Risa August is not your average human. When faced with a devastating pituitary disease diagnosis, she pushed through to find herself again. One of the things she did was participate in a bike ride from Canada to Mexico!
She published her multi-award-winning memoir "The Road Unpaved - Border to Border with a Brain Tumor and a Bike" about this major life-altering diagnosis and personal life upheaval. She found that she experienced a change in her own perspective, and faced her own limiting beliefs. After being told she "shouldn't", she decided to ride her bike the 1,845 miles from Canada to Mexico.
Her ultimate goal was to save lives, and also to inspire and empower others.
By day,Risa is a Speaker, Gestalt Practitioner and patient advocate for rare Pituitary tumors. She offers inspirational coaching to those feeling stuck within their own limiting beliefs. In her personal time, you will find her living a robust life!
Risa has been interviewed on over 55 podcasts since my her book release in October, many more will air over the next several months. Here is a link where you can listen/view those podcasts: https://www.risaaugust.com/podcast-interviews.html
Learn more about Risa here: https://www.risaaugust.com/livin-unleashed.html and on her author page here: https://www.risaaugust.com/author-page.html
Music Note: NEW for 2025! Original music created for the podcast by the band "Rough Year," featuring Julian Calv on trimba (and including Dillion Spear and Brendan Talian). Thanks Guys!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Unknown (00:00):
Risa, hello and welcome to the storied human today. My
(00:05):
guest is Risa August. Sherecently published a multi award
winning memoir called the roadunpaved, border to border with a
brain tumor and a bike. It'sabout a major life altering
diagnosis and personal lifeupheaval. She shares about the
change in her own perspectiveand how she faced her own
limiting beliefs. After beingtold she shouldn't, she decided
(00:29):
to ride her bike the 1845 milesfrom Canada to Mexico. I can't
wait to hear about that. Reese'sultimate goal is to save lives
and also to inspire and empowerothers. By day, she is a
speaker, Gestalt practitionerand patient advocate for rare
pituitary tumors. She offersinspirational coaching to those
(00:51):
feeling stuck with their ownlimiting beliefs. So nice to
meet you. Welcome. Risa,I am so grateful to be here.
Lynne, thank you for having mewonderful.
So it's so good that we finallygot it to work our dates, our
date. So we love to just let youstart where you think would help
(01:13):
us understand how you got tothis point, how you were able to
do these amazing things.
Oh, gosh. Well, it was acomplete life overhaul.
It was in 2018when I was diagnosed with a
tumor at the base of my braincausing a rare and destructive
(01:34):
disease. But I started noticingchanges in my body about seven
years prior to that, but doctorsweren't listening, and I kept
being dismissed. And it was, itwas really frustrating, but I
fast forward to 2018, and I Ihad such severe headaches I
(01:57):
couldn't ignore them. I wasbarely sleeping two hours a
night, and nothing was working,despite my doctor saying things
like, well, you're probablydehydrated or over training, or,
you know, not eating well and soand I would hear it time and
(02:21):
time again, well, your bloodwork is fine, you're fine,
you're active. I'm not worriedand and typically, I'm not
someone to really stress aboutthings, because I I've always
taken really good care of mybody. I was an athlete for a
very long time, very rigid in myeating. But this was undeniable.
(02:43):
This was something wasdefinitely off, and I asked for
an MRI, and I was told no twice,and the third time I said, Okay,
I'm not going to ask this time.
(03:05):
I'm going to demand it and andthat's what I did. And one week
later, I had a email from mydoctor saying, you have an
enlarged pituitary. Go see anendocrinologist. I had no idea
what that was. I had no ideawhat an enlarged pituitary was.
I didn't know what anendocrinologist was. And so one
(03:29):
week later, I'm sitting in theendocrinologist office, and I'm
staring at my skull on thescreen, and right between the
eyeballs is this giant grayblob, and this extremely
compassionate doctor is lookingat me and pointing to this big
gray blob, saying, This has gotto come out
(03:52):
and and there wasn't.
She was different. It wasn't. Itwasn't a matter of fact. You
know, doctors tend to be morebusiness like and she had more
of this sense of urgency. And,and I picked up on it. And I was
(04:17):
like, Okay, this is serious. OhGod. And and then after that,
she said, Oh, and of 99% sure Iknow what you have. And I said,
Wait a minute, what do you mean?
What I have? What do I have?
Like, I have a tumor. What doyou mean? And she said, Well,
(04:38):
this tumor causes a rare diseasecalled acromegaly, and that
explains everything you've beentalking about over the past
seven years. Oh my gosh, yeah.
And whydon't they believe women these
doctor? I mean, you lost so muchtime, you know? Yeah, kind of
drives me. Crazy, right?
(05:02):
And, and, you know, these tumorstend to be slow growing and, but
so it it's quite possible thatthis tumor has been doing damage
to my body for decades, but itwas about seven years out when I
finally noticed changes andsymptoms in my body.
(05:25):
What reallypropelled me toward the work I
do today is I went home that daytrying to research, okay, what
is this? What is acromegaly?
What are pituitary tumors? Iwant to understand this. How can
(05:46):
I fix it? How can I get throughit all the questions, and there
wasn't a lot of information outthere, and that really was It
was frustrating for someone likeme, wanting to understand, okay,
what are the treatments? How canI move forward? But I wasn't
given options. I was told brainsurgery and radiation treatment,
(06:12):
and then you'll most likely haveto be on medication. And so I
fought against that a little bitin the beginning and again,
struggled to find other options.
So following brain surgery andradiation treatment, I started
connecting with specialists andother people organizations who
(06:35):
knew more about these tumors andthis disease. And what I did
learn is that although they callthem, they call it rare. It's
believed to not be so rare. It'sit's believed that many people
are walking around with thesetumors, but they're really
difficult to diagnose. And thatwas this repetitive story I kept
(06:57):
hearing like mine. It took fiveyears to diagnose, seven years,
10 years to diagnose. I'veprobably been walking around
with it for decades. My verygood friend has had his for 30
years before they diagnosed. Itso
and by then, it's done extensivedamage.
(07:20):
If these tumors are caught earlyenough, you could go on to live
a relatively normal life. Butagain, they're difficult to
diagnose because my symptomswere fatigue,
joint pain, headaches,could be a lot of stuff. Yeah,
(07:41):
anythinghormone based, anything hormone
related. You know, hormonescontrol everything in our body,
everything so any skin changes,hair changes, you know, my my
teeth were moving all kinds ofthings that you would never even
think of. You wouldn't connectit, yeah, and, and so.
(08:10):
So I decided after about eightmonths post brain surgery,
radiation treatments on amedication that wasn't working.
I was sitting on my couch againfor another day exhausted.
Barely could get off the couch.
I've been sitting in thesetattered gray sweatpants for
(08:34):
what seemed like years, and Ijust I remember thinking, This
is no way to live. This can't beit. I'm i This can't be it. And
that was the day I decided I wasgoing to ride my bike from
Canada to Mexico.
That's not the conclusion mostof us would think of, but I do
(08:58):
love that. Yeah, so you heardabout it and just said, Yeah,
I'm going to do that. Dothat. Yes. Well, you know, I had
this life altering change andcircumstance, and, of course, I
became very reflective on mylife, like, am I living the life
I always wanted. What happenedto that list of all the things
(09:22):
I've always wanted to do? A lotof people call it a bucket list,
you know? And I knew I neededsomething to work toward. I knew
I needed something to live for.
As dramatic as that may sound,that's what it felt like for me
(09:44):
in that moment, and so I knew Iwould never do another Iron Man
race, or be as competitive insports or the athlete I used to
be. It was really painful towalk. And, and the fatigue was
just incredible. I'd neverexperienced anything like it,
(10:07):
and, but I thought, okay, I betI could still ride my bike.
I bet that's amazing to me.
Yeah, that's amazing to me thatnow who told you you shouldn't?
Well, during this time, youknow, I began educating myself
(10:27):
more. So I started going toendocrinology conferences,
getting more involved withorganizations like pituitary
organizations, and learning asmuch as I could out what was out
there connecting withpharmaceutical companies. What
kind of medications do theyhave? What treatments are
possible, meeting other doctorsthat specialize in pituitaries,
(10:51):
and which are very few. Mostendocrinologists focus on
thyroid and diabetes. And so Ijust started, you know, taking
money out of my own pocket andtraveling to events and learning
as much as I could, and I wentto this endocrinology
(11:11):
conference, and I talked aboutthis in my book, and I remember
meeting this neuroendocrinologist who specializes
in acromegaly, they're such acool cat, just really cool guy,
and not your typical doctor. Andhe we were sitting in a session
(11:34):
and with a group of maybe 60people, and I had flyers. I
passed out flyers to peopleattending the conference,
saying, Hey, I'm doing this bikeride from Canada to Mexico to
bring awareness to this disease.
And so this guy in the audienceis holding up this flyer, and
(11:55):
he's like, What do you thinkabout this girl doing this bike
ride? And this doctor said, if Iwas her practicing physician, I
would tell her not to. I wouldtell her it's not a good idea
that she shouldn't do that. Andthat was another moment where I
(12:15):
said, challenge accepted. That'swhere I realized, wait a minute,
I love that I get to choose howI move forward, right? Not a
doctor, not anyone else. I getto make that decision and and
from that out, that was like,rocket fuel for me. I was like,
(12:40):
I'll show you. Challengeaccepted.
I love that.
Did he say, why? Like, did hesay it would be too much, or
would stress you, or you wouldget worse, or, I mean, was there
a specific reason?
Um, I mean, there were variousreasons because of some of the
(13:02):
complications I had with mysurgery. And, you know, my body
doesn't process sodium the way,oh, okay, it does for normally,
for a healthy pituitary. And sodehydration or over hydration,
(13:22):
can be life threatening foranybody but someone with my
condition. It's even more riskyand but also
putting any kind of excessiveimpact. On the joints
(13:46):
for someone with acromegaly canreally speed up the
deterioration process, and andso. So those are the two that
come to mind right away. I kindof tuned him out at that point,
because I was like, well,whatever, you know, and and so,
(14:07):
so those are real things that Ihad to take into account. But it
just made me more determined toshow him or anybody that I get
to make that decision on what Iget to do and what I maybe
shouldn't do. That's my choice.
(14:29):
That's amazing to me, that thatthat was your response, and I
admire that. Did you do thisalone?
This particular ride, I signedup with a tour company, and it's
called a semi supported tour. Some, along with nine other
cyclists, low dollar campinggear, everything we have into a
(14:55):
van, and the van transports ourgear to the next site to. Next
campground sounds reasonable,yeah, yeah, which is anywhere
from 55 to 75 miles away. Soand, and it's up to us to figure
out how to get there. You know,we we have our own maps, and we
(15:18):
have to take all our own foodand any repair kits, anything
like that. I thought it would bea safer way to go.
This was my firstagain. I didn't just get right
out on my bike. I took 14 monthsto train following following
that day where I decided to dothis, and I wasn't sure how my
(15:40):
body would respond. So this feltlike a safer way to go. Yeah, it
started off as being a moreannoying way to go, but, but I
felt like it would I would havebackup if I needed it. Yeah,
(16:04):
and I'm thinking, you maybedidn't go as fast as you might
have gone in the past. Was thatan issue? Like, did other people
go faster, or did was there avariety of speeds? There was a
varietyof speeds. A couple people were
very fast. I was middle of thepack. I was good. Actually felt
very strong in my cycling, andit felt like I came back very
(16:29):
strong and so good. Yeah. Andthere were other people that
took their time and rode slower.
I think partly by choice, theywanted to take their time. And
yeah, for a little bit, and,but, man, on those rainy, cold
days, I probably pedaled faster.
I can't imagine, yeah, I doimagine that there, you know,
(16:57):
people who were athletes whenthey were younger, they have,
like, a base, like a good baseof fitness and muscle, and, you
know, you're trained, and thatdoesn't go away. So it's kind of
cool that you were able to, youknow, bring it back and be in
the middle. That's prettyimpressive. Oh, everything you
went through, right? Yes,I definitely, you know, might
agree with that. But and alsomindset. Mindset is extremely
(17:21):
important. I mean, that's one ofour can be one of our strongest
muscles to get us through someof the hardest things in life.
So so that that grit, thatdetermination, that on some
days, I had to really dig deepfor I owe that to my, my mindset
and my, my brain strength,that's so impressive, and it's
(17:47):
so true. It makes thedifference. It's so powerful.
Yeah, it helps everything thatwe do. So yeah, you were, oh my
gosh. How did this How long didthis take you?
So this trip took 41 days. I hadfour rest days, and
I had to figure out how to getmy medication. I had very
(18:14):
complicated medication to and Ihad to get it shipped to like
urgent care hospitals and find apractitioner that knew how to
administer and handle thismedication. It's not as simple
as sticking me with a needle. Ithas to be reconstituted just
(18:38):
right and and it can't be leftout too long or too short, and
it's it's a little bit complex,and the first one was completely
a mess, and, yeah, and it's avery expensive mistake. The
medication is about $5,000 ashot and a very expensive error.
(19:06):
So, so there were challengeslike that and weather and bike
crashes, and, you know, dealingwith 10 personalities, and there
were all kinds of things that Ididn't expect, but there was
also a lot of beautiful outcomesand unfolded in unforeseen ways,
(19:33):
which was really wonderful. Whatan experience,
and what did it feel like whenyou actually got to the end,
to be honest,it felt a little anticlimactic.
I I was going, I had a lot ofpurse. Things going on in my
(20:01):
life. I was facing divorce froman 18 year marriage. I was
exploring a new identity and andthen also in this body that no
longer functioned the same wayit and it wasn't just my it's
not just my body that's impactedmy cognition, memory. A lot of
(20:26):
brain stuff was happening aswell. And so I was now facing
that I was I had, now had to goback to what, what is my life
going to look like now?
Oh, that's hard. Yeah, yeah. Youwere, like, sort of captivated
(20:47):
by all the things that werehappening on the journey. And
you didn't have to think aboutyour real life, you know, and
then you have to go back andsay, Who am I now? That sounds
so one of those things would behard. No, yes.
Yes. And the journey, you know,it was, it was a really
powerful experience in the sensethat
(21:12):
it forced me to be present. Ihad to really focus on okay,
even then the point when it waspouring rain and cold, I had to
get out of my tent, pack up mygear, dripping wet, make sure
I'm dressed warm enough, makesure I get, you know, breakfast,
and get on my bike for yetanother day and potentially ride
(21:35):
in the cold rain wind, knowingthat I'm not going to be dry at
the next destination or warmnecessarily, and, and when I'm
out on the road for 75 milesfacing another hill, or, let's
say curve in the road, I Ireally had to focus on just one
(21:58):
pedal at a time. And and thatforced me to be really present.
And I gained so much confidencein myself from that entire
experience, I can'timagine that's like, major
stuff, yeah, and you weren'tyour regular self. I mean, you
had to really push yourself. Andthat's where that mindset comes
in. You know, I had cancer in2018 I was diagnosed with breast
(22:22):
cancer. It seems to be a I don'tknow, 2018 was tough, and they
caught it really early, and Iwas really lucky, but I did go
through radiation. I wasexhausted, and I remember what
you just said reminded me of howI got through it, because I'm a
worrier and I think ahead and Iworry about things that haven't
(22:42):
happened yet, and I'm like crazythat way, but the way I got
through it was I just said,we're just going to worry about
the next step in the road. We'regoing to go to the next doctor's
appointment. We're not going toworry about all that stuff in
the future. We're just going toget through Wednesday and then
we'll do the next thing. Andthat seems so simplistic, but
somehow I was ready at that timein my life to do it that way,
(23:04):
and it was such a gift tomyself. And I felt so, I mean,
it was almost eerie how calm Iwas like when she, you know,
when she told me I had cancer,she was shocked that I was so
but, but, I mean, I knew that, Iprobably did, you know, we had
all these extra tests andbiopsies. And I just, you know,
I knew that's the point, rightof having all these biopsies and
(23:27):
mammograms, it's to find itearly. And I just think, I think
that's so wonderful, what youjust said that you just were
present, because it's a greatway to remember how to be in our
regular lives,absolutely, and I love what you
said aboutit sounds simplistic, but, but
that, but it is, you know, it's,you know, I went on to create a
(23:52):
mantra. But like, I startedasking myself, well, what can I
do? I stopped focusing on what Icould no longer do, and I
started focusing on okay, whatcan I do? And I took the word
can, and I made a mantra out ofit, using each letter, C, A, N,
capable, able. Now. What am Icapable and able to do now in
(24:14):
this moment? And so, like yousaid, it was just okay. All I
have to do is get to the nextmoment. And yeah, some days that
meant I can get up and brush myteeth, yeah, or I can get up and
get out of my pajamas today. Andthen other days it was like I
can get out and ride my bike orgo have dinner with friends and,
(24:39):
you know, and eventually itturned into 1800 miles. And I'm
not saying that other peoplehave to go out and do 1800
miles, but you know what? Whatcan you do to get you to the
next thing? And sometimes it'sall that matters, you know, it's
like, okay, what can I do inthis moment? Mm. I
(25:00):
think that's so beautiful. And Ialso think what I what I heard
before, like, I think we fearwhen things happen to us and
we're in this different state,we're really tired, or we're
like, kind of, you know,decimated by an illness. We feel
like, part of us feel like it'salways going to be that way, and
it's, it's really good to focuson the now and getting through
(25:21):
those little things, and torealize that we won't always be
that way, that it will getbetter. It's hard to realize
that when you're ill,absolutely, absolutely and you
know, I think, you know, one ofmy think it's important to stay
flexible. You know, one of mydear friends, on my 40th
birthday, gave me a littlebendable Gumby. You know the
(25:44):
little green character, Gumbyand and you can bend this little
character. And I'm just like,Okay, why did you give me this
little Gumby? And she said, toremind you to stay flexible. And
so I strapped gummy to the frontof my bike, and I've taken that
with me every like, everywhere Igo, in the like, even just in my
(26:08):
mindset, because, you know, mybody continues to kind of
deconstruct, like I'm it'sbecoming more and more
challenging to do things. Butinstead of fighting it, I'm
flexing with it like so I'mstarting to pick up new hobbies
and other things that I'vealways wanted to try that I
(26:31):
never could. And I I took, um, Idid a bike ride across northern
Spain earlier this year, and itwas it challenged me,
physically, emotionally andmentally beyond anything I could
have imagined. And I and Istarted asking myself those
questions, well, what can I donow? And and what I realized is
(26:54):
I may not be that hardcore fardistance cyclists anymore, but
it doesn't mean I can't stillbike, and it doesn't mean I
can't take the improv class I'vealways wanted to take go out
dancing. Yeah, so, so I'm juststarting. I'm just be staying
(27:17):
flexible and flexing with thisdisease I live with and and that
makes it so much easier to gothrough life than to be fighting
it.
You said a mouthful. I thinkthat's so wonderful. Yes, I also
(27:37):
think no, but I mean that, thatblack and white thinking that we
tend to get into. It's like, oh,I can't cycle now, and I can't,
you know, it's just that's nottrue, right? That's not true. We
could do things differently. Wecould do different things.
Definitely. That's sogreat, and your mindset is so
great. Your friend soundsamazing. I love the Gumby gift,
yes. So what, what do these dayslook like? Are you? Are you
(28:03):
feeling well? Are you, you know,are you kind of plateauing, or
where are you in your disease?
Um,it's hard, because you seem so
healthy. Uh, yeah, so healthy.
You sound sohealthy, yes. And I get that a
lot, and I do, I do believethat's because of my mindset. I
(28:25):
agree. And so my body'sdefinitely struggling, and
I'm in a place of, like, I knowthere's something off, you know,
like I have low iron levels,which could attribute, be
(28:46):
attributed to the medicationsI'm on, or maybe not the right
diet, or there's so manyvariables involved. So a lot of
times it's exploration. It'strying something new. I'm on my
fifth or sixth medication.
Sometimes I go back and trymedications again, but maybe a
(29:07):
little adjust the dose or how Itake it, so I'm still we're
figuring it out. It's it's beenabout six years now since my
initial diagnosis, and I haven'thit a place of just cruising
along with it. Unfortunately,most people do, which is great.
(29:35):
Unfortunately, nothing seems tobe working for me yet, yet, but,
andthat's that you keep trying. I
know medication can drive younuts, but you have to keep
trying exactlyand and it doesn't mean
something won't work down theroad,
right? Good for you. I'm notwondering, because you look so
(29:58):
healthy and sound so healthy, itmust be hard. Sometimes when
people who don't know you, theythink you're fine, right? That's
tough.
Yeah, it's it's very tough.
Thank you for acknowledgingthat.
My mother had a terrible,painful disease, and she looked
as healthy as could be until theday she died. It's very
difficult. It's very hard.
People don't doctors don'tbelieve you when you look that
(30:18):
well, she was so pink. And, youknow, like they just don't,
yeah, so yeah, I just, I knowthat's part of it, yeah.
And it's, and you rarely do yourun into someone who truly wants
to sit and take the time tolisten and understand what
you're going through. And, youknow, and I don't, I don't blame
(30:41):
people. You know, we're allbusy. We have lives, and we're
doing our own thing. So I try toshare an abbreviated form, but I
quickly learned that it wasreally hard to describe this to
people, and that's why I went onto write my book, because I love
(31:02):
the power of story, and so Iwanted to tell it through a good
story, my story and and peoplestarted listening because I told
it differently than Yeah. So doyou know I did a little research
before I started this podcastabout I was very drawn to the
(31:22):
idea of the stories, but Iwanted to do a little research
on story. And I mean, I am anEnglish major, so I naturally
love stories, and I'm a writer,but I wanted to know more about,
like, the structure of story,and how long have we told
stories, and when do we starttelling stories? And blah, blah,
blah, and you seem tointuitively understand human
beings learn from story. That'show they learn the best. And I
(31:42):
thought that was so fascinating.
I actually read this littleexample. It said, you know,
we've been telling stories formillennia. Like they said, you
know, even fairy tales are,like, hundreds of years old, you
know, anything that comes likeAesop's Fables, we still tell
those, you know. And those are,like, really old, but they said
they have a funny feeling, likeeven back in the Neolithic
(32:05):
times, or, you know, the theysaid the caveman times, if there
was a tiger around the the bend,you don't just say, Don't go
over there, or don't go overthere, there's a tiger. You say,
Don't go over there. And mycousin got attacked by a tiger
yesterday morning, like you givea story, and so that hits
people's brain and theyunderstand. So you just seem to
(32:27):
know that intuitively.
Yes, thank you. And I, I've beenbecause this is part of the work
I've been trying to do. I'vebeen reaching out to medical
schools, saying, Hey, can I cometell my story? Because if you
ask a medical student, hey, doyou know what acromegaly is,
they'll say, I don't think so.
Or I might have, we might haveread a paragraph about it in our
(32:50):
endocrinology class, but wedidn't really discuss it or but
I guarantee if I went in thereand told my story and said, oh,
and I rode my bike 1800 miles.
In spite of it, they're going toremember the girl with
acromegaly who rode her bikereally far. So
(33:11):
human, yeah, to connect that waywith story good for you. Now you
do work. You, you work on this,right? You, you help educate,
and you tell, tell us a littlemore about what you do to make
people aware.
Yeah, so I started this was byaccident, actually, I because I
wasn't finding much muchinformation out there about
(33:34):
pituitary tumors, because theythey cause all kinds of
diseases, not just acromegaly.
You might have heard ofCushing's before and so. And I
was like, Why isn't there moreinformation? So I started
saying, Okay, I maybe I'll starttrying to bring awareness. And
(33:55):
so I started asking people like,Hey, will you post my story on
your website. And then Ithought, Okay, I'll buy myself a
jersey that has like, somethingon it, you know? And and then I
contacted the same specialistthat said I shouldn't do this
bike ride. And he but he foundit fascinating. He found it
(34:18):
really cool and fascinating thatI was doing this, and he put me
in touch with some otherorganizations, and suddenly I'm
contracting with pharmaceuticalcompanies, and they're helping
me spread the word and and Istarted traveling to speak on
stages and share my story and sogood sponsored through the bike
(34:43):
ride and passing out buttons andall kinds of things, just
kind of grew organically. Thoseare the best kinds of things
where you just make a couple ofcontacts before you know it. It
just grows. That's wonderful.
Good for you. It must feel sogood to help spread. That word
and to and to make sure thatpeople aren't where you were,
where you just couldn't findenough info that makes me feel
(35:05):
good that you're doing that.
Thank you. I feel emotional overthat, that when you say that you
know if, if I can, just, if Ican save some lives, like, if I
can save people from my sametrajectory or my same prognosis
just by getting them diagnosedearlier. Oh my gosh, that that's
(35:29):
my goal. That's what I want,like that's what I want more
than anything. Ilove that that's so good. It's
such a nice response to thetroubles you've had. And that's
what I love about storied humanis people learn from your story.
They get inspired from yourstory. They probably, if it
applies to them, right, go gettesting, or go to another
doctor, or they know what tosay. Now, because of you, you
(35:50):
just never know who's listening.
And that's what I love, is likewe don't, we don't always know
everything, and we have to heara lot of different people, and
we learn, I always say you don'thave to go through something,
either to learn from someone youknow, you don't have to, you
don't have to mess up yourselfor go through something. You can
always learn from somebodyelse's experience, if you pay
(36:11):
attention. And there's a lot tolearn here, not just about
pituitary tumors, but aboutmindset and about not giving up,
and about, you know, shiftingand being, you know, shifting
your perspective and beingflexible. And that's always good
advice, right? That's, that'sjust, we always need to hear
that a lot of us get stuck inour, you know, our everyday
(36:33):
routines, right, right? It's sotrue and, and I have to say,
like, I know we probably hearthis a lot from people, but I,
you know, it really changed mefor the better it, and that's,
that's the gift in it for me, isI'm truly a better human being,
and I strive to be better everyday, just a better person on the
(36:55):
planet that and everyone Iinteract With. You know, can I
be just better in relationshipsand, you know, just a better
human and different.
It changed you. You let itchange you. I think that also,
there's that lovely gift ofcompassion that comes from going
through these things. I feellike, I mean, I lost my mother,
(37:16):
you know, a long time ago, butthe grief was so deep, and I've,
I've still, I'm still exploringit, you know, years later,
because I had little kids whenshe died, and so I just kept
going on with my life, but it'smade me much more compassionate,
you know, like the sometimesthese bad things that happen to
us really do leave us with agift, because we're all human.
(37:38):
We're all going to go throughstuff, yeah, and it's lovely
that you found yourself on theother side with some gifts. Yes.
You know what's better thanthat? Yeah?
And so I imagine that changedyour relationship with your own
kids, yeah, mother, yeah.
It was, it was really sad for awhile because they were so
(37:58):
little, and I was like, Oh, theydon't get to be with her, but I
took myself to a therapistbecause I was really not getting
better, and she just taught methe most beautiful lesson about
getting through feelings, andI'll just never, ever forget it.
And one of the things I got outof it was, I don't remember how
I related that. She just said,There's no way to to stuff your
(38:21):
feelings down, or get rid ofyour feeling. You have to walk
through them. She said you couldavoid it for years, but they
don't go away. And I had stuffdown a lot, because that's what,
you know, nice girls do.
I can. AndI remember saying to her, you
know, I'm so sad that I'm afraidif I start crying, I will never
stop, and I think that's reallywhat people feel sometimes in
(38:42):
grief. And the funny thing is,we all lose someone, so we need
to just share that. It's not anegative thing at all. It's a
let's share that and becompassionate and help people
through it. But the most lovelything happened was, after I went
through the therapy, I came homeand my kids were, like, three
and five, and I had had heard atthe same time, I had heard,
(39:04):
don't break the hug with alittle child, let them break the
hug. It was such a simple thing.
And I hugged my daughter thatday, and I just didn't stop. And
I noticed this was so profoundfor me. She held that hug so
much longer than I would have,because I was like, Oh, I gotta
(39:27):
go do the dishes, and I gotta goclean this. And I got, she held
that hug so long because theydon't have those pressing issues
when they're little. And okay,so the you know, the upshot is,
I got all that, you know. Whatdo they call it? That oxytocin?
I got all that oxytocin hormonefrom the hug. But what a
(39:49):
beautiful thing, and how muchmore secure children are when
you let them call, call the hug,you know. So there's like gifts
from all these I really feellike. What you said is so
powerful, and I thank you somuch for sharing it. Now, did we
miss anything? Is there anythingyou'd like to share or add?
I don't think so. Thank you forsharing that, though I and,
(40:11):
yeah, beautiful story. Thankyou. You brought that
out in me. I don't know. You'rejust really reminding me of
things, and in your heart, Ijust, I'm really appreciative of
you. Thank you for coming on nowtell us how we can get in touch
with you. I havea website, Risa, august.com,
(40:32):
so I'd like to say it not justput it in the show notes. Some
people don't read the shownotes, yeah, and they can get on
there and they can learn whereto get your book. There's a nice
page on there about your book,and I'm going to read your book
because I love your story. Isthere anything else that we do
people? Can people get to you inany other way? I noticed there
(40:52):
was a contact tab on yourwebsite.
Yes. August.com, has it all, andthat's Rissa with 1s R, I
S? Would I call you the wrongname? No, no.
But a lot of people spell itwith two s's because the way
it's pronounced. So I was justsaying 1s and with 1s and
(41:15):
August, just like the month.comand that has everything I I want
to convey, you know, I'm therepeople are so layered, and
there's so many things and so onmy website, you can find all the
different fun things I'm doingand into. And you say, you do
(41:37):
an amazing amount of thing. Youmake me want to have sparkly
hair.
You do those beautiful we callthem talking sticks, but you
call them voice and voice andart, or nice and story art,
yeah, voice and story art. Talka little bit about that, because
they looked wonderful. Ohmy gosh, yes, that that also
happened by accident. I wasfinishing up my certification
(41:58):
English and Gestalt coaching,and I, I was trying to, I
couldn't. I was still in thosetattered gray sweat pants, but I
got off the couch. I couldn'tget on my bike yet, but I needed
something, so I startedpainting. And I don't consider
myself an artist, I but I wastrying to think of something to
(42:21):
gift the other people I would begraduating with in a month from
this program. And I thought, ohmy gosh, when they hold i like i
I'm so drawn to native cultures.
And so I I researched all aboutthe Native Americans, talking
stick and learning all about itand and I decided that was what
(42:44):
I was going to gift each person.
And so I began painting thosesticks and really getting into
details and adornments. Andafter I gifted those, they were
like, these are amazing. Youneed to be selling these. And I
said, No, no, no, no, no, no,I'm not an artist. Well, before
I knew it, I started sellingthem all around the world, and
beautiful. Yeah, they werereally, it was really, though,
(43:08):
my healing process. It wasn'tit. I never meant to turn it
into a business or anything. Iit was a healing process for me
to get myself off the couch andeventually get myself back on my
bike,and I started painting. That's
so cool. That's such a niceresponse, though, to not being
(43:30):
able to do much. I mean, I don'tknow if a lot of people would
say, I think I'll paint. That'spretty cool. Yeah. And then how
about the sparkly hair? Is thatthe is that little, um, like,
little threads that you add thatare sparkly.
They are so they're made ofsilk. They're really high
quality product. And I ran intoa gal in Oregon who was they she
(43:51):
was at a large artist event, andshe was a vendor at an artist
event, and she was putting thesesilky, sparkly strands into
people's hair. And I mean, rightaway I was drawn to it. I
started seeing all the women,not just children, but all the
women, some men that werewalking away from this booth
(44:15):
with these sparkles in theirhair, just beaming. And I
remember thinking I was beaming,because they were beaming. And I
loved looking at these sparklesin their hair, and I thought it
looked amazing. And then Iwanted them. And so I ended up
becoming friends with the galwho started this company called
Lucky locks.co and she and Ibecame a mobile partner for her.
(44:41):
And so I started doing it simplyto spread joy. It just lights up
a room. I do a lot of women'sconferences and retreats, lot of
women's groups, and it justlights up the the room. It
just learned like that, youknow. And. Have a friend who,
who has her I'm not sure whereshe goes, but she shows up with
(45:04):
those. She calls them fairyhair, that she gets fairy hair,
and it's, it's hard not to smilewhen you see that. I so I was
very excited when I saw that.
You do that too. So you aremultifaceted, for sure. Thank
you, and I can't thank youenough for coming on. It was
great. I love talking to you.
I'mso grateful. Thank you so much,
Lynne, for having me on yourshow was really
(45:27):
good. Take care. You too. Bye.
Risa, hello and welcome to the storied human today. My
(00:05):
guest is Risa August. Sherecently published a multi award
winning memoir called the roadunpaved, border to border with a
brain tumor and a bike. It'sabout a major life altering
diagnosis and personal lifeupheaval. She shares about the
change in her own perspectiveand how she faced her own
limiting beliefs. After beingtold she shouldn't, she decided
(00:29):
to ride her bike the 1845 milesfrom Canada to Mexico. I can't
wait to hear about that. Reese'sultimate goal is to save lives
and also to inspire and empowerothers. By day, she is a
speaker, Gestalt practitionerand patient advocate for rare
pituitary tumors. She offersinspirational coaching to those
(00:51):
feeling stuck with their ownlimiting beliefs. So nice to
meet you. Welcome. Risa,I am so grateful to be here.
Lynne, thank you for having mewonderful.
So it's so good that we finallygot it to work our dates, our
date. So we love to just let youstart where you think would help
(01:13):
us understand how you got tothis point, how you were able to
do these amazing things.
Oh, gosh. Well, it was acomplete life overhaul.
It was in 2018when I was diagnosed with a
tumor at the base of my braincausing a rare and destructive
(01:34):
disease. But I started noticingchanges in my body about seven
years prior to that, but doctorsweren't listening, and I kept
being dismissed. And it was, itwas really frustrating, but I
fast forward to 2018, and I Ihad such severe headaches I
(01:57):
couldn't ignore them. I wasbarely sleeping two hours a
night, and nothing was working,despite my doctor saying things
like, well, you're probablydehydrated or over training, or,
you know, not eating well and soand I would hear it time and
(02:21):
time again, well, your bloodwork is fine, you're fine,
you're active. I'm not worriedand and typically, I'm not
someone to really stress aboutthings, because I I've always
taken really good care of mybody. I was an athlete for a
very long time, very rigid in myeating. But this was undeniable.
(02:43):
This was something wasdefinitely off, and I asked for
an MRI, and I was told no twice,and the third time I said, Okay,
I'm not going to ask this time.
(03:05):
I'm going to demand it and andthat's what I did. And one week
later, I had a email from mydoctor saying, you have an
enlarged pituitary. Go see anendocrinologist. I had no idea
what that was. I had no ideawhat an enlarged pituitary was.
I didn't know what anendocrinologist was. And so one
(03:29):
week later, I'm sitting in theendocrinologist office, and I'm
staring at my skull on thescreen, and right between the
eyeballs is this giant grayblob, and this extremely
compassionate doctor is lookingat me and pointing to this big
gray blob, saying, This has gotto come out
(03:52):
and and there wasn't.
She was different. It wasn't. Itwasn't a matter of fact. You
know, doctors tend to be morebusiness like and she had more
of this sense of urgency. And,and I picked up on it. And I was
(04:17):
like, Okay, this is serious. OhGod. And and then after that,
she said, Oh, and of 99% sure Iknow what you have. And I said,
Wait a minute, what do you mean?
What I have? What do I have?
Like, I have a tumor. What doyou mean? And she said, Well,
(04:38):
this tumor causes a rare diseasecalled acromegaly, and that
explains everything you've beentalking about over the past
seven years. Oh my gosh, yeah.
And whydon't they believe women these
doctor? I mean, you lost so muchtime, you know? Yeah, kind of
drives me. Crazy, right?
(05:02):
And, and, you know, these tumorstend to be slow growing and, but
so it it's quite possible thatthis tumor has been doing damage
to my body for decades, but itwas about seven years out when I
finally noticed changes andsymptoms in my body.
(05:25):
What reallypropelled me toward the work I
do today is I went home that daytrying to research, okay, what
is this? What is acromegaly?
What are pituitary tumors? Iwant to understand this. How can
(05:46):
I fix it? How can I get throughit all the questions, and there
wasn't a lot of information outthere, and that really was It
was frustrating for someone likeme, wanting to understand, okay,
what are the treatments? How canI move forward? But I wasn't
given options. I was told brainsurgery and radiation treatment,
(06:12):
and then you'll most likely haveto be on medication. And so I
fought against that a little bitin the beginning and again,
struggled to find other options.
So following brain surgery andradiation treatment, I started
connecting with specialists andother people organizations who
(06:35):
knew more about these tumors andthis disease. And what I did
learn is that although they callthem, they call it rare. It's
believed to not be so rare. It'sit's believed that many people
are walking around with thesetumors, but they're really
difficult to diagnose. And thatwas this repetitive story I kept
(06:57):
hearing like mine. It took fiveyears to diagnose, seven years,
10 years to diagnose. I'veprobably been walking around
with it for decades. My verygood friend has had his for 30
years before they diagnosed. Itso
and by then, it's done extensivedamage.
(07:20):
If these tumors are caught earlyenough, you could go on to live
a relatively normal life. Butagain, they're difficult to
diagnose because my symptomswere fatigue,
joint pain, headaches,could be a lot of stuff. Yeah,
(07:41):
anythinghormone based, anything hormone
related. You know, hormonescontrol everything in our body,
everything so any skin changes,hair changes, you know, my my
teeth were moving all kinds ofthings that you would never even
think of. You wouldn't connectit, yeah, and, and so.
(08:10):
So I decided after about eightmonths post brain surgery,
radiation treatments on amedication that wasn't working.
I was sitting on my couch againfor another day exhausted.
Barely could get off the couch.
I've been sitting in thesetattered gray sweatpants for
(08:34):
what seemed like years, and Ijust I remember thinking, This
is no way to live. This can't beit. I'm i This can't be it. And
that was the day I decided I wasgoing to ride my bike from
Canada to Mexico.
That's not the conclusion mostof us would think of, but I do
(08:58):
love that. Yeah, so you heardabout it and just said, Yeah,
I'm going to do that. Dothat. Yes. Well, you know, I had
this life altering change andcircumstance, and, of course, I
became very reflective on mylife, like, am I living the life
I always wanted. What happenedto that list of all the things
(09:22):
I've always wanted to do? A lotof people call it a bucket list,
you know? And I knew I neededsomething to work toward. I knew
I needed something to live for.
As dramatic as that may sound,that's what it felt like for me
(09:44):
in that moment, and so I knew Iwould never do another Iron Man
race, or be as competitive insports or the athlete I used to
be. It was really painful towalk. And, and the fatigue was
just incredible. I'd neverexperienced anything like it,
(10:07):
and, but I thought, okay, I betI could still ride my bike.
I bet that's amazing to me.
Yeah, that's amazing to me thatnow who told you you shouldn't?
Well, during this time, youknow, I began educating myself
(10:27):
more. So I started going toendocrinology conferences,
getting more involved withorganizations like pituitary
organizations, and learning asmuch as I could out what was out
there connecting withpharmaceutical companies. What
kind of medications do theyhave? What treatments are
possible, meeting other doctorsthat specialize in pituitaries,
(10:51):
and which are very few. Mostendocrinologists focus on
thyroid and diabetes. And so Ijust started, you know, taking
money out of my own pocket andtraveling to events and learning
as much as I could, and I wentto this endocrinology
(11:11):
conference, and I talked aboutthis in my book, and I remember
meeting this neuroendocrinologist who specializes
in acromegaly, they're such acool cat, just really cool guy,
and not your typical doctor. Andhe we were sitting in a session
(11:34):
and with a group of maybe 60people, and I had flyers. I
passed out flyers to peopleattending the conference,
saying, Hey, I'm doing this bikeride from Canada to Mexico to
bring awareness to this disease.
And so this guy in the audienceis holding up this flyer, and
(11:55):
he's like, What do you thinkabout this girl doing this bike
ride? And this doctor said, if Iwas her practicing physician, I
would tell her not to. I wouldtell her it's not a good idea
that she shouldn't do that. Andthat was another moment where I
(12:15):
said, challenge accepted. That'swhere I realized, wait a minute,
I love that I get to choose howI move forward, right? Not a
doctor, not anyone else. I getto make that decision and and
from that out, that was like,rocket fuel for me. I was like,
(12:40):
I'll show you. Challengeaccepted.
I love that.
Did he say, why? Like, did hesay it would be too much, or
would stress you, or you wouldget worse, or, I mean, was there
a specific reason?
Um, I mean, there were variousreasons because of some of the
(13:02):
complications I had with mysurgery. And, you know, my body
doesn't process sodium the way,oh, okay, it does for normally,
for a healthy pituitary. And sodehydration or over hydration,
(13:22):
can be life threatening foranybody but someone with my
condition. It's even more riskyand but also
putting any kind of excessiveimpact. On the joints
(13:46):
for someone with acromegaly canreally speed up the
deterioration process, and andso. So those are the two that
come to mind right away. I kindof tuned him out at that point,
because I was like, well,whatever, you know, and and so,
(14:07):
so those are real things that Ihad to take into account. But it
just made me more determined toshow him or anybody that I get
to make that decision on what Iget to do and what I maybe
shouldn't do. That's my choice.
(14:29):
That's amazing to me, that thatthat was your response, and I
admire that. Did you do thisalone?
This particular ride, I signedup with a tour company, and it's
called a semi supported tour. Some, along with nine other
cyclists, low dollar campinggear, everything we have into a
(14:55):
van, and the van transports ourgear to the next site to. Next
campground sounds reasonable,yeah, yeah, which is anywhere
from 55 to 75 miles away. Soand, and it's up to us to figure
out how to get there. You know,we we have our own maps, and we
(15:18):
have to take all our own foodand any repair kits, anything
like that. I thought it would bea safer way to go.
This was my firstagain. I didn't just get right
out on my bike. I took 14 monthsto train following following
that day where I decided to dothis, and I wasn't sure how my
(15:40):
body would respond. So this feltlike a safer way to go. Yeah, it
started off as being a moreannoying way to go, but, but I
felt like it would I would havebackup if I needed it. Yeah,
(16:04):
and I'm thinking, you maybedidn't go as fast as you might
have gone in the past. Was thatan issue? Like, did other people
go faster, or did was there avariety of speeds? There was a
varietyof speeds. A couple people were
very fast. I was middle of thepack. I was good. Actually felt
very strong in my cycling, andit felt like I came back very
(16:29):
strong and so good. Yeah. Andthere were other people that
took their time and rode slower.
I think partly by choice, theywanted to take their time. And
yeah, for a little bit, and,but, man, on those rainy, cold
days, I probably pedaled faster.
I can't imagine, yeah, I doimagine that there, you know,
(16:57):
people who were athletes whenthey were younger, they have,
like, a base, like a good baseof fitness and muscle, and, you
know, you're trained, and thatdoesn't go away. So it's kind of
cool that you were able to, youknow, bring it back and be in
the middle. That's prettyimpressive. Oh, everything you
went through, right? Yes,I definitely, you know, might
agree with that. But and alsomindset. Mindset is extremely
(17:21):
important. I mean, that's one ofour can be one of our strongest
muscles to get us through someof the hardest things in life.
So so that that grit, thatdetermination, that on some
days, I had to really dig deepfor I owe that to my, my mindset
and my, my brain strength,that's so impressive, and it's
(17:47):
so true. It makes thedifference. It's so powerful.
Yeah, it helps everything thatwe do. So yeah, you were, oh my
gosh. How did this How long didthis take you?
So this trip took 41 days. I hadfour rest days, and
I had to figure out how to getmy medication. I had very
(18:14):
complicated medication to and Ihad to get it shipped to like
urgent care hospitals and find apractitioner that knew how to
administer and handle thismedication. It's not as simple
as sticking me with a needle. Ithas to be reconstituted just
(18:38):
right and and it can't be leftout too long or too short, and
it's it's a little bit complex,and the first one was completely
a mess, and, yeah, and it's avery expensive mistake. The
medication is about $5,000 ashot and a very expensive error.
(19:06):
So, so there were challengeslike that and weather and bike
crashes, and, you know, dealingwith 10 personalities, and there
were all kinds of things that Ididn't expect, but there was
also a lot of beautiful outcomesand unfolded in unforeseen ways,
(19:33):
which was really wonderful. Whatan experience,
and what did it feel like whenyou actually got to the end,
to be honest,it felt a little anticlimactic.
I I was going, I had a lot ofpurse. Things going on in my
(20:01):
life. I was facing divorce froman 18 year marriage. I was
exploring a new identity and andthen also in this body that no
longer functioned the same wayit and it wasn't just my it's
not just my body that's impactedmy cognition, memory. A lot of
(20:26):
brain stuff was happening aswell. And so I was now facing
that I was I had, now had to goback to what, what is my life
going to look like now?
Oh, that's hard. Yeah, yeah. Youwere, like, sort of captivated
(20:47):
by all the things that werehappening on the journey. And
you didn't have to think aboutyour real life, you know, and
then you have to go back andsay, Who am I now? That sounds
so one of those things would behard. No, yes.
Yes. And the journey, you know,it was, it was a really
powerful experience in the sensethat
(21:12):
it forced me to be present. Ihad to really focus on okay,
even then the point when it waspouring rain and cold, I had to
get out of my tent, pack up mygear, dripping wet, make sure
I'm dressed warm enough, makesure I get, you know, breakfast,
and get on my bike for yetanother day and potentially ride
(21:35):
in the cold rain wind, knowingthat I'm not going to be dry at
the next destination or warmnecessarily, and, and when I'm
out on the road for 75 milesfacing another hill, or, let's
say curve in the road, I Ireally had to focus on just one
(21:58):
pedal at a time. And and thatforced me to be really present.
And I gained so much confidencein myself from that entire
experience, I can'timagine that's like, major
stuff, yeah, and you weren'tyour regular self. I mean, you
had to really push yourself. Andthat's where that mindset comes
in. You know, I had cancer in2018 I was diagnosed with breast
(22:22):
cancer. It seems to be a I don'tknow, 2018 was tough, and they
caught it really early, and Iwas really lucky, but I did go
through radiation. I wasexhausted, and I remember what
you just said reminded me of howI got through it, because I'm a
worrier and I think ahead and Iworry about things that haven't
(22:42):
happened yet, and I'm like crazythat way, but the way I got
through it was I just said,we're just going to worry about
the next step in the road. We'regoing to go to the next doctor's
appointment. We're not going toworry about all that stuff in
the future. We're just going toget through Wednesday and then
we'll do the next thing. Andthat seems so simplistic, but
somehow I was ready at that timein my life to do it that way,
(23:04):
and it was such a gift tomyself. And I felt so, I mean,
it was almost eerie how calm Iwas like when she, you know,
when she told me I had cancer,she was shocked that I was so
but, but, I mean, I knew that, Iprobably did, you know, we had
all these extra tests andbiopsies. And I just, you know,
I knew that's the point, rightof having all these biopsies and
(23:27):
mammograms, it's to find itearly. And I just think, I think
that's so wonderful, what youjust said that you just were
present, because it's a greatway to remember how to be in our
regular lives,absolutely, and I love what you
said aboutit sounds simplistic, but, but
that, but it is, you know, it's,you know, I went on to create a
(23:52):
mantra. But like, I startedasking myself, well, what can I
do? I stopped focusing on what Icould no longer do, and I
started focusing on okay, whatcan I do? And I took the word
can, and I made a mantra out ofit, using each letter, C, A, N,
capable, able. Now. What am Icapable and able to do now in
(24:14):
this moment? And so, like yousaid, it was just okay. All I
have to do is get to the nextmoment. And yeah, some days that
meant I can get up and brush myteeth, yeah, or I can get up and
get out of my pajamas today. Andthen other days it was like I
can get out and ride my bike orgo have dinner with friends and,
(24:39):
you know, and eventually itturned into 1800 miles. And I'm
not saying that other peoplehave to go out and do 1800
miles, but you know what? Whatcan you do to get you to the
next thing? And sometimes it'sall that matters, you know, it's
like, okay, what can I do inthis moment? Mm. I
(25:00):
think that's so beautiful. And Ialso think what I what I heard
before, like, I think we fearwhen things happen to us and
we're in this different state,we're really tired, or we're
like, kind of, you know,decimated by an illness. We feel
like, part of us feel like it'salways going to be that way, and
it's, it's really good to focuson the now and getting through
(25:21):
those little things, and torealize that we won't always be
that way, that it will getbetter. It's hard to realize
that when you're ill,absolutely, absolutely and you
know, I think, you know, one ofmy think it's important to stay
flexible. You know, one of mydear friends, on my 40th
birthday, gave me a littlebendable Gumby. You know the
(25:44):
little green character, Gumbyand and you can bend this little
character. And I'm just like,Okay, why did you give me this
little Gumby? And she said, toremind you to stay flexible. And
so I strapped gummy to the frontof my bike, and I've taken that
with me every like, everywhere Igo, in the like, even just in my
(26:08):
mindset, because, you know, mybody continues to kind of
deconstruct, like I'm it'sbecoming more and more
challenging to do things. Butinstead of fighting it, I'm
flexing with it like so I'mstarting to pick up new hobbies
and other things that I'vealways wanted to try that I
(26:31):
never could. And I I took, um, Idid a bike ride across northern
Spain earlier this year, and itwas it challenged me,
physically, emotionally andmentally beyond anything I could
have imagined. And I and Istarted asking myself those
questions, well, what can I donow? And and what I realized is
(26:54):
I may not be that hardcore fardistance cyclists anymore, but
it doesn't mean I can't stillbike, and it doesn't mean I
can't take the improv class I'vealways wanted to take go out
dancing. Yeah, so, so I'm juststarting. I'm just be staying
(27:17):
flexible and flexing with thisdisease I live with and and that
makes it so much easier to gothrough life than to be fighting
it.
You said a mouthful. I thinkthat's so wonderful. Yes, I also
(27:37):
think no, but I mean that, thatblack and white thinking that we
tend to get into. It's like, oh,I can't cycle now, and I can't,
you know, it's just that's nottrue, right? That's not true. We
could do things differently. Wecould do different things.
Definitely. That's sogreat, and your mindset is so
great. Your friend soundsamazing. I love the Gumby gift,
yes. So what, what do these dayslook like? Are you? Are you
(28:03):
feeling well? Are you, you know,are you kind of plateauing, or
where are you in your disease?
Um,it's hard, because you seem so
healthy. Uh, yeah, so healthy.
You sound sohealthy, yes. And I get that a
lot, and I do, I do believethat's because of my mindset. I
(28:25):
agree. And so my body'sdefinitely struggling, and
I'm in a place of, like, I knowthere's something off, you know,
like I have low iron levels,which could attribute, be
(28:46):
attributed to the medicationsI'm on, or maybe not the right
diet, or there's so manyvariables involved. So a lot of
times it's exploration. It'strying something new. I'm on my
fifth or sixth medication.
Sometimes I go back and trymedications again, but maybe a
(29:07):
little adjust the dose or how Itake it, so I'm still we're
figuring it out. It's it's beenabout six years now since my
initial diagnosis, and I haven'thit a place of just cruising
along with it. Unfortunately,most people do, which is great.
(29:35):
Unfortunately, nothing seems tobe working for me yet, yet, but,
andthat's that you keep trying. I
know medication can drive younuts, but you have to keep
trying exactlyand and it doesn't mean
something won't work down theroad,
right? Good for you. I'm notwondering, because you look so
(29:58):
healthy and sound so healthy, itmust be hard. Sometimes when
people who don't know you, theythink you're fine, right? That's
tough.
Yeah, it's it's very tough.
Thank you for acknowledgingthat.
My mother had a terrible,painful disease, and she looked
as healthy as could be until theday she died. It's very
difficult. It's very hard.
People don't doctors don'tbelieve you when you look that
(30:18):
well, she was so pink. And, youknow, like they just don't,
yeah, so yeah, I just, I knowthat's part of it, yeah.
And it's, and you rarely do yourun into someone who truly wants
to sit and take the time tolisten and understand what
you're going through. And, youknow, and I don't, I don't blame
(30:41):
people. You know, we're allbusy. We have lives, and we're
doing our own thing. So I try toshare an abbreviated form, but I
quickly learned that it wasreally hard to describe this to
people, and that's why I went onto write my book, because I love
(31:02):
the power of story, and so Iwanted to tell it through a good
story, my story and and peoplestarted listening because I told
it differently than Yeah. So doyou know I did a little research
before I started this podcastabout I was very drawn to the
(31:22):
idea of the stories, but Iwanted to do a little research
on story. And I mean, I am anEnglish major, so I naturally
love stories, and I'm a writer,but I wanted to know more about,
like, the structure of story,and how long have we told
stories, and when do we starttelling stories? And blah, blah,
blah, and you seem tointuitively understand human
beings learn from story. That'show they learn the best. And I
(31:42):
thought that was so fascinating.
I actually read this littleexample. It said, you know,
we've been telling stories formillennia. Like they said, you
know, even fairy tales are,like, hundreds of years old, you
know, anything that comes likeAesop's Fables, we still tell
those, you know. And those are,like, really old, but they said
they have a funny feeling, likeeven back in the Neolithic
(32:05):
times, or, you know, the theysaid the caveman times, if there
was a tiger around the the bend,you don't just say, Don't go
over there, or don't go overthere, there's a tiger. You say,
Don't go over there. And mycousin got attacked by a tiger
yesterday morning, like you givea story, and so that hits
people's brain and theyunderstand. So you just seem to
(32:27):
know that intuitively.
Yes, thank you. And I, I've beenbecause this is part of the work
I've been trying to do. I'vebeen reaching out to medical
schools, saying, Hey, can I cometell my story? Because if you
ask a medical student, hey, doyou know what acromegaly is,
they'll say, I don't think so.
Or I might have, we might haveread a paragraph about it in our
(32:50):
endocrinology class, but wedidn't really discuss it or but
I guarantee if I went in thereand told my story and said, oh,
and I rode my bike 1800 miles.
In spite of it, they're going toremember the girl with
acromegaly who rode her bikereally far. So
(33:11):
human, yeah, to connect that waywith story good for you. Now you
do work. You, you work on this,right? You, you help educate,
and you tell, tell us a littlemore about what you do to make
people aware.
Yeah, so I started this was byaccident, actually, I because I
wasn't finding much muchinformation out there about
(33:34):
pituitary tumors, because theythey cause all kinds of
diseases, not just acromegaly.
You might have heard ofCushing's before and so. And I
was like, Why isn't there moreinformation? So I started
saying, Okay, I maybe I'll starttrying to bring awareness. And
(33:55):
so I started asking people like,Hey, will you post my story on
your website. And then Ithought, Okay, I'll buy myself a
jersey that has like, somethingon it, you know? And and then I
contacted the same specialistthat said I shouldn't do this
bike ride. And he but he foundit fascinating. He found it
(34:18):
really cool and fascinating thatI was doing this, and he put me
in touch with some otherorganizations, and suddenly I'm
contracting with pharmaceuticalcompanies, and they're helping
me spread the word and and Istarted traveling to speak on
stages and share my story and sogood sponsored through the bike
(34:43):
ride and passing out buttons andall kinds of things, just
kind of grew organically. Thoseare the best kinds of things
where you just make a couple ofcontacts before you know it. It
just grows. That's wonderful.
Good for you. It must feel sogood to help spread. That word
and to and to make sure thatpeople aren't where you were,
where you just couldn't findenough info that makes me feel
(35:05):
good that you're doing that.
Thank you. I feel emotional overthat, that when you say that you
know if, if I can, just, if Ican save some lives, like, if I
can save people from my sametrajectory or my same prognosis
just by getting them diagnosedearlier. Oh my gosh, that that's
(35:29):
my goal. That's what I want,like that's what I want more
than anything. Ilove that that's so good. It's
such a nice response to thetroubles you've had. And that's
what I love about storied humanis people learn from your story.
They get inspired from yourstory. They probably, if it
applies to them, right, go gettesting, or go to another
doctor, or they know what tosay. Now, because of you, you
(35:50):
just never know who's listening.
And that's what I love, is likewe don't, we don't always know
everything, and we have to heara lot of different people, and
we learn, I always say you don'thave to go through something,
either to learn from someone youknow, you don't have to, you
don't have to mess up yourselfor go through something. You can
always learn from somebodyelse's experience, if you pay
(36:11):
attention. And there's a lot tolearn here, not just about
pituitary tumors, but aboutmindset and about not giving up,
and about, you know, shiftingand being, you know, shifting
your perspective and beingflexible. And that's always good
advice, right? That's, that'sjust, we always need to hear
that a lot of us get stuck inour, you know, our everyday
(36:33):
routines, right, right? It's sotrue and, and I have to say,
like, I know we probably hearthis a lot from people, but I,
you know, it really changed mefor the better it, and that's,
that's the gift in it for me, isI'm truly a better human being,
and I strive to be better everyday, just a better person on the
(36:55):
planet that and everyone Iinteract With. You know, can I
be just better in relationshipsand, you know, just a better
human and different.
It changed you. You let itchange you. I think that also,
there's that lovely gift ofcompassion that comes from going
through these things. I feellike, I mean, I lost my mother,
(37:16):
you know, a long time ago, butthe grief was so deep, and I've,
I've still, I'm still exploringit, you know, years later,
because I had little kids whenshe died, and so I just kept
going on with my life, but it'smade me much more compassionate,
you know, like the sometimesthese bad things that happen to
us really do leave us with agift, because we're all human.
(37:38):
We're all going to go throughstuff, yeah, and it's lovely
that you found yourself on theother side with some gifts. Yes.
You know what's better thanthat? Yeah?
And so I imagine that changedyour relationship with your own
kids, yeah, mother, yeah.
It was, it was really sad for awhile because they were so
(37:58):
little, and I was like, Oh, theydon't get to be with her, but I
took myself to a therapistbecause I was really not getting
better, and she just taught methe most beautiful lesson about
getting through feelings, andI'll just never, ever forget it.
And one of the things I got outof it was, I don't remember how
I related that. She just said,There's no way to to stuff your
(38:21):
feelings down, or get rid ofyour feeling. You have to walk
through them. She said you couldavoid it for years, but they
don't go away. And I had stuffdown a lot, because that's what,
you know, nice girls do.
I can. AndI remember saying to her, you
know, I'm so sad that I'm afraidif I start crying, I will never
stop, and I think that's reallywhat people feel sometimes in
(38:42):
grief. And the funny thing is,we all lose someone, so we need
to just share that. It's not anegative thing at all. It's a
let's share that and becompassionate and help people
through it. But the most lovelything happened was, after I went
through the therapy, I came homeand my kids were, like, three
and five, and I had had heard atthe same time, I had heard,
(39:04):
don't break the hug with alittle child, let them break the
hug. It was such a simple thing.
And I hugged my daughter thatday, and I just didn't stop. And
I noticed this was so profoundfor me. She held that hug so
much longer than I would have,because I was like, Oh, I gotta
(39:27):
go do the dishes, and I gotta goclean this. And I got, she held
that hug so long because theydon't have those pressing issues
when they're little. And okay,so the you know, the upshot is,
I got all that, you know. Whatdo they call it? That oxytocin?
I got all that oxytocin hormonefrom the hug. But what a
(39:49):
beautiful thing, and how muchmore secure children are when
you let them call, call the hug,you know. So there's like gifts
from all these I really feellike. What you said is so
powerful, and I thank you somuch for sharing it. Now, did we
miss anything? Is there anythingyou'd like to share or add?
I don't think so. Thank you forsharing that, though I and,
(40:11):
yeah, beautiful story. Thankyou. You brought that
out in me. I don't know. You'rejust really reminding me of
things, and in your heart, Ijust, I'm really appreciative of
you. Thank you for coming on nowtell us how we can get in touch
with you. I havea website, Risa, august.com,
(40:32):
so I'd like to say it not justput it in the show notes. Some
people don't read the shownotes, yeah, and they can get on
there and they can learn whereto get your book. There's a nice
page on there about your book,and I'm going to read your book
because I love your story. Isthere anything else that we do
people? Can people get to you inany other way? I noticed there
(40:52):
was a contact tab on yourwebsite.
Yes. August.com, has it all, andthat's Rissa with 1s R, I
S? Would I call you the wrongname? No, no.
But a lot of people spell itwith two s's because the way
it's pronounced. So I was justsaying 1s and with 1s and
(41:15):
August, just like the month.comand that has everything I I want
to convey, you know, I'm therepeople are so layered, and
there's so many things and so onmy website, you can find all the
different fun things I'm doingand into. And you say, you do
(41:37):
an amazing amount of thing. Youmake me want to have sparkly
hair.
You do those beautiful we callthem talking sticks, but you
call them voice and voice andart, or nice and story art,
yeah, voice and story art. Talka little bit about that, because
they looked wonderful. Ohmy gosh, yes, that that also
happened by accident. I wasfinishing up my certification
(41:58):
English and Gestalt coaching,and I, I was trying to, I
couldn't. I was still in thosetattered gray sweat pants, but I
got off the couch. I couldn'tget on my bike yet, but I needed
something, so I startedpainting. And I don't consider
myself an artist, I but I wastrying to think of something to
(42:21):
gift the other people I would begraduating with in a month from
this program. And I thought, ohmy gosh, when they hold i like i
I'm so drawn to native cultures.
And so I I researched all aboutthe Native Americans, talking
stick and learning all about itand and I decided that was what
(42:44):
I was going to gift each person.
And so I began painting thosesticks and really getting into
details and adornments. Andafter I gifted those, they were
like, these are amazing. Youneed to be selling these. And I
said, No, no, no, no, no, no,I'm not an artist. Well, before
I knew it, I started sellingthem all around the world, and
beautiful. Yeah, they werereally, it was really, though,
(43:08):
my healing process. It wasn'tit. I never meant to turn it
into a business or anything. Iit was a healing process for me
to get myself off the couch andeventually get myself back on my
bike,and I started painting. That's
so cool. That's such a niceresponse, though, to not being
(43:30):
able to do much. I mean, I don'tknow if a lot of people would
say, I think I'll paint. That'spretty cool. Yeah. And then how
about the sparkly hair? Is thatthe is that little, um, like,
little threads that you add thatare sparkly.
They are so they're made ofsilk. They're really high
quality product. And I ran intoa gal in Oregon who was they she
(43:51):
was at a large artist event, andshe was a vendor at an artist
event, and she was putting thesesilky, sparkly strands into
people's hair. And I mean, rightaway I was drawn to it. I
started seeing all the women,not just children, but all the
women, some men that werewalking away from this booth
(44:15):
with these sparkles in theirhair, just beaming. And I
remember thinking I was beaming,because they were beaming. And I
loved looking at these sparklesin their hair, and I thought it
looked amazing. And then Iwanted them. And so I ended up
becoming friends with the galwho started this company called
Lucky locks.co and she and Ibecame a mobile partner for her.
(44:41):
And so I started doing it simplyto spread joy. It just lights up
a room. I do a lot of women'sconferences and retreats, lot of
women's groups, and it justlights up the the room. It
just learned like that, youknow. And. Have a friend who,
who has her I'm not sure whereshe goes, but she shows up with
(45:04):
those. She calls them fairyhair, that she gets fairy hair,
and it's, it's hard not to smilewhen you see that. I so I was
very excited when I saw that.
You do that too. So you aremultifaceted, for sure. Thank
you, and I can't thank youenough for coming on. It was
great. I love talking to you.
I'mso grateful. Thank you so much,
Lynne, for having me on yourshow was really
(45:27):
good. Take care. You too. Bye.
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