The Horrors of Benzos – an Updated Version

May 3, 2018 by Gretchen Guzman

In the summer of 2008, I was battling the increasingly severe symptoms of asthma. At the time, I thought I had a lung infection that would just not go away. I now realize that I was experiencing the symptoms of environmental illness. I had become highly sensitized to the chemicals I was coming in contact with on a daily basis.

Not realizing the cause of my increasingly poor health, I bought a laundry detergent that was to change my life. Yes, I know that sounds melodramatic, but it’s completely accurate. This detergent is advertised as an “eco-friendly” brand, and as I was somewhat aware of the environmental issues surrounding the products we use, I bought it. As soon as I opened the bottle I realized that I might have made a mistake. The fragrance emanating therefrom was overpowering. But I powered on and washed all my family’s clothes in the smelly stuff. Soon, our whole house was enveloped in a chemical cloud, and my lungs were beginning to fill will fluid. By the time I realized that there might be a connection between my symptoms and my detergent, it was too late. I had developed pneumonia.

I called my Naturopath and asked for some supplements for pneumonia. The dose of the herb and vitamin combo she recommended was quite large, but I complied thinking it was the only way to kill the infection. I’m a very small person with a very sensitive system. The dose of vitamin A and Zinc that apparently cures the average person poisoned me. I began to feel extremely thirsty all the time. I could not get enough water, ever. I began to urinate enormous amounts of liquid every twenty minutes or less. I got myself in even deeper when I decided to treat the poisoning by trying to sweat it out, speeding up the process of dehydration already begun.

After about three days, I felt like I was going to die, so it was off to the hospital. There it was found that I had sweated and peed away all of my electrolytes. I was basically peeing out exactly what I had put in, pure water. I received IV fluids and was sent home.

That is when the real mayhem began. I believe now that the IV solution given to me was pure saline as opposed to Ringers solution, so it had no potassium. So the only electrolyte that got replaced by the rehydration therapy was sodium. I’m sure I was in desperate need of potassium. Severe potassium deficiency can cause panic attacks and insomnia, which is exactly what began happening to me as soon as I returned home from the hospital.

Terrified and clueless about what could be causing this, I went back to the hospital, where they diagnosed me with anxiety and sent my home with my first benzodiazepine, Ativan. They prescribed enough for about 5 days. I was so relieved to finally be able to sleep and to calm down that I decided to go to my doctor and get some more magic pills. She wanted to give me some Ambien, but I had heard scary things about Ambien, so strangely enough, I asked for Alprazolam (Xanax), not realizing that Ambien (a “non-benzodiazepine” or “z-drug”) and Xanax are both potentially very dangerous drugs. I was prescribed 1 milligram, much more than the paltry .25 mgs of Ativan I had been prescribed at first. One milligram; it seemed like such a small dose. I wouldn’t find out until much later that one milligram of Xanax is roughly equivalent to 20 mgs of Valium, one of the original and very much maligned benzodiazepines.

Xanax hits you like a Mack truck. As soon as it kicked in, I felt very dizzy and could no longer walk. All I could do was get in the bed and pass out. The next morning I was very tired and weak, but happy; so happy! I couldn’t understand why I’d had any reservations at all about taking sleeping pills! Everything seemed good and calm and mellow. Nothing was wrong. The world suddenly seemed like a much safer and nicer place to be. Unfortunately, this state was not to last very long.

I believe it was between 3 and 5 days later when I had my first real panic attack, not like those wimpy ones I’d taken the pills for in the first place. This was white-hot terror. It began with a hot flash and ended with me rocking back and forth in utter horror, tears running down my face, finally deciding to take my “sleeping pill” at 5:00 PM because my “condition” had returned and I “needed it”. It follows, of course, that I would need more medication if I was going to have to use the pills for more than just going to sleep. My doctor prescribed two more milligrams to be taken “as needed”.

As it turned out, the more pills I took, the more I needed. Eventually I was cutting them in half and spreading my daily dose of 3 milligrams throughout the day to avoid inter-dose withdrawal and the dreaded panic attacks. Three weeks after my original dose of Xanax, I realized that the pills were making me very, very ill. For the first time in my life, I felt suicidal. I was terrified. I stopped taking my pills, expecting a few nights of insomnia and then a gradual return to health. That is not what happened. What followed cannot even be imagined by a person who has never experienced it.

My memory of the first few weeks after I stopped taking Xanax is very hazy, like the memory of a really bad nightmare. For the first couple of nights I stayed at a friend’s house because I knew things were likely to be difficult, and I did not want to subject my three boys to what I knew I had to go through. I threw up all night long. Every morsel of food that I managed to swallow came up within a few minutes of it going down. My skin felt like I had been dipped in a vat of boiling hot oil, like I was being cooked from the inside out. My heart rate was usually between 110 and 140 bpm. I had convulsions, seizures, visual and auditory hallucinations, delusions and severe depersonalization and de-realization (feeling as if I was a different person and that nothing was real). I went 2 weeks without any sleep at all and became very, very suicidal. I had to be watched 24/7. My perception of time and space was distorted. I was angry. I had no positive emotions whatsoever for many, many weeks.

Acute withdrawal lasted for about a month. After that, my symptoms were somewhat less severe, though still miserable. I was always in enormous amounts of pain. The pain in my chest was so bad that it felt like I’d broken some ribs. In fact, I became convinced I had done so somehow, so I insisted on getting X-rays, which showed nothing. Due to the fact that my immune system had basically collapsed, the pneumonia I had only partially treated came raging back much worse than it had been before. I had to take antibiotics. Killing the infection caused me to cough so hard that I dislocated my ribs repeatedly.

Sleep returned gradually, first 2 hours, then 4, then 6 and 7. I had to sleep propped up with many pillows because of chest and shoulder pain, and because my rapid heart rate made me more uncomfortable and anxious when I was flat on my back. Every night I had to tell myself these words “you’ve slept through worse, you can do it.” And most nights it helped.

One year after my Xanax cold turkey, I was feeling much better, though not completely back to myself. I was left with lingering breathing problems and severe muscular tension. My ability to handle stress was greatly diminished. But I had survived and I was functioning relatively normally. I was immensely proud of myself for enduring and healing from such a horrific experience, and I thought I was much wiser for it. If somebody had told me at that time that 4 years later I would put another benzodiazepine in my mouth, I would not have believed them.

Incredibly, about 4 years later I actually did take another benzo after being hospitalized for insomnia-induced depression. But this time I was a bit wiser. Not a lot, mind you, just a bit. I at least was aware that I would need to taper off of it and must not go cold turkey if I valued my life.

The beginning of my taper was horrific. The first few unwisely large cuts had made me incredibly ill. I always felt like I had swallowed battery acid. I was on fire from my mouth all the way to my stomach. I was not sleeping again. I was in all sorts of mental and physical agony. I again experienced the utter horror of derealization and depersonalization. I was so dizzy and exhausted from insomnia that I couldn’t drive. I was bedbound for weeks.

That began to change after I wisely took some advice I received on a withdrawal support forum and spread my dose out a little. I also slowed my pace, holding my dose whenever the cuts became too difficult to handle. I gradually began to become marginally functional. As I got lower and lower in dose, I began to feel more and more stable.

By the end of the taper, which took an incredible two years, I was much healthier and almost completely functional. It’s been about 7 years since that time. Unfortunately, I cannot report that I’m back to normal. I’m mostly happy and functional, but I am much more prone to insomnia, anxiety and depression. I am much less resilient and more susceptible to life stress than before I ever took a benzo. I don’t know if this will ever change.

Here is what people need to understand: out of control benzo withdrawal can have severe, lasting consequences. Neither of my withdrawals were handled properly by my doctors. The first was an extremely dangerous cold turkey, and the second started out very badly because of the foolish advice of my doctor, who wanted me to complete my taper in two months. If I had listened to him, I would have been almost as sick as I was with the first withdrawal. Fortunately, I wised up in time to save myself any more agony and found a prescriber at a mental health facility who was willing to allow me to taper at my own pace.

Learning to taper is not effortless. It takes skill and knowledge. If anyone reading this needs to taper off of a benzodiazepine, I recommend carefully reading the Ashton Manual, which can be downloaded for free from the internet. From it you will learn the basics of what benzodiazepines are, what they do in the body, and how you can safely taper from them. Then present this manual to your prescribing physician. If he/she is not willing to help you taper safely, which unfortunately is incredibly common, find another doctor. It could mean your sanity or even your life.

Not wearing any perfume?

December 31, 2015 by Gretchen Guzman

My raw throat is closing, my heart racing, and my head fuzzy from the fumes emanating from my dear friend. She knows I’m very sensitive to chemicals.

“I stopped wearing perfume a long time ago after I found out that it makes some people sick,” she says.

What do I say?

What I’m thinking is this:

The fragrance in your laundry products is just as toxic as any perfume you would spray on. In fact it can be even more problematic because there is no way to control the amount of fragrance that ends up on your clothes and it is very difficult to ever get it to wash out. All of your clothes and linens are now drenched in it, so there is no way for you to decide to be “fragrance free” for a day so you can come visit me without making me ill. The companies that sell laundry products have been progressively ramping up the amounts of fragrance in their products because they know that it is not how well the product works that sells it, but how it smells. As a result, the products we have now are far more toxic and irritating than they were in the past. But this has gone practically unnoticed by people like you because you have become so accustomed to living in a cloud of chemical fumes that your sense of smell has become dulled. So you can’t tell that at this very moment your clothes are outgassing enormous amounts of the sick-making fragrance that you think you are not wearing. And now I’m sick.

What I say is: “Oh well, everything makes me sick now. Don’t worry about it.”

Because I love my friend.

But the truth is that my friend is putting herself at risk. Just because she does not have obvious symptoms as soon as she smells laundry detergent or other chemicals does not mean they are not affecting her. She has chronic health problems that could very well be related to the toxic personal care and cleaning products that she uses, but she will never be able to discern that this is the case unless she purges her home of all toxic chemicals so that she knows how it feels to breathe clean air.

So how loving is it of me to avoid telling the truth? I avoid it to keep the peace. But meanwhile my friends suffer and I suffer. So here it is. The truth:

Laundry detergent and fabric softener is not harmless. Neither is anything else that has chemical fragrance added to it. You may not have sprayed perfume on this morning, but that lotion on your hands is pungent. And your hairspray even more so. Your fabric softener-impregnated clothes compete with your lotion and your hairspray to create a toxic soup that makes me choke. And it’s terrible for you too. Now you know.

Next comes the inevitable question: then what can I use? Everything has fragrance. Well no, not everything. Most things. Yes, it’s hard at first to switch to a more natural and non-toxic lifestyle, but it can be done. And once you’ve got your routine down, it becomes second nature. Following are some links to guides on how to choose healthier products:

Environmental Working Group’s consumer guides: consumer guides

Debra Lynn Dadd’s list: Debra’s list

Wellness Mama’s tips and recipes for a non-toxic home: Wellness Mama

Dear Normals

February 1, 2015 by Gretchen Guzman

By Joel Montez de Oca via Flickr Creative Commons

Dear Normals,

I used to be one of you. So I get it, I do. I wore perfume and l loved it when men wore cologne. I used hairspray, perfumed lotion, heavily scented deodorant, and my clothes smelled “fresh” from the laundry detergent I used. My car smelled like artificial cinnamon from the air freshener I hung. I ate and drank what I wanted – mounds of pasta, fast food, desserts of all kinds, candy, sodas, espresso every day…and I loved it all.

If someone had tried to stop me then with facts about how I was harming myself, I imagine I would have resisted. It would have been hard to imagine life without junk food and chemicals. In fact, I didn’t even think of it in those terms. I had no idea where fragrance came from. I think I must have imagined somehow that it came from plants and flowers. And I knew I felt bad if I ate too much junk food, but a little now and then? Come on now! What could be so wrong?

But then I became ill, and everything I’d taken for granted about my life was up for reconsideration. I didn’t like feeling sick, so I started to read. I found some things out that I think I would rather have not known. It began to dawn on me that there was a sinister reality which had been until now hidden from me: the world is not as friendly a place as I had assumed, and remaining healthy in it would require me to buck the tide, to be different.

For many years I fought hard against the contraction of my world. I love to belong. I love freedom. So I often pretended that I was fine, that I was not being harmed by my choices or the choices of other people. I forced my body to get my attention with the worst kind of health crisis before I would listen to it. By that time, my world had contracted to the size of my bed by no choice of mine, something that may not have happened if I had voluntarily contracted my world a bit by eating healthier, avoiding unmitigated stress, and staying away from toxins. My insistence on total freedom in a toxic world essentially stripped me of all freedom for a time.

So dear normals, I do get it. I have not always been the strange, food allergic, chemically sensitive person you see before you now. I know what it’s like not to want to give up the things I like. I know what it’s like to want to look the other way when confronted with evidence about the harm my choices are causing. I know what it’s like to want to question the validity of that evidence because it just seems too awful to be true. But I can assure you now that it is true. My sick body is living proof.

Sincerely,

One Who Knows

The Evidence:

Dr. Martin Pall on MCS

Dr. Anne Steinemann on Fragranced Laundry Products

EWG: What the Chemical Industry Doesn’t Want You to Know

MCS Under Siege, by Dr. Anne McCampbell

Scent of Danger: Are There Toxic Ingredients in Perfumes and Colognes? – Scientific American

Semi-Sweet: Americans Should Cut Sugar by More Than Half, Says AHA – Scientific American

In Defence of Food, Michael Pollan

Also, see Recommended Reading

Canaries in the Coal Mine: Multiple Chemical Sensitivities, Myth Vs. Reality

December 7, 2014 by Gretchen Guzman

Photo by Majd Mohabek via Flickr creative commons

When people find out that I am sensitive to the chemicals in everyday products, I almost invariably find that they believe one or more of the many myths surrounding MCS. First, what is MCS? I’m constantly surprised by the fact that almost no one knows what I’m talking about when I use that acronym. MCS stands for Multiple Chemical Sensitivity. The Chemical Sensitivity Foundation defines it this way:

Multiple Chemical Sensitivity (MCS) is a medical condition characterized by a heightened sensitivity to chemicals. People who have MCS become ill when exposed to a variety of chemicals, many of which are commonly encountered in everyday life. Some people have only mild chemical sensitivities, while others have a more severe form of the illness called MCS.

Now that you know what it is, I imagine some of you are probably thinking, “Ooooh, I think I know somebody with that problem”. With a lot of help from some of my fellow MCS sufferers, I have identified some of the more common myths associated with the disorder:

Myth #1: People who say they have MCS really have chemophobia (fear of chemicals), anxiety, or depression and probably need psychiatric help (medication).

Most people who have MCS didn’t have any idea that everyday chemicals could be dangerous or cause life-long problems until they became ill. Many didn’t find out what was making them ill for a long time, going from doctor to doctor looking for a solution. Much of the time, it is not until a person begins to avoid chemicals that they begin to see the connection between their symptoms and the chemicals they had been exposed to. It is possible that some people with MCS develop chemophobia, but it’s usually long after they have had many bouts with chemical-induced illness.

Some people with MCS do suffer from depression, but evidence suggests that the depression usually occurs after the onset of the illness, which would also suggest that it often results from the misery and social isolation of chemical sensitivity, and not the other way around.

Also, MCS causes physical illness. It is known that physical illness is very often accompanied by mental illness. The brain is a physical organ which, like any other organ, can be affected by toxins and disease processes. Many of the toxicants which make us ill are known neurotoxins, which could also explain much of the anxiety and depression experienced by people with MCS.

Because of liver-function abnormalities often seen in people with MCS and a general hypersensitivity to many different chemicals, psychiatric medications are often not well-tolerated and are most definitely not a cure-all solution to this problem.

Myth #2: People with MCS should just take antihistamines or allergy shots so they can live more normally and not have to avoid contact with common chemicals.

Standard allergy treatments often fail with MCS. That is because the disease mechanism appears to be different from what happens in allergic illness. In a true allergic reaction, the immune system begins to tag harmless substances as harmful invaders. That sets off all the classic symptoms of allergies: sneezing, runny nose, coughing, hives, etc. Many people do react in that way to chemicals, in which case allergy treatment may be beneficial. But many others react in ways that are not typical of an allergic reaction. Often, neurological symptoms such as pain, dizziness, brain fog, slurred speech, and tremors are dominant. These types of reactions will often not respond to common treatments for allergies.

Myth #3: Common personal care and household products are mostly harmless and people with MCS are just hysterical.

Environmental Working Group would beg to differ. They have created several databases including the Skin Deep Database which exposes not only the ingredients of common products, but also their potential toxicity to humans. Many of the most commonly used household and personal care products listed received an F on a scale of A to F, F being a “fail”, or most dangerous. – Test your knowledge of cosmetics safety: 8 myths debunked

Myth #4: People with chemical sensitivities just have a strong sense of smell and are bothered by odors.

People with MCS can often react to odorless chemicals, so it’s not about the smell.

“… It should be clear … that chemicals in MCS are not acting on the classic olfactory receptors (15,16), but rather are acting as toxicants. This is opposite many published but undocumented claims that MCS is a response to odors. There is additional evidence arguing against the view that MCS is a reaction to odors. MCS sufferers who are acosmic, having no sense of smell, people who have intense nasal congestion and people whose nasal epithelia have been blocked off with nose clips can all be highly chemically sensitive (1,4). This does not necessarily mean that MCS never impacts the olfactory system. It simply means that MCS is not primarily an olfactory response.”

~ Martin L. Pall

Myth #5: MCS is a rare disorder.

Possibly up to 25% (depending on the study you read) of people in the US report symptoms of chemical sensitivity. It’s likely that most of the statistics on MCS prevalence are shots in the dark, as many people who suffer with MCS go undiagnosed. Many others who are sensitive to chemicals simply don’t know what it is that’s making them ill. – MCS statistics

Myth #6: MCS is controversial.

Dr. Ann McCampbell, in her article Multiple Chemical Sensitivities Under Siege, had this to say about it:

“Like the tobacco industry, the chemical industry often uses non-profit front groups with pleasant sounding names, neutral-appearing third party spokespeople, and science-for-hire studies to try to convince others of the safety of their products. This helps promote the appearance of scientific objectivity, hide the biased and bottom-line driven agenda of the chemical industry, and create the illusion of scientific “controversy” regarding MCS. But whether anti-MCS statements are made by doctors, researchers, reporters, pest control operators, private organizations, or government officials, make no mistake about it – the anti-MCS movement is driven by chemical manufacturers. This is the real story of MCS.”

The controversy surrounding MCS is not real. It is manufactured by chemical industry leaders with a profit-driven agenda.

Myth #6: “If I can’t smell it, it’s not there.”

If you put it on, ever, it’s there. Often we cannot smell our own odor because of something called olfactory fatigue .

Myth #7: The dose makes the poison.

Many people assume that “just a little won’t hurt”. But check out what Philip and Alice Shabecoff had to say about it in their book, Poisoned for Profit: How Toxins are Making Our Children Chronically Ill:

“Chemicals capable of disrupting endocrine hormones… are now understood to be a different kind of toxin. None of them follow “the dose makes the poison” dictum. Even at tiny doses they can alter the way the immune and endocrine systems operate, leaving the body vulnerable to sickness or developmental damage. Pthalates, bisphenal-A, dioxins, flame retardants, and some pesticides as well as long-banned chemicals persisting in the environment, such as DDT, are major hormone disruptors.”

Incidentally, pthalates are found in many fragrances, which also means that it’s found in many if not most fragranced products.

Myth #8: MCS is just an excuse to “opt out of life”.

I have spoken to and read about many people who have MCS, and not one has ever seemed happy about their isolation. In fact, what I hear most is despair approaching desperation. Nobody wants to be shut out of life.

Myth #9: People with MCS behave in contradictory ways. Sometimes they say they react and sometimes they seem fine. This must mean they are not telling the truth about their symptoms.

Symptoms of chemical sensitivity can wax and wane depending what level of health the sufferer is experiencing at the time. When a person with MCS is feeling particularly strong, perhaps because of their efforts to heal their body, they may not have such obvious reactions to chemicals. On the other hand, if the person is feeling run-down, it’s possible that their reactions will be more severe and long-lasting. Things that affect sensitivity levels include stress, sleep, nutrition, and whether or not they have been able to breathe clean air in recent days.

Or…maybe they don’t want to tell you every time they start feeling ill because they are tired of be told that it’s all in their head.

Myth #10: People with MCS just need to stop thinking about chemicals and symptoms and they will be fine.

It’s true that thoughts can be very powerful. But as I mentioned before, most people with MCS didn’t even know that they were being made ill by chemicals at first. Obviously, thinking about chemicals could not have played a role in the etiology of their illness if they didn’t even know to think about them in the first place.

Myth # 11: “Normal” people shouldn’t have to worry about the products they use if there are “safe” areas set aside for those with sensitivities.

It might seem like a good idea to provide an area set aside for people with chemical sensitivities at social events such as religious services, conferences, conventions, and concerts, but there are a couple of problems with it. We all would like to participate fully on social occasions. Segregation does not feel good. It’s frustrating and disheartening. Also segregating people with MCS away from others in a group tends to give people a false sense of having done the right thing. They often feel that because those with sensitivities have their “safe” area, that it won’t matter how much fragrance they use or what the building is cleaned with. It is very difficult to keep a small area of a building completely free of scent when the rest of the building is full of it. This is often due to common ventilation systems and the opening and closing of doors. It’s similar to the absurdity of setting aside non-smoking sections in restaurants. The non-smoking section may be slightly less noxious (or not), but it will never be completely free of the presence of smoke or tobacco residues.

Myth # 12: If my scents were making people ill, they would tell me.

People with MCS have often encountered so much skepticism and ridicule from family and friends about their symptoms that they may give up trying to talk about it. We sometimes find ourselves having to choose between educating the public about the reality of MCS and keeping our friends. Some of us suffer in silence. Others choose to try to quietly escape a toxic situation without making a scene.

Some cases of MCS are so severe that a reaction goes far beyond what might be considered typical. It is possible for a reaction to cause so much brain fog that the sufferer finds it difficult to articulate thoughts and may not be able to tell you that you are making them sick. Some reactions can include hearing loss, temporary blindness, and may even progress to the point where the sufferer actually physically collapses. This is extremely frightening for the sufferer and for those standing by.

Myths and Facts About Chemical Sensitivity

Myth # 13: Everyone should not have to change just to help a small minority.

The American Academy of Environmental Medicine had this to say in their Position Paper on Chemical Sensitivity:

It is believed that these chemically vulnerable modern-day “canaries in a coal mine” have an important lesson to teach us, if we would but listen – namely, that the hyperreactivity manifested by those with chemical sensitivity is an early warning sign of the alarming potential for eventual poisoning of our entire population by the numerous man-made chemical pollutants to which we are being continuously exposed. In other words, the fact that chemically sensitive individuals demonstrate exquisite vulnerability to toxic injury should serve to alert us to the disturbing reality that our modern industrial society, despite its many advantages, may ultimately compromise the health of us all.

As noted earlier, MCS is not rare. And many of the people who are suffering from it are unaware of what it is that is making them ill, so the actual number of sufferers is likely to be much higher than the numbers that are published. Also, many of the chemicals to which people are reacting are known human toxicants, many of them carcinogens. We would all do well to avoid them.

It can be much easier to change our cleaning, washing, and beauty routines than many people assume. Check out EWG Consumer Guides for help in finding non-toxic products.

Myth # 14: People with MCS seem to get sick from every little thing. They are over-reacting and need to loosen up.

Toxic chemicals truly are ubiquitous in the modern world. They are nearly impossible to escape. People with MCS are not getting sick from “every little thing”, they are getting sick from human toxicants. Often, symptoms are so severe that they cannot simply “lighten up”. They have to protect themselves from the consequences of toxic exposure. It sometimes happens that people with MCS will go on a trip to the ocean or mountains, breath fresh, clean air, and begin to feel almost 100% better. What does that indicate about the nature of this disorder? What does it indicate about our society that we should have to travel many miles away from population centers in order to experience normal health?

Conclusion

The truth is that MCS is a scary, cruel, and relentless thief of health, relationships, careers, and even lives. Yes, people really have died from it. It should be taken as seriously as any other chronic, possibly fatal illness. But it’s not. And most of that seems to have to do with the greed and political meddling of powerful corporations. It’s the story of Big Tobacco all over again. But this time it’s worse. Imagine what it would have been like if tobacco companies had found a way to weasel their cancer causing ingredients into so many commonly used products that it was nearly impossible to avoid them without educating yourself. That is what we have now with artificial fragrances and other toxic chemical ingredients.

Some people with MCS have been able to get better. But many others, in spite of persistent efforts and lots of money spent on healthcare, still suffer and must strictly avoid chemicals. But whether they are able to recover their health or not, most of them will never be the same. It’s like going through the looking glass into a bizarre world where nothing is as it should be. They will never forget what they have experienced, or the people in this world who are still suffering. To those people, I dedicate this post. And I pray for their recovery and for the world to awaken to this disaster.

Additional Reading:

Amputated Lives: Coping with Chemical Sensitivity

Multiple Chemical Sensitivity, A Mysterious Malady, Awake magazine

When Chemicals Make You Sick

Helping Those With MCS

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life, Discover Magazine

Multiple Chemical Sensitivity: Toxicological and Sensitivity Mechanisms

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How I Slew the Benzo Beast and What I Learned in the Process

April 17, 2014 by Gretchen Guzman

Freedom by Matheus Lotero

The nightmare is over. I have won my battle with the beast. I took my last dose of Temazepam, a benzodiazepine sleeping medication, on Sunday, April 13th, 2014. I will not be going back.

In case you are one of the many people who don’t know what benzodiazepines are, I need only say two words: Valium and Xanax. Most people know what those are. Some are even aware of the fact that they are both notoriously addictive and incredibly difficult to come off of. All benzodiazepines work in generally the same way, and all are highly addictive including my beast, Temazepam. (Benzodiazepine Withdrawal Symptoms)

I spoke a little of my struggle with Temazepam in my story. I want to share some of my journal entries from the past two years to show you where I’ve been and how much has changed since I first began to taper from my medication.

The Early Days

I started writing in my journal while in the hospital for depression. I spent a couple of weeks recovering from the hospital stay and allowing myself to sleep on the full dose of medication. I soon realized, however, that the medication was making me very ill. I would wake up in the mornings and feel like I had the flu. By the afternoon I was a bundle of nerves, although so tired I could barely get out of bed. I knew I had to taper, and I wanted off as quickly as possible. So I made a few mistakes in the beginning. Please forgive the incoherence of some of these entries. I was in deep misery and did not have all my faculties.

March 17, 2012

Tomorrow I get out of the hospital. I am absolutely grief-stricken that I was not helped here. I’m now on a benzo again and terribly frightened. This is what it took to convince them that drugs don’t work for me. A miserable week getting sick on drug after drug. My hell has only just begun.

March 26, 2012, 30 mgs

I’m so sad for what my family has lost, what more they will lose when I get off this drug. Tonight I start my taper. I have no idea what to expect. I’m trying to stay positive, but I’m starting to realize it might take much longer than I thought if I don’t want to be horrendously ill. Patience will be vital, even lifesaving in this case.

March 30, 2012, 28 mgs

Doc wants me to rapid taper which would basically feel like cold turkey…Today was very bad. I’m frightened. Withdrawal hasn’t let up much and it’s already near bedtime. I should not have made that last cut. It was much too fast a taper plan.

April 1, 2012, 28 mgs

Extreme suffering today despite holding my dose. 2 hours sleep last night. Severe depression/anxiety, burning muscles, nausea, sore, swollen mouth and tongue. Pain and enervation everywhere.

April 4, 2012, 28 mgs

Not more than 2 hours sleep last night…Been a horrid day. Tapering too fast was a huge mistake. I keep going back and forth between severe anxiety and crushingly painful depression. Jenny came today at just the right time. Jehovah always knows when we’ve had enough.

April 14, 2012, 28 mgs

MISERY! Throat is gagging, body burning. Only 4 hours sleep. Kids coming soon and I won’t be able to love on them…I’m in so much misery. Throat and stomach feel sandpapered. Chest is so tight. Coughing and gagging. Head pain was outrageous last night. So screwed…Burning all over body. Head pressure, blurry vision. Feels like I drank acid. Can’t stop twitching even though I’m dang tired.

That was the result of trying to come off my medication too quickly. 2 mgs in 2 days. That would have had me off within two months, and probably right back in the hospital. Although I understood that tapering was the reason for my misery, I still wanted off. I didn’t even consider staying on the medication. I slowed my taper rate way down to a doable 10% of my current dose per month. I had also heard that spreading out my dose throughout the day would help me to taper with less suffering. It took me a while to muster the courage to do it, as I was fearful that taking any from my night-time dose would cause even more sleep problems. As it turned out, just the opposite was the case. Spreading my dose out was one of the best things I did during the whole taper.

April 26, 2012, 27.5 mgs

I started taking med during the morning yesterday. I did it again today and will take another 2 mgs this afternoon. I don’t like the feeling, but it’s better than intense withdrawal. I slept okay last night despite being short 2 1/2 mgs of med. I’m doing okay this morning. Just slight nausea and wooziness. I hope this helps me come down at a more reasonable rate…Some numbness and anxiety creeping. Ear pain, some jaw pain. Not too bad. Getting some laundry done and did some dishes. Cooking lunch now.

May 15, 2012, 25.5 mgs

Woke up feeling really good today…It’s been a relatively great day. I got a lot of laundry and housework done, spent some time in the sun, never felt any anxiety or depression and physical symptoms are somewhat milder.

May 17, 2012

Just kept falling asleep in the morning. I felt pretty good today. I have some energy, no depression. Tiny bit of anxiety, but I try not to think too much.

My menstrual cycle seemed to make things much worse. I usually had a few good days during the month like the ones above. But I usually took a dive right before my period. I notice now that I did a lot of pep talking when I felt that bad. I think it really helped me to heal.

May 19, 2012, 25 mgs

The cottonwoods are blooming and I’m crying remembering the day last year when James and I drove out to Granger to the dinosaur park and to show him my mail route. The cottonwoods were shedding so much it seemed like it was snowing. It was beautiful and I was so strong and vibrant. I will be that me again.

June 16, 2012, 22 mgs

I was up at 4:00, too hungry to go back to sleep so I had to get up and eat. I finally got maybe another hour of sleep after that. I had to say my affirmations for a long time before I could get out of bed. So many scary intrusive thoughts. I will have to work hard at staying in the moment today.

The pain in my ear, neck and throat is bad tonight. It’s so tense. It’s been a challenge to keep from worrying. It’s all just a sign my brain is trying to readjust and heal. I will heal. I am getting better. Remember the woman who detoxed from her medication and was seizing and had every other conceivable symptom. She was reinstated and slow tapered. She only had mild symptoms the whole taper and remained relatively well after. She felt completely healed within one year of her last dose. That will be me. And even if not, I accept all that my body must do to heal itself. I will help it as far as I can and I will not fear. There is nothing to fear with Jehovah on my side.

The Long Hard Slog

By August, I was feeling much better, although I was still experiencing steep hills and valleys in my level of suffering. I had continuously used positive thinking, journaling, affirmations, and certain relaxation techniques to help me through the withdrawals, and those things really began to make a difference.

August 1, 2012, 20 mgs

“God gave us, not a spirit of cowardice, but that of power and of love, and of soundness of mind.” – 2 Timothy 1:7

I’ve been feeling sort of invincible lately, like I can handle anything. Maybe if I’m super careful and slow with my taper my suffering will remain minimal. Today was very good. I took a long walk this morning on the canal road. There were some ripe blackberries and the wind was nice and cool. I didn’t even feel overly tired after, and it was a long walk.

You can heal from any kind of mental illness. I will not go crazy. I will keep getting better and better.

I had to continually adjust my taper rate. If I started to get into a continual pattern of crashing and then having to hold the taper, I knew it was time to slow it down. It was not hard to do, as I was diluting my medication in carefully measured water and making tiny daily cuts. All I needed to do in order to slow my rate was to make smaller cuts or increase the intervals between cuts.

September 20, 2012, 17.50 mgs

I’ve officially decided to cut my taper rate in half. So now instead of crashing and holding all the time, I’ll just steadily take 1/2 ml every other day instead of every day.

I’m functional enough now to get meals, keep the house reasonably clean, pick up the boys after school and see to their homework. I still get frightened and depressed. And I’m tired to death of this never-ending taper, but I feel fortunate to be sleeping every night and be mentally and emotionally present for the boys.

Keeping my mind on positive things has been absolutely essential. My emotions have been so fragile throughout this taper that even the slightest bit of negativity or scary news would send my into a tailspin.

November 15, 2012, 14.75 mgs

I felt really stable today – emotionally anyway. Until I read a disturbing article about Candida. I hate that word so much – the other C word. I need to stay away from information about infections and disorders, it does me no good. Positivity is life.

November 19, 2012

I just destroyed my mood by tormenting myself with tragic You Tube videos. I don’t know what possessed me. Then, right in the midst of that, my son handed me a letter from school about a boy from his class who has cancer. Good way to destroy an evening. They are not us. We are fine. We have nothing to fear because not even death can defeat us if we remain faithful. I am so terribly raw right now.

I believe it was because of my extreme sensitivity that I continually came to understand important things about life during the past two years. I also became very angry about certain things. One day, I went looking for a place to walk by the river, which turned out to be very difficult. I finally did find a place, although I found out later that I had been trespassing. I had a wonderful walk, but it also made me think about the things that make me angry about how the earth is being ruined.

December 6, 2012

I hate what this world has become. How despicable that the very thing that Jehovah carefully designed as our perfect home of delight and beauty has been made into a toxic wasteland. This valley should be teeming with birds and coyotes, elk and cougars, beaver and porcupine. It should be covered in sage and bunchgrass with desert lupine, sunflowers, phlox, desert parsley, and astragalus. the river should run free and clear and be full of trout and bass that wouldn’t make you sick to eat it.

I feel like the whole world is a minefield of dangerous chemicals from which there is no escape. I feel as helpless as an Oklahoma farm wife watching with dread as another black dust storm rolls across the prairie, slamming into the house and filthing everything in its path including the small and vulnerable lungs of her children. There is no shutting it out. Life must go on even if pneumonia is the result.

The extreme greed and utter disregard for other humans displayed by the mega-corporations that are responsible for destroying so much of the earth, including our valley, is stupefying. It makes me sick that human beings are capable of it.

At one point in my taper, I took a huge nosedive. I still am not sure why it happened. I guess maybe I tapered too quickly. But I was frightened. I thought I would never be able to get completely off the pills.

June 3, 2013, 6.75 mgs

I discovered on Saturday night that I really haven’t tapered anything at all since 7.5 mgs. I hadn’t accounted for evaporation. I’m so sick. Saturday and Sunday I started using a covered jar and dividing up my dose ahead of time, which effectively caused me to drop from 7.5 to 6.75 mgs in one night. I don’t know what I thought was going to happen – that my body would just forgive me and behave accordingly? Did I think I could ignore the evaporation thing and maybe it would be okay? Well it’s not.

June 5, 2013 6.75 mgs

This too shall pass! I will follow the program (The Effortless Sleep Method) and hold until I’m stable again. I sleep so well, there is no reason to fear. I’ve done amazingly well throughout this entire taper. If I can overcome what I’ve already been through, I think I can weather a difficult week like this…

I need to make allowances for the possibility of feeling bad. I’ve been holding myself to a very high standard: total functionality. And I’ve mostly achieved it. But I’m feeling extreme fear right now about letting my family down again – extreme. The fear would go if I could just let go of the absolute need to feel stable at all times. ACCEPTANCE is the key to the least amount of suffering. My boys are not babies anymore, they can do things for themselves. It’s good for them to feel the need to care for themselves and others.

I simply tapered a little too quickly and now my system is very hypersensitive. It will pass if I hold and accept whatever symptoms come to me.

I’m going back to 7 mgs…

I struggled along like that for another week and a half before I got brave a tried a homeopathic remedy for the insomnia. I had stopped taking all supplements because of my hypersensitivity, and I was afraid to try anything. But I did it, and that’s what saved the taper, I believe.

June 16, 2013

I’m so depressed I don’t even know what to write. I feel like it’s the end of life as I knew it, bad as it was. It was at least tolerable. And most importantly, I was able to be a halfway decent mom. Poor **** keeps begging me to go camping as if nothing could ever be fun without me. It’s breaking my heart.

I’m almost always nauseated and everything I eat goes right through me. I can’t seem to tolerate food in any form.

I’m pretty sure I will be taking a dose of Phosphorous tomorrow morning.

June 17, 2013

I feel like my adrenals and stomach are blasted all to #$%^&. I can’t seem to eat any meat without reacting. It’s Monday morning and I have to get brave and take my remedy or I might never get off the poison. (took Phosphorous 30c)

2:30

The brain fog isn’t so bad anymore and I don’t feel like dying, that’s certainly progress. I’ve been able to take an interest in things. I’m very weak and heavy and get head rushes when I get up, but if the mental symptoms improve, I’m happy.

June 18, 2013

Nausea: gone

Diarrhea: much improved

Mood: volatile, but much improved

Energy: better, but on the edge of exhaustion

A few days later I had to take another dose at a much higher potency, and it helped immensely. I have since relied on Phosphorous to help me through the rest of my taper, and I believe I owe much of my stability to it.

I was not the only one who had a bad couple of years. I lost 4 friends and two Grandmothers in death. Most of them to cancer. I usually call cancer the “C word” because I’ve always had such a terrible fear of it. Well, I had to face that fear. I had to look it right in the face and stare it down. I had to love my Grandma, who had lung cancer, right up until that terrible beast took her life. And I did it. I think I loved her well. I hope she felt that I did.

August 24, 2013, 6 mgs

Grandma died last night.

August 25, 2013

I was very, very tired and depressed this morning. Suppressed grief. I’m frightened at the intensity of it. I was afraid to acknowledge it. It made me sick. I read an article about grief and how trying to appear strong is not healthy. A woman who was a doctor commented that she would let herself cry at the very beginning, but after that she would push it all down in an attempt to remain strong for others. It made her sick. So I deliberately took my Grandma’s picture and forced myself to look at it and remember. And sure enough, the torrent of violent emotions surfaced and nearly overwhelmed me. But once I recovered I did feel better. It is a relief, but it is also extremely exhausting.

This is what I wrote for my Grandma in the days following her death: Pioneer Shoes

Two months later my other Grandma, who had been suffering from the advanced stages of Alzheimer’s, and who I had been very close to all my life, died quite suddenly from pneumonia. I don’t have what I wrote during the week that I stayed with my mother after it happened. This is what I wrote after I came home:

October 20, 2013, 4 mgs

“Our problems are no match for Jehovah. Our extremities are his opportunities.” – Member of Governing Body of Jehovah’s Witnesses, Gilead Graduation

This has been one of the worst and best weeks of my life. Worst because Grandma died and I miss her terribly, and because my mother is devastated. Best because Jehovah gave me the strength of Samson so I would be able to do the seemingly impossible. I stayed with mom all week and took care of her in spite of my own illness and sleep deprivation, endured large amounts of chemicals because of our numerous visitors and other reasons, and actually made it through all of Grandma’s memorial and reception dinner without leaving once…and I made it. I’m okay. Just understandably exhausted and very sad.

October 21, 2013 4 mgs

I don’t have any Grandmas. Not even one…I’m so terribly tired. I’m getting by on pure holy spirit I think.

And as if all that were not enough, five days later my dog died.

October 25, 2013 4 mgs

Elsie got hit and died today. If I wasn’t living this I would never believe the amount of heartache and drama that have been my life for the past two years. It’s actually surreal. I have so much to cry about that half the time I don’t know which thing I’m grieving, or if it’s all of it. It’s been feeling like something has been pressing on my chest and my insides are raw. And sometimes I’m completely numb and in dumb despair. Sometimes I even forget and start to enjoy myself, but then another storm hits. Nothing helps. Nothing chases away the dull, heavy ache. Oh Jehovah God help me!

The Home Stretch

I started writing on this blog, Sound as a Crystal, in November 2013, the month after my Grandma died. It has helped me heal in so many ways. During the past six months, I have experienced more healing than I had in all the year and a half before it. I don’t know how much of that has to do with the self expression and how much has to do with the fact that I’ve been taking less and less medication, but I’m happy.

Sometime in early November I started to practice oil pulling. I had already been using my remedy, Phosphorous, on a regular basis. I had also been using bentonite clay packs to relieve some of my inflammation. These practices seemed to have a very beneficial effect.

November 11, 2013, 3.5 mgs

I feel good. It’s a little window. I didn’t expect ever to feel good while detoxing, but behold! It does work. I am making some progress. I continue to OP (oil pull) every day as well as use clay poultices. This morning I took an Epsom salt bath. I expected to crash from that at some point, but I did not.

In spite of all the good things I was doing for myself, I continued to struggle with negative thinking at times. I had and still have terrible chemical sensitivities which prevented me from doing many things. No parties. No malls. Even driving has been a challenge. All this caused a lot of social tension. (Read more: Behind the Mask)

December 12, 2013, 2.75 mgs

I’m so terribly self-conscious now, and am suffering from such low self-esteem that I just have to chalk it up to benzos. It’s so extreme. It’s not me. I know one of the symptoms listed for benzo withdrawal is low self-esteem. I just don’t remember feeling this way at any time before I took any pills. I think the heightened sensitivity unmasks fears and vulnerabilities that we usually keep well-guarded. And the more this happens the lower goes my sense of self-worth because looking at myself through someone else’s eyes I see a neurotic. I hate that word – neurotic. It’s a dismissive and derogatory word. Saying “she’s just neurotic” pretty much devalues anything she might have to say. Aldous Huxley felt that neuroticism is a normal, healthy reaction to a world gone mad. Maybe I agree, but I still hate the word.

This Spring has been wonderful. I started taking daily walks again, which has strengthened me. Many of my most troubling symptoms have fallen away. And now I am off my medication. The thing I have strived after for two long years is accomplished. I am now free to heal without the medication continually pushing back against my efforts. My most recent effort to heal involves the use of the Gupta Program, which is designed to help those with CFS, Fibromyalgia, and MCS to heal. It seems to be helping me already, as the next journal entry will illustrate:

April 14, 2014, .25 mgs

Yesterday was amazing. I went to my parents anniversary party. Once people started arriving I started to get really nervous and shaky. But I took my niece for a walk by the lake for a while and when we got back, I was fine. I was fine for the rest of the evening – no shakes or headache. It was amazing! It was surreal! I got to really enjoy myself in a big group of friends.

I was teary and so very thankful yesterday. I could hardly believe I had made it.

April 15, 2014

I’m officially medication free as of last night. I’ve waited two long, terrible years for this. I can finally move forward and heal more quickly and completely – no poison mucking me up.

So, if you’ve bravely slogged your way to the end of this, congratulations. And if you are in a situation similar to the one I have been in, take courage. We do heal. The body and brain are amazingly resilient. But we have to pay attention when it speaks. We have to help it along a little. Thoughts matter. They matter so much. Love God. Love yourself. Love everyone. Be good to the earth and it’s creatures. You will heal too.

Simplicity of Wellness

Photo under Creative Commons 2.0 license

I’m in the Fog

April 12, 2014 by Gretchen Guzman

Photo by Armando Sotoca

I’ve struggled all week with an absolute inability to write. Well, not exactly absolute. I can always journal. But for every blog post I’ve written that was well received, I feel a need to up the ante and write something better. I’ve reached critical mass now and seem to have overloaded my brain circuits, which is not hard to do given the fact that I’m still recovering from benzodiazepine addiction and chemical sensitivity. So I figured, why not write about it?

I know some of my readers know just what I’m talking about. So many illnesses result in this terrible, foggy feeling in the head. This inability to grasp simple things or to express any complex thought our emotion in words. This lack of inspiration.

It’s a tragic symptom. What is more terrible than to lose the ability to think clearly? What makes us us? Is it not, in part, our thoughts and how we express them?

I used to be smart. My thoughts were crystal clear and seemed lightning fast. Now I feel that my mind plods along like an aging donkey. It’s terribly ironic that I would have begun publishing my writing to a blog just at the time in my life when my mental faculties are at their weakest. It’s the syndrome that’s eating at my brain that made me want to do it. It gave me a terrible need to express myself, to find others like me. I just wish that both the impulse to tell my story and the ability to think clearly enough to do it had coincided.

I know that sometime in the near future, I will get my brain back and this blog will bloom. But until then, forgive my occasional lapses into profound states of mental stasis.

Photo Under Creative Commons License

Kids and Chemicals

April 1, 2014 by Gretchen Guzman

Like an ember glows bright red when blown upon, my son’s skin reddens in response to chemicals. His nose runs, his eyes become glassy, and his breathing labored. As if someone had slipped speed into his drink, his mind races and so does his body. This has been my son’s reaction to substances like fragrance, cleaning chemicals, and car exhaust since he was just a baby.

About a year and a half ago, we were forced to remove our boy, then 12, from public school. The state of his health had reached crisis level. Weepy, bloody, septic eczema plagued him day and night. Asthma left him breathless. He cried nearly every evening when we insisted he go to school the next day.

Public school, far from being a place of safety, can be one of the most dangerous places a chemically sensitive child goes. Things like regular fumigation for pests, application of lawn chemicals, use of strong cleaning chemicals and air fresheners in classrooms, and even kids who come to school with heavy fragrance hanging about them from fabric softener, deodorant, hair products, and cologne all contribute to the creation of a very toxic environment. No child should be subjected to these things. But for a chemically sensitive child, school is very often a nightmare beyond anything most of us can imagine.

Sick-building syndrome surfaced in the 1970’s when to conserve energy, many naturally ventilated homes, schools, and offices were replaced with airtight, air-conditioned buildings. Insulation, treated wood, volatile adhesives, and synthetic fabrics and carpets were often incorporated into these buildings and their furnishings.

Especially when new, many of these products release low levels of potentially harmful chemicals, such as formaldehyde, into the recycled air. Carpets add to the problem by absorbing various cleaners and solvents and then releasing them over a long period of time. “Vapors from various solvents are the most prevalent of indoor air contaminants,” says the book ChemicalExposures—LowLevelsandHighStakes. “Solvents,” in turn, “are among the chemicals most frequently implicated by chemically sensitive patients,” the book states.

While most people seem able to cope with the environment inside such buildings, some develop symptoms ranging from asthma and other respiratory-tract problems to headaches and lethargy. These symptoms generally disappear when the affected people leave that environment. But in some cases, “patients may develop multiple chemical sensitivities,” says the British medical journal TheLancet. But why do some get sick from chemicals while others do not? This is an important question because some who seem unaffected may find it difficult to be understanding of those who become ill.

– When Chemicals Make You Sick, Awake!

I never wanted any of my kids in school. But for my middle son especially, it felt wrong. It was like trying to pound him into a wrongly shaped container. It made him sore, out of sorts, and very sick. That’s why I was so relieved when my health finally improved enough to pull him back out. Just in time, too. I’m not sure he could have taken much more.

At first I didn’t even know how to begin to clean up the emotional and physical mess school had made of my son. We talked and talked. I put him in soothing baths of clay and Epsom salts. I gave him things to help his body heal and detoxify. I tried to teach him how to relax and think positively. But he remained fearful, depressed and exhausted until he saw the doctor, who informed him that he was not, in fact, dying. From that moment forward he began to rally. Although his rash had slowly been healing up until that time, he now made rapid progress in spite of the fact that we used almost none of the medicine prescribed for him, dramatically demonstrating that doctors can act as powerfully healing placebos.

My son’s travails must have begun in my womb. When I was pregnant, our home was brand-new and smelled like it too. It was making me sick. Imagine what it was doing to my tiny baby, developing in that chemical soup.

“We know the developing fetus is one of the most vulnerable populations, if not the most vulnerable, to environmental exposure,” said Anila Jacobs, EWG senior scientist. “Their organ systems aren’t mature and their detox methods are not in place, so cord blood gives us a good picture of exposure during this most vulnerable time of life.” –Scientific American, Tests Find More Than 200 Chemicals in Newborn Umbilical Cord Blood

Three months after my son was born, he developed his first rash, a little patch on his cheek. No big deal, right? Soon, a pustule formed near the red patch which broke and gave rise to more pustules until his entire face was covered in weepy impetigo.

The antibiotics seemed to clear the rash right up. Or had they? Just as we began giving my son his medicine, we left for a vacation on the Olympic Peninsula. As the rash cleared, I assumed the pink liquid was doing its job. By the time we arrived home, not only was the infection gone, but so was the rash. It was the first and last time for many years that the poor boy would have clear skin.

A day after our return, the rash reappeared, and for the first time it began to dawn on me that home might be the problem. Not only did we live in a brand-new house still off-gassing toxic chemicals, but also in a dirty, dusty agricultural valley, reeking of cow manure and drenched in pesticides.

On our trip, we had breathed some of the cleanest air available on planet earth, air that was continually scrubbed by frequent rain, rich in oxygen, and infused with calming ocean salt. I believed then, and still believe now, that it was the air that healed my son’s rash, not the antibiotics. From that time forward, I would continuously look for ways to move our family to cleaner air.

Why Living Near the Ocean is Beneficial to Your Health, Natural Health Ezine

Straight of Juan de Fuca where the air is pure

The cure for anything is salt water: sweat, tears, or the sea.

– Isak Dinesen

My son finally has clear skin. We have not moved out of our home, but most of the chemicals seem to have moved out of it. We still live in the dirty, dusty valley. But the combined effects of pulling the boy out of school, plus our efforts to use only non-toxic products, to feed our kids healthy, clean foods, and to keep the air in our home clean and free of most chemicals seems to have finally made a difference.

What a novel and wonderful thing it would be to live in a world where keeping our kids safe and healthy is easy, where chemical toxicants in common products are unheard of and all children are safe.

The Biodwell Blog, Holistic Home Ecology

Photo by Sharon Mollerus

Photo by Alex Thomson

Behind the Mask

March 29, 2014 by Gretchen Guzman

“We think caged birds sing, when indeed, they cry.” – John Webster

I’m very, very sensitive to chemicals; not just the ones everybody knows are dangerous, but the ones people use every day on their bodies and in their bathrooms and kitchens and on their sofas and in their yards. And what happens to me when I am exposed to those chemicals is not trivial. The sore throat and headache and heavy chest were uncomfortable, but not enough to stop me from living my life.

What stopped me was when I began to lose my mind. I don’t mean that I become overwrought and anxious. I literally lose my mind when I’m exposed to chemicals. I mean, I lose IQ points. I become stupid. I also lose my ability to function normally due to exhaustion and pain. Neurological symptoms such as numbness and tremors are also part of the mix. That’s not okay with me, and that’s why I avoid triggering chemicals.

The social implications are enormous. It’s not just that I have to be careful about what I use in the shower, or what I use to clean the toilet, although that’s part of it. It means I have to avoid other people who use the things that I can’t use. I can’t go into their homes or be close enough to them to hold a comfortable conversation. Public areas like places of worship and schools are very difficult places to be.

It seems like some people think, if they are aware of chemical sensitivity at all, that it takes a special kind of crazy to be this way. Because of the skepticism I’ve encountered and because I do not want to be defined by illness, I don’t like to talk about this. In spite of that, I often find myself doing it anyway, feeling all the while like I’m treading on thin ice. If I talk too long, eventually something will slip out that sounds like slap on the wrist:

“Yeah, fabric softener really does me in. I think it’s worse than some perfumes.”

My unfortunate victim looks away, searching for a graceful escape. “Oh really?” she says, “I didn’t know that!” all the while thinking, What a loon! I use fabric softener every day and I’m fine.

My face reddens as I quickly change the subject, mentally slapping my own wrist for creating an uncomfortable moment.

I have not had to stop meeting at my place of worship, the Kingdom Hall. This is because I am allowed to sit in a back room with my air purifier and my family. Behind a wall of windows, I am able to see and hear the meeting. It is a blessing. But I always wish I could be on the other side of the glass.

Sometimes I wear a mask to keep me well in toxic situations. It gives a measure of freedom. Without that little piece of carbon and fabric, driving our new-smelling car, exhaust fumes pouring in through the vents, would be out of the question. Using a fragranced public restroom would be a nightmare. Even visiting some of my friends is sometimes made possible by the mask, but that is something I rarely do. I’ll tell you why.

I hate the mask. We all wear masks. But the difference between the mask I wear and mask you wear is that yours is probably socially acceptable. In his book The Love We Share Without Knowing, Christopher Barzak wrote that “nothing is more real than the masks we make to show each other who we are.” The way we dress, the way we do our makeup or hair, and the expressions we wear on our face are all masks. Sometimes they reveal who we are, and sometimes they conceal, if that is our intention. But when I wear my mask, the only message I project to the world is one of fear. The mask says, “I’m afraid. The world is a dangerous place.” But that is not what I want to say.

“When we know Love, fear has no value in our presence. There is no pressure to perform and mask our humanity.” – E’yen Gardner

I don’t want to mask my humanity, I want to reveal it. Oliver Wendell Holmes said that ” without wearing any mask we are conscious of, we have a special face for each friend.” I want to reveal the special face I have for each of my friends. I want my friends to understand just how happy I am to see them. And just like I want to be able to look into the face of a friend and read his or her emotions and intentions, I would like for my friends to be able to see my face and read me as well.

“Masks were used to alienate and silence prisoners in Australian jails in the late 19th century. They were made of white cloth and covered the face, leaving only the eyes visible.” – Wikipedia, Mask

I would fit in here

Masks tend to frighten us, and for good reason. Faces reveal intentions. We cannot read a masked face, and for that reason we associate masks with bad intentions. Villains wear masks: Phantom of the Opera, Jason, Hannibal Lecter. I frighten children when I wear my mask. There is nothing worse than looking into a child’s eyes, seeing fear, and knowing that I am the cause. That alone is reason enough for me to leave the mask in my purse.

What is the first thing that comes to mind when you see someone wearing a mask in public? The first thing that comes to my husband’s mind is that the person is a thief or a terrorist. He becomes very uncomfortable if he has to be seen in public with me in my mask, and I don’t blame him. I’m uncomfortable being seen in public in my mask. Others have told me that their first thought upon seeing a masked person is that the person may have cancer or AIDS and needs protection from germs. I don’t want people to think that about me.

And as if all that were not enough, carbon filter masks just don’t work very well. They’re somewhat helpful for nuisance-level pollution, but they’re worse than useless in a truly toxic situation. I once thought that I could enter a feed store as long as I had my mask on. I was mistaken. The mask was no match for the overpowering pesticide fumes. I was sick for weeks, and it all could have been avoided if the mask had not given me a false sense of security.

When I forgo social opportunities that my mask might afford, it is not because I like to be alone. Something that has become more clear to me than ever before is that I love people. Forced isolation has taught me that. You tend to appreciate things far more when they are rationed. If I were I dog, I’d be Dug from the movie Up:

“My name is Dug. I have just met you, and I love you.”

But just like Dug did not like his “cone of shame”, I do not like my mask of shame, and I long for the day when I will never have to wear it again.

I don’t want to be this way. I’m not trying to make a political statement about chemicals. My body does that for me. I am an unwilling “canary in the coal mine” .

In my day-dreams I imagine myself surrounded by people: all my closest friends, my family, and new faces too. On my face there is nothing but a smile and between me and my friends there is no glass. I am free.

Helping Those With MCS, Awake! 2000

Good Health For All – Soon!

My Story

Photo by Patrik Jones

Photo of canary by tanakawho

Simplicity of Wellness: Self Love

March 7, 2014 by Gretchen Guzman

Self-love is one of the most difficult things I have ever had to learn. I am still learning. It is also one of the most powerfully healing things I have ever experienced.

“I’m so stupid!” How many times have you said that, or something like it? If you say never, I want to meet you because you are extraordinary. I don’t know many people personally who haven’t said it or felt it at one time or another. I used to say it constantly. I sometimes hated my body for the way it seemed to constantly fail me.

I didn’t know at that time what I was doing to myself, but I do now. I now understand the full implications behind ancient king Solomon’s words: “death and life are in the power of the tongue;” (Proverbs 18:21) I had been killing myself slowly.

It was when I came right to edge of my ability to endure suffering that I began to teach myself a new way of thinking. I had nothing at all to lose and everything to gain.

At first, I did not believe that anything I said to myself could possibly make a dent in my suffering. Everything I had tried so far had failed: herbs, vitamins, supplements, drugs…hospitalization. It had all failed. My body had become so sensitized that I was reacting negatively to everything I put in my mouth or on my skin. So what could words possibly do?

Even so, I tried. I began to change the way I spoke to myself. My mind was like a very frightened child in desperate need of love and affection. It needed a mother, and that mother would have to be me. I cherished myself as I would one of my precious babies. I reassured myself every day that I was getting better and better, that I was safe and healing.

At first it felt false. I went on anyway. Eventually I began to believe myself. Instead of automatic negative thoughts, I was having automatic positive thoughts. When I felt sick or frightened, I was able to calm myself quickly. “It’s okay,” I would say, “because I’m getting better and better. I am safe now. I am healing.”

I began to feel better, not just in my mind, but truly. My energy began to return. Pain decreased. I started having some days when I felt almost normal. It was clear to me that my fearful, negative thoughts had helped to keep me sick.

I am still sick. But the difference now is that I know I can and will feel better. And I know that if there are some things that never go, it will be okay. I know how to live well with pain. And I know how to love and forgive my faithful and patient body.

Photo by Miroslav Vajdić

Small Planets

February 1, 2014 by Gretchen Guzman

“It is wrong to think that bodily health is compatible with spiritual confusion, or cultural disorder, or with polluted air and water, or impoverished soil.” – Wendell Berry

I was a hunter with her spear. There in the distance was a the deer, ambulatory grace, caution personified. She would become part of me, and part of my family. All at once, I threw the spear true, and brought down my quarry. All of her would be used, not one bit wasted, and I was thankful for her.

This is how I would play as a child. What fascination the idea of living in a tribal society, migrating with my food supply, entirely aware of my dependence on the natural world and entirely in sync with its rhythms, held for me as a child, and still does.

Our culture is sick, and one of the most troubling symptoms of that sickness is its alienation from the natural world. Our existence has become almost exclusively artificial. It is screened off from the sources of our health and life. And the more artificial our existence becomes, the sicker we become. This is proof that we are not independent of the Earth, but completely dependent upon it not just for the raw materials which we use, but for its energies, its rhythms, its sights and sounds and smells. In short, we need to live close to earth, and we need earth intact, unpolluted.

Each human is a microcosm of our environment. We are like small planets, reflecting almost exactly the condition of the larger planet which we inhabit. Dump toxic waste in our waterways, and the tiny oceans of our bodies will contain that waste. Belch filth into our air, and the filth will sully our bloodstream. Spray neurotoxins on our food, and those toxins will pollute our cells.

I have a very deep, visceral grief connected with these things. The home that was very carefully crafted in all its detail to be a self-sustaining, life-giving system, has itself become so compromised by the activities of humans that there is actually doubt not only about the health of the air we breath, the water we drink, and the food we eat, but about its continued ability to sustain life at all. The very things that should give life and health, sometimes do the opposite. Going outside for a breath of fresh air often instead results in a lungful of diesel fumes and a head that aches. In addition to hydrating the body, drinking a cold glass of water may also dose us with chlorine, fluoride, rat poison, and prescription medication residues. Eating a deliciously crisp and sweet apple not only provides nourishment, but also a hit of malathion.

It’s very sad that even if a person wanted to reject this culture which is so alienated from its life sources and find a place in the wilderness to set up camp, that person would still not be any safer than the deer who end up with tumors from chemical drift, the starfish that are dying of a mysterious disease all along the Pacific Coast, or the ring seals and walruses that are dying in Alaska from something that looks suspiciously like radiation poisoning. Humans have done a pretty good job of spreading their malignant influence all over the earth.

But humans don’t have to be a plague. God made us guardians, and I have confidence that in the future, that is exactly what we will be.

Photo By NASA Goddard Space Flight Center Image by Reto Stöckl [Public domain], via Wikimedia Commons