes" feel like except that the name is accurate - it feels like there are holes in your brain. I'd take precious moments out from Tune Supply work to lie on the bed and have what I called "brain rest". Again, my body was trying to tell me something wasn't right. But onwards I went at the speed of light, not knowing that I was finally getting close to that limit I thought didn't exist.

We spent the summer up in Alaska, continuing Tune Supply work while traveling around the state. But I still felt...not right. At some point I decided I should see a doctor. I wasn't sure what doctor though, because I couldn't say with any certainty what was even wrong with me. But it didn't matter because it was simply not possible to see a doctor of any sort in Alaska that summer. Doctors weren't taking new patients, or weren't seeing patients who had out of state insurance, or didn't have open appointments for months, or had simply deserted the state themselves when the shit hit the fan. So the brain holes festered while I wrote it all off as being overworked and over tired. I promised myself that I'd see a doctor back in NYC.

In mid-October we returned to Fairbanks after living in Anchorage for a couple months. I hadn't been in Fairbanks in October in years, so I'd forgotten the overwhelming sense of foreboding that suffocates the Interior when the light disappears, the temps drop, and the snow starts falling. In the space of 24 hours, I decided I wanted out. The next day we booked our tickets back to NYC.

The night before we left, I was packing my luggage in the bedroom. Suddenly I got very dizzy and had to lie down. I'd been dizzy before (sometimes while standing on the chairs at Come From Away) but this was something more. It wouldn't go away. In retrospect, I know now that this was the moment when my body and brain finally said:

Enough. You haven't ever listened to yourself. You've ignored our more and more urgent signals. You don't take care of your body, your mind, your wellbeing, your boundaries, your anger, your voice, your spirit, your needs, your wants...none of it. So you know what? We're taking control of this brakeless freight train. You found the limit and it has been exceeded. Now it's all going to stop. You're done.

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The dizziness continued all the way back to NYC, where other distressing symptoms began. I won't get into those; I don't want to scare you. I made an appointment with a neurologist in my neighborhood. It took two weeks to get in. That doctor was nonplussed, decided I had an inner ear imbalance of some sort, and had me come back a week later for some strange tests that involved spinning me around on an office chair with a blindfold on. This was not a good doctor.

"Just to be sure it's nothing serious," the doctor said, "let's have you do a brain MRI." It took another two weeks to get an appointment for the MRI. Meanwhile, the very scary symptoms were getting worse by the day. I knew it wasn't an inner ear imbalance. The MRI results arrived in my app the day after the test. I sat down on my big green chair and scanned through all the medical mumbo jumbo.

The words "Multiple Sclerosis" popped out. All I really knew of the disease was that the cellist Jacqueline De Pre had died of it, and that it was really bad news. I stared out the window, mind both uncomprehending and totally fucking comprehending. (The doctor called three days later and said "I'm sorry, you have Multiple Sclerosis." I said "I know" and hung up.)

What would you do with this information? It's a curious situation, because MS is not generally going to kill you in and of itself. Until recent advancements in treatment (which are only treatments, not cures, and not silver bullets by any means) MS would simply debilitate you over the course of months or years or decades. The rate and type of disability was anyone's guess.

One reason MS is so hard to diagnose (indeed, there's no way to say with 100% certainty that a person has MS - it's assumed based on MRI results and symptoms) is because the effects are dependent on where in the brain and spine the sclerosis, or lesions, have occured. One person with MS could have the disease without knowing it for years (or ever!) while another might succumb to its effects in months. So again, I ask: What would you do?

Here are the things I did while sitting on that green chair, after getting my wits together:

1. I asked two of my most trusted friends/mentors what hospital they would go to if they received this diagnosis. They responded with the ultimate in care and wisdom, as they have continued to do to this day, and for which I will forever be in their debt. Two weeks later I had an appointment at the MS Center at Columbia, and later moved to NYU Langone, which I recommend wholeheartedly if you ever, God forbid, find yourself in this situation.
2. I decided that I wouldn't change anything at all. My plans, behavior, work, life, and everything else would go on as if nothing had changed. I was going to be the person who had MS, but simply wasn't affected by its presence in their life. End of story.
3. I decided I would tell almost no one.
4. I started revving up my science brain. I wanted to why this had happened to me and what to do about it. Like every other problem I'd ever encountered, I was going to fix it somehow.

And that's how the current chapter of my life started, unexpectedly and against my will, a secret pox in my head, a battle against myself (medically and metaphorically), a burden I chose to bear alone even though I didn't have to. But old habits die hard.

(For those unfamiliar with MS: the TL;DR is that it's an autoimmune disease wherein the body's immune system attacks and destroys the myelin sheath surrounding nerves in the brain and spinal column. These are called lesions, and they appear on MRIs as black spots of varying sizes in your brain. Which makes it particularly spooky that I called them "brain holes" before I was diagnosed. Symptoms and outcomes vary widely depending on the location of the damage. Folks with MS can experience flare-ups or relapses during which new lesions form and more disability occurs. But we now have eye-poppingly expensive medication that reduces relapses to near zero in many patients. I am on one of these medications, at least as long as my insurance will cover it. Or, I should say, as long as I have insurance. MS has no cure.)

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What causes MS? Science is not exactly sure, and as with most diseases, the answer is likely a combination of a bunch of variables plus some old-fashioned bad luck. But it's true that of the known risk factors, I happen to have a lot of them.

More women than men have MS, and it's usually diagnosed between the ages of 20 and 40. It's more prevalent in people from northern parts of the globe (like Alaska!), possibly because it may be associated with low vitamin D levels and lack of exposure to sunlight. Exposure to fine particulate matter (like that which the stage haze I breathed during 1500+ Broadway performances is comprised of) is "strongly linked" to MS. Going through serious stressful life events can be associated with the onset of MS. (I had at least three of these in the years leading to my diagnosis.) Certain genes (some of which I have) put you at higher risk. Below are some other major risk factors.

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Epstein-Barr Virus:

In recent years, scientists have become more certain that MS is associated with the Epstein-Barr virus. (That's the one that causes mononucleosis.) Here's what Stanford Medicine has to say about it:

"Epstein-Barr virus (EBV) is recognized as the leading, necessary cause of multiple sclerosis (MS), with infection increasing MS risk over 30-fold. Nearly 99% of MS patients have been infected with EBV. The virus triggers MS by priming the immune system to attack the nervous system via molecular mimicry, where antibodies against EBV mistakenly attack myelin in the brain."

Almost everyone - over 90% of the population - has had EBV. Obviously we don't all have MS! But 99% of people who have MS have had EBV. EBV can lay dormant for years or decades, then reactivate. There's currently no vaccine, but scientists think that if there was one, nearly all MS cases could be avoided. (It's also associated with a few other diseases, so we should really get on this!) More from Stanford Medicine:

"EBV produces proteins, specifically in memory B cells, that resemble the brain protein GlialCAM. The immune system, in trying to fight the virus, mistakenly attacks this brain protein."

I had mononucleosis in high school. I'm not sure if it's still nicknamed "the kissing disease," but it was at that time, due to its apparently prevalent transmission between horny teenagers. But making out is not how I got mono, since I hadn't made out with anyone yet when I got it!

The only thing I can figure is that I got it from touching the microphones on the headsets I removed each night from the airplanes that took tourists up to the Arctic Circle at my family's air service. I suppose if I hadn't gotten it from doing that, I would have gotten it somewhere else. But it's tempting to imagine that I might not have gotten MS if I hadn't had EBV in high school.

In the months after Covid came on the scene, it was discovered that it can cause the reactivation of long-dormant viruses...like Epstein-Barr. It's likely that my March 2020 Covid infection reactivated Epstein-Barr in my body, which may have triggered MS (or, if I had it prior to that, which I suspect I did, sped up its progression). Blood tests I took after subsequent infections with Covid showed that it had indeed caused Epstein-Barr to be reactivated in my body.

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Stress and Other Related Monsters:

"When we have been prevented from learning how to say no, our bodies may end up saying it for us." - Dr. Gabor Mate

It's long been thought that stress, especially long-term and excessive exposure, can influence the onset of MS and the progression of the disease. Recent studies have lent credence to this hypothesis, as well as the idea that acute or prolonged stress in childhood and/or after major life events can precede disease onset and progression. I'd heard these things before I was diagnosed, and always wondered if my stress level, which has always been exceedingly high, put me at risk. I'm sure it did.

But recently I read a book about the connection between stress and disease that completely blew my mind. "When the Body Says No", by Dr. Gabor Mate, makes the argument that chronic, acute, and unacknowledged stress, often in childhood, along with repressed emotions (especially anger) can lead to disease - autoimmune diseases like MS in particular. He backs this up with study after study and decades of his own work as a physician.

Everyone is stressed out all the time, especially these days. I am not making the argument that I am more stressed than anyone else! Obviously if everyone who felt stress got MS, we'd all have MS. But the type of stress Dr. Gabor talks about is different than our colloquial usage of the word. In order to not misstate his ideas, I'm including a bunch of quotes from his book after this essay. They are all ones I feel greatly mirror my own experiences.

As I mentioned above, there is evidence to suggest that severely stressful life events can precede the onset of MS by a few years. Unfortunately, the years leading up to my diagnosis were filled with these sorts of events. In 2017, I went through a supernova-like relationship implosion, entirely my fault, that rocked my world to the extent that it hasn’t stopped rocking. Throughout the CFA run, I dealt with a terrible, unresolved, and ongoing harassment situation. And, I hate to say it, Tune Supply itself was likely a contributing factor, as it was 24/7 work in the months right before my diagnosis.

I remember only a few short periods in my life during which I wasn't under intense stress of the sort that Dr. Gabor believes can lead to serious illness. It's tempting, right now, to spend a few more paragraphs telling stories about the experiences that Dr. Gabor would likely find concerning. But that would bring us all down, and this essay is long enough!

I always thought there was no limit to the amount of stress I could subject my body and mind to...but as it turns out, I was incorrect. My body eventually said no.

As an aside: Dr. Gabor tells the story (famous among classical musicians) of cellist Jacqueline du Pre, who died very young of an aggressive form of MS. A fascinating detail I wasn't aware of was that when Jacqueline and her sister were kids, Jacqueline told her sister, "when I grow up, I won't be able to walk or move". This harkens back to my belief, when I was young, that I had a brain tumor. It makes me wonder if they body knows something very wrong is happening long before the conscious mind, or the doctors, figure it out. As someone who began playing music very young but hasn't loved it for good portions of my life and didn't intend for it to become a career, this quote really spoke to me:

"Jacqueline du Pre's cello voice remained her only voice. Hilary called it her sister's salvation. It was not. It worked for audiences, but it did not work for her. People loved her impassioned music making, but no one who mattered ever truly listened. Audiences wept and critics sang her praises, but no one heard her. Tragically, she, too, was deaf to her true self. Artistic expression by itself is only a form of acting out emotions, not a way of working through them."

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A few months after I was diagnosed, I traveled to the Cleveland Clinic to get a second opinion. At that point I was still pretty obsessed with figuring out WHY this happened to me. I proposed many of the above theories to the doctor, with the hopes that he'd be able to tell me the answer so I could stop ruminating about it. Instead, he said, "Caitlin, it doesn't matter why it happened. Even if you figured it out, it wouldn't matter. The outcome would be the same." He was right, and that ended my search for the why. It could be any of the reasons I wrote about above, or many of them, or none of them. Or it could just be bad luck.

Between my diagnosis and March 2025, I continued to effectively pretend that I didn't have MS, working at the same furious pace I've always worked, not telling anyone. But the unfortunate fact is that I do have some symptoms (although I am lucky that it was caught relatively early) and so it's always on my mind. (No pun intended.) One symptom is that I'm just very tired a lot of the time.

I'm lucky to be on a disease-modifying treatment that is cutting-edge and extremely effective. (Or rather, I'll be on it as long as my insurance will cover it. The market price is about $25,000/month. I'm terrified of what happens if I can't get access to it.) The drug doesn't cure MS. There is no cure. The best we can do attempt to stop the disease in its tracks and hope that it doesn't progress.

But the thing about MS is that at any moment, even with the best treatment, your brain could decide to start attacking itself again. If this happens, a new symptom will pop up. It could be literally anything, since the symptom is dependent on where in the brain the damage occurs. It could be something very small, or something very bad. The only way to tell for sure whether what you're feeling is just a random sensation or your brain setting itself on fire again is by taking an MRI. Insurance allows that once a year. You can see how this could create great anxiety, a sense of dread, and fear for what the future holds.

In September of 2023, a bout of the worst anxiety I've experienced in my life began. The upside was that it caused me to get a ton of shit done...probably the most I've ever done in the span of a year. The downside was that, once again, I ignored the flashing red signals that my body was sending to me.

In March of 2025, I crashed. Almost overnight, the switch flipped from rampant anxiety to the deepest depths of depression. I hadn't learned my lesson, and so, once again, my body had said no. For a while, I tried to keep going at the same pace, pretending I was ok as was my habit. But I couldn't do it. I don’t think I’d ever said “I can’t do it” before in my life.

This is the sort of depression wherein opening a door feels like climbing a mountain. The sort where your brain is telling you that nothing matters. The sort where you start getting rid of your things and making amends. It's the bad shit. And although MS is not the primary cause of the depression, it's always in the background making things just a wee bit worse.

I guess this is what made me finally decide to tell people about my brain holes. I've held on to the idea that I can pretend like nothing is wrong, both physically and mentally, for far too long. Since I was a child, perhaps. In fact, it's likely that my inability to stop constantly brushing up against that limit I didn't think existed until I crossed it, my inability to say no before my body does, is partially to blame for my disease. I was already good at attacking myself before my brain started burning holes in itself.

What happens next? I don't know. I’m not working much right now, which is scaring the pants off me as pertains to paying rent in NYC, ha! Having a disease in which your body is attacking itself is a fucking trip, that's for sure. If I were in a better state of mind, I'd say that the silver lining is that it reminds you to live for the moment because you never know what tomorrow will bring. How's that for cliche, ha! In my current state, though, I just want to disappear from the world.

Hopefully with time that will change. Hopefully the drugs will keep working and I'll continue to have access to them. Hopefully research will bring improved treatments in the years to come. Hopefully I can keep paying the bills. Hopefully I'll learn how to live without hurting myself, and hopefully that's enough for me and for you, even if that reality looks different than what it was.

Thank you to everyone who has been patient and kind to me. Sorry to everyone who has wondered why I was so tired and not very much fun, ha. If you write to me and I don't respond right away, I apologize. Thank you for reading this and for being in my life.

-caitlin

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Additional quotes from "When The Body Says No" by Gabor Mate are below.

"My body says no to me frequently, and I keep going. I don't learn."

"In important areas of their lives, almost none of my patients with serious disease had ever learned to say no."

"Stress, as we define it, is not a matter of subjective feeling. It is a measurable set of objective physiological events in the body, involving the brain, the hormonal apparatus, the immune system, and many other organs. Both animals and people can experience stress with no awareness of its presence."

"Patients burdened by qualitatively extreme stresses...were almost four times as likely to suffer exacerbations [of multiple sclerosis]."

"Emotional repression is also a coping style rather than a personality trait set in stone. Not one of the many adults interviewed for this book could answer in the affirmative when asked the following: When, as a child, you felt sad, upset, or angry, was there anyone you could talk to - even when he or she was the one who had triggered your negative emotions? In a quarter centure of clinical practice, including a decade of palliative work, I have never heard anyone with cancer or with any chronic illness or condition say yes to that question."

"A 1994 studey done at...the University of Chicago Hospital looked at nervous system-immune system interactions and their potential role in MS...The MS patience described in the stress literature, and all the ones I interviewed, have been placed in positions akin to that of the unfortunate laboratory animals in the Chicago study: they were exposed to acute and chronic stress by their childhood conditioning, and their ability to engage in the necessary flight-or-fight behavior was impaired. The fundamental problem is not the external stress, such as the life events quoted in the studies, but an environmentally conditioned helplessness that permits neither of the normal responses of fight or flight. The resulting internal stress becomes repressed and therefore invisible. Eventually, having unmet needs or having to meet the needs of others is no longer experienced as stressful. It feels normal. One is disarmed."

"Excessive stress occurs when the demands made on an organism exceed that organism's reasonable capacities to fulfill them. The rubber band snaps, the spring becomes deformed. The stress response can be set off by physical damage, either by infection or injury. It can also be triggered by emotional trauma or just the threat of such trauma, even if purely imaginary. Physiological stress responses can be evoked when the threat is outside conscious awareness or even when the individual may believe himself to be stressed in a "good" way."

"When emotions are repressed...this inhibition disarms the body's defences against illness. Repression - dissociating emotions from awareness and relegating them to the unconscious realm - disorganizes and confuses our physiological defences so that in some people these defences go awry, becoming the destroyers of health rather than its protectors."

A study found that "in nearly 90 percent of cases, before the onset of symptoms...patients experienced traumatic life events that had threatened their 'security system.' Another study found that "eighty-five percent of these MS patients experienced the emergence of symptoms....in the wake of recent highly stressful events."

"Of the eight women with MS I spoke with...[four had partners that] had been emotionally distant and unavailable."

"One common characteristic was a pseudo-independence, described by the authors as a compensating hyperindependence. Celia's rigid belief that she could get through everything by herself was a coping mechanism, a compensation for emotional needs ignored in childhood. A child in her situation survives by pretending to herself, and to the world, that she has no needs she cannot take care of herself. One aspect of that pretence is to reduce the perception of emotional stresses to a child-friendly size, a habit that may then last for a lifetime. Compensating hyperindependence originating in early role reversal between parent and child also explains Celia's teeth-gritting endurance of physical pain."

"I have wondered at times how Mary's life might have turned out if someone had been there to hear, see, and understand her when she was a small child...perhaps had someone been there consistently and dependably, she could have learned to value herself, to express her feelings, to assert her anger when people invaded her boundaries physically or emotionally. Had that been her fate, would she still be alive?"

From a patient: "Sometimes I think that my MS was a punishment for my foolishness." From Dr. Mate: "This reference to disease as punishment raises a key issue, since people with chronic illness are frequently accused, or may accuse themselves, of somehow deserving their misfortune."

"The blurring of psychological boundaries during childhood becomes a significant source of future physiological stress in the adult. There are ongoing negative effects on the body's hormonal and immune systems, since people with indistinct personal boundaries live with stress; it is a permanent part of their daily experience to be encroached upon by others. However, that is a reality they have learned to exclude from direct awareness."

"The research literature has identified three factors that universally lead to stress: uncertainty, the lack of information, and the loss of control. All three are present in the lives of individuals with chronic illness...For some people, it is disease that finally shatters the illusion of control."

From a patient: "All my life I'd been the one in charge, taking care of everything. Suddenly now with the disease you are totally out of control."

"Chronic stress is activation of the stress mechanisms over long periods of time when a person is exposed to stressors that cannot be escaped either because she does not recongnize them or because she has no control over them."

"For the child it is no relief to feel sadness or anger if no one is there to receive those emotions and to provide some comfort and containment. Everything had to be held in rigidly. There is perhaps only so much energy the nervous system can expend pushing down powerful emotions that cry out for expression. At some point in particularly susceptible individuals, it seems reasonable to suppose, nerves may lose the ability to renew themselves."

"She also wrote in a journal about insights she had during this process, and she came to see that since childhood she had believed that in order to be of service, acceptable to others, and worthy of herself, she had to sacrifice her own needs. It took a life-threatening disease for her to learn that service through self-sacrifice is a dead end."

"...supression of anger and a passive, stoic response style seem to be associated with biological risk sequelae."

"Adults with a history of troubled childhoods may not encounter more serious losses than others do, but their ability to cope will have been impaired by their upbringing. Stress does not occur in a vacuum. The same external event will have greatly varied physiological impact, depending on who is experiencing it."

"The person who does not feel or express "negative" emotion will be isolated even if surrounded by friends, because his real self is not seen. The sense of hopelessness follows from the chronic inability to be true to oneself on the deepest level. And hopelessness leads to helplessness, since nothing one can do is perceived as making any difference."

"It is important to realize that you have to take care of yourself because you can't take care of anybody else until you do."

"This study demonstrated that people can experience emotional stresses with measurable physical effects on their systems - while managing to sequester their feelings in a place completely beyond conscious awareness."

"Repression, the inability to say no, and a lack of awareness of one's anger make it much more likely that a person will find herself in situations where her emotions are unexpressed, her needs are ignored, and her gentleness is exploited. Those situations are stress inducing, whether or not the person is conscious of being stressed. Repeated and multiplied over the years, they have the potential of harming homeostasis and the immune system. It is stress - not personality per se - that undermines a body's physiological balance and immune defences, predisposing to disease or reducing the resistance to it."

"Other traits identified in the psychological investigations of people with rheumatoid diseases include perfectionism, a fear of one's own angry impulses, denial of hostility, and strong feelings of inadequacy. As we have seen, similar traits are said to be associated with the "cancer personality" or with personalities at risk for MS, ALS, or any other chronic condition."

"Like compensatory hyperindependence, the repression of anger is a form of dissociation, a psychological process originating in childhood. The young human being unconciously banishes from awareness feelings or information that, if consciously experienced, would create unsolvable problems. Bowlby calls this phenomenon "defensive exclusion." "The information likely to be defensively excluded is of a kind that, when accepted for processing in the past, has led the person concerned to suffer more or less severely."

"Not infrequently, anger is redirected away from an attachment figure who aroused it and aimed instead at the self," Bowlby explains. "Inappropriate self-criticism results."

"In autoimmune disease, the body's defences turn against the self. In the life of a society - the body politic - such behaviour would be denounced as treason. Within the individual organism, physical mutiny results from an immunologic confusion that perfectly mirrors the unconscious psychological confusion of self and non-self. In this disarray of boundaries, the immune cells attack the body as if the latter were a foreign substance, just as the psychic self is attacked by inward-directed reproaches and anger."

"Repressed anger will lead to disordered immunity. The inability to process and express feelings effectively, and the tendency to serve the needs of others before even considering one's own, are common patterns in people who develop chronic illness."