Dear Normals

By Joel Montez de Oca via Flickr Creative Commons

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

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

Photo by Majd Mohabek via Flickr creative commons

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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The Myth of the Immaculate Gut

I’m so tired of cockamamie health advice that seems to start with the premise that we are nothing but a long, hollow tube beginning at the mouth and ending where the sun don’t shine.  Some presume, it seems, that keeping the tube squeaky clean at all times is the cure for every woe.  Juice fasts, enemas, and liver cleanses galore are prescribed for everything from acne to asthma.  Some of these treatments may have merit in certain situations, but I believe that total health depends upon more than an immaculate gut.

Something many people overlook in their quest for health is the fact that we are complex, finely tuned organisms, exquisitely sensitive to changes in our emotional and physical environment.  We have certain needs which are irreducible.  Physically, we need clean air, clean water, and adequate nutrition.  To be healthy mentally and emotionally, we need love, connection, and a feeling of safety.  These things are not negotiable, and any health advice that ignores these facts is likely to be harmful.

For example, the current juice fasting fad seems to be taking the world by storm.  Ask any confirmed health nut, including me unfortunately, if they’ve tried a juice fast and you’re likely to get a yes.  “If you’re clean inside, you’re green inside”, right? But the juice fast, or indeed any type of fast, ignores one basic truth: we need food.  I can already hear all the yes-buts. “Yes but, we are capable of going without food for a time, and fasting can be helpful, it’s even saved lives!”  I’m not an expert on fasting. Maybe there really are people who have turned their health around because of a fast.  What I have to go on is my own limited knowledge and experience, which tells me that fasting hurts.

Three years ago, I decided to try a juice fast.  Many of my friends were doing it.  I’d seen Fat, Sick, and Nearly Dead.  I thought it might be the answer to some of my nagging health problems.  My goal was to sustain the fast for at least five days, knowing that, with my blood sugar issues, I probably wouldn’t be able to go much longer than that.  By day three I was miserable.  I felt scary-bad.  My blood sugar was a mess and my adrenals were shot.  I gave up and decided to eat, hoping that I would be able to regain some equilibrium within a few days, but that was not how it went down.  The fast was the beginning of a long downward slide.  It set off severe chemical and food sensitivities which I now believe were a result of the adrenal fatigue.

Because proteins DRIVE the detoxification process, cleanses based on juices, fruits or vegetables do not make a lot of sense.  – 17 Signs of Impaired Liver Detox

The “liver flush”  or “liver cleanse” is another very popular treatment intended to purge the body of toxins.  Again, I’m sure many people have benefitted from these treatments, but it should be recognized that a treatment this powerful can also be potentially harmful.  The liver cleanse requires at least a partial fast.  No protein or fat is to be taken for more than 24 hours.  After 2:00 PM the day of the cleanse, no food is to be eaten.  This type of fast is not extreme and seems reasonably safe for most people.  But for those with blood sugar issues or adrenal fatigue, it can be quite difficult, even harmful.  Some treatment protocols, including Hulda Clark’s, specify that an overdose of magnesium in the form of Epsom salts must be taken.  This, apparently has resulted in cases of hypermagnesemia.  The end result of the treatment is diarrhea, and for some, vomiting, which stresses the system and creates electrolyte imbalance.

My experience with the liver flush was extremely unpleasant, even traumatic.  I think I would have been fine with the diarrhea and vomiting, that passed pretty quickly.  But I did experience hypermagnesemia, which was really scary.  As there are very good alternatives to the liver flush, I would not ever do this to myself again.

I’ve noticed that, in addition to seeming rather extreme, many popular natural treatments seem to completely overlook the mind/body connection.  There is mounting evidence that our thoughts have a direct bearing on our physical and emotional health.  That may mean, among other things, that it’s not just the carotenoids in the carrot that affect our health, but also our thoughts and feelings about carrots.  Sound far-fetched?  Take a look at this .

But the mind/body connection goes far beyond digestion. If your thoughts can affect your gut, you can bet that they affect every other part of you as well.  Epigenetics Shatters the “Central Dogma”

So maybe it’s time to rethink this puritanical urge of ours to purge our bodies of impurities.  Maybe it’s not what we can squeeze out of our bodies that matters as much as what we put into them.  Maybe if we nourish ourselves, body and soul, the trash will take itself out.

Miracle

Photo by Kaipullai(கைப்புள்ள)

Photo by Kaipullai(கைப்புள்ள)

I need a miracle.

I will have to jump into the deep ocean

of uncertainty.

Will you be there to catch me?

Will you?

I will have to fall back, arms spread wide.

Will you be there to catch me?

Will you?

Soon I will jump, I will fall.

Please catch me.

Will you?

 

I Can See Clearly Now

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I see now that this place is beautiful.  After 18 years, I see.

I was so homesick when I moved here as a young bride.  I wanted my mom.  I wanted pine trees and yellow bells and buttercups.  I wanted lakes to swim in and hills to sled down.  I just wanted to go home.

The more trapped I felt, the uglier this place became.  Ugly and mean.  Smelly and dirty.  Poisonous.  My ruin.  My hatred magnified every crime, bad smell, or dusty wind a thousand-fold.  I loathed this place.  How many times did I say it?

This place was not my ruin.  My hatred for it was. Those dark ugly feelings about my home. The ground I walk on. The earth that feeds me.  I hated that which nourished my body and could have nourished my soul.  I hated it so much that my wish to leave became a desperation, a frenzy.  And when there were no jobs and the sale of our house fell through, when staying became the only option, I disintegrated.  I fell completely apart at the seams.  My grief for my old dream of that other home was profound.  Eighteen years of striving towards my jail break had come to nothing.

That’s what it took to bust the tough outer coating of my heart-seed so that it could put tender root tendrils down into this soil.  I knew only love could save me.  The hatred finally melted and a veil was lifted.  Finally, I could see:

The lilacs and apple blossoms are heavenly.  The water on the canal sparkles, jewel-like in the sun.  The mallards and the rabbits, the robins and the meadowlarks are enchanting. The smell of sage on a rainy day, how the light and shadows play on the distant hills, the smell of river trees in the summer, and the distant snowy peaks make this place beautiful.

None of God’s creation deserves to be hated.  I may hate what man does to it, but I cannot hate the ground, the grass, the birds, the water.  All nature is capable of healing, and there is beauty everywhere for those with eyes to see and a heart to understand.

Hills and Valleys

Photo by Kristin Kokkersvold via Flicker Creative Commons

Photo by Kristin Kokkersvold via Flicker Creative Commons

The rollercoaster ride that is my life just got a lot wilder. A week and a half ago I took the plunge. I finally stopped taking Temazepam, which I had tapered very slowly over the course of 2 years.  The dose of medication I was taking when I quit was miniscule: 1/4 of a milligram.  Some nights I’m sure that even though I dutifully took my dose, the drop of water I consumed actually contained no medication.  It was time to quit this nonsense.  You would think that after a two-year turtle-taper down to a tiny pinch of powder, finally coming off would be anticlimactic. That’s what I thought.  Apparently I was wrong.

My body knows something is missing.  My muscles tighten around my head and neck like they are trying to perform a facelift without surgery.  Sometimes I feel like my head is full of helium, that it’s about to launch itself into the stratosphere.  And with the helium-head comes a feeling of altered perception you would have to experience to understand.  Some people say it’s like a bad acid trip.  I wouldn’t know, as I’ve never taken acid.  It really bothers me, though, that I know how that feels.

And the pain!  In an earlier post I wrote that I felt that I had been abused and beaten in my benzo prison.  The pain is why.  Searing nerve pain that darts across my chest and makes me afraid to breath.  A tight ache in my jaw that never goes away.  And hatchet-head.  That’s my nickname for the migraines.

I don’t like revisiting these symptoms.  It scares me.

So, I cope with techniques that I learned long ago when I suffered much more than I do now.  I use the good old affirmations, the same ones that pulled me out of my darkness back then.  I stretch and walk and meditate.  I breath.  I stop the mosquito-like negative thoughts that threaten to pull me into a pit of mental suffering.  I love on my kids, my sweet pup, and my husband.  I write and write, sometimes fast and furious, sometimes slowly and thoughtfully.  I take deep gulps of lilac scented spring air.  Yes, I will be fine.

And sometimes I really am fine.  Sometimes I’m on the crest of a hill instead of in a dark valley.  Sometimes I can’t help but grin, tears of joy making tracks down my cheeks.  I’m free!  It’s Spring and I have my whole drug-free life ahead of me.  It will be a good one, I know.

My Story

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

Metamorphosis

 

 

 

Metamorphosis

Free to Fly by Sid Mosdell via Flickr Creative Commons

Free to Fly by Sid Mosdell via Flickr Creative Commons

So much of my identity used to hang on the fact that I did everything gently, naturally.  I prevented health problems, I did not medicate them.

It was quite a slap in the face, then, to find myself on addictive medications – twice.  The first time they were prescribed, I was desperate and ignorant.  The last time I was desperate, but not ignorant.  I nevertheless did not want to take those pills; I was forced.  I feel violated.  I can never be the same person I was before the benzos.  They took things from me – my innocence, my reputation, relationships and my health.

I am so happy to finally be free.  But I feel like I was just let out of prison where I was raped and beaten.  Where they played games with my mind to drive me crazy.  Where they tortured me with sleep deprivation and isolation.  But because it was an invisible prison, nobody understands that that is why I’ve changed.  That is what caused the crying and the rages, the outrageous fears and the crushing exhaustion.  That was why.

I will never be the same person again.  But I can’t say that I want to be.  I’ve grown.  I’ve learned things that I might not have been able to learn any other way.  This is what suffering has taught me:

*God really does love me.

*There are some things worse than death.

*Quick relief comes with a hefty price tag.

*My mind is incredibly powerful, and I am stronger than I thought.

*Be grateful for all my blessings, both small and great.

*Being right and being understood is not as important as being a friend.

*As long as I concern myself first with what God thinks, it does not matter what people think.

*Never be afraid to share my gifts.  Maybe God gave them to me for a reason.

 

If I can remember those lessons, I believe there are amazing things ahead.  I’m a butterfly just emerged from its chrysalis, wings still shriveled and wet.  Soon, I will fly.

 

My Story

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

Gratitude Heals

Self Betrayal