THE HOWL OF THE WOLF CAN CARRY FAR [OUR WAR AGAINST LUPUS]  HUNTER BEAR   MARCH 1 2006 -- AND ALSO RIVER OF NO RETURN [LIVING WITH LUPUS] HUNTER GRAY PUBLISHED IN SPRING 2006 ISSUE OF LUPUS NEWS  -- COMMENTS

 

THE HOWL OF THE WOLF . . .

On the top of my left hand, I now have a large, unevenly bordered gray skin
patch -- which sometimes becomes very dark indeed.  It came when Systemic
Lupus [SLE] hit me like an old-time hard-rock miner's hammer in July 2003.
And, even though as we say in Lupus circles, "there are good days and bad,"
this mark -- which I sometimes refer to as the "mark of Cain" -- always
remains.

Lately I have met a few Lupus victims from this broad Eastern Idaho setting.
SLE is, of course, a relatively rare and genetic disease about which little
is really known.  Like North Dakota's heavy snows and super cold, it
generally gets widespread publicity only via calamity and tragedy.  The
Lupus death of Jay Dee [Jay D. / Jay Dilla], Hip Hop producer, who was
buried this past Valentine's Day [my birthday], at 32 years of age -- after
a three year SLE struggle -- was very widely noted.  SLE strikes Native
Americans, Blacks, Hispanics, Asians -- and women -- far more frequently
than Caucasian males.  [A white man has about one chance in 10,000 of being
so hit.]

Most Lupus deaths are reported only locally -- and many Lupus victims tend
to withdraw, "suffer in silence" -- their lives reduced to narrow horizons
and tedious routines.

I have never cried when subjected to pain.  On the other hand, never giving
a human oppressor or antagonist any sense of satisfaction of any kind, I
have not been reclusive in the case of my SLE. While always trying to avoid
tiresome litanies,  I do talk about it -- as sensibly and vigorously and
widely as I can: providing personal insights, a layperson's knowledge of
current medicine, the failure of the Federal government to provide any
meaningful research monies in this sinister and lethal context.  I write for
our regional Lupus publication;  gave an interview on last  November's
excellent NPR program ["Lupus: The Great Pretender"]  in which I referred to
It as a "civil rights issue"; occasionally bring SLE into talks I give;
web-publish some of my writings on the struggle in our Lair of Hunterbear.

Since last summer, we have had an inevitably small Lupus Support Group which
meets every month here at Pocatello.  It has about a half dozen quite ill
folks -- one of whom may not have Lupus but who does have Something. [Eldri
always accompanies me and has become a mainstay of the tiny gathering.] I am
the only man with SLE. One person lives almost two hours from Pocatello,
another about 50 miles away. Any inclement weather can make our meetings
almost microscopic.

 The only instance, I might add, where I have seen a darkish patch
comparable to mine on a hand has been that of our admirable Utah/Idaho
regional Lupus Support coordinator, Carol, from the Salt Lake City setting.
Her faithful husband several times drove her three hours up from SLC and
three hours back last summer  during our formative period. [Without comment,
she and I initially gazed for a very long moment at each other's dark
patch.]

Carol, who has been on chemo drugs for a long time, was at that point sparky
and vital.  Then, following her final session with us, she stood up -- and
fell hard to the floor.  I heard from her only a few times thereafter, then
learned she had been badly hit by pneumonia -- which frequently accompanies
SLE.  Fortunately, she [and her husband] are tough and committed.

Two members of our local group are now often in hospitals.  One is a younger
woman who has been on chemo drugs, and is inclined to be quite active --
but, now increasingly concerned that her SLE may have attacked her central
nervous system, is heading to John's Hopkins at Baltimore and a top-flight
specialist.

In medical circles, a Plan is frequently developed for patients.  My primary
physicians are not Lupus specialists  but know something of the intricacies
and the tiny wires that make up this mysterious complex -- and their common
sense and empathy are strong. [I did visit, early on, a rheumatologist who,
after poring over my even then voluminous medical records and carefully
checking me out, confirmed [as had other medics and a river of blood
tests] -- to quote him verbatim -- that I have "a very, very serious case of
Lupus."  By that time, neither me nor Eldri nor my grandson/son Thomas --
all of us sitting there stolidly -- even batted an eye. I rejected, as I
have consistently done to date, chemo drugs -- which I believe could forever
wreck my natural immunity. But that afternoon I began to write my strange
while-asleep Lupus-related experience into my rather long piece, "Ghosts."
http://www.hunterbear.org/ghosts.htm

My official medical plan appears to be, at this juncture, a holding
action --  focused on making things as comfortable as possible for me, on a
day to day, month to month basis accompanied by various doctor visits and
blood and related tests.

My plan is, frankly, more optimistic.  Recognizing that this
genetically-rooted Adversary can never be conclusively killed, I am out to
force it into substantial, long-term remission.  From the hatch onward, I
have been characterized by very, very strong immunity.  At five years of
age, I fought Scarlet Fever successfully -- driving it from my system at a
time when there were really no appropriate medicines.  For a few decades
after that, I sustained various profound physical injuries [inflicted by
others] but recovered with astonishing speed.  We know now that, forty years
ago, a preliminary version of SLE hit me. I went to no doctors, continued my
work itinerary, ate well, slept 12 hours per night.  And I fought it off in
a couple of months.  For 15 years prior to this current onslaught, I had
taken not even one aspirin.

If I did not have this powerful immunity, I would have died during my
several ICU / hospital incarcerations.  Following a cunning buildup over at
least several months, SLE struck intensively almost three years ago --
affecting most of my key organs [but sparing my brain and mind.]  Among my
many medicines, the central star at that point was the steroid, Prednisone.
That produced diabetes and much weight gain -- but an eventual shift from
that to a full dosage of Plaquenil has seen the diabetes end conclusively
and, after a weight loss of 50 pounds or more, a return to normal weight.

If my strong, natural immunity can build ever higher, and there are some
recent signs that this may be occurring -- recent blood tests have been
reassuring and I can occasionally feel stronger and even sometimes
"normal" -- I may be able to return to a reasonably active physical life.  I
do much appreciate all of the data and related information that friends have
sent on the recent advances in stem cell research and use.  And, for me, it
may come to that.  Such treatment is, however, contingent on destroying
one's basic immunity which is then, hopefully, rebuilt.  The stem cell
approach, very long and quite expensive, appears to be about 50% effective.
It is certainly a key card in my vest pocket. And new medicines will
certainly have to come at some point.

Since this is genetic in nature, virtually all Lupus victims are quite
naturally concerned about the disease showing up in their direct
descendants. [The howl of the Wolf can carry far.]  Eldri and I have four
children and, to date, eight grandchildren.  Unlike some diseases -- e.g.
Huntington's Chorea in which there is a fifty per cent chance that one's
children will get it -- SLE can take various generational jumps.  In my
case, we know it came from my Native father's side.  He did not have it --
died at 80 of alcoholism -- and we don't think his parents, both of them
Native, had it either.  But we do believe, based on a number of things, that
one of his grandmothers [and thus my great grandmother] had SLE and died
relatively young, a worn and tired lady who worked most of her life [as did
other ancestral women in our family in that grim era] as domestics for
well-to-do white people.

Thomas, who accompanied me through virtually all of my doctor and hospital
things for almost two years, is now married [Mimie Chilinda from Zambia] and
is finishing his first year as a student at the community and Indian-focused
medical program, University of Minnesota, Duluth.  Safe to say that he will
always have a very special interest in SLE.

For my part, I've just today ordered -- for the Family -- a very large and
quite comprehensive work: Systemic Lupus Erythematosus, Fourth Edition
(Hardcover) by Robert G. Lahita [May 2004].  I believe strongly in my own
experiential observations and interpretations -- but I also believe, always
have and always will, in thoroughly researching the Foe.

So I wear my Dark Spot, try to go a little further and do a little more each
day, and plan a truly sumptuous social dinner for our struggling Lupus
Support.  I continue to hope that I can shoot an impressive bear this coming
fall. [And, if so, we will eat all the meat.]  But, although I would dearly
love to shoot Lupus, I would never -- never -- shoot a Real Wolf.  And I do
wear, around my neck, the claw of a Bear and that of a Wolf.

HUNTER GRAY  [HUNTER BEAR/JOHN R SALTER JR]   Mi'kmaq /St. Francis
Abenaki/St. Regis Mohawk
www.hunterbear.org
Protected by Na´shdo´i´ba´i´
 and Ohkwari'
 

COMMENTS:

John Salter [Beba] Comments:

I admire your stance.  You couldn't blame people in your circumstances to cheat the illness by taking a bullet before it ravages the body even more.  I worry that in your neck of the woods, the docs just aren't up to speed.  This isn't a west-east thing or even a rural-urban one, by the way.  But for something as rare as Lupus maybe you, too, should venture to one of the larger medical centers.
 -- JS

___________________________________________________________________________________
 

I have that book by Lahita.
FYI-the minimum cost of a stem cell transplant is
$90,000.00 and most insurance plans will not cover it.

-- Ruby [from our Lupus Discussion list]
______________________________________________________________________
 
Thanks for the update on SLE. You can expect a rant from my brother about quality-of-life approaches, medication, alternative healing, etc.
 
I think some people would see an immunity-building effort as far-fetched, but if anybody can pull it off, you can. From a distance, you seem far stronger than you did a couple of years ago. . . .
 
Don't really know what you think of poetry, but I heard this one on public radio this morning and thought of you. Maybe you're the bear, and we're going to wait until your sleeping to take your money.
 
Poem: "The Bear's Money" by Louis Jenkins from The Winter Road: Prose Poems by Louis Jenkins. © Holy Cow! Press. Reprinted with permission.

The Bear's Money

"Every fall before he goes to sleep a bear will put away five or six
hundred dollars. Money he got from garbage cans, mostly. Peo-
ple throw away thousands of dollars every day, and around here
a lot of it goes to bears. But what good is money to a bear? I
mean, how many places are there that a bear can spend it? It's a
good idea to first locate the bear's den, in fall after the leaves are
down. Back on one of the old logging roads you'll find a tall pine
or spruce covered with scratch marks, the bear runes, which
translate to something like "Keep out. That means you!" You can
rest assured that the bear and his money are nearby, in a cave or
in a space dug out under some big tree roots. When you return
in winter, a long hike on snowshoes, the bear will be sound
asleep. ... In a month or two he'll wake, groggy, out of sorts,
ready to bite something, ready to rip something to shreds ... but
by then you'll be long gone, back in town, spending like a
drunken sailor."
 
Peter Salter [Mack]

______________________________________________________________________

 

Dear Hunter Gray,

I just received your letter about developing immunity. I'm not a medical man, but my gut instinct tells me you're definitely on the right track.
My late mother taught me to use "healing hands" to help people, and one of the things that I have come across on many such occasions is that people can set free or switch on their own recuperative powers. A lot of it simply has to do with getting people to tap their own energy for their own benefit, "convince" them as it were, and to tap other sources out there. Lord knows, it cannot come from the "healer" alone. 
So I think I understand what you're talking about.
Unfortunately, my gifts in this department do not work "long distance", but that doesn't stop me from trying to focus positive thoughts your way.
None of this sounds exactly "rationalist", but as we know the track record for pure reason in human endeavor isn't all that convincing.
Please keep fighting,
 

Jyri [Kokkonen] of  Finland

 
PS The sauna bath can also help with immunity. No joke.

______________________________________________________ 

 

Note by Hunter Bear: [to our Lupus discussion list]

I should note, apropos of Jyri's very good comments on immunity,  that the
Finns and I have always gotten on very well indeed. As some know, my first
college teaching job in sociology was at Wisconsin State, Superior in
'60-61.  Early on I took to saunas, especially at Duluth, MN -- right across
the river.   In some respects, same operative principle, of course, as
Native sweat lodges but not spiritual in the collective sense.  Then, of
course, I married Eldri [part Finnish] and we went off to Mississippi where
there were no apparent Finns nor any formal saunas.  But, as Reber knows,
Mississippi heat and humidity can constitute the One Big Sauna.  Best, H
__________________________________________________________________

 
I understand that you are currently discussing this
from a psychological/wholistic point of view.
Just a thought though--Keep in mind when discussing
your immune system---that having lupus means that you
have an *overactive* immune system. Not an underactive
one. That is why they put lupus patients on drugs that
suppress the immune system, such as chemo.
That is why some things that activate your immune
system are bad for most people who have lupus, such as
alfalfa.
You don't need to be "developing immunity," rather
wanting it to limit (so to speak) how it works.
Just a thought.

Kind regards,
Ruby [Toto Too]
_____________________________________________________________________________________

 
I was thinking the same thing.

This is also why my daughter, who had Hodgkin's, has to be aware of immune stimulants as a potential problem.

best
sam [friedman]
 
____________________________________________________________________________________
 
Dear Toto [Ruby] and Sam:

We much appreciate your thoughtful comments -- each grounded on hard,
realistic experiences.  I am aware of the paradox.  Prednisone, a powerful
suppressant of immunity, led to several major negative effects. Plaquenil,
while much better, has led to a kind of day to day, month to month
standoff -- which I can barely tolerate. [I have never liked tedium and
physical inactivity.]  We are definitely not thinking about taking any kind
of "immunity stimulant" and, until I can get a medical go-ahead, won't be
ending the Plaq or even diminishing it.  But, on the other hand, along with
powerful immunity, I have a very powerful mind and, lately, that seems far
more manifest than it has since this thing began in full bloom back in July
2003.  I was able to suppress developing SLE [albeit a more moderate
version] 40 years ago, without any outside medical help.  And, however
subconsciously, I kept it at arm's length for a very long time indeed.
Without getting into the intricacies of parapsychology at this point, I will
say that some recent "things" of ostensibly spontaneous nature have been
occurring from and around me and we find those encouraging. This has been a
hall mark of my makeup from my beginning -- and one of the reasons that I
have supported the august and quite consciously scientific American Society
for Psychical Research [founded largely by William James ages ago] since the
1960s.  So, without tumbling into wistful New Age canyons, I am now "using
my mind" in a conscious, deliberate fashion to try -- I say, try -- to put
this Thing down.  In the meantime, I eat well and wisely, avoid -- as I have
for decades -- alcohol, drink huge quantities of strong black coffee, and
smoke my whiskey-flavored pipe tobacco.

I'd love to find a sauna.

And the Good Thoughts of You All and Everyone are mightily appreciated!  You
will never really know how much.

All best, H

_______________________________________________________________________

Toto Too Writes:
 
It would be nice to believe that you can control or
cure a disease with mind control, but so far, great
minds have not been able to do that. Maybe it is more
of a psychological need to believe that you can
control what is beyond our control---except for having
certain medical advancements and other things like
that.
Maybe it stems from a need to feel control over things
we can't control.
It's like I see young girls at the book store, looking
through spell books and horoscope books, looking for
magic to hold onto a boyfriend. Not everything can be
controlled with this mind over matter stuff.
I understand that people need to feel positive, and
need to feel hope.
Yes. Very true and necessary.
However, I still feel that medicine is the best chance
for those fighting illnesses.
Sam, too long to get into here, but I am sure you know
of the B-cell cancer drugs that they are doing
clinical trials on now. I know they are working on a
cure for lymphoma, there is lots of new research, and
they seem to be discovering quite a bit.
I wish you the best with your daughter. You are
certainly not alone here.

Kind regards,
Ruby [Toto Too]
 
________________________________________________________________
 
Sam Comments:

Luckily, my daughter had the Hodgkin's in the early 90s and is doing fine.
But good luck is always needed and appreciated.
best
sam [friedman]
 
_____________________________________________________________________
 
Hunter Bear Comment:
 
This may be a paradox -- but I also see, immunity-wise, a probable
dichotomy.  I'll fight with every resource I can find and muster.  If at all
possible, I will never settle for a half-life.  Best, H
 
____________________________________________________________________
 

FURTHER COMMENT BY HUNTER BEAR [TRADITIONAL TRIBAL HEALING, TELEKINESIS, ETC]

This is not, let me say, an effort to get "the last word" in on the matter
of healing approaches. [ I was tempted to bring this in yesterday but did
want to keep the door open for any additional comment.]

A full fledged, traditional Navajo Medicine Man -- using ritual and
sometimes herbal and related approaches as well  in the context of
traditional theology and spirituality -- trains rigorously for about
seventeen years before he is deemed a full fledged practitioner.  Anyone who
has spent any substantial time in the vast Navajo Nation is well aware of
the healing effectiveness of this approach. [This is not "simple"
psychology -- but something much higher and deeper.]  About a generation
ago, US Indian Health Service and many Navajo Medicine Men began working
closely with each other -- and the results of this cooperation have been
extremely beneficial.  Traditional tribal healing approaches anywhere in the
world have long demonstrated their great effectiveness.  Western medicine
certainly has its many plus points as well.  Join the two together and
everyone can benefit very much indeed.

I have said for many decades that the basis for traditional healing in all
great probability is found in telekinesis -- also called psychokinesis:
i.e., "mind over matter." [It has been well demonstrated and proven both
spontaneously and laboratory-wise on a global basis.]  It's possible that
this, like certain other parapsychological dimensions, is an inherent
quality in most, maybe all, human beings [and perhaps in our furry friends
as well.]  Place this in a theological/spiritual context and it then is
given a powerful boost and specific direction.

Frequently throughout my own life, I have had telekinetic experiences. Every
member of my family is well aware of this.  We recall that these experiences
were evident when I was fighting off SLE on my own forty years ago.  During
this past "very bad period" in this current struggle, they were not that
openly evident.

And now they are becoming once again quite increasingly evident in the open
sense.

Best, H

 

A RIVER OF NO RETURN [LIVING WITH LUPUS]  HUNTER BEAR -- PUBLISHED IN SPRING 2006 ISSUE OF LUPUS NEWS

My SLE experiences these past 2 1/2 years have been akin to traveling a
River of No Return:  rough water, swift rapids, rocks.  And even the few
available resting places are always marked by a necessarily uneasy
vigilance.

I'm 71, a Native American [Mi'kmaq, St. Francis Abenaki, St. Regis Mohawk],
who grew up in Northern Arizona and Western New Mexico -- mostly in the
Navajo and Laguna country where our ties remain very strong to this day.
And, for virtually all my adult life, I've been a social justice community
organizer:  Native rights, union labor, civil rights.  And often
concurrently, I have been a college/university professor.

We now know that a moderate version of SLE brushed me hard forty years ago.
But I ignored the bright red rash, extreme fatigue, perennially sick
feeling, and some other manifestations -- and kept right on keeping on.  It
passed after a little more than a couple of months but, interestingly, its
memory never quite left my conscious mind.

Forty years later in the Summer of 2003, here in Eastern Idaho, following a
cunning several months buildup, SLE struck me openly and dangerously: vivid
rash, extreme fatigue, acute anemia, loss of appetite, drenching night
sweats, and a number of other obviously related difficulties.  I held off on
the docs for several weeks -- but then was maneuvered by my faithful family
into our local Pocatello hospital for the first of several stays.

After several weeks and medics had passed, SLE was conclusively diagnosed.
It was obvious that it had attacked my liver, lungs, kidneys, heart,
vascular system, skin, joints, ears.

But, at least so far, it has spared my mind.

That serious crisis period of many weeks in the Fall and Winter of 2003 saw
me almost die a number of times.   For months, any walking was extremely
difficult  and I was unable to drive.

But I have fought hard all my life -- and we fought back against this Wraith
with great vigor:  not only against the direct multi-thrusts of SLE but also
collateral dimensions:  pneumonitis, the severe anemia, pseudo-diabetes
generated and maintained by heavy doses of Prednisone [which we have now
replaced with other medicines.]

And, gradually, as SLE's frontal assault shifted into the present long-haul
guerilla campaign, I began to take stock of things.

I have always deeply appreciated my life-long spouse, Eldri, and the rest of
my family, many friends, animal companions -- but now, believe me, I see
them all as absolutely priceless.

I can now do some slow-going rough country hiking -- a few miles up and down
in the steep hills that begin practically in our backyard  'way up here on
the far western edge of Poky.  I can do some short driving.  Ending
Prednisone has returned my weight to normal, the diabetes is gone, and
blood pressure again is naturally rather low.

I give a few speeches now and then.  My voice is strong.

From the Edge of the Fog, I've done a pretty thorough Life Review of my wild
and wooly run [to date] -- almost invariably [of course] giving myself good
marks.

 I have always done much writing.  And I am now doing mountain ranges of
that.

I try to be active in our Lupus Support Group and I correspond nationally
with others so afflicted -- including many Native and other "minority"
people.

We now know that Native Americans are anywhere from three to ten times more
likely to get Lupus than others -- with Blacks, Chicanos, Asians not far
behind.  Many of these are in the general high-target group: younger women.

I was recently -- this November -- privileged to speak substantially as part
of the excellent NPR program: "Lupus -- The Great Pretender".  This went to
many radio stations in the United States and Canada, reaching about one
million people.  In the course of my interview, I
said "I see it [Lupus] as a very real civil rights issue that cries out for
strong Federal intervention."

And through it all, I can still look up at the Sun and Stars, and listen to
the Wind.

Hunter Gray [Hunter Bear]


HUNTER GRAY  [HUNTER BEAR/JOHN R SALTER JR]   Mi'kmaq /St. Francis
Abenaki/St. Regis Mohawk
www.hunterbear.org
Protected by Na´shdo´i´ba´i´
 and Ohkwari'

I am honored -- humbled -- by the 2005 Elder Recognition Award of Wordcraft
Circle of Native Writers and Storytellers. This particular, rarely issued
honor is one of several awards voted by the Caucus [board] of this
organization of writers, storytellers, film makers, and journalists.
http://www.hunterbear.org/elder_recognition_award_for_2005.htm   Regularly
updated.

In our Gray Hole, the ghosts often dance in the junipers and sage, on the
game trails, in the tributary canyons with the thick red maples, and on the
high windy ridges -- and they dance from within the very essence of our own
inner being. They do this especially when the bright night moon shines down
on the clean white snow that covers the valley and its surroundings.  Then
it is as bright as day -- but in an always soft and
mysterious and remembering way.  [Hunter Bear]

 

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