|
Dear
friend, relative, or Person with ME/CFS
My name is Max Rivers. I contracted ME/CFS in January 1994, and
then was cured two days after taking Hanna Kroeger's homeopathic
B.E. Kit (B. E. stands for Bar Epstein - being German, Hanna often
reversed words).
I feel a deep responsibility to share my experience about this wonderful
remedy with other PWC (People With CFID's). As a computer programmer
(and not a homeopath) all I can really do is pass on my own personal
experience.
Here is my story:
For some reason, having no arms wasn't it, really, though looking
back it's hard to believe that that part of the hallucination didn't
startle me. It wasn't even being required by the Nazis to crawl
around on our belly's, never standing up, or doing anything not
allowed. It was the incredible complacency of the others. No one
else seemed to care that we were in a concentration camp on the
island of Jamaica, at the hands of a Nazi Commandant. Well I did.
And I secretly plotted to get away by sea. I didn't care if I got
caught and killed. I wasn't going to live the rest of my whole life
as a prisoner.
As it turns out, of course, I didn't have to because after four
days the fever broke, and I found myself tangled up in soaking sheets,
stale with four day old sweat, but safe in my bedroom. And wiped
out.
A few days later, when my energy didn't return,
I thought it was odd. A month later when I still felt exactly as
I had the day my fever broke, I realized that I was really sick.
So I gathered myself up, like so many broken pieces of a puzzle,
like too many books to carry at once, and drove to the doctor's.
Within a few minutes he had his diagnosis: Chronic Fatigue Syndrome.
I had CFS.
Being diagnosed with Chronic Fatigue is like moving
into a hospice. Or like having HIV. One minute you are too tired
for words, and the next your whole life is changed by three words.
Oh, it isn't fatal - but it is "incurable." Or at least
the doctors don't even have a treatment for it yet. On my way out
of the doctor's office, I grew heavier with each step I took. No
one knows how to stop this. It could just go on and on.
People look at you differently, with sad eyes, but
fearful and a little frantic. I saw them looking in at me, but I
was too tired to really care. And I was too scared. I never really
let myself feel just how scared I was. I let the fog of CFS protect
me from the harsh reality of CFS. I knew in some vague way that
if I ever actually looked the disease right in the face, I would
shatter into pieces like a glass dropped from a great height onto
a hard, white tile floor. Pieces of me flying off under things,
never to be returned. So instead I stayed vague about it. Calm and
soft-edged, and fuzzy.
That was alright for interacting with the world,
but on a personal, day to day level, my body just plain hurt. It
ached, like staying up and staying up and staying up, till you just
can't keep your eyes open, and then about an hour after you finally
fall asleep the alarm goes off and you have to get up to drive across
country and your head is full of cotton and your arms are heavy
as lead, and your feet are too far away to feel, and light knifes
through your eyes, and your body aches like the color red. Except
that you just had twelve hours sleep, and it still feels just like
that.
And if you rest, you feel worse. Groggy and cob
webs that you shake off with a huge effort of will, which only gets
you back to aching like the color red, and knives in your eyes.
At first it seems to everyone, and even you that
all you need is an effort of will to get above it, but like quicksand,
that is just what it wants you to think. You see CFS has a Nazi
Commandant that doesn't want to punish you, but what can he do?
He has to make an example of you and so he punishes you for your
every effort, with a flu-like illness that comes on like lightning,
fever and chills and headache and bone ache for two or three days
for just the effort of will to disobey him, and the rules change
as time goes by, getting stricter and stricter until you aren't
allowed to do anything at all, and still there are violations that
get punished and it feels like the ceiling gets lower and lower
until if you stand up tall, that is a violation, and down you go.
I became like one of those outdoor thermometers
with some blood red substance which was sitting down there at the
bottom, just below my belly, and it was my energy. And I could raise
it up, pulling at the liquid with the fingers of my will, raising
it up like trying to lift a rock with just your eyes, straining
up and up until the blood red liquid would stain the white, papery,
dry place that was my mind, soaking it up with a thirst that drained
my last efforts after such a short time. At first all I could manage
was half an hour of not quite clear headedness, but after a few
short months it was more like half a minute before the Commandant
would come and pull me off the fence and drag me back to be punished.
And I would lie there, sick and sweating, confused
inside of a forgetfulness that is so complete that after a while
all it is about is forgetting. But the saddest part was when my
mind began to go. It's funny that the feeling was just numbing sadness,
but that's what it was. My doctor even said that it was just part
of the disease, that there would likely be some Alzheimer's-like
forgetting, and that it would go away when the disease did. But
he didn't mention the sadness of being without my mind for months
and months and months.
And everything else is just out of reach: people
and work and joy and interest. Books I can't read anymore cause
my eyes don't focus without effort and the Commandant won't allow
that. So I lie there, under water trying to rest through all the
exhaustion, when a huge steel bell sounds piercing and sudden in
one of my ears, more and more frequently, but my arms are too heavy
to raise them to cup away the sound, which doesn't matter anyway,
cause the sound is inside my head, it is my exhaustion ringing like
a bell every time I go too far.
And every now and again, just to exercise my sense
of irony, I get up and walk around. It isn't that you're dizzy,
it is just that you are now past the point where the effort to balance
can be ignored.
Once as I walked down the hall, one hand on the
wall to make it easier, my lover came around the corner yelling
at me that I am not making love with her frequently enough anymore,
and at first it seems so ludicrous, like raging at me for not enunciating
my Japanese, when I don't even speak Japanese, that I am relieved
and grateful to her for so great a departure from the hell I have
been rotting in, until a few weeks later when she takes a lover
who "satisfies her needs" and I realize that I am not
to be spared anything that this disease has to offer, and I realize
that I would probably be devastated, if there was any more room
for devastation, which there isn't.
At this point it is five or six months. Work isn't
even remotely possible, my lover has left, friends are all freaked,
family is worried and require constant soothing, so basically it
is me, alone with the Commandant. This is not like me, facilitator
of men's support groups for 15 years now, so I as soon as I hear
about a CFS support at Holyoke Hospital, even though it is farther
than I have ventured out in months, I rest for days ahead of time,
and make the 40 mile trip. What I find there horrifies me. Men and
women my age, with stories just like mine, type "A" baby
boomers, but most of them are six or seven years into this disease
thing - that long or longer since they worked or played and since
their lovers left. That long or longer since they gave up. A room
full of waiting. Only the Commandant seems pleased. Everyone else
seemed devolved, some - the lucky ones, had become snails, the hard
shell of doom wrapped around them like blankets, their soft, out
of focus faces peaking out radiating weakness. The worse cases had
become cocoons. CFS had wrapped itself around them, and wrapped
and wrapped, and now they waited, patiently, as their bodies softened
and lost definition, changing into something else, shrouded in disease
and given over to the process, wherever it may take them.
As I walked outside, in the parking lot, my humanity
stood before me like a little girl, wide-eyed as the crowd of us
were marched off to the gas chamber. Her eyes asked the silent question,
"What about me?" And as her mother, marching right along
side of her to the same destiny, what was I supposed to answer?
But an answer was required. This child before me
was my last connection to being human. I was about to be dragged
into the insect world, snail or caterpillar, it didn't matter. I
was days away from the end of my life as a human. And there didn't
seem to be anything I could do about it.
I have always been a hopeful person. When I got
home, I saw my hope waiting for me on the kitchen table. It was
like some gadget that I knew I owned, but I couldn't remember how
to work. Or maybe it just needed batteries. I hadn't lost my hope.
I just didn't know how to work it anymore.
It was time to act.
A few days later found me at the retreat center
at the top of Mt. Temenos, near my home in western Massachusetts.
There were 15 of us, all men. We were there to do a sweat lodge
- an intense Native American ritual for making contact with the
source of your own spirit. I was going to ask that spirit what to
do next. I needed guidance. From someone besides the Commandant.
The men were great (men are great, aren't they!).
They brought me my meals, and built the lodge without me. Let me
sleep in the main building, and doze off any time I needed to.
I was terrified about the lodge. They are very demanding,
physically, and I suspected that the Commandant would torture me
right well when I returned. But I noticed that he was not present
on the mountain, and I was determined to ask my question, if not
for my own pain, then for that little girl's.
Inside the lodge, as the air heated past endurance,
my skin began to vibrate with virus. Screaming that couldn't be
heard was crawling over and under my skin, but I was used to that.
The unusual part of the experience was deeper inside. I felt calm
in there, and healed. And that was the first message from the spirit
of the lodge.
The core of me was not affected by the disease.
There was a rich, healthy core of meat that was my center, that
was untouched, and unchanged. My humanity sighed a collective sigh,
and settled back into my core. A human ever more.
"What can I do to stop this train from running
me over?" I asked. "What is it that you want me to know,
what must I learn, look at, see, say, understand? "I will do
whatever it takes. I commit to you and to me and to this process
fully. I commit to my soul."
This was not the first time that this was required
of me. Fourteen years ago when I turned 30, my soul announced that
it had a feminine side, and so I rented the bridal suite at a hotel,
and bought myself jewelry and the most expensive dinners on the
menu. I wined and dined my female, as if she were another lover,
and I returned a changed man, with a new name, Max Rivers.
And again on my Fortieth, after a week of silence,
on the moment of my birth, 2:20pm, I was told to learn to dance.
I had never danced in my life, and that Friday, and every Friday
for two years I went to Dance Friday and I learned to dance, and
that I had a body, and a spirit.
So the spirit which spoketo me through the hardship
of the lodge knew that all it had to was ask, and I would meet the
answer.
And the message came. A name.
"Hanna."
After the lodge I was lying naked on the earth.
The men ran to the pond and dunked themselves in the icy water,
screaming. And then they came back with buckets of water, and dowsed
me as I lay in the, now mud.
Hanna.
Suddenly I knew what it meant. A women who ran a
health food store in Boulder Colorado, where I had lived twenty
years ago, had healed me a few times when I had minor ailments the
doctors couldn't figure out. I was to go to Boulder again.
The next weekend I was at a gathering of friends,
and a woman I barely knew came up to me and angrily shouted at me,"I
want you to know I don't believe in these things!" "What
things?" I asked.
"Every time I look at you I see mountains in
the background. What is that!?"
"I am going to Colorado to be healed,"
I whispered.
"Well go already," she shouted. "I
don't believe in these things. So go already!"
So the next day I bought a one-way ticket to Denver. I didn't even
ask about the fares coming back. I would handle that when I got
better. My soul likes one-way tickets. It shows commitment.
I also didn't call Hanna. She had been a little
old lady, 20 years ago, and I was afraid she might be dead and gone.
But I knew better than to call. I had to go and find out.
And I didn't call Hanna for 21 days after I got
there. The CFS specialist I had gone to see put me on a 21 day supported
fast, and so I only drank powdered rice protein and water for 21
days. And I read "Care of the Soul." And I prepared myself
for getting well.
It was a fascinating time for me, a type "A"
person, to just fast for nearly a month, and not do anything. I
couldn't work, or even think really, and I could only read about
a paragraph at a time, and the rest of the time I just sat and watched
the mountains and felt my body. Twice a week I went to Course in
Miracles classes, and once a week I did Tai Chi, and that was it.
The Commandant got bored and turned his attention elsewhere.
Before I left Shutesbury, I had a healing session
with a Reiki healer. She told me that "virus" was the
plural of "Viron", the individual entities that make up
an illness. That they weren't malevolent. They were just a particular
kind of being that liked a particular kind of habitat, and I had
become the perfect summer cottage for a colony of CFS virons.
I thought a lot about that. In truth, I had vacated
my body a lot, this lifetime. The time I didn't spend in my mind,
I was in spirit. My body was a vessel to me, like a Chevy Van. I
felt very clearly that I had left that big sliding door on the side
of the van open, and had walked away for so long, that the virons
just moved in. And when I came back, one day, there was just no
room left for me. I was the victim of an accidental sublet.
On the evening of the 21st day of the fast, I found
a scrap of paper that someone had given me with a number they'd
had for Hanna several years ago. I called it and found out that
Hanna had a retreat center about five blocks from where I was staying,
and that she was teaching a five day self-healing workshop starting
that night - in about two hours. So I packed one bag of clothes,
and a friend drove me over to the "Peaceful Meadow's Retreat
Center."
Just as we drove up, Hanna was walking out the front
door towards us. She looked exactly the same - a little over four
feet tall, with the thickest German accent I've ever heard. She
looked up at me as I got out of the car and cackled, "What's
the matter with you!" "I have Chronic Fatigue," I
said to her, dejectedly. "Chronic Fatigue?" she screeched,
"Oh that's no problem. Two days." And she grabbed my hand
in hers and dragged me, astonished and relieved beyond words, into
the chapel, where she went behind a curtain and came out with a
white box labeled "B. E. Kit." She put the box in my left
hand, and reached into her apron and pulled out the same pendulum
she'd used so many years ago when last I'd gone to see her. She
held it over the box in my hand and it swung wildly. "See!"
she screamed, "Two days. No problem. Now get yourself settled
cause dinna is in a little vile, and zen ve get started." And
she hobbled off quickly, just like some character in Alice and Wonderland.
Up in my room, I opened the box. It contained a
bottle of homeopathic liquid, and two jars of green, herbal pills,
and a sheet which said to take 15 drops, and 2 pills from each bottle
with each meal for 2 weeks.
I took my first dose right then, and went down to
dinner. Classes went far into the night, and all day the next day,
with me taking a dose with each meal. During one class, I got very
fatigued, and went to the back of the room to lie down. Hanna, who
was lecturing at the time, stopped and ran back towards me. "I
don't like this, this is not good," she said to the class,
as if still part of her lecture. She had me sit up, and ran her
pendulum over different parts of my body. "See?" she said
(though none of us could see anything expect her pendulum swaying
this way and that) the energy goes out here," she said holding
the swinging pendulum in from of my face, "but does not come
in here," she held it behind my head, and I gathered that it
stopped moving. She "tutted" like a sad grandmother and
held my head in her hands and prayed to Jesus to help me. "There."
she said with finality, as if something obvious had just taken place.
"Now it is okay." And she when back to her lecture. I
sat up, still feeling exactly as exhausted as I had a moment ago,
but somehow buoyed up by her faith. Had something happened? I shushed
my mind into quietness, and chose Hanna's confidence over my fear.
For the time being.
That night, during the evening lecture, one of her
advanced students was teaching the class, and Hanna sat off to the
side, watching. Suddenly she stood up and walked right in front
of the lecturer, and grabbed my hands in hers and said," So.
You have had the courage to look your truth in the face. And so
you will be healed. Yah." The two women students on either
side of me burst into tears, as Hanna hobbled back to her seat and
looked angrily at the lecturer as if wondering why he had stopped.
That night, at about two in the morning I woke with
a start, so full of energy I didn't know what to do with myself,
so I got up and went downstairs, and then outside to sit by the
pond and look at the Rocky Mountains silhouetted against the blue-black
sky. I suddenly knew that this was the last night that I would ever
have Chronic Fatigue, and surprisingly, the thought saddened me.
I sat quietly, listening to that feeling, and I
realized how much room CFS had made in my previously too busy life.
It had given me almost a year to do nothing but pay attention to
myself. Something I never would have done for myself without it.
And it had softened my life. It had softened me. And brought me
down, from too great a height, back to where I touched the earth,
and the earth touched me. So I sat with the mountains, and the softness,
and the gentle earth, until the tiredness rose up gently, like a
small wave on a quiet sea, and I went to back to bed, for my last
night with CFS.
I awoke the next morning as I had every morning
for months, more tired than when I went to sleep. The interlude
during the night gone, like a dream or a fairy tale. Mornings were
always the worst, because it seemed the one thing that helped with
the tiredness was eating, and morning was the longest stretch I
went without food. So I took another dose of the B. E. Kit (which
by this time I'd learned stood for Epstein Bar - being German, Hanna
often puts words in different order than we do in English) and went
downstairs to start another day. Breakfast, morning classes and
another dose with lunch, and still no change. After lunch we were
in a class about crystals, when it started to happen. I felt it
at first like rushes, coffee or fear or joy, I couldn't tell which,
so I got up and went to experience it alone and with my full and
undivided attention.
Everything seemed to stand still, as if the world
was just a picture, and I was an actor on stage with a backdrop
of the Rockies and a pond for scenery. And then it happened.
I could suddenly feel my reach go out, all the way
out into the blackness of space, and I could see my energy in little
bits of light like stars. A call had gone out, and my little energy
bits all suddenly woke up all at once and came rushing towards me
from every direction and from a great, long distance away, though
it only took about two seconds for them all to converge on my body
It made a sound. Like air rushing though a small
opening, getting louder and louder, whoosh! And then BANG, my vision
cleared up like a lense clicking into focus. And colors, which I
hadn't noticed being dulled, became so vivid it was startling! And
my body swelled, and my blood raced, and I could feel the last of
the virons racing out towards my skin and leaping out.
And I was recovered.
I was recovered.
It was a miracle and I felt it and saw it and experienced
it right as it was happening. It was the miracle that the spirit
of the sweat lodge had promised me. It was the miracle that the
woman who didn't believe had seen behind me. It was the miracle
that I had committed to with the one way ticket. I was cured.
I'd like to say that that was the end of the story,
cause it'd be nice and neat and friendly that way, but Hanna had
told me that a lot of people with Chronic Fatigue need to take her
X-40 kit after starting the B.E. Kit, cause the virus, according
to her, sometimes changes in reaction to the B.E. Kit into something
else, and the X-40 kit blocks that from happening.
I guess this is as good a point as any for me to
describe what I currently believe about the CFS virus. A CFS specialist
that I went to told me that CFS is a retro-virus. As I understand
it, what that means is this. Most viruses live on the DNA, and they
use the reproductive splitting of the cell to reproduce. Our immune
system, however, is hip to this, and can scan our cells, find the
viruses, and kill them. In order to have enough extra energy to
do this, one trick the immune system has, is to simulate tiredness.
When you think of it, what is it that is making you tired, when
you're sick? You aren't doing more than you usually do cardio-vascularly.
In fact, you're probably just lying in bed, resting. So the immune
system knows how to simulate tiredness, so you'll lay down, and
leave all of your vitality at its disposal.
Well retro-viruses live on the RNA, also a part
of the cell replication process, but not a part that the immune
system knows how to access. So when the body has a retro-virus,
it senses that a virus is present, and turns the tiredness-simulator
on, but then it does a search of the DNA, and finds nothing to kill.
It still senses the presence of the virus, however, so it doesn't
turn the tiredness off, hence chronic fatigue.
So where does the virus come from? So far, no one
has been able to document any transmission of the disease from one
person to another. It doesn't seem to be contagious. One member
of a household having it doesn't increase the likelihood that others
living there will get it. The only connection that anyone has managed
to find is that there seems to be a slight hereditary tendency.
If your parents had it, you are slightly more likely to get it.
So what I think is this. Some of us are born with
the propensity to acquire CFS. Nearly every person I know and have
counselled who has had it was a Type "A," driven person,
who was going all out even for themselves, or was under some incredible
emotional stress when they developed it.
CFS is a virus, made up of these little virons.
They require a very particular kind of host environment to survive
and flourish. Basically, a vacated body with a certain, stressed
out vibration. I know at the time I acquired the disease, I hadn't
been home in my body for months. I mean I spent most of my life
unaware of my body - using it like a vessel I had rented - but for
the three or four months before I got sick, I had left it unattended,
parked on a side street collecting parking tickets for months. So
I believe that my absence, along with the particular vibe set up
by all that acute, recent stress, along with a life long Type "A"
lifestyle of stress, along with a possible hereditary inclination
to host the disease, all added up to a "For Rent" sign
on my body, which the virons took at face value, without any malice,
and they just moved in.
Then, after the onset flu, when I tried to return
to my body, my energy found that it was occupied, and so it spread
out in a holding pattern, waiting for the virons to vacate, so there
would be room for me and my energy to return.
How does the homeopathy work? What I believe is
that it is basically the essence - the vibration - of the natural
substances from which it is made. And as pure vibration, it gently
sets up that vibration inside your body. With each dose, your system's
basic frequency changes, by tiny increments, to the sum of your
body's current frequency, plus this new frequency. And that tiny
shift, while imperceptible to our senses, changes the host environment
just enough to change your body from a perfect place to settle down
a raise a family of CFS virons, to a hell-hole so unpleasant, they
leave in droves. And that's just what they did.
But with access to the reproductive process, viruses
have the ability to mutate, to change during reproduction, as AIDS
and other viruses have been known to do, and so some of the virons
may decide to try an adaptive behavior, instead of exodus. And that's
why in my case, Hanna suggested that I use the X-40 kit after the
B.E. Kit had done its work.
Now I had heard that one of the experiences people
sometimes have with homeopathics, is that they relive the progression
of the disease, backwards during the cure. That didn't happen with
the B.E. Kit, but it did with the X-40.
I started it about 4 days after I started the B.E.
Kit, about 2 days after my energy returned. By the second day, I
began to feel as though I were being dragged back into the illness.
At first I went right back to the experience I'd had during my 21
days in Colorado. No Commandant, but no energy either. It was terrifying,
as I'm sure other CFS'ers can imagine, because "good days"
and "relapses" are a part of the roller coaster we are
on throughout the disease's course. Some voice in side me kept saying,
"See - it was just a fluke, a few good days, but now we're
back where we belong." But I knew that wasn't so. I had experienced
the miracle, and so I just held my fear like the scared little boy
it was, and sang him to sleep.
As the two weeks worth of B.E. Kit came to an end,
I still had about 4 days worth of X-40 to go. Fortunately, I had
kept a journal throughout this experience, and so I was able to
follow the course of the X-40 healing, by literally flipping the
pages backwards, and seeing where I would be next.
As the disease's rewind backed into the beginning
of my illness, I realized that I was going to have to go back into
the concentration camp. That was the last lesson. I had one day's
worth of X-40 left, and that was the only experience I hadn't relived.
I had to confront the Commandant one last time.
About the time I had the onset flu, "Schindler's
List" was playing in the theaters. I had sworn I would never
go see it, because I had lived through it through the disease. But
this was different. This was required, by my commitment to heal.
So the next day, after taking the last dose of X-40, I went to the
movies.
My grandfather was there. Sitting beside me in the
dark, even though he had died more than twenty years before. He
had lived through that stunning time of horror, like I had just
lived through a tiny fragment of it. And suddenly I understood,
at a level below words, why a "Commandant" and why all
the concentration camp images. As an American Jew, raised in a pristine
suburb, all of that had seemed very far away. Impersonal and general
- like history - or like a story.
That is the white-washing aspect of the American
Melting Pot culture. We are untouched by our own history, and as
a result, unfeeling about our own plight. But CFS had knocked over
the pedistal I lived on. Dropped me into the primal ooze of the
jungle of my own story, and made me live it. Live the horror, and
live the lessons. With CFS, your faith can't be something that you
take out every Sunday and dust off like your "go to meetin'
clothes." It's like survival rations, and the ground you walk
on. It has muscle and bone, it cuts barbed wire fences like metal
shears, and it has the force of courage, and the will of the righteous.
Grandpa walked along with me as I walked the 5 miles
home from the cinema. He talked to me about his shame for having
survived the pogroms, and I realized that as a Jew, I had inherited
his survivor's guilt.
And somehow, under that blue, blue sky, big enough
to cover the Rocky Mountains, and still leave room for healing and
growing, Granpa Morris and I got over our guilt. He realized that
his surviving was, in part at least, about my life, and I realized
that my life was in part for him.
And as I climbed the steps of my apartment, I realized
that I had just walked five miles, and I wasn't even winded. In
fact, I felt like dancing.
|
