(Transcribed by TurboScribe. Go Unlimited to remove this message.) The podcast has been on hiatus this week
while I have dealt with a constellation of
different health issues.
The bottom line is I recently received a
diagnosis of alpha-gal, which has been in
the news a lot lately.
It is a tick-borne allergy, not an
illness, but an allergy to the alpha-gal
carbohydrate molecule that's present in all mammals.
The top line that the news likes to
sensationalize is that it makes you allergic to
red meat like burgers and bacon.
But the truth is alpha-gal causes a
lot more than that, and I've been dealing
with a lot of those other symptoms.
A lot of people have said to me,
well, what good are ticks anyway?
And well, it's Disability Pride Month, and I
feel like that there might be some parallels
between the way that our society treats ticks
and the way that our society treats disabled
people.
So throw in a heaping of vegan popcorn,
and let's dive in and see what this
is all about.
You're listening to Feathermane Soul Wisdom, a podcast
for those looking to rediscover their wild spirit
in spite of life's challenges.
If you're living with a chronic illness or
neurodivergent or consider yourself disabled, and you're looking
to connect with your own inner untamed essence,
then this show is for you.
Your host is Kit Kaelstoe, Wild Spirit Storyteller.
Thanks for listening, and now on to the
episode.
Hi, and welcome back to the Feathermane Soul
Wisdom Show.
I'm Kit Kaelstoe, and this week we're talking
about alpha-gal specifically, although I admit that
since my diagnosis, I've had a lot of
thoughts about eating and food, different ways of
eating in general, eating more compassionately, and how
we can move in that direction, as well
as we're going to be talking about ticks
and what their role is in the ecosystem.
And yes, they do have a purpose, but
we're going to be tying this into Disability
Pride Month.
And lest you think I've gone too far
afield in my original message, the truth is
that all of this ties into wild spirit
storytelling and grief work, because not only is
there a lot of grief when you get
diagnosed with a food allergy, or any chronic
illness, honestly, there's also a lot of how
do we connect to the wild?
If the wild is something that can make
us sick, how do we deal with that?
So it is all connected, and this is
the type of stuff that I really like
to think about and really like to dive
into.
And so trust me when I say that
there's probably going to be many more podcasts
slicing into that bit by bit.
But again, today we're going to talk basically
about alpha-gal, we're going to talk about
ticks, and we're going to talk about Disability
Pride Month.
Let me start by discussing what alpha-gal
is.
Alpha-gal is is designated a mammalian meat
allergy.
It is a tick-induced allergy to a
molecule which happens to be a carbohydrate called
galactose A 1,3-galactose.
It's a sugar, and it's commonly known as
alpha-gal.
This sugar is found in all mammals except
for humans and some primates, and it's just
part of the family of sugars that feed
our cells and make our body work.
Products made from mammals can also contain alpha
-gal, and they include meat, so beef, pork,
lamb, that would be burgers, bacon, pork chops,
lamb chops, milk and dairy products, cheese, ice
cream, but also products you might not think
about like gelatin, medications, either with a mammal
-derived ingredient as like one of their inactive
ingredients or active ingredients, or like the gelatin
capsules.
Some of your other medicines come in capsules.
Those are often made from gelatin.
And medical products like heparin and vaccines and
even personal care products like lotion, makeup, deodorant,
shampoo, conditioner, body wash, toilet paper, many other
items.
There is an amazing amount of products due
in large part to our very industrial food
and consumer-driven product system that we have.
And no, this isn't a rant against ultra
-processed food or whatever the biggest fad is
right now.
It's just a fact of life.
We are very efficient at using most parts
of an animal that gets butchered for food.
In fact, bone char, so charred animal bones,
is used in sugar production.
It is also part of charcoal.
So something that I've been thinking about is
like my incense use.
All of this, all of these products contain
this molecule.
And if you have alpha-gal, you are
allergic to this molecule.
And what's going to happen is you're going
to have reactions.
And reactions can range from really, really bad
like sudden anaphylactic shock, which is where you
can't breathe, you suffocate to death, very bad,
no good, nobody wants.
Reactions might be itching or hives as part
of that allergic reaction.
They also could be gastrointestinal.
And it's a delayed reaction.
So it's not like food poisoning where if
you eat something that's bad, like within a
half an hour, you know it and you
can trace it right back to what you
have eaten.
In this case, reactions can take three hours,
eight hours, sometimes even longer after what you've
eaten.
Or people can be fume reactive.
So if you go to say like McDonald's
where they're cooking hamburgers, just having that in
the air can be enough to trigger your
allergy.
But about three to eight hours after you
eat, your stomach hurts really bad.
You might get all the usual GI symptoms,
gas, cramps, nausea, vomiting, diarrhea, bloating, all of
the no fun stuff.
And because it happens so delayed, especially if
you don't realize you got bit by a
tick, it can take a long time to
figure out a diagnosis because it's not something
that leaps to providers minds.
Even in a place where I'm at, which
is in the Missouri Ozarks, where alpha-gal
is very prevalent, it's very much on everybody's
mind.
Even down here, like one of my biggest
frustrations for the past couple of weeks is
that my doctor is not literate about it.
And what my doctor told me is very
much not true.
And so they basically measure your allergy to
this molecule.
Anything over a certain threshold is considered a
positive.
And one of the interesting facts about this
allergy is that it's kind of like that
game show whose line is it anyway, where
the points are made up and don't matter.
Whatever you score that's a positive, you can
have a really high number and very low
reactions.
For example, you could tolerate dairy and some
of the other products and just not meat.
You can have a very low positive number
and be extremely reactive.
So there's not a real correlation there.
There may be a chance that you can
go into remission, especially if you avoid further
tick bites.
There's also a chance that it could get
worse if you have further tick bites.
And again, because all of these reactions are
delayed, it's really hard to know like, okay,
I got bit by a tick.
It's now a week later.
My symptoms are super worse.
This can take several months to manifest in
your system.
So it's a very difficult food allergy to
deal with in large part, because there's so
much misinformation about it.
And there is a certain sector of our
information ecosystem that, and I suspect it has
to do with the regions of the country
where alpha gallus more prevalent, have really kind
of glommed on to some really wild ideas
about what this is and what can cure
it.
There is no cure, what it means to
live with it.
And so it's really hard to find good
solid information.
In my case, I belong to some groups
of people who have the illness, and it's
a lot of trial and error even then,
because again, our reactions vary so differently.
Now that you know what alpha gallus is,
the question that always comes up is, well,
what purpose do ticks serve anyway?
And I understand.
I mean, ticks are primarily known as pests
and bloodsuckers.
They're known as parasites.
In fact, their actual niche is called, and
I hope I get this right, that they
are endoparasites.
I'm going to pause the recording here and
look this up just one moment.
Nope.
I got that wrong.
And I thought I did.
Ticks are obligate bloodsucking ectoparasites.
In other words, on the outside of the
body.
And you think, well, you know, golly, they
suck your blood.
What purpose do they have?
Well, in, you know, much the same as
the food web and the chain, they do
provide food for other animals.
Again, there's a lot of misinformation out there,
but a lot of animals will feed on
ticks, either ticks that land on them or
ticks that they find in the environment.
And there are, you know, guinea fowl, for
example, apparently eat ticks.
I've kept guinea fowl.
It is way more trouble, as far as
I'm concerned, than it's worth, because guinea fowl
are not as smart as chickens.
That's another show, probably.
But, you know, guinea fowl eat them.
Free ranging chickens eat them.
Reptiles, birds.
I've heard it said that opossums eat them.
I've also heard that that basically they will
eat any that land on them, but they
don't go seeking them out, which would make
sense, because it's not a big food source
for an opossum.
But, you know, what they do is they
do serve as food for other animals.
They do take part in providing some diversity
of life on our planet, because they do
carry various microorganisms and bacteria.
And whether we agree with the microorganisms and
bacteria that those ticks carry, that's kind of
relevant, because we don't get to decide their
purpose because of what they do for us.
That's pretty selfish.
And that kind of is going to get
into the third part of the show.
So they do provide some diversity of life.
They have obviously evolved to fill certain niches.
And in some ways, they do also help
to keep animal populations in check.
So too many ticks on an animal, especially
an older animal, a weak animal, a sick
animal, can be its cause of death.
So it is one way to kind of
keep balance in the ecosystem.
And again, regardless of whether we think that's
a good way to keep balance in the
ecosystem or not, certainly, it is a way
to do so with the help of this
creature.
So ticks do have a purpose.
And I think it's important when we're thinking
about the environment, when we're thinking about our
connection with the wild and our connection with
nature, it's very important to de-center ourselves.
And if we de-center ourselves from the
conversation with nature, the entire nature of that
conversation changes.
If we de-center ourselves, we're no longer
talking about what serves humanity, what is in
humanity's best interests, but rather what is in
the best interest of the planet.
Now, I am not knowledgeable enough about ticks
to make a strong argument for why ticks
are in the best interest of the planet.
Because they are not something that humans have
put here, but because they have evolved along
with the rest of life and they've evolved
to fill certain niches.
Again, I have to trust that nature in
this sense knows more than I do.
Obviously, it has a much broader picture than
I do.
And it's one of those things where we
don't know what would happen if we took
these creatures out of the ecosystem completely.
So de-centering ourselves when we're talking about
the environment means that we have to understand,
first of all, that each and every animal
and creature in this environment has a purpose.
Even if we don't agree with that purpose,
even if we don't like that purpose, even
if that purpose is harmful to us.
It's a living with mindset rather than a
dominion over mindset.
The second thing is we have to understand
that we don't know what we don't know.
And I think that's the hardest thing for
humans to understand is that we don't know
what will happen or what questions need to
ask to know what we don't know.
And so if we can live with that
ambiguity that, hey, even if it's not an
intelligent design type model, if it's more of
an evolutionary model, trial and error, more scientific
model, we have to understand that something happened.
These creatures have evolved.
They've evolved to fill a niche for a
reason.
And we just have to trust that that
reason exists.
And that's why phrases like, I don't know
why ticks exist anyway.
You know, that's why those phrases are harmful,
because as it's Disability Pride Month, those phrases
can be extended to other individuals who may
be seen as not having a functional role
as seen by the person making that statement.
So what does all this have to do
with Disability Pride Month?
Well, first of all, it's really opened my
eyes.
And I say this as somebody who thought
I was pretty well versed in disability theory
and in systemic ableism.
I worked on a thesis regarding disability liberation.
I have been disabled under multiple models, which
I've talked about in other shows for many
years now.
And I am all about accommodations, nothing about
us without us.
The fact that the Americans with Disabilities Act
needs to be strengthened quite a bit.
It needs some teeth, to be very honest
with you.
And I'm looking at getting maybe a service
animal.
And even with all of this in mind,
because I had not dealt with a food
allergy, I am ashamed to say that I
did not realize just how badly the American
food system fails people with food allergies.
So with alpha-gal, again, we're allergic to
anything derived from mammals.
If you look on a package of food,
and I'm just going to say the English
muffins, the light multigrain English muffins I've got
sitting on my counter.
I like to make breakfast sandwiches out of
them.
So there's an app that tells you what
allergens are in food.
I scan my muffins, and they are like
flashing red danger.
And I'm like, what the heck, man, it's
an English muffin.
What is wrong with this?
Well, there is a whole bunch of enrichment
in the flour.
So those enriched vitamins and minerals in the
flour actually could be animal derived.
There are natural flavors that show up.
And because those natural flavors don't have to
be disclosed, they might be animal derived.
And so a great example is chicken.
So chicken is something that is safe for
alpha-gal individuals to eat because poultry does
not contain that molecule.
However, a lot of chicken providers will say,
will tell you, or not tell you as
the case may be, that they may use
mammal derived products, juices, flavorings to inject into
the chicken to so called make it better.
That may be great for everybody else.
That's very dangerous for people with alpha-gal.
Now, I am fortunate in that I have
mostly GI symptoms, and they're mostly manageable.
I mean, hell, I've dealt with an angry
GI tract for decades.
So although now I'm wondering just how long
I've had this and not known.
But the truth is, it's pretty safe for
me to eat like those English muffins.
In fact, I'll probably have one when I'm
done recording this podcast so I can eat
some lunch.
But it also means that if you have
an allergy to mammal derived products, it's going
to really limit what you can and can't
eat.
And if we start thinking about food deserts,
which I live in one, if you start
thinking about rural populations without access to a
lot of natural or organic foods, although Walmart's
getting better.
You know, when you start to think about
that sort of thing, there really is an
accessibility, a disability issue going on with our
food supply.
And again, I was aware of this to
some extent as somebody who was trying to
eat more plant based, but I really wasn't
aware of the extent of it until I
got alpha-gal.
And you know, boy, I feel really ashamed
now because there's a lot of advocacy that
needs to be done in this area.
The other area I really find with alpha
-gal and disability is that a lot of
people don't take it seriously.
Again, because it's billed as a meat allergy,
they think that if you just avoid hamburgers
and bacon and pork chops and anything that's
obviously, you know, from a mammal, although as
I've seen in my alpha-gal group, some
people don't even know what mammals are.
They think that if you just avoid it,
it'll be fine, but you can be around
it.
There's not a cross-contamination issue.
There's not a fume reaction issue.
That basically, just don't eat meat and you'll
be okay.
And it is so much more than that.
It's so much broader than that.
And in fact, I was looking at the
CDC's recent paperwork on it.
They've got some teaching handouts.
And while they're pretty decent, they also kind
of reinforce that stereotype and that's dangerous.
Just like the idea where if your numbers
are low or your numbers are high, that
details the severity of your reaction.
That's dangerous.
So there's a lot of advocacy to be
done in, I think, broadening our vision of
disability, this Disability Pride Month, and thinking about
ways that you might not consider yourself disabled
if you have this allergy.
I know, for example, I don't consider myself
disabled because I have alpha-gal.
I consider myself disabled because I have other
medical conditions.
But the alpha-gal just kind of compounds
all of that and compounds the problem.
But we need to think about inclusion and
the way society either enables or disables people
within society.
And step away a little bit from the
label of disability liberation is only for people
who think that they're disabled.
Because a lot of people have medical conditions
but choose not to think of themselves as
disabled for a lot of different reasons.
Whether because they feel like they're doing okay.
Whether because of internalized ableism.
There's a lot that happens.
And so we really need to get away
from a rigid idea of what is and
isn't disability or disabled.
Because much like everybody's alpha-gal reactions can
be different, everybody's vision of access and equity
and ability within society to, for example, go
into a grocery store without being overwhelmed by
fumes from the deli department.
Or eat at a restaurant without worrying that
the server is going to laugh at your
allergies and they're going to try something different.
Which is a story I heard recently that
just horrified me.
And I also think it also invites us
to think about our definition of usefulness.
A lot of society believes that you are
only disabled if you can't work.
And if you can't work, then you are
a taker.
You are a parasite.
You are not useful to society.
Now I want to stop and say that
that's bullshit.
That every human being has worth.
Every human being has value.
Every human being deserves food, shelter, clothing, housing,
medical care, community care, mutual aid, support.
And none of that has any bearing on
whether a person can work or not.
Whether, you know, a person's productivity does not
define their worth.
Full stop.
End of sentence.
No asterisks.
So when we think about, you know, well,
what purpose does a tick salt, you know,
have in our environment?
Well, then the question becomes, some people wonder,
well, you know, what purpose does it serve
to support a disabled person?
And you can appeal to them by talking
about how a lot of people, if not
almost everybody, will become disabled at one point
in their life or another, whether through age,
whether through an accident, whether through an illness.
But the truth is we should not have
to do that.
We should have enough compassion and support for
one another, to want to support one another,
to want to make sure that one another
has everything that we need to survive.
And to be honest, when you look at
the amount of money that gets tossed around
by billionaires, by rich people, even by people
who are moderately well off, when you look
at that, you know, that kind of money,
you think that could do a lot of
good.
Now I'm not saying that people should forgo
their enjoyment or forgo things they like, but
if you can afford to drop $500, $1
,000 on something you collect or on some
special trinket, then the question becomes, what are
you donating to your community?
How are you supporting mutual aid posts?
Are you giving not even that same amount,
but even a tenth of that amount, just
supporting your community?
And if not, why not?
When we start to think about, when we
start to decouple worth from productivity, we start
to de-center that capitalist human mindset.
And that's just like de-centering the human
mindset from thinking about the wild or thinking
about the nature.
When we start to de-center basically common
culture and start to think of it more
as, you know, interconnected ecosystems, whether that's the
ecosystems of our environment, whether that's the ecosystems
of our body, whether that's the ecosystems of
our community.
When we start to really think about that
and realize that we're all in this together,
then it does seem really selfish to not
support disability pride, not support disability access, disability
equality, not support disabled people.
And so that's kind of where I want
to leave this episode.
Like I said, I've got a lot of
thoughts tumbling around my mind about alpha-gal,
about our environment, about how we treat certain,
you know, creatures in our environment, how we
treat ourselves and eating more compassionately.
And as somebody with a degree in ag,
kind of how that ties into our current
food production system.
Lots of stuff out there.
All of it ties into grief work and
all of it ties into wild spirit storytelling.
If you would like to know more about
how to work with wild spirit storytelling in
your life, if you would like to do
some grief work around disability or food allergies
or your neurotype, I would love to speak
with you.
I would love to support you in this.
Please visit feathermanesoul.com.
You can reach out to me through the
contact form.
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Thank you so much.
And I look forward to chatting with you
next week.
You've been listening to the Feathermane Soul Wisdom
Podcast hosted by Kit Kaelstow.
Learn more about Feathermane Soul at feathermanesoul.com.
As a wild spirit storyteller, Kit is passionate
about helping those who are neurodivergent, disabled, or
living with chronic illness rediscover their own inner
wild spirit.
Visit feathermanesoul.com to receive free gifts or
book a free call with Kit to discuss
how wild spirit storytelling can help you.
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