"Useless Ticks", Alpha Gal, and Disability Pride

(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.

Music is Running with the Horses by Purple

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