What's helping you rise?

I just discovered a wonderful website for a wonderful reading/study group: healthpursuitsgroup.com. They are a unique health book club for people suffering from chronic fatigue syndrome (CFS), fibromyalgia (FMS), multiple chemical sensitivity (MCS), and related conditions.

In 2008, they were the subject of a short study by the University of Toronto Medical School and the Environmental Health Clinic at Women's College Hospital, Toronto. They are the only model in the medical literature of a support group for those with FM, CFS, MCS, etc., which helps people improve while other models made people worse.

They have a cool metaphor they use: the hot air balloon. What helps you to rise—what keeps you down? You can find the hot air balloon image on their website.


Some of the things they say help us to rise cognitively:
biochemical balance; biomechanical balance; experience; positive social contact; goals; planning; practice; opportunity for expression; experienced practitioner; information; reflection; appropriate strategies; helpful routines; mentoring

What keeps us down cognitively?
life events; restrictive beliefs or attitudes; genetic malformations of cognitive equipment; misinformation; biochemical problems; cognitive attacks by others or social systems; accidents; biomechanical problems; misinterpretation of blocking of social, biochemical, or biomechanical signals

It seems to me that a lot of what they say may help us to rise are practical things; tools we can apply to our life in some way, as well as having room for reflection and self-expression. The things that keep us down are more about our own and others' belief systems. I have certainly found this to be true in my own life.

The more I can separate my emotional fear/panic/anxiety responses and belief systems from the physical, more practical realm, the better I can respond to a new challenge. But first I must be able to express the emotional freely (talking to members of my personal support team, screaming at the top of my lungs, writing in my blog, etc.). Then I am freed up to take very practical steps to resolving the issue—writing down pros and cons, making lists, contacting others to help me get the job done, etc. helps keep me sane and balanced.

Yesterday I read an interesting article on post traumatic stress disorder. It said that when one experiences a traumatic event, only unexpressed energy will remain in the body to cause PTSD; if you are able to release/express all your fears, anger, pain about the situation in the moment or over the next few days/weeks, you should not develop PTSD. So it's very important to express and emote all your bottled up feelings so they don't sit with you on a cellular level. And then focus on the practical.

One of the harder things to do is break down our (and others') belief systems, because they are so ingrained they have become invisible to us. The first step is identifying a belief system. For example, that "disease" and "cures" exist at all. Those are constructs humans have created. What ideas are guiding your thoughts, behavior—your life—that you don't even realize? That is the first step to breaking them down.

Please share in the comments section below what constructs you have identified in your life, how they have limited you, and how you have been able to overcome them.

Peace out! Julie

There Comes A Time

by Julia Tuchman

I have never been very good at surrendering.

I have been the fighter—the hold on to the side of the cliff, fight for your life, never give up and never go down with the ship kind of soul. It was exhausting work.

Because surrender is one of my bigger lessons, I have had more opportunities then one should be given. But I am stubborn. The lessons kept coming. I had to fight for my life.

At 20, I was forced to leave college with mononucleosis. I planned to return back to my studies the next semester, healthy and strong. The mono symptoms never seemed to leave, and I was bedridden. Like dominos falling, the mono progressed to a viral syndrome and chronic fatigue syndrome. My immune system was compromised to such an extent that I developed severe environmental illness, so sensitive and allergic to the modern world, that I was homebound for much of a decade. When I left my environmentally safe house, I had to wear a specially filtered mask. I fought. It kept me alive. I never gave up.

Due to some strange medical fluke, some sort of neurological damage from the virus, I was left for nine years unable to eat solid food. For those nine years, I have had to survive on liquefied food. I have been brought to my knees, but I am thankful for my blender.

I lost a chance at college, career, children, weddings, parties, and a nice plate of lasagna. I have had backs turned to me, betrayals, lost opportunities and a hunger I can’t even describe. Twenty years had gone by. I was a Rip Van Winkle of sorts without the sleep. I was the Mrs. Haversham from a Dickens novel stuck in some time warp. I cried out many times in my life wondering if perhaps God had forgotten about me.

A few weeks ago, on the way to yet another doctor visit, I walked on to the elevator on the 23rd floor of the building I live in. The brass doors closed, and I pressed the lobby button. As I straightened my coat, the elevator began to wildly shake back and forth. My heart shook with it. The elevator then dropped a foot, rose again and dropped even more. In my mind I imagined the elevator hanging by a thread. It was going to fall 23 stories down. I had no control.

My hands reached out frantically searching for the emergency button. I pressed every button I could, until I found it. I screamed for help. My voice echoed back to me in the small space, and I was surprised how much I sounded like a frightened child calling out. “Help! Please someone!” The elevator sunk and shook again.

A static-filled male voice came through the tiny intercom. “We see you. Don’t worry you are ok. We are going to get you down!”

I was not alone.

“Please help me.” My voice sounded like a whimper now. If I did survive this, my heart felt as if it might not.

As the elevator continued to shake, I had no sense of where I was or what floor I was on. The doors opened on the fourth floor and I automatically fled. The voice came back over the intercom “No, stay on the elevator. I promise you are okay. We are going to get you down.” I stepped back into the car. As the elevator doors closed before me, I questioned my decision. It could fall again. But, in a few seconds the doors opened in the lobby. I was safe.

Later, my partner Adam asked me why I had not just gotten off on the fourth floor and taken the other elevator—the “safe” elevator. “I don’t know,” I answered. It was a reasonable question. “I guess I just felt I had to trust.”

That Sunday, I am sitting on a bench at the end of my block facing the East River. I watch the murky brown water as it flows effortlessly between the concrete of Manhattan and the smokestacks on Roosevelt Island. I notice a beauty in the ripples and rhythmic movement as it glides. It is polluted, yet it still flows. What man has done to this river has not stopped its graceful purpose. It continues on as buildings fall and rise again around it, it continues on its way. As I watch, I let go and feel myself flow along with the currents.

I can feel the years of trauma—the illness—the fears, abandonments, the hungers and desperation. I let it all go in acceptance and I imagine it flowing down the murky river.

I can also see all the times I have not been there for myself and all the moments I have not shown myself compassion and love that I so deserve through all that I have been through. I have no control over what has happened or how others might have treated me, but I have often been my own worst enemy. I was often the one who forgot about me.

Later in the day, I read a piece in the New York Times about Jesus’ last words on the cross. It is Easter Sunday and the article is in the beliefs section. At the end of the article the writer writes of Alton Logan, a man who was wrongly sent to prison for 26 years. Another man had confessed to the crime, but that man’s lawyers chose to remain quiet until after their client died. They did not want to violate the attorney-client privilege. They left Alton in prison for years even though they had the information that would have set him free.

Mr. Logan spoke about the anger and abandonment he felt and how he ultimately surrendered. ”We need to trust that although God may be testing us, he never abandons us. We need to do what Jesus did when he said with his dying breath “Father into your hands I commend my spirit.”

This man, who had many years of his life taken away when others could have saved him but did nothing, saved himself in surrendering. He saved his own spirit. Once again, I am shown the graceful healing of surrender and trust.

“There comes a time when we must put everything back in God’s hands.” Logan added.

For me, that time is now. I have held on to it myself for far too long, and I am exhausted. I am still not giving up, but I am finally truly surrendering. It is the most loving act I have ever done for myself.

Julia Tuchman is a writer, Akashic Field Therapist and spiritual counselor. She is currently surrendering in New York City. Visit her at www.JuliaTuchman.com.

Recommit. Again and again and again.

I practice recommitment on a monthly, weekly, daily—even moment-to-moment—basis. I also practice forgiveness. I forgive myself for not following through on previous commitments, goals, and self-promises. I let go of recriminations, self-flagellations, self-denigrations and I move on. Every morning I wake up and reassess my goals, because each new day, each new moment, is an opportunity for creation. Creation out of blank-slate nothingness.

For years I have envisioned myself drinking wheatgrass every day, juicing veggies and sprouts every day, practicing yoga and meditating every day. My reality looks a little different. Most days I am at the computer, letting my pc addiction control me and trying to soak up as much person-to-person energy as one can squeeze through the airways since I have a chronic illness that severely isolates me. Every night I imagine I will practice yoga the next morning. I will put some distance between me and the pc. I will create a life that fills me.

As many of you probably know firsthand, it's just not that simple. But I don't give up. Ever. I keep re-imagining this life, keep recommitting to my vision. I take baby steps. I drink wheatgrass 4 days a week. I juice a few days. I stretch my body daily. And I never give up my dream. I keep striving toward the light. Because that is all I have to hold onto.

How Lyme Disease Saved My Life

by Virginia T. Sherr, M.D.

When Lyme disease saved me, I had no clue that anything was really wrong with me, except there were some weird things that kept happening. For one thing, as I told an allergist, my sinuses, in waves, felt funny, and for the last several seasons, I'd gotten morning headaches after the house heat had been turned on in the autumn. He and I agreed that the furnace must have stirred up a new allergy to dust. Time went by, and for general safety, it occurred to me that it would be wise to buy carbon monoxide alarms for my home. To my amazement, a properly placed CO alarm in the basement immediately clamored a warning.

When the oil furnace repairman arrived and pointed out a one-inch crack - a separation between the furnace and the chimney - I was dumbstruck that it had gone unnoticed. Interestingly, the weird waves of nasal stuffiness and the morning headaches stopped with the repair of this crack in the flue.

In my psychiatric office, I had been listening for years to a subset of patients who were exquisitely sensitive to everything chemical in their lives. Medicine that required a dosage of 50 mg for the average person was too strong at 12.5 mg for them. Any commonplace side effects were magnified, and therefore, the idea of taking medicine had become anxiety producing to them and, I remembered, to myself as well, for the same reason.

At that time, the concept of a connection between medication and chemical sensitivity due to Lyme disease was unknown to me. It only occurred to me when, many years after a red ring rash on my arm, I finally was diagnosed as having Lyme disease and began to evaluate carefully my patients who had symptoms of tick-borne diseases. I found the majority of them to have extreme sensitivity to medications.

It turns out that Lyme disease tends to interfere with the metabolism of the liver in such a way that chemicals are processed too slowly. And there is a failure of "T4 thyroid hormone" to convert properly into T3 hormone at the cellular level. The spirochetal infection causes a Wilson's syndrome - a lowering of body temperature - which makes all chemical reactions sluggish. This causes a backlog of molecules, which are imperfectly metabolized if at all and which then act as if the person has taken an overdose. The side effects, not the desired effects, became the patient's main focus, and the person usually wishes to forgo future trials of all medications.

In my case, extreme sensitivity to small amounts of carbon monoxide may have registered in the form of waves of sinus stuffiness and related headaches.

As a psychiatrist, I am aware that the unconscious mind often tries to alert us to our specific critical needs. For example, one frequently hears the exclamation: "I was dreaming of a waterfall, and it woke me; then realized I really had to urinate." I had lived in my home for decades without CO detectors, headaches, or nasal/sinus stuffiness. I have no doubt that my personal chemical sensitivity caused by Lyme disease caused me to respond symptomatically to trace amounts of carbon monoxide. Those symptoms started my quest for answers and perhaps led, subconsciously, to my choice of having the CO monitor installed. I had never consciously considered CO poisoning as a factor because I thought I had a state-of-the-art furnace. But it was the gap in the flue that gave me a break.

Like a canary in the mineshaft of old, my unknown chemical sensitivity may have acted as an early-warning system for invisible noxious fumes. The heightened awareness that something was wrong was akin to the noticeable effect of the "drug-sensitive" canaries that keeled over at the first hint of carbon monoxide, their sacrifice alerting and ultimately saving coal-miners from a toxic CO level in their workplace. In my case, my own sinuses, then the CO alarms led to the solution of the external toxic problem and ended the deadly risk of eventual serious CO contamination of my household.

No longer reluctant, I now am pleased to offer credit where credit is due - to acknowledge a debt of gratitude to the then as-yet undetected tick-borne disease that very likely helped to rescue me, while also changing my life's direction dramatically and forever.


Virginia T. Sherr, M.D. is a psychiatrist in private practice in Holland, PA. Her writings about lyme and related illnesses can be found on her website
thehumansideoflyme.net.

Tick menagerie: Lyme isn't the only disease you can get from a tick

by Pamela Weintraub


From the time National Institutes of Health medical entomologist Willy Burgdorfer first sliced open deer ticks from Shelter Island (off of Long Island) and studied them under the microscope in his Montana lab, he observed a glut of microbes. He traced just one of them—B. burgdorferi, the spirochete named after him—to the disease studied in Connecticut and called Lyme.

But right from the start he suspected that as far as the patients went, other organisms could be involved as well. Sitting next to Burgdorfer in a sun-drenched conference room at the Rocky Mountain Laboratories, I watched him remove from his ancient briefcase a handwritten chart that had withstood the test of time. Yellowed and creased, the paper listed microbes, six in all. "These," he told me, "are what I found in the Shelter Island ticks."

He would not give me a copy, but he let me look. I saw the spirochete B. burgdorferi on his chart, of course, but I also observed an organism, larger than a bacterium, called a nematode worm. (The worm's potential for disease, said Burgdorfer, was unknown.)

I took definite note, therefore, when Richard Ostfeld, an animal ecologist at the Institute for Ecosystem Studies, in the Dutchess County town of Millbrook, New York, told me he'd found nematode worms in deer ticks, too.

I paid even more attention when the finding was confirmed in Connecticut by University of New Haven microbiologist Eva Sapi and announced at the school's Lyme symposium in 2007. Neither scientist knew what to make of the worms, nor that they'd been observed by others before.

Whether nematode worms living in ticks will ever be implicated in human disease has yet to be seen. But if they are, says Sapi, then treating that infection could make all the difference in the world for a subset of patients who remain sick.

The take-home message is this: Ticks that carry the pathogen of Lyme disease harbor many other organisms, some known to cause serious human disease, others not traced to human infection or still undiscovered and unexplored. Over the next few weeks, look to this space for coverage of the coinfections accompanying or mistaken for the common epidemic disease called Lyme.


Pamela Weintraub is the author of Cure Unknown: Inside the Lyme Epidemic and senior editor at Discover Magazine. This essay is part of a series found on her blog.

She Speaks in Metaphors (I Understand)

by Julie Laffin © 2009

Winged Dead Cyprus Tree © 2008 Julie Laffin. All rights reserved.

Your Fluid Body is Frozen

My doctor (one of them) says my entire left side is jammed. It's like shrink-wrapped plastic wrap, tight and brittle but it should be like one large, flowing, unified teardrop. It should have coherence and flexibility and it should breathe. I guess this assessment could explain some things: why I feel like I'm constantly falling to the left, why when I get exposed to synthetic fragrances my face goes numb on the left side and not the right, why my left leg and foot often lose all sensation from diesel exhaust exposures no matter how small, why my left arm and leg will start to tremor spontaneously, why my left eye twitches and spasms randomly, why there is constant pain in my left foot and a varicose vein in my left leg and why I have a mass on the left side of my neck at the carotid artery and am constantly clenching the left side of my jaw. My fluid body on that whole side is frozen. It may in fact, at this very moment, be trying to launch a rebellion.

Going after Stealth Pathogens © 2008 Julie Laffin. All rights reserved.

Keep Your Eyes Off the Snake

Suppose I take a square of beautiful blue paper and tape it to the wall. Then I take a rubber snake and hang it in front of that beautiful blue square. The goal is to focus on the blue area no matter what the snake is doing. That's my assignment. If someone pulls on the snake I should be still, stay with the blue area and disregard the turbulent and frenetic energy of the snake. She says to me, "Don't be seduced by the chaos. The place of healing is not chaotic. Try to find the quiet, still place of gratitude." I try and try and try. Sometimes I can actually muster it.

Most days, finding that place is not so easy and I feel like I'm being forced to watch my health slip away, day by day, moment by moment. It's become like watching a movie, a slow torturous one at that. Not being seduced by the chaos was never my forte and now that my severe environmental illness is so easily triggered, I have the challenge of not getting emotionally and physically flattened by bizarre physical, sometimes unrelenting, reactions.

Last year I was diagnosed with advanced, neurological Lyme Disease and actually relished in this diagnosis. It seemed there was finally an explanation and possibly even a treatment or cure for a confusing, strange, and prolonged (over four years) lapse of health. My relief was short-lived when I found out the hard way, that because I am now so severely chemically intolerant, I cannot take long term antibiotics. With each trial of antibiotics I lost even greater chunks of the health I had left. So far, I have not been able to recover these long lost parts.

My Own Worst Enemy: Safe House Bathroom, Snowflake, AZ © 2008 Julie Laffin

The Monastic Life

She asked me if I could see any possible good in being forced away from society, being asked to give up social interaction and professional goals. But the list of losses is long: income and career, relationships, identity, artistic accomplishments, time with family, meeting my newborn nieces and nephews, celebrating holidays, simple daily pleasures, feeling good, freedom to move about in the world without getting severely ill. And faith. It's been hard letting go of faith in the process of life and the belief that when presented with options most people will do the right thing. I had to give up the notion that most people would rather go without their perfume than forgo spending time with me and that if they knew their use of lawn chemicals could send me to the hospital (an experience itself that could now jeopardize my life) they would find another solution for killing their weeds that did not involve nuking their lawns with agent orange delivered via high pressure hoses. In fairness, there are some that have. But I believe there is a special place in hell for the falsely pious in our midst that have no actual concept of brotherly love or compassion for the suffering of others. Since becoming disabled I have discovered a fear and loathing of those who are different I could never have previously understood had I not experienced it, had I not felt it being directed at me.

Which bring me to one more loss; loss of respect for people who would rather write me off as a neurotic, headcase than learn about a growing problem that afflicts a huge number of people worldwide.

Will any good come of having to move away from Chicago and learn a new way of being with my husband who has now been granted the thankless job of becoming my primary caretaker? Perhaps. I've learned I married a man with depth of character not easily matched by his peers. My love for my husband has solidified and expanded. In sickness and in health, gratefully he took it seriously. Is there anything good that will come of living in isolation and shedding all earthly desires, ambitions or aspirations? Hmmmm, let's see…I'm saving a lot of money (I no longer have) on dressing for success, dining out and foreign travel. And I never have to attend baby showers anymore.

On the Table

I went to see her for the first time wearing a gas mask and carrying a charcoal impregnated blanket to cover the table to keep myself from picking up any leftover chemicals on the vinyl covered exam table. But the mask had the wrong kind of filter (particle not VOC) and I had to leave because there was residual fragrance in the room. The silicone material of the gas mask itself makes me sick, but not as sick as fragrance or cleaning solvent residues. Pick your poison. I came for her to lay her hands on me and manipulate and heal me but I could not tolerate being in her office or the building. I could smell the air freshener drifting in from an adjacent office and the lingering scent of cleaning supplies. But she understands. She knows I'm not making it up. She knows I become easily impaired by things no one else will even notice. Twenty years ago she was like me. During medical school she was poisoned by formaldehyde and it took her a long time to recover. This gives me hope. There are so few stories of recovery in my little understood universe.

On the Floor

I have assignments to do at home. She had me get pillows and blankets and put them on my bedroom floor and lie down. Then she talked me through "the constant resting position." She said there is usually a position most people can assume which allows them to find a place of non-pain. It's a delicate balance sometimes struck by moving the foot an inch to the left or raising the neck up slightly to eliminate the curve it wants to otherwise habitually assume. I find it. Later I apply ice and heat. I feel a sense of hope and remember what it's like to be happy. I remember the good people in my life and all they do for me and how much they care.

You Are Going to Get Better

She doesn't seem like someone who will give up on me easily. Gratefully, there are no drugs to take and she has not tried to sell me a hefty bag full of herbs and vitamin supplements. She did suggest I purchase some magnesium from the health food store for relaxing the muscles on my shrink-wrapped left side and for warding off migraines. My homework for next week is to Google the "Alexander Technique" and check out the "Feldenkrais Method." It seems daunting since the simplest of yoga poses can throw my muscles into painful spasms for hours. (I should have just tried the gentle, vertical poses as my friend Lisa suggested). After being on this earth for almost fifty years, I am having to learn a new way of being in my body. Instead of me commanding it, it will be instructing me. Instead of whipping it into shape at the gym, I am now forced to bow to its whims and learn its (seemingly foreign) language. If I ever get to the other side of this illness, the cost will be complete and utter surrender. The reward will be absolute transformation.

Seeking the Root of the Problem © 2008 Julie Laffin. All rights reserved.

The Elusive Obvious

I've spent the past four and a half years scanning my past and culling for clues as to why I developed this condition. I have devoured article after article on the internet, consulted with and received treatment from the best environmental illness doctors in the country. I've listened attentively in chat rooms to the vivid details of other people's illnesses hoping to glean any tiny insight about what happened to many of us and how I might apply the lessons they have learned to my own situation and extend that information and hope to others. Here are the facts: I have a positive Western Blot for Lyme Disease, my health began to deteriorate rapidly after washing and drying several military blankets laced with mothballs in my art studio and a subsequent exposure to a potent odor neutralizer in a hotel soon after.

End of the Long Wash, Apache County, AZ © 2008 Julie Laffin. All rights reserved.

The Long Road Back

My husband tells me I'm a fighter and that I'm stronger than I think. Some days I believe him but on others I anaesthetize myself with fantasies of the next life or the past…the lovely, elusive and healthy past. Just recently I've been able to visualize a future in which I'm well and happy. Andy is there beside me. I sit myself down now each day and require myself to dwell in this mindset. There are gaping, dark holes in this newly evolving moving picture and I admit I can't see the roadmap in much detail. When I think I have the blueprint firmly fixed, precisely nailed down, it slips away. But I can see, feel and even revel in the promise of having arrived at the destination. There are sweet moments now where I can taste and smell transcendence. Today, I hunker down, set my sights on the blue square and resist the temptation of giving what's left of my ravaged self and dysfunctional immune system to the snake. Only recently, for the first time in four years I'm able to imagine a life for myself in which I've eclipsed my current state of being, a new commitment that has become my daily practice.


Julie Laffin is a Chicago-based performance artist currently working on transforming her work to embrace and transcend her health challenges.

Living a holistic life

by Joshua Rosenthal, director of the Institute for Integrative Nutrition


A holistic lifestyle is more than just eating organic foods and practicing yoga from time to time. It means paying attention to all aspects of your life: relationships, career, health and spirituality to be sure that you are living a life in balance. This might mean making some adjustments. The important thing to realize is they are not quick fixes.

Take a minute now to think about all areas of your life:

Relationships: Are you surrounded by people who stimulate you? Do your friends and romantic partner make you laugh and are they kind to you? Are there people you can be spending more time with or less time with? Make an effort to spend more time with those who fill your life with joy.

Career: Are you satisfied with your day-to-day job? Do you feel challenged by your boss and your coworkers? Do you feel that you are compensated well for your hard work? Are you happy more than you are stressed-out? Make a list of the things you love about your job and the things that you do not.

Spirituality: Do you have a spiritual practice? This can be anything from meditating to going to church on a regular basis.

Health: Pay attention to the foods you eat. Do you enjoy whole grains, fruits and vegetables every day? How often do you consume junk food? When you crave sweets write down what you are doing. Sometimes when we crave junk food it means that something else in our lives is out of balance.

Everyone could nourish their relationships, career, spirituality and health a little more. By nourishing all aspects of your life you will live a healthier and happier life. What are you going to do today?

Joshua Rosenthal, MScEd is founder, director and primary teacher of the Institute for Integrative Nutrition. He is a highly trained leader with more than 25 years of experience in the fields of whole foods, personal coaching, curriculum development, teaching and nutritional counseling. His simple approach allows people to quickly and successfully reach new levels of health and happiness.