So, welcome to the AdaptX podcast where we have discussions with individuals who are
building accessible businesses or products advocating for inclusion or excelling in adaptive
sports.
Our intention is never to speak on behalf of those with disabilities, but rather to amplify
your ideas, voice it, and learn strategies to scale our impact and help other businesses
become more inclusive and accessible.
Today I'm joined by Terence Reuben, a physical therapist, athlete, and advocate for inclusion
and endurance sports.
He is one of the original co-founders of my team Triumph, an organization founded in
2008 in his hometown of Grand Rapids, Michigan.
The organization has the mission of enhancing the health and well-being of individuals with
disabilities by fostering lasting, authentic relationships through the teamwork environment
of endurance athletics.
Obviously a topic that I'm passionate about as well through my involvement with Team Hoice.
Terence, thank you for joining us today.
Thank you, it's my pleasure to be on your podcast.
Before we talk about your work as a physical therapist and non-profit organization, my team
Triumph, I'd like to talk a little bit about your upbringing.
You grew up in Apartheid, South Africa, the African word for apartness, where there was
a series of laws that segregated the population by race.
I believe there are four classifications, white, Indian, colored, and black.
And while it was most prevalent in the 1940s and the decades following, it stems back to
the early 20th century.
How did all of this affect your childhood or maybe the generation prior to your parents?
Yeah, it was a very interesting upbringing and especially the one correction would be
that the category that I was in was an Asian category, not an Indian category.
And so anyone from Asia was grouped into the same group as I was.
In terms of the official law going into effect, that was done in 1948.
So it was very recent if you look at the historical timeline, but at the same time the idea of
segregation sort of got built into the culture, as you say, even before then.
And so for my parents growing up, they were so used to being segregated that they just
lived within the confines of that, whether it meant going to a different beach or taking
a different bus or just living in a different neighborhood.
That was the status quo.
That's what they accepted.
During my generation, especially as we got into the early 80s, is when the revolution
really started as to try to figure out how do we just change this idea of oppression.
And we also had more support across the bandwidth of all four racial groups that supported this
idea of integration instead of segregation.
And so my journey has been very interesting because I started being born in the late 60s.
In the early 70s, you kind of had to live with what the parents lived with and took
that as the status quo.
But then as you got a little wiser and you got a little older, you realized that this
was wrong on so many levels.
And the human spirit should not be confined to a description of just your skin color.
And in the context of this conversation, it shouldn't be defined by the level of ability
or disability.
And so as a means of leveling the playing field at a young age, I took it upon myself
to figure out how do we shift the needle, how do we move the bar, and not to just accept
the status quo but to challenge it.
And that kind of became the foundational part of who I am today at the age of 56.
So continuing to challenge the status quo and not accepting things the way they are.
Yeah, I was going to ask if the politics and just kind of your childhood influenced your
approach to inclusion today.
I would imagine there's a lot of parallels between the two.
Yeah, it has.
And I think on one end, there are people that lived through what I did and were very bitter
from that experience and then almost created their own sort of reverse apartheid as they
got more educated and got into owning their own businesses and companies.
I, on the other hand, decided to take a different approach of just living the brightest light
that I could live.
I grew up in a family of faith with my dad being a pastor, my mom being a missionary,
and our whole idea at home was always to leave the community in a better place than we found
it.
So whatever that meant, whether it was in work and how we lived and how we played sport,
whatever we did, the glory was beyond us.
So from that faith background, it's really helped to define the things that I currently
do in my life.
Was the schooling process different by those four different classifications?
Were you aware through elementary school and middle school that you didn't have the same
opportunities as others?
Oh, absolutely.
Yeah.
I mean, even in segregation, as they tiered the racial divide by Caucasian or white being
the top level, the next level were the Asians, which is the category in which I fell into.
The third level down were the Colors.
And Colors were not referencing African folk, but was referencing people that were the offspring
of a Caucasian and a local African marriage.
So they actually made that a whole category of colored people, and then the people at
the bottom of the tier, so to speak, were the local African people.
And so everything got tiered around that, whether it was the best locations where you
could live, to the kind of school system that you had, to the level of education that you
had, and the sad part about having those four categories, the local African folk being at
the bottom of that tier were always at a disadvantage because they had the lowest level of education.
So when it came to going to college, everyone had to compete at the same level to get in.
So as you can imagine, just based on that, the Caucasians were the highest number of
folks that got into advanced education or college degrees.
The Asians were second to that by a huge margin, and then the Colors and the local African.
And so even in my fight to get up there, we as young kids, especially in the Indian community,
the Indian community in general was sort of very entrepreneurial, and they pushed the
kids to get into education or economics or healthcare or law or finance, and those were
the sort of, we called them the big five.
And so I ended up getting into healthcare, and my sister got into education, my brother
got into finance, but you were driven by some unknown force throughout your childhood to
do this as the level of accomplishment.
So to get into college, we had to work really hard to get there, and I'm used to the struggle
and not using that as an excuse, but using that as a step up to the next level.
Yeah, so you started university in 86?
Yes.
Yeah.
I started high school in 85, started my first year in 86, did my first degree majoring in
microbiology and physiology, which then set a foundation for me to go into the physical
therapy program three years later, which is not necessary in South Africa.
You can go straight into the PT program there.
The education system is very different than it is here in the US, but I'm thankful to
have had that foundational background because it then gave me a little bit more of a scientific
research-based approach to everything that I do as a physical therapist.
Yeah, correct me if I'm wrong, but during those six years, so Mandela was released from
prison in 1990, and then a lot of the apartheid laws were abolished in 1991.
Did that change your university experience or did the structure of the schools change
at all during that time?
No, not at all.
The structure only officially changed in 1994 during the first election.
So even though there was a withering away of some of these rules and laws, the community
hadn't changed.
I started my physical therapy program in 1989, I believe.
And that's when I met my wife.
My wife is Caucasian and Portuguese, so I always say we started a relationship with
three strikes against me.
I wasn't white, I wasn't Portuguese, and I didn't fit into that culture that they had
at the time.
Did she grow up in South Africa as well?
Yeah, she was born and raised in South Africa.
Oh yeah, the third one was I wasn't Catholic.
So yeah, it was just interesting to think of that as being a barrier to a relationship,
right?
But in the bigger sense of things, it also helped mold me to who I am, to be tolerant
of things that are of that nature, and to raise my kids to understand and know better.
Yeah, absolutely.
What were your clinical rotations like during PT school?
PT school is very interesting in South Africa, very different than the US, very different.
I always tried to preference that with what we did 30 years ago, because I've been practicing
now for 30 years.
So 30, 34 years ago, the programs they were very, very intensely physical therapy.
You never did any other subject but physical therapy for four years, and in your last two
years, you did a clinical rotation every day.
So you did a half a day of clinical, and then a half a day of actual education in the lecture
hall.
And so your clinical rotation included working at our acute care hospital, where I went to
school, was a 2700-bed hospital.
Your rehab hospital was an 1800-bed hospital.
So the clinical experience that we had when we was in the acute care system, I mean, everything
from advanced ICU all the way down to post-surgical, orthopedic, neurological cases, things like
that.
And then people that made it through the acute care and were stable but couldn't get home
safely, we sent to the rehab hospital.
So we had extensive exposure to all the neurological and orthopedic cases for weeks and months at
a time.
So everything from burns cases all the way down to what they call the brown C-card, where
you get a stab wound and you have motor neuron issues on one side and sensory neuron issues
on the other side.
And just like some of the most rare cases, we would see those cases as groups because
they were that many of them.
Okay.
All right.
What brought you to the States then to practice in the States?
I love the idea of travel.
And when I was 20 years old, I made my first, I had been working part-time, saved some money,
and then went to Europe for six weeks.
I have family in the Netherlands and aunt and uncle that lived there.
And so my aunt was one of the earlier people that I knew that was in a mixed marriage relationship.
And when she, when my uncle and her started dating in South Africa, which was again against
the law in the 60s, they had to actually flee the country at a certain point and they moved
to the Netherlands, which is where my uncle was from.
So I got to do my first vacation there and it really opened up my mind to everything
that was not South Africa, not in the silos.
And so then I wanted to travel the rest of the world.
And of course you go to Europe, the next thing is I want to go to the USA.
And at that time in the early 90s, there was a huge shortage of physical therapists in
the US.
I believe the numbers were like 50 to 80,000 therapists short nationally.
So they started recruiting from a lot of English speaking countries because in the interim
of trying to do the recruitment, they were also trying to increase the number of people
that were admitted to the PT program.
So I was part of that group that was brought in from South Africa, Australia, New Zealand,
England, a lot of English speaking countries.
And some of the therapists are still around today.
You'll find that that's where they're backgrounds from.
What was the biggest adjustment initially when you moved to the States?
That's an interesting question because I grew up with the Brady bunch in 80s enough on
our TV stations.
And so you come here expecting this almost sort of perfect world and then you realize
that it's not.
So it was almost a little bit of a reality check that all of America, all of the USA wasn't
this perfect world.
And there were people that lived very out of the world amazing lives, but there were
also people that struggled.
And this population was a lot more diverse than I thought it would be.
But the other interesting thing I also found that from a racial profiling standpoint, it
still existed here, but just at a much more subtle level.
And that took me a little bit to get used to.
I always felt like in South Africa, I knew what to expect.
I knew how people felt.
And so I responded accordingly, whereas when I came to the US, people would say nice things
but then they would treat you.
They would still treat you differently.
So it took me a while to get used to that and not let it bother me.
Do you feel like that's changed since you moved to the States or is it still pretty
prominent?
Oh, I think it is still pretty prominent.
But again, people can have certain cultural backgrounds and live with certain things that
they, out of ignorance, rather than a concerted decision to live this way.
And I think quite often when you meet with them and they get to meet with you, with me
as a person of color, it's interesting how that changes or that pivots.
So for example, where I live here in Grand Rapids in West Michigan, there's a lot of
a Dutch settling.
And so oftentimes, especially in the early days, people would walk into my practice and
they would see me and you could see the look in their face like, whoa, I'm in the wrong
place, I don't know if I want to be here.
And I will say something like, hello, can I help you?
And I could hear from the accent that they still have a little bit of the, you know,
a Dutch accent.
I would say, Sprikens in Netherlands.
And they look at me like, wait a minute, did you just speak Dutch?
Like why do you know that?
But I grew up in South Africa where Afrikaans, which is a South African language, is 80%
Dutch.
And so using the tools and skills I have, I was able to communicate with someone that
was different.
And once you found that point of connection, it changed everything.
And then I became like their favorite therapist and they didn't want to see anyone else.
So my point again is when people get to, you know you and you get to know them, you can
always find a place of commonality, a place that you can agree on things.
And the other part I found that is, you know, in South Africa, you could sit down with a
group of friends and have completely opposing views on anything from politics to religion,
but you could still be friends, whereas here people were like, if you're not on the same
page as me, you're not part of the circle.
And that took me a while to get used to that because, you know, I have strong views on
things, but I also respect the views of others.
And I try to spread that respect amongst my friends to say, okay, it's okay to have a
different view, but let's respect each other and walk away knowing that we just educate
ourselves a little bit more.
Yeah, the previous points you were making have a lot of parallels to working with people
with disabilities, I feel like building rapport, genuine interest in their motivations and their
interests and that's kind of how you develop those relationships and you understand how
they communicate and how they experience the world.
So I think there's a lot of parallels between acclimating to different cultures and then
acclimating to different abilities as well.
You were the director of outpatient services in the sports rehab department, correct, at
Mary Free Bed.
Were you recruited by them directly or did you find that position when you got here?
Well, it was when I first came to the US, I actually came to Michigan because a company
that recruited me was from a Grand Haven, Michigan.
And so they gave me an option to work wherever I wanted in the state because there were so
many openings I could pick and choose and based on me being happy and settled, there
were a few more colleagues from South Africa that would just follow me based on my words.
I felt like I was the Joshua of the group, go and see if the land is fruitful and plentiful.
And so I get my first job in a small town called Alma, Michigan, and then my wife who
was my girlfriend at the time came and joined me in that place and we grew the practice
to quite a large presence.
We were here just for one year because that was the nature of our H1B visa at the time,
but after about a few months in, they recognized the talents and skills that we could bring
to the table.
So they offered to process our green cards for us and if we would stay on for one more
year.
So it's like, oh yeah, great, we want to see this country, let's do that.
But we ended up staying for three and a half years with that company.
And then my wife and I traveled for two years and we've lived in Indiana and in New York
and in North Carolina doing contract work.
And one of the contracts brought us back to Grand Rapids.
We wanted to reconnect with some friends.
So let's go back to Michigan, take this job.
And the job we had was at the local hospital called MetroHealth or Metropolitan Hospital
back in the day.
But all the clinicians were contracted from another rehab hospital called Mary Freebed.
And so working here for a couple of weeks, they wanted to offer us full-time positions,
which we negotiated and accepted after a few months.
And that's how we ended up settling here in West Michigan.
They were, for me specifically, they were looking for someone to build and grow a sports
program.
And I have a lot of entrepreneurial kind of things going on in my head and then they
could recognize that right away.
And for my wife, her specialty was in neuro.
So stroke and Parkinson's and so she helped build that program.
So we both came on as big assets to the company.
And over the years, as I've developed different programs, I got to the point where they then
moved me into a director of outpatient services or director of sports rehab kind of positions.
I found an interesting reading about the history of Mary Freebed as a whole, just kind of how
it started in the late 19th century and how it kind of came to be.
Are there multiple locations around the states or?
No, not around the states, but in Michigan, Mary Freebed has created specific partnerships
with different hospital groups.
They have quite a good presence and their sweet spot really is the inpatient rehabilitation.
So massive neurological strokes and things that way you would need more rehab than just
in an outpatient setting and then motor vehicle accidents.
They really are the top in the country, if not in the world for doing that kind of work.
They also do a lot of work in pediatrics.
So a lot of the earlier younger diagnosis that knows Z's that often get either missed
or not well treated, Freebed has an amazing way of managing that patient load.
So people come in from at least different parts of the country to come and have their
rehab here for that.
They've also developed a very good orthotics and prosthetics program.
So they were like the leaders in creating some of the devices that you see all over
right now and Freebed staff are the ones that brought that into this rehab picture.
The outpatient programs have been okay and that's what I was trying to help build, develop
and grow.
And so that's the world that I was involved in the most, the outpatient, not inpatient
or pediatric.
So you were there for 23, 24 years?
Yeah, 25 years.
It would have been 25 years since April that I resigned earlier in the year and my last
day was February 14 of 2023.
And now you're the owner of PT Sports Pro.
What kind of influence the change or the shift from hospital based versus is this a private
practice clinic now?
Yeah, correct.
You know, my approach to care and to athletes and to all my patients really was always to
give them the highest level of care that they needed, which meant that a lot of one-on-one
time with my patient and then a lot of daily permits from treatment to treatment.
So I just don't do the same thing every time they come in.
My approach has always been hands-on with my patients.
So if they're there for 45 minutes to an hour, the first 30 minutes of it is like hands-on
and making sure I can figure out what's going on with their muscle, their soft tissue, their
joints.
And then once I get that released, then I will move on to some of the exercise and activity
that I would have them do in the gym.
And especially post-COVID, it was starting to shift.
There was a lot of pressure to do more like group kind of therapies and sessions, which
I didn't philosophically agree with.
But instead of being the person that sort of bucked the system, I recognized at that
point that maybe it made more sense for me to separate out and do my own thing.
So that led to, I think the trigger as well was a couple of really key staff will let
go post-COVID that I couldn't see how that should happen in a system the way it did.
So that was I started making my move to figure out a different business plan or different
business option.
So I set up PT SportsPro and resigned, like I said, on Feb 14.
I had a whole day of retirement before kicking it in on Feb 16 with PT SportsPro as my official
PLLC.
I'm opening up a big private, what I call a sports and wellness practice.
My vision is to build it for the elite athletes.
So an absolutely high level concierge case, a practice that has all the fittings and visuals
of a high level practice, but open it to the masses.
So I want anyone that has any kind of injury to come and see us and get the kind of care
that I think we are capable of providing as clinicians and not consider the bottom line
or the dollar as the lead in a treatment, but consider the patient in front of you as
what do they need and how can we deliver that best quality all the time consistent.
My goal is that the practices around me start seeing that success can be had with one-on-one
good quality care and then they start to copy me because if they do, not only does our profession
get elevated, but our community benefits.
So I always say I could have retired after 30 years, but I decided to do this as my gift
to our community.
And especially with my involvement with my team, Triumph, I wanted to create a space where
you don't just come in and have rehab, but if you needed a space to kind of work out
and under supervision of a personal trainer or an exercise physiologist, we should be
able to provide all levels of care.
So we can take care of the elite athlete that wants to have a DEXA scan and lactate threshold
tests and any kind of performance testing to the person with a total knee replacement
that just wants to come in and have therapy.
My tagline is, you know, treating you like a pro.
We treat everyone like pros when they walk through the door.
Yeah, I love that.
Yeah, we added a physical therapy clinic adjacent to our gym about nine months ago and when
I was seeking out what business to affiliate with, that was one of the big things that
I wanted, a PT that was hands on and that worked one on one with clients and didn't
just do the same rudimentary treatment for every person.
Are you a cash based practice?
So we'll be doing, well, we're still building out the practice.
So we'll be open hopefully December, January, but yes, the short answer is yes, we'll be
cash based and insurance.
And we will be providing all levels of service.
If someone comes into my practice and say, man, I wish you had this service or this test,
I will be figuring out how to make sure we add it to our slate of things that we do.
Yeah, the benefit or at least one of the benefits of cash based is that it doesn't have to be
influenced by a script, right?
Right.
As opposed to a generic, you got eight PT sessions and then you're done with a cash based practice.
You have a little more flexibility in how you treat a patient, right?
Yeah, and the state of Michigan does have a direct access policy, which means that you
do not need a referral for several of the insurance companies where they can have 10
visits up to 30 days within 30 day period without needing a referral.
But I can see the pros and cons of that as well.
And I know for me, my goal is to provide what the patients need versus just going, oh, we
can do 10 visits, so let's follow our practice with people that have 10 visits and done.
So my history has always been very good with my patients in terms of number of visits used
and then the expected results.
Are you hoping to have clients with disabilities?
Oh, absolutely.
Yeah.
Absolutely.
As a matter of fact, the testing lab, the performance testing lab that I'm building,
I want to be able to put people with different levels of disability through the tests that
we normally do.
So why is a DEXA scan, for example, important for someone who is a paraplegic versus someone
who has cerebral palsy?
Why do we need to do a VO2 max elective threshold test on these individuals?
What are the standards right now, which there aren't any for someone with a disability?
Well, then how can we be part of the solution of creating those standards?
Because we have more and more, especially with the wheelchair adaptive athletes, for
example, that are racing at a very high level, right?
And they don't know how they can tweak their performance if they don't have any baseline
data.
And integrated with performance comes personal training, but also management of an injury.
So that's why with PT Sports Pro, the PT stands for physical therapy, but also for personal
training and performance testing.
And we integrate that all into one.
And the way I look at it is that the physical therapy is a small part of this bigger sports
and wellness view that we're going to have.
So we can all perform at our best.
Yeah, we'll have to loop you into our research then, because the person who introduced us,
Brian, him and I are working on a project now that revolves around high intensity strength
training for people with Down syndrome.
We were looking at some of the different constructs that we want to measure, and whether it's
body composition, and we have VO2 max testing.
We have a metabolic cart here at my gym.
So maybe we can work together to kind of elevate the standards for performance training for
people with disabilities.
That's kind of why I started my gym seven years ago.
And it's always great to affiliate with people that are doing similar things.
Before we talk about my team triumph, just when I was prepping for this, and this was
one of the more excited I've been for the podcast discussions, and there were just like
a lot of similarities between the work that we do and also kind of like our familial background
and stuff.
You mentioned meeting your wife during university.
And then more recently, I read a few articles and watched a couple of videos on her diagnosis
with adrenal cortical carcinoma when I was 17.
One of my best friends was diagnosed with the same form of cancer, which is very rare.
I think they say one in a million or so.
So maybe the chances of two people with a close relative or close friends with the diagnosis
is even more unlikely.
But Leah went to university in Michigan, met with Dr. Hammer, who was in some of the videos
that I watched with your wife as well.
What was that like, and so she was diagnosed in, correct myth I'm wrong, but 2021 or 2020?
2020.
2020 during the start of COVID.
Maybe can you kind of walk me through what that process was like, and maybe if that's
had any influence on your last few years of work and kind of what you want to accomplish?
Yeah, yeah, absolutely.
My wife works in inpatient rehab at the local hospital.
So she's often in close contact with patients.
COVID hits and now they had to start wearing masks and shields and all sorts of gear.
But a lot of the patients that would come in, they were patients that had the symptoms.
And we knew right away they were in a COVID ward and COVID floor and extra precautions
were taken.
But your general precautions weren't as closely followed, you know, with the regular population
because there was a lot of unknowns at the time.
And so you could work with a patient that actually was COVID positive, but just didn't
test positive yet.
And so in one of her episodes, I remember her talking about a patient that was having
some coughing and what have you, but hadn't been diagnosed or confirmed as a COVID positive
test.
And she went to lift up the patient, the patient went into a coughing spurt and Tina felt like,
well, you know, if anything, I could put my finger on that one case.
But at that time wearing the masks was also quite an oppressive kind of thing.
And so she'd come home and she'd be like, man, you know, my forehead hurts and this
hurts and that hurts, but it's probably the mask and wearing it all the time.
But she started to notice that she's like, my pulse feels really strong and it feels
like my heart's racing.
I don't know what's going on.
I'm like, that's probably the anxiety from wearing the mask.
And we try to calm her fears on that.
But when it didn't settle down, we had to go into the local doctor, which was in early
May.
And I remember they checked her blood pressure.
It was 200 over 100, which is unheard of, you know, for especially for her, she runs
a regular always has been like 120 over 80.
And so they gave her some blood pressure, low ring medication and they ran a few blood
tests and then the results came back the next day that her potassium level was really low.
So they put on potassium pills and they said this will also help restore some of the balance
and a symptoms should decrease by that Monday Tuesday.
It still didn't decrease.
So they sent it to the hospital and said, you know, go to the ER, get an IV of potassium.
Let's see if that gets your levels up.
So they tested her levels before the potassium infusion ran the infusion.
And after they, when they retested, instead of the numbers going up, it actually dropped
even further when she was at that critical level.
So they decided to admit her that Wednesday night just to kind of figure out what the
hex going on.
The next morning they, they are doing the rounds.
The doctor said, Hey, you're one of us.
You work in this hospital because she, she actually ended up being admitted to where
she actually worked.
Let's, let's run through these tests and make sure you're taking care of well.
But have you ever had any COVID symptoms?
And she's like, no, we're going to test you anyways.
Well, they test her and she tests positive.
So they isolated her right away.
And of course, during this whole time, I couldn't be with her because of all the COVID precautions.
So we're like face timing and, you know, she didn't, she even drove herself to the ER
because there's no point in me driving her there.
I wouldn't be allowed inside.
And she just like at the last minute packed an extra, you know, shirt and some underwear
and say, just in case I'll just take this with me.
And I'm glad she did cause she ended up staying in the hospital for a couple of weeks.
And during that time is when they also found out that her levels of, I think it was, kind
of remember the adrenocortical levels was, was super, you know, off the charts, off,
wrong and super high.
And so when they, when they saw that, I think it was supposed to be like around 5000 units
and she was like at 60,000 units or something.
That's when they said, okay, you know, we got to do a CT scan and the CT scan showed a huge
tumor.
So that's the size of a fist over a left adrenal gland.
And we get this news on a Monday evening.
I think it was like around the 18th or something of me where the doctor had gone home and then
when he saw the results, he came back in to give her the news in person because he was,
he was even shocked.
He had not even seen a case like this in his tenure.
And so we got on and I'm on the phone trying to listen to all of this.
And that's kind of was the start of our journey with this, the C word, right?
And he said, it's very grave, you know, there's a lot of risk even in doing a surgery and
we went through all of that.
And again, you know, we prayed a lot about where we were in our journey.
And then, you know, fast forward to within by the end of that week, this was on a Monday.
So they kept it in the hospital, tried to figure out what they could do in terms of
surgery.
They had a medical surgeon, but ended up getting connected to U of M and Dr. Hammer then became
in charge of a case.
Met with a really good surgeon, Dr. Barth Miller, who, you know, a week later got on
a virtual call with us and gave us the lowdown of what needed to happen.
The tumor was touching her diaphragm, her stomach, her pancreas, her spleen, aorta and
then sat on top of her left kidney.
So Dr. Miller said, okay, we'll take out the tumor, we'll resect all those areas, we'll
remove the kidney, resect and, you know, connect whatever needed to be done.
And we're like, oh, it's a pretty extensive surgery, but Dr. Miller was confident she could
handle it all.
It was, we had this, this is the Thursday after the Memorial Day is when we're having
this virtual meeting and surgery was about three or four weeks out.
And we were like, what's going to happen to this tumor, is it going to grow, what's
going to happen?
And in that time, as we kind of dealt with this decision, Dr. Miller looks at her schedule
and she goes, oh, wait a minute, I could see you on Monday, like three days later.
And so right there, that was like the first step in all of these series of miracles.
She goes in and I had to take her to U of M, drop her off and then come back home because
I couldn't even go in with her.
And if something did happen to her on the table, I couldn't go in and it was, it was
just so weird how we had to pivot what our normal minds would think about how we spend
time with each other and what we do with segues to the question that you ask.
And so that night I get home and by the time I got home, I actually got a lost coming back
home.
Even though I have GPS, I never get lost, but my brain was that distracted was going
on.
So by the time I did get home, I literally sat on the couch and I get a call from Dr.
Miller saying, Hey, Terrence, this is really weird.
This is Barb.
Wanted you to know that we went in.
So they had to basically cut across the entire abdomen, you know, remove the organs, the
gut basically so they can get to the adrenal gland.
And she said, I got in there, did all the things that we needed to do and was able to
just lift this tumor out of there without touching, it wasn't attached to any of the
other structures, even though it was touching all of them.
So they got it just in time and they were even able to save the kidney.
And so with that, you know, we realized that there is a purpose to who we are and how we
exist.
And when Tina was diagnosed and we were just like distraught with fear and anxiety, because
we have no family.
It's just the two of us and our kids, all her family live in Portugal, my family's in
South Africa.
No one could travel at the time.
No one could be with us in terms of the support system, but our friends were our family here
and they supported us well.
And that night when we got the diagnosis and she finally, you know, after emotionally
just trying to deal with it, she's like, I'm going to hang up the phone right now and let
me just settle into all of this and I'll call you right back.
And in that time, a nurse even went into Tina's room and said, Hey Tina, I know that your
family can't be here and I shouldn't even be here because she's in a full hazmat suit
at this point.
The nurse goes, but if you want, I can stay here and hold your hand as long as you want.
So she did that and console Tina and when the nurse left Tina had this, the scripture
that came to her mind, Jeremiah 29 11, I the Lord know the plans I have for you.
And, and so Tina writes it on a whiteboard in her room and then calls me and says, Hey,
I don't know why the scripture came into my head, but here it is.
And when I read this, I just feel at such intense calm peace.
And and with that, you know, we talked about it a little bit and then she went to bed and
she actually slept well that night.
The next morning that same nurse comes into the room and sees the scripture on the wall
and goes, Hey, you know, I, I don't, are you a Christian?
And Tina goes, Yeah, yeah, I am.
And she goes, You know what?
She takes a dry erase to the board and wherever it says, I know the plans I have for you.
She took out the word you and she wrote in Tina's name.
And that's when the story became super personal in terms of how we connect our faith to our
lives.
Right.
And then the tumor, when the doctor said, I went in and I was able to remove that tumor.
Like I, and she used the word like there's like some, like a miracle that was able to
remove this tumor without having to resect anything else.
There was like, there was no other way to explain this.
And that's how you know your life is beyond just who you are and how you exist.
When we got the diagnosis, we decided as a family that we would spend our time living,
not dying because as you know, the, the, uh, the mortality rate for this cancer is very
high as well.
The survival rate after five years is 10 to 25%.
And I said to Tina, you know what?
We don't know which direction this is going to go, but someone has to be in that 10 to
25%.
Why not us?
And at the end of the day, does it matter whether we live or die as long as we live our, our
lives to the best, you know, version of ourselves and bear testimony to everything God has done
for us.
And that's how we've lived.
And she, she's not on social media, but she asked me to share her story.
And by doing so, we've been able to help so many people that I found this, this toxic
culture on, on, especially on social media and wanted to get away from it all.
And then saw a story like this and then caught inspired to like, you know what, why don't
we live each day that like, like it was our last day?
Why don't we celebrate each other in our relationships that we should every day?
Instead, when something goes wrong, then we like, Oh my gosh, but I really love you.
I really value you.
And then you tend to connect a little bit more in those times of desperation, but why
can't that be every day?
And so as Tina says, cancer was not a gift, but it has given us gifts, gifts to love more,
to trust more, to serve more, to just be the best versions of ourselves that we can be
not just, you know, during the, the Christmas seasons or during Thanksgiving, but every day.
So that's, that's what we try to do every day.
Yeah.
And I appreciate you sharing that, even if it's not like directly related to inclusion
or accessibility, I think it's, I can think of a few conversations that I've had with
some individuals who've had spinal cord injuries.
And it's interesting to listen to some of them move towards faith and then others move
away from faith.
And it's even in like the medical humanity, some of the stuff that I've read about that
domain, it's like the intersection of literature and philosophy and religion in how people
recover from medical conditions and the importance of it in people's rehab process.
So it's a very interesting topic.
And I appreciate you sharing the story as a whole because it was, it was just a connection
that I felt strongly about Leah's treatment influenced my life a lot.
So.
Yeah.
And it actually has impacted how we see someone with a disability, right?
Because then we realize that, that every opportunity to be in front of someone that is different
in whatever way is an opportunity that doesn't just happen.
So you make the best of it.
So for example, when I talk to any of our, so in my team, we call the person with the
disability the captain.
And I talk to any captain, whether they're verbal or not, I always look them in the eye
and I speak to the captain.
If the parents have to translate and whatever you, that's great.
But my focus is on the person in front of me versus talking to the parent and they speak
on behalf of the captain.
So I think as we approach, you know, people with different disabilities, the goal is to
sometimes even just, just sharing, hey, how are you doing today?
Are you ready to race?
Changes everything because we are talking to them.
We're not talking about them.
Yeah.
That's an etiquette and a communication thing that we talk to our coaches about.
Like, there are some tendencies for people to either talk to someone with a disability,
like their elementary, like kind of baby talk or talk to them as if they're lesser.
Or like you said, when they're working with a caregiver to talk directly to the caregiver
and ignore the athlete.
So those are, those are kind of like etiquette and communication things that I think are
essential to just demonstrating respect for people of all abilities.
But that's a good segue into my team triumph.
So you started it in 2008.
Was there a specific individual or experience that kind of influenced you to get involved?
No, actually, it wasn't an individual, but it wasn't experienced because in 2007 I was
turning 40 and decided to do my first Ironman race.
And so I signed up for the Wisconsin Ironman, which as you know, you know, you got to sign
up a whole year in advance.
I went through this whole journey of training and sadly being away from home a lot more than
my wife wanted me to be away from home training.
But I got to this event in September of 2007.
And I was ready to take this on and prove to the world, prove to myself that at 40 I
could still, you know, do this as an athlete.
But then I started, I met people that were there for other reasons.
They were trying to raise funds or awareness for different organizations or different things
in the communities.
And I felt a little guilty initially, but I thought, no, I'm here.
This is my mission right now to do this event.
But when I got done and I was able to accomplish, you know, finishing this Ironman, I did come
back home and started talking to a friend about it.
And he was in charge or he owned our local triathlon club of which I was a member.
And I said to Wayne, I'm like, Wayne, you know, so I've been thinking.
And then I go down this road about like, how do we use our skills and talents as triathletes
or as athletes to help someone, you know?
And at that point, we weren't looking necessarily at someone with a disability, but just in
general, like, you know, can we go to a nursing home and take people for rides?
Or how do we do this as our team?
And we probably had about 50 to 75 members on our team, maybe more.
But so Wayne goes, you know what, I had this other gentleman talk to me about, you know,
doing something like this, we should just get together and put our ideas on paper and
figure out how we make it happen.
So that was the first introduction to this idea.
And at that time, we didn't even have a name for it.
And in our meeting, we kind of, you know, the things that came up was they, you know,
you've said you've done some stuff with team Hoyt.
And I had the privilege, the pleasure of meeting Dick Hoyt a few years ago when I was in Boston.
But you know, I, at that time, I did not know about the Hoyts.
I mean, remember, I'm like the foreign transplant here.
So I didn't see that.
But I knew that there were a few one-on-one family members, individuals that were racing.
But the question that we had was, how does it work if you, the person with a disability,
has no one around you that can race with you?
No one in your family that's an athlete.
How do you get the opportunity to race?
So we came up with this idea of my team triumph, where if I could find, if we were going to
be doing a 5K, if I could find three people that could finish a 5K in a reasonable time,
I could put them together, match them with someone with a disability, and they could
push that person through that 5K.
And if one got tired, the other one will take over.
The idea was as a team, they would complete the event.
And the reason why we needed the team is because these athletes, these individuals don't get
a chance to otherwise train with the person in the chair, with the person with a disability.
So they just literally are going to meet on race morning.
So having the ability to finish a 5K within a reasonable time and then push a chair through
takes some meshing of skills.
And so it became this team effort.
And we really wanted to make the race all about the person in the chair, the person with
the disability.
So we called them the captain.
The athletes, we wanted them in the background, kind of taking care of business.
We called them the angels because they did the work.
The recognition wasn't about the athletes though.
So most of the time, 98% of the time, the captain wears the race bib, the timing chip,
their names actually show up in the results.
The angels, nothing just a red shirt, they say, my team triumph angel in it, just so
that people on the course recognize who they are and they're not just banditing a race.
And so that has what, that's what defined my team triumph.
And we did our first race was a triathlon called Tridel Sol and we did that in 2008.
So the spring of 08, which is in March is when we got all the paperwork put together,
the legal work done, set up as a 5013C.
And then July of that year is when we did our first race.
And that first year, we just did like, I think three or four races.
We're just, I think the first race was just two captains and I was one of the original
angels as well.
And my job on the, on the board when we started was to take care of equipment and make sure
that we got the right equipment to race in and each of us had these different roles.
And by the end of that year after four races, you know, trying to convince race directors
that it was okay for us to be in a race because we have rules of engagements and protocols
that'll keep not just our group safe, but all the participants around us safe as well.
That was helpful to then help us move forward.
At which point we got a reach out by others that had heard of our story and wanted to
know how could they do this in their state.
And so in 09, we formed a chapter structure in West Michigan, became so if the original
racing group in West Michigan in Grand Rapids became the first chapter and we created a
national body that then helps to take the operations of that chapter and duplicate it
across the country.
So fast forward to 2023, we now have 14 chapters across the country that do this.
Our goal is to create depth in relationships and having authentic relationships versus
breadth and just trying to do a ton of events that, that doesn't have the meaning that it
needs to have for our captains.
Every experience with them as we talked about our journey with cancer, every experience
with these captains could be, has to be the best experience.
So we go all out and try to provide that for them.
And then sadly for some of our captains that have been more fragile, their first experience
ended up being one of the last experiences that they had with us because within, before
they could come and race with us again, they passed away in between in that interim.
And so we were glad that we were able to provide them with this amazing experience.
And we've had those parents that have reached out to us afterwards saying, thank you so
much for doing that.
They talked about the experience that entire time they wore the medal for a whole year
a week after the race.
So, so we want to make sure that it's not just a handout, you know, it's an earned medal,
it's an accomplishment.
Even just to sit in the chair for the time that they have to takes, it takes a lot.
It takes a lot.
And it is, you know, it has a toll on the body as well.
And then we've had other captains that have done, you know, 30, 60, 100 races with us
and accumulated medals and have accumulated, you know, race numbers.
And for them, this has now become their point of bragging up to this point.
I remember one of our first captains sat in his living room just looking out the window
at the kids playing shooting hoops and felt that he couldn't be part of that.
And after he did his first race with us, he was able to get out there in his power chair
with his medal on and talk about what he just got to do on the weekend.
So it is life changing.
And something that starts as a small effort to just move the needle just a little bit
has become this larger movement where now, especially in West Michigan, getting into
a race with someone with a disability is like, yes, how do we make that happen?
Whereas when we first started, it's like, nope, you're not allowed to do this race,
you know?
And so we figured out how to diplomatically work through the process of getting the yeses
from our race directors to the point now that they invite us, they want us to be there
and we're happy to make that happen.
Yeah.
Yeah, it's motivating.
You hear those captains reflect on their race experience and kind of how it transpires into
other aspects of their life as well.
You mentioned when you first started triathlon, it's like a very individual, it's a very
individual-centric sport.
And what I love personally about racing with Jacob is that it kind of gives it meaning
beyond myself.
When I'm training by myself, I'm envisioning the races when Jacob's kind of like he dances
in our chair, like we have music that plays, like he teams of like feet off the crowd and
stuff and so I'm envisioning those moments when workouts are getting hard, when running
is getting hard and it's gotten me through a lot over the last nine years that Jacob
and I have been running together.
We've done about 100 races together and we'll be running Boston this April for the first
time together.
But what are the steps and challenges of kind of building a membership organization?
Are you concerned about the people that represent those chapters?
Is there like a vetting process, an interview process?
Yeah, that's an interesting question because over the years, I focused initially on West
Michigan operationally trying to get this organization nice and tight so it can be
well-duplicated but in those years, the growth was almost too rapid to where the new chapters
that started in some of these places didn't understand what they were getting themselves
into and so some of those chapters, so we had more than 14 chapters and some of those
actually closed or folded just because they started off with the right reasons but they
didn't have a good sustainability plan.
So about post-COVID or during COVID, we had to let go of our executive team because we
just couldn't have that level of infrastructure and be able to afford to pay them and when
we let that go, they appointed me as president of the National Board and I took that opportunity
to sort of reset some of the things to get us back to where, to the original values of
what we started with, deep authentic relationships.
So I didn't care how many chapters we had but if we had a chapter, how do we make it
the best chapter for that area, for that group, for the people that were on the ground doing
the work and so that really has been the hardest or the biggest challenge, right?
Because so when I got into it, I did not have a family member or anyone that I knew with
a physical disability so for me, it was just this passion to move the needle, change the
status quo but for other people that started off, they were family members, often individual
with a disability and so as they started to grow the organization, it also started to
take away from what they were trying to do with their own kids or their own family members
and that became a stress point.
So having a right blend of board members, for example, to decompress that makes a big
difference and also in our situation here in West Michigan, I can easily disassociate
myself from individuals and look at the larger group whereas when you have a child, it's
hard to do that, right?
Because you want to take care of them but you also want to create more opportunities.
So what we've decided or started doing is just making sure that everyone, you shouldn't
feel guilty about adding more people.
Just continue to do the right thing and I don't feel challenged or concerned by other
organizations doing the same thing because I remember when we started, there weren't
too many people that were doing it to the extent that my team triumph did.
These other organizations grew and started doing it since then but not prior to them.
Prior to them, it was a lot of the one on one.
So for me, it didn't matter.
As a matter of fact, I did the rock and roll half marathon in Fib this year and I could
represent my team triumph with my shirt but I worked with a team white chapter from Vegas
and I pushed someone in an Angel's chair and that's the best of all three worlds colliding
and what it became about that day was about Captain Chris.
It wasn't about an organization but it was about a person.
And so that for me is what my goal is.
The challenge really is to take out the blinkers and see yourself as an organization but see
the individual that you're trying to create the experience for and do it for that reason.
Yeah, I love that and obviously it's never going to be an individual mission and you
can only accomplish so much working on your own so it would be better if a lot of organizations
that had similar missions were more collaborative in nature.
I've unfortunately found that not to always be the case but it would be excellent if it
was keeping the goal the goal but realizing that you can learn so much and you can reach
more people the more you work with those other organizations.
Maybe do you have a favorite race that stands out or a favorite running experience?
Yeah, so in terms of a favorite running experience, so Captain Matt Smith was our first captain
in 2008, he was 11 years old I believe when he did his first race with us.
And Matt and I have done quite a few races at different places together.
When he turned 18, I wanted to create a special thing for him so we created the four state
marathon challenge where just him and I hit the road and ran a marathon in Ohio, in Indiana,
in Wisconsin and then in Grand Rapids and that was an amazing, amazing experience for
me.
Matt's parents had never let him go out with anyone up to that point because there was
no one had established, no outsider from outside the family had established that kind of relationship
and rapport and so for me it was a reflection of the trust that we had built over the years
and Matt and I had an absolute blast.
Now was it work?
Yeah.
Did I have a whole new respect for Matt's parents?
Absolutely.
Because you know I would get him in the car, put his wheelchair away, strap him in, we
get to a restaurant, you need to use the bathroom, you got to take him out, put him in the chair,
get him into the restaurant and so on race morning I was up at three in the morning,
get myself ready, then I had to get Matt ready, load everyone into the vehicle because it
was just him and I and then we'd get to the race site and then I had to open the chair,
assemble it, check the tire pressures, get him in the chair and then get to the starting
line and who believe it or not that's when I could like, I can relax.
I'm about to run a marathon.
And then you had to run a marathon.
And I ran a marathon already for three hours and the actual marathon itself was going to
be the easiest part of my day and so I really got a whole new fondix appreciation for parents
or family members of those with disabilities but also got an understanding of how someone
with a disability can feel like a burden, right?
Unless we take that, we decompress that burden and let them know that it's okay.
We all function differently.
We just got to figure out how to help each other out and that's it.
It's just an unconditional act of things that we just do.
Why?
Because we're human.
This is our society.
This is what we do.
So for me that was a whole, whole appreciation there of being able to do those marathons
with Matt.
As a matter of fact, we had our national conference around that same in the next couple of years
in Vegas and Matt and I flew out to Vegas and I took him on a trip going, all right,
we're going to do this and he'd never been on a plane before.
And I'd never traveled on a plane with someone with a disability and yet we figured it out
and we had an amazing time.
So for me that experience was amazing.
And the other event that stands out is Johnny Aigar.
I don't know if you're familiar with team Aigar.
Yeah.
Johnny started racing with us through my team triumphs first until his dad then asked if
he could do a 5k with his kid and that pretty soon grew into them doing more and more races
when Jeff, the dad, saw how much Johnny enjoyed racing.
But Jeff and the whole Aigar family have always been very thankful to my team triumph for all
the things that we were able to get them to to the point when they got invited to Kona
in 2016.
They asked me to travel with them and help them with logistics because again, outside
of being an athlete, I also could understand the setup, the bike, the transitions and what
have you.
And so I got to help them with all of those things.
And whenever Johnny raced and even though he didn't finish that one, he was able to
do several other races in Florida and in Texas.
And wherever he went, I went with the family.
I traveled, I got to travel to Germany when they did the Roth challenge out there.
So for me, in terms of kind of, you know, being able to create this impact that is bigger
and way beyond what I could even imagine, that was an amazing adventure as well.
So we've got some great, great things.
And then to meet Dick when we went to the Boston Marathon in 2017 or 2018, I believe,
we just ran into him totally by accident at the hotel lobby.
And I walked up and I'm sorry he was just having lunch with Kathy and I said, I'm sorry
to interrupt, but you're Dick Hoyt.
I'm Terence Reuben.
It's an absolute pleasure to meet you.
Here's who I am and where I come from.
And Matt Smith was, I had taken Matt with me to Boston and this is Matt Smith and I introduced
him and Dick looked at Matt and started talking, you know, with him and he said, Matt, you
remind me so much of my son Rick, except you can speak.
And for those five days that we were there, Dick found us whenever he could and would
have these, he would stop everything and have a long conversation with Matt the whole time.
Even came to our booth during the expo and hung up with us a little bit.
And so for me, that's really what it's all about again, right?
Because sometimes you can get lost in a name or a title, but you forget the impact that
you can have on an individual.
And it is important for us to continue to have impacts on individuals as well.
Yes, there's a bigger, greater picture, but you know, everything should be personalized
to the person that's in front of you.
Yeah.
Yeah, I probably can't articulate it any better than that.
But it was the same.
Like Dick has obviously played a huge role in my life.
And last time I saw him was at my wedding and we qualified for Boston two days before
Rick recently passed away.
So it's all been like, they've played a huge role in everything I do.
And now we run the Rick White Research Lab here at my facility.
I asked Rick earlier this year if I could name it after him because we want to do work
on cerebral palsy.
So that's a good reminder every day I come into work to see his name up there and carrying
on some of the stuff that they do is important to myself.
And I'm sure you as well.
But we wrap up a lot of these discussions with this question.
So is there anything specific that you think like we're in the fitness industry, but maybe
we can also say endurance sports as well?
Like what the fitness industry needs to do to become more inclusive or accessible?
Yeah, no.
And this is down to what you're creating right now with AdaptX, right?
Because I think in the fitness industry, if you look at the design of all the equipment
we have, they're starting to shift a little bit more to equipment that is more adaptive
for someone in a wheelchair with a disability.
And I think when I look at it, some of the equipment focus has been on maybe like a paraplegic.
This still has use of both arms, right?
But what can we do to help someone who has cerebral palsy?
They can only use one arm.
How can we adapt equipment so that they could still get a good workout using special equipment
for that?
And I don't think that equipment has to be that different.
It just needs to be designed in a way that can be used by anyone.
We don't want special equipment for someone with a disability and a different set of equipment
for someone that doesn't have it.
We should be able to, we can send people to the moon.
We can figure out how to create equipment that can be all-inclusive.
The experience at a lot of the gyms and fitness facilities, they stack the equipment together
so tight that you can't get a chair through there.
That shouldn't happen.
Why can't we rethink how we lay out things so it can be more accessible?
And we think about, you know, we may put a piece of equipment out there, but then we
don't have anyone to help someone that has a disability as they roll up.
And if they need something to, if they need help just wiping a piece down, we don't provide
the infrastructure, the staff, the, what have you for them.
Those are the kind of simple, low-hanging fruit that we can change, but we have to be
the change.
And so people like you and I, and I'm sure there's many more out there, the more that
we can normalize that and create the right access points and create the right, you know,
expectations for everyone.
And then we also have to have a more inviting culture as well, right?
How do we highlight that this facility is geared to help you, all of you?
And I don't think we do enough of advertising that.
So people have done this in different spurts of, you know, they have the equipment, but
they don't have the staff.
They have the staff with the knowledge, they don't have the equipment.
How do we put it all together?
And I think that's going to be the challenge for us as we move forward.
I love the fact that we focus on individuals with disabilities because we are trying to
sort of level the playing field.
But in my dream, my vision is that we shouldn't focus on them because they should be so normalized
and assimilated into our culture that you shouldn't have to look around and hold the door open
when someone comes in on a wheelchair because the system is set up for them to just come
in and access and do and be.
I had coffee at the coffee shop this morning and I said to my friend, I was talking about
my team five as well.
And I said, look around.
Do you see anyone here in a wheelchair?
Why aren't they in here?
Why do they feel that that's too much, that's too hard to go and do?
How do we set up a space where they can do and be everywhere they want to be?
So I think that's, I want to get to the point where people don't stare at someone that's
in a wheelchair.
We celebrate the fact that they're out there enjoying life the way we do.
So one of the cool things that we're doing right now, I just got back two weeks ago from
a trip to the Middle East.
I went through Egypt, Jordan, and Israel trying to figure out how could I take someone in
a wheelchair, someone with a disability through a tour, through those areas.
And we're making it happen for 2024.
So what's the spot?
You're doing a lot of cool things.
That's awesome.
Yeah, the comments on normalizing disabilities is what I've always been passionate about.
It seems like it's a project more of education and kind of reframing people's views on disability.
And like you said, some gyms will be so tightly packed together and they might make the excuse
like, oh, we don't work with people with disabilities.
It's like, yeah, obviously you don't because they can't get into your gym.
So it's like, yeah, no one's ever going to come to your gym because it's not accessible
in that regard.
So yeah, the normalizing disabilities is essential to me.
I think inclusion is not just working with people with disabilities and isolation.
It's creating systems and environments where they can coexist among their peers.
So that's been the model that we've tried to adopt at my gym here and then the model
that we try to communicate to people with our curriculum as well.
Terrence, thanks for joining me today. It was the conversation lift up to the expectations
that I had for it.
So I really appreciate you taking the time.
My pleasure.
I appreciate the opportunity and I'm thankful for the work that you're doing outside in
Massachusetts as well.
Yeah, we'll leave some links to my team triumph in the show notes and I'll follow up with
you to get any relevant information that you want to share with the audience.
But again, thank you for your time.
You're welcome.
It sounds good to have a blessed day.
Thanks.
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