-: It's a pleasure to meet with you today.
And I would like to explain
a little bit more about my background.
I have degrees in education and social work.
I've been a social worker, a family therapist,
a fifth-grade teacher, a second-grade teacher,
and a college professor.
I now work as one of the only national amputee educators
with Hanger Clinic.
And what I wanna share with you today is the importance
of education, specifically presurgical education,
when it comes to amputation.
As I reflected on my career over the past 33 years,
I realized that I've been in a role of an advocate
the entire time.
I've been in many fields,
but it has been the most wonderful experience.
You might be looking at this quote and wondering
what on earth it has to do with amputation,
much less presurgical education.
This is a quote that I live by
and I believe that I am just crazy enough to believe
I can change this experience with the help of many people,
including at MIT, the people who are changing
the products that we will wear.
Let's see, oh, I apologize.
This was a quote that is very powerful.
And you might wonder what it has to do
with presurgical education.
And the reality is,
is that I think that I'm crazy enough
to change this experience, knowing that I can't do it alone.
I need the help of people like you,
who every day are working to change the lives of those
who live with amputations so that they can fully reintegrate
into their lives and be empowered to live their best life.
Five years ago when I lost my leg,
I quickly discovered how ill prepared I was
at facing the prospect of amputation.
And I've since realized that I'm not alone.
Everyone who walks through this experience finds themselves
in the same situation, but it's the knowledge of this
that fueled a fire within me that through education
we could make a significant difference in the lives
of the patients and their family members.
So you can see that I feel a deep connection to this quote.
Today, I've got the privilege of sharing with you
the experience of what it means to live with limb loss
in my life alone, but I also want you to consider
that there will be hundreds of individuals today alone
who undergo amputation and thousands throughout the month.
Literally 2.1 million individuals in the United States
live with amputation, but together you and I can consider
how we can change the experience
through operative education.
Now, I know that you can't answer out loud to me,
but I want you to take a look at this ribbon.
And I just want you to think of what comes to mind
when you see it.
Perhaps your mind goes immediately to cancer,
breast cancer specifically.
Maybe it goes off to the education, the resources,
and the support that are available for their patients.
And perhaps even still your mind wanders off
to the efforts of Betty Ford, Estee Lauder,
and Susan G. Komen.
Today, the standard of care that cancer patients
of all different types receive can be tied back
to the efforts of those three individuals.
It wasn't always that way,
but now education is the gold standard of care.
And even though it's still reviled and feared,
we celebrate those who face cancer.
We call them warriors and we sit alongside of them
and we log their successes and we look
to their lives for inspiration.
For cancer patients, education and resources
are the standard of care from the moment of diagnosis.
And again, I know that you can't respond out loud,
but I want you to look at this ribbon,
the same form, same size,
but likely isn't soliciting from you the same response.
And that's okay.
We'll come back to this.
In the United States,
there are approximately 185,000 amputations
that occur each year.
These are full limb amputations.
This number doesn't take into account the partial.
And among those living with limb loss,
the main causes are vascular disease,
including diabetes and peripheral arterial disease.
Of the 500 individuals who undergo an amputation today,
230 of those individuals will have diabetic
and vascular concerns.
This works out to one individual every 30 seconds today
will have an amputation.
Sit with that for just a second,
one person every 30 seconds, no education.
The Amputee Coalition reports that these diseases
account for 54% of all amputation,
trauma makes up 45% of all amputation,
and cancer causes less than 2%.
When we consider this, persons who have diabetes
who have undergone a lower extremity amputation
will account for more than half of a second amputation
within two to three years.
Now being an old teacher,
you can take the teacher out of the classroom,
but you can't take the classroom out of the teacher.
So let's do a little bit of time travel.
The history of amputation and prosthetics
is not only a medical and scientific history,
but it's the story of human beings.
Human beings, who since the dawn of civilization,
who by birth, wound, or accident have found themself
with something missing.
Amputations and prosthetics date back to the ancient times.
It's a fascinating story of human endurance.
Here what we're looking at is evidence
of neolithic people who have survived
partial hand amputations, likely due to injury or frostbite.
We know that limb loss has been part of the human history
from the beginning of time.
Archeologists have discovered evidence of amputation.
In Central America, Aztec statues were found
depicting individuals with limbs absent.
At first, they thought that perhaps this was the result
of damage done over the years, but then as they
unearthed more statues, they realized that these
were actually carved as a sign of respect
to those living with limb loss.
It's no wonder then that amputees
have made their way into mythology.
And there are a number of heroes and deities
in the old stories of individuals who are missing limbs.
Let's take first and consider this individual.
And this is Queen Vishla from a 3,200-year-old poem.
There's the tale of Queen Vishla,
who was a mighty, mighty queen.
She is told to have lost her leg in battle.
And according to legend,
she was given an iron leg so that she could
continue fighting and defending her people.
This is King Nuada and Irish lore tells of his greatness.
And he had come to the Emerald Isle to claim the land
for his people when a battle ensued and he lost his arm
in combat to another great warrior.
He was fashioned an arm of silver and went by the name
Airgeadlamh, which literally means silver arm.
He ruled Ireland for 20 years as an upper extremity amputee.
Now being from Minnesota,
I'm rather partial to the Vikings
and who you're looking at here is Tyr.
This individual also was an upper extremity amputee
due to battle, but he protected the Viking people
for 30 more years and ruled as its king.
We've also acquired the day of the week, Tuesday,
named after this individual.
Again, evidence of the impact of amputees in our world.
This is an image of Tezcatlipoca.
Tezcatlipoca is the central deity in the Aztec culture.
In carvings and drawings, he's often depicted wearing
several different prosthetics.
Here you can see him with one made of obsidian.
His twin brother Quetzalcoatl was thought to have been
the one who caused his congenital limb loss
and because of Tezcatlipoca, children in the Aztec culture
who were born missing limbs or individuals who acquired
limb loss were highly respected and revered.
And many of us may have enjoyed the Olympic ceremonies.
This is where Pelops comes into play.
Pelops was a great hero who had lost his arm in a conflict
with his father resulting in a brachial plexi situation.
It didn't slow him down.
Pelops is credited with creating a chariot race,
which was the precursor to the Olympic games.
So in a sense there would've been no Olympics
had it not been for a Paralympian.
Now let's take a closer look at some things
that archeologists have discovered about amputation.
Through many of their finds,
scientists have confirmed that throughout history
amputation has been about reestablishing wholeness.
This is an image of a 6,000-year-old hand amputation.
The scientists on site noted
the entire right hand was missing.
And we know that this was a surgical removal
because the ulna and radial bones had grown back together
at the wrist.
This was also evidence that the individual
had survived the surgery.
You may be well familiar with this.
Oh, pardon me.
What you were looking at was the Cairo Toe.
It's the earliest example of a prosthetic.
This was found back between 950 and 710 BC.
And looking at that toe,
we could easily see the attention
that the artist indicates in the details.
But what we know about it is that it belonged
to a noble woman.
In Egypt, there were two types of sandals that were worn.
One was a sandal that strapped up the ankle,
and the other was a thong,
much like the modern-day flip flop.
The noble class of the time would have worn
the thong flip flop sandal.
So it was critical to this woman's wellbeing
and social status to have a prosthetic that allowed her
to wear those shoes.
What you're looking at here is a depiction
of Roman general Marcus Sergius.
He again was an amputee who continued
to battle for his people.
His is considered to have been
the first documented wearing of a prosthetic.
And it was during the Second Punic War
when Sergius lost his leg
that the prosthetic was fashioned for him.
This prosthetic allowed him to continue on
in many more battles.
So the question I'll pose to you today is this,
how could the enduring happenstance of limb loss
come to be such a collective blind spot in today's culture?
This shows that limb loss always has been, continues to,
and always will be with us.
It's the human experience and one that could
potentially visit any of us or our loved ones at any time.
So it begs us to wonder how well positioned do we think
we are in this present moment with our medical care,
our surgical techniques, and our prosthetic restoration
to help those facing limb loss know what they're in for
and to teach them how to cope
and then meaningfully reintegrate
back into their lives productively.
In the history of mankind, this is our ark in time.
This is the time period that we're responsible for.
We're responsible for our current attitudes, our knowhow,
our management, and our influence
of the livelihoods of so many.
Let's move forward just a little bit in history
to the early 16th century.
Here's where we're going to meet Dr. Ambrose Pare.
He was a royal surgeon to four French kings
and he is known most significantly for his advances
in amputation surgery.
Additionally, he's credited to have invented
mechanical versions of limbs that included locking knees
and mechanical hands that had fingers capable somewhat
of lifelike movement due to clockwork mechanisms.
The surgical advancements made by Dr. Ambrose Pare,
as well as his techniques for attaching prosthetic limbs,
remain common in prosthetic fittings to this day.
And because of the development of advanced weaponry
used in battle, the field of prosthetics needed
to rise to the demand.
You're looking at Edward Hanger.
He was the first amputee of the civil war.
He was credited with designing and articulating an ankle,
which revolutionized the care and working prosthetics
of 70,000 individuals in the Civil War.
So to my story and why I'm here with you today.
As you've heard, I'm a bilateral below the knee amputee.
My amputations were the result of a surgery
that had tragic complications.
As my dressings were removed
at the very first postop meeting,
my top of the foot ruptured with a staph infection.
The piece of hardware that had been placed
had become infected.
My surgeon screwed the piece of hardware
back into place in clinic.
I was an amputee at that point, I just didn't know it.
And over the next three and a half years,
I had several medical interventions,
multiple hospitalizations, IV antibiotics, wound vacs,
bone stimulators, lymphedema pumps,
but all of this was to no avail because I still had
an unrecognized piece of hardware in my body.
This left me with no option
but to amputate my right leg below the knee.
Two days after learning that I would need an amputation,
I received a phone call for my primary doctor.
She told me that I had ovarian cancer.
My friends asked me if I was frightened
by the cancer diagnosis.
And I said, I wasn't at all.
And here's how I explained it.
You see, as a child, I remembered whispering
about family members who had the big C.
We would visit them in hospital rooms that were dark.
It was as though we were mourning the dead
while they were still alive.
But with my diagnosis,
I had the assurance of what Susan G. Komen and her team
had done to change the perception
and the experience of having cancer.
No longer do we whisper about cancer,
no longer do we hide cancer.
As I mentioned earlier,
we dress it up in hot pink, and we go along
with individuals, laud them as warriors,
and join them in their fight.
Their lives are celebrated.
We laud their strength and their courage.
And while I didn't have breast cancer,
I still gleaned hope from the work that had been done.
After my diagnosis of cancer, almost immediately,
nutritionists and nurses called me with resources.
I was given web pages to look at.
I was given contact numbers for other individuals
who'd had cancer and lived through it.
Social workers called me frequently offering me resources.
They even had 'em for my family,
friends, and coworkers.
Members of my oncology team called me routinely
to update me on things I needed to be aware of.
It was almost as if an army of caregivers had set up camp
right on my front step to do battle with cancer.
I was so well educated and supported regarding my cancer
I didn't have time to be afraid.
At the same time. I had none of this
regarding my upcoming amputation.
I agonized over the decision to amputate my leg
as I waited for that date to arrive.
Amputation terrified me.
There was no one for me to talk to,
nowhere for me to go to get answers to my questions,
there was no collaborative team,
there was no preoperative education, resources, or support.
I was told I would need an amputation
and it was scheduled three weeks out.
Imagine three terrifying weeks
without any answers to questions,
three weeks without being able to prepare.
Those obviously were the most terrifying days of my life,
far more terrifying than knowing I also had cancer.
But I was a social worker
and I knew how to rally my resources.
I did what most patients are not able to do.
I began to coordinate.
I interviewed orthopedic surgeons and prosthetic companies.
I found a prosthetic clinician that I liked and trusted.
And I set about research and learning everything I could
about healing timeline and the amputation progress schedule.
I taught myself what I'd need to know
about prosthetic products.
And after my amputation, while I was at acute rehab,
I was sharing this information
with my physical therapy team.
And they would ask me after sessions to go down the hallway
and to meet with patients in rooms, so I would.
I'd wheel in with my leg up on a stump support
and begin a conversation.
I was meeting with individuals in beds who had no clue
of their timeline or what lay ahead for them.
They had the same terrifying lack of information
that I had suffered through
and I gladly shared what I knew.
And even though I went back to work as a teacher,
I knew that I just couldn't leave this reality sit.
So I began on weekends and school breaks to educate patients
that were referred to me by orthopedic surgeons
and prosthetic companies in the Twin Cities.
It was a year later nearly to the date
that I became a bilateral amputee.
You see the same infection that took my right leg
remained in my body, we just didn't know it.
And on the day that led to my second amputation,
I fell victim a second time to sepsis.
And after my second amputation,
I returned to the same wonderful acute rehab center.
I was prepared to meet with patients this time.
I was set with answers for their family members.
What I was not prepared for was to have the rehab doctors
come into my room, followed by their residents,
and I was asked to teach them, being an amputee,
and help them (garbled) prosthetics.
It was while I was at rehab the second time
that my clinician encouraged me to start
balance amputee wellness communities.
We joked that as a bilateral, I had more credibility
than I did after my first amputation.
It was clear to me that there was an obvious need
for education about amputation on multiple levels,
not just the patient,
but for the doctors and care teams, as well.
What is now a national resource began
with seven members meeting once a month.
A piece of this that I'm most proud of is the opportunity
to come alongside of surgical teams
and patients with preoperative education consults.
We know that with joint replacement
insurance will often mandate that a patient
is given access to presurgical education.
This isn't true for amputation.
But I've had the ability to design
the curriculum that makes this happen.
You see, it has never made sense to me that when patients
receive a joint replacement and ambulate out of the hospital
on their own that we educate them
while those who lose limbs leave with nothing.
As I was writing this,
I thought it would be interesting to explore
how many major health events have dedicated web pages
that provide education and resources to patients.
So let's just take a light touch at what's available.
So here it is, let's take a look at it again,
the orange ribbon.
I'll bet you have a better sense
of where I'm going with this.
I'll bet you have an idea of what it represents.
As you heard in my introduction,
orange is the color for amputees
and this represents amputee awareness.
In fact, this month is dedicated
to amputee and limb awareness.
My purpose, my passion is to demystify
what it means to live with amputation.
Frequently individuals who have had diabetic concerns
may find themselves with amputation
and they may find that there are very few people
who understand their situation and the guilt and shame
that they feel may lead them into mental health crisis,
30% of all amputees report issues with depression,
many deal with anxiety,
and it's not uncommon for individuals
to show signs of PTSD.
But we know that education influences outcomes.
All of these experiences that I've shared with you
are evidence of why preoperative education,
and education at any point, is critical
to successful rehabilitation and reintegration
of the individual with limb loss after amputation.
In the current format, education that's offered
to an individual often given in the form of a pamphlet.
Can you imagine if that was the only education
that we offer an individual with any of the other diagnoses
that we saw slides for?
And all too often this information given in pamphlet form
is shared with the person
after they've gone through the amputation.
And it can be filled with terms that are confusing.
This is the time after amputation when the patient's
in pain, and they've been given medications,
it's hard to focus, and they may already have developed
a limited perspective of what they think
is possible for their life.
So again, the question I place before everyone that
I talk to is this, isn't it time to make
comprehensive wellness education for those who have
gone through amputation a standard of care?
I've created 16 nationally attended
amputee wellness communities that provide education
and resources for nearly 1,000 individuals daily.
I work with everyone across the nation who touches the lives
of amputees, hospital systems, general practitioners,
diabetic educators, at any level that I can reach
to make sure that we are (garble) the standard of care.
And while I've had the opportunity to make this possible
and I look forward to forming as many connections
and collaborations as possible.
So let's take a look at this quote one more time.
Today, together we've considered the history
of limb loss and amputation.
History that's being written every single day
in the lives of millions of people across the nations.
So on behalf of the amputee community,
I want to thank each one of you for all the ways
that you are contributing to an empowered life,
because you truly are history makers.
Thank you again for your time.
And I look forward to your questions and any opportunities
that we may have to form partnerships and collaborate.
-: Thank you, Leslie.
I have many questions,
but I will start off with a small one
and then I'll get to everybody's hands.
Where did the color orange come from?
Was that created before the awareness groups
that you had set up, or was that always the case,
or was it generated because of the new awareness?
-: That's a great question.
The Amputee Coalition, and you may have heard of them,
they're the largest provider of print materials
for those going through amputation.
They originated limb awareness month and the color orange.
So they are based out of Washington DC now.
And they are the, like I said,
the greatest storehouse of any print materials
that can be accessed by amputees.
-: Okay, interesting.
Okay, raised hands.
I saw a few.
Where are they?
Lisa,
just unmute.
-: Sorry. -: No worries.
-: I enjoyed hearing that very much, thanks.
I actually have two questions.
The first would be do you have any sessions
that are for people in nursing homes?
Because I noticed that there are huge communities
living there, and if there's any difference about that,
the integration is clearly one difference
if people are long term there.
And the other, just such an intriguing thing is
you mentioned joint replacements as one of the,
why do you suppose it is that something as similar
as a joint replacement,
no, no, they're not similar, but they're quite,
that's the closest one you mentioned.
Why would amputation, why did this fall off over time?
-: Well, and to start with the nursing home piece.
Thank you for bringing that up because I think another area
that is definitely underserved and perhaps forgotten
are the senior amputees.
And as I see Hugh here on the call with me today,
neither one of us are getting any younger.
We are aging into this process and we need to be cognizant
of how amputation affects the senior population.
So to that end, I do work with both short-term
and long-term facilities to make sure that I'm in person
as often as possible, because I know that technology
can be a frustrating thing for people of all ages.
I like that in-person touch in the nursing homes
for the senior population.
And that is a group that is near and dear to my heart.
I can't imagine coming full through my life and being active
and suddenly facing amputation in my 70s or 80s.
I would want somebody in person right there
to come into my room, so I make
that available every week, as well.
That isn't a virtual component right now,
but I do have seniors who are attending,
but for the nursing home individuals,
that's one where I go out personally.
And then to the issue of joint replacement and education.
Although it's not anywhere, my best supposition
about why education is offered for joint replacement
would simply be because of device failure rates.
The insurance company's not wanting to need to go in
with a second device if the person did rehab correctly
causing the device to fail.
So that is the best conjecture that I have as to why
education is available for joint replacement.
Because if you think of it at its basic piece,
a joint replacement is a prosthetic.
It's just an internal prosthetic.
Great question.
-: Does anybody else have questions?
-: Thank you, Leslie, for your wonderful talk.
Just wanted to ask,
throughout the history of prosthetic technology development,
we're seeing an arc, of course, from devices
that are primitive,
very much separate from the body,
very much tool like,
often painful, often lacking agency with the user.
That's not totally in the past, unfortunately,
but we're knocking on the door in the field
of the other end of the spectrum,
where a person is mechanically and early integrated
with the synthetic limb, where there's we're beginning
to see a fairly pronounced level of ownership and agency.
How do you see the coupling between that technological arc
and the emotional arc of getting an amputation,
receiving a new prosthesis and whatnot?
-: That's powerful.
That is powerful.
Every time you have a prosthesis that fits well,
you feel complete, you feel empowered,
you have the ability and the independence
to do the things that you want.
And those are all of the things that are missing
at the point of amputation,
the questions of will I be able to do.
And any time that doubt enters the mind of an amputee,
the quality of life issue comes into question.
So I think that the better we can design devices
to fit and function, the more we erase the questions
and we build the confidence that life is able
to be lived fully and abundantly with these products.
And so to that end, I'm excited to see the advancements
that are being made and I'm hopeful that that one day
we won't wonder about what will life be like,
it'll be just another event that happens medically
with the assurance that you'll return fully
to the things you love to do and to the people who love you.
-: One thing we're thinking about is, so again,
I'm drawing a distinction between a prosthesis
that's non-invasive and therefore tool-like,
like a hammer is a tool,
the difference between a tool like a hammer
in your own hand, right.
What makes your own hand you?
We're trying to think about a new type of prosthesis
that's highly embodied,
that requires an integration of electro mechanics
with tissues, that involves
a surgical procedure with reimbursement.
So now the tool-like noninvasive devices
are under durable medical
with frustratingly low price points often.
And what we want to do is get an embodied prosthesis
that requires surgery,
and maybe has (garble) signaling
to fall outside of durable medical,
wherein there's more appropriate price points
to motivate companies to advance such complex systems.
Have you thought about those reimbursement challenges
and what we should do as a field?
-: I have to say that that is not something
that I thought about.
I understand that that is an absolute reality,
but in the line of work that I do,
dealing entirely with the psychosocial
component of amputation.
-: Well, part of that psychosocial arc is fear of finances
and not being able to have the prosthesis paid for.
-: Absolutely, absolutely.
-: I heard that Tufts reimburses
for a prosthetic $1,500 a year
and it doesn't even add year by year.
So if you're going five years without a prosthesis,
you still only have $1,500,
which barely just covers a pair of liners.
-: But there again, I think, is that whole perception piece.
Looking historically at who amputees have been,
and if, again, we change the perception and we see
that individuals living with amputation
are contributing members at high levels of our society,
and if we allow them that place again,
rather than relegating them to a label that suggests
that there's nothing that they have left to offer
because they've lost a limb,
I think that if we can change the perspective
and the perception, might not insurance companies
then have to rise and change their position
on who is valuable and what is valuable in our world?
If we take a look at social media and who garners
the most attention, we see athletes, we see musicians,
and those are great skills and talents.
But in social media terms, if you don't fit that mold,
if you don't look exactly with that body type,
then many times value isn't assigned.
And I think that if we can regain ground as a community
and reestablish our skillset and our worth
by how we project ourselves, as well,
we'll become a voice that can't be ignored and relegated
to the lower reimbursements that you're seeing.
I think that insurance companies will have
a point with society.
If society changes, then we stand a chance at seeing
other things change, as well.
It's discouraging to me that when we think about individuals
with limb loss, that we aren't more like to use
the term enhanced and augmented,
the terms like disabled are still so strong.
When I think of--
-: What do you, if I might interject,
what do you think about the word disabled?
-: I love Aimee Mullins's TED talk
where she picked it apart, the (garble).
And I think that there's great need for people
to understand words at their base,
as a former teacher words have power.
And as often as possible,
I share that TED talk so that people stop and think
about at the base, what does that word,
what is synonymous with that word?
Because if, as a society,
we don't call attention to the synonyms of that word,
we will forever live under the weight of those words
and not rise up to a position where people see
the value of who we are.
-: Yeah, I agree.
There's a community of people, when I say
at the twilight years of this century
we will end disability, that get prickly and get upset
with me because they view disability as a community,
and by saying that I'm (garble) the community
as opposed to viewing disability as limitation,
as pain, as suffering.
They also equate disability with otherness.
So I'm trying to normalize humanity somehow,
which I'm saying the opposite,
trying to expand diversity, but eliminate
as much pain and suffering as possible.
It's very, very interesting.
My language is I despise the phrase disabled human,
I don't think a disabled human exists,
but obviously humans experience disability.
And the culprit is a horrendously, wholly inadequate
built technological world.
So I was wondering your comments on that, thank you.
-: And I think you're right, I mean, how you turn
that phrase, people experience,
it's the experience, it's not the person.
We never assign, as a cancer survivor I am not cancer,
with every other medical diagnosis that we have,
we don't label the individual with their diagnosis.
-: Yeah, that's why I hate, I also,
I have so many pet peeves,
I also hate the word amputee.
I'm a person with amputation.
When do you label a person with like,
do you call someone a spinal cord injury?
It's so strange.
-: Yeah, agreed, agreed.
It is, it's a powerful time to be involved in this.
And the burden of this point of history,
especially with the work that you do at MIT, is tremendous.
-: Thank you.
We need, I think we would all agree
that we need a new language.
And the word or the phrase should simply describe
the condition without imposing a judgment on capability
or ableness, or non-ableness.
I also hate differently abled,
'cause the interpretation of that is less than,
it's not augmentation.
Differently abled means you're not as capable.
But they equate a person with an unusual body with weakness.
Why can't you just say the person has
an unusual body, like differently bodied?
And let the judgment away, like give it up.
-: I will share with you my pet peeve.
And it's when people say I'm an inspiration.
And I'll laugh and say, really?
I'm doing laundry the way I always have.
I'm making my bed the way I always have.
I'm doing all the things the way I always have.
Perhaps you never noticed how wonderful I was to begin with.
I haven't changed.
What I find inspiring, and I mean this sincerely,
is to see this many people on the call
who may not be directly impacted by limb loss
or limb difference who have decided to take up this charge,
who have decided to help move forward something,
that like I said may not directly affect you.
To me, that's inspirational.
-: Absolutely.
-: There's a lot of work to be done,
but it's fun to meet teams that are rising
to that challenge every day.
-: Chris, did you have a comment before I get to Lisa?
No?
Okay, Lisa.
-: Yeah, I was gonna just extend the last conversation,
so interesting, as to what is your outreach
and how you improve and increase the availability
of a social worker like yourself to people in person,
hopefully, or at least in some way,
including even people who aren't that productive anymore,
if you wanna say, or exceptional,
like those nursing home people?
How can you lower maybe the prohibitive cost
of even a counseling session spaced at weekly intervals
during the preoperative period, those three weeks?
Because it seems that although there's a lot to be argued
for full integration back into traditional activities,
that some people might be at a later stage of their life
and they still might not deserve to have
the worst three weeks of their life
living without the education
that you've developed with the program.
So that those are expensive sessions for somebody
living in a Medicaid situation.
-: That's a wonderful question,
so how to expand what I'm doing.
Everything I do is free, there is no cost.
And what I offer is open to everyone
regardless of where they receive their care.
Everything I do is virtual with the exception
of the nursing home visits in person.
And so what I spend a great deal of my time,
and what I had shared with Lindsay, is looking
for that highest mountain where I can stand on and say,
it's over here, this preoperative opportunity is here,
that there is no need to schedule an amputation
and not have available, to make this
standard of care across the nation.
So the joy of my days is when I have an opportunity
to meet with a hospital system that says,
we're ready to bring this on.
And so to get the message out, to let providers know,
to let surgeons know, to let systems know this is here,
it's time that we include this,
to change the perception that is still held
that amputation is a failure.
I hate to ask the question, but do I
look like a failure to you, right, or not?
And it can be a life-saving opportunity,
whether it's an imminent issue, such as sepsis,
or a chronic issue from limb pain
that a person has lived with.
It's a life-saving procedure.
So how to expand what I'm doing, to get
as many referral sources in front of me as possible,
to let them know we're here to bridge this gap.
We can answer the questions.
There has not been a question from an individual
waiting for surgery that I haven't been able to answer
in terms of what will be capable.
There hasn't been an issue that we haven't
been able to talk on.
If all of these answers were unknowable,
I could understand not wanting to offer this,
but the answers to the questions are knowable.
Will I be able to go back to work?
Will I be able to drive?
Will I be able to play with my child?
These are knowable things now.
Now, yes, there's a human factor of how long
will it take to heal, but we can provide the solace
of truth and the education that will help the person
actively progress to the point
where they're doing those things again.
We wouldn't think in any other diagnosis
of not offering education.
Can you imagine a cardiovascular patient not having
education about the procedure and what life
would need to entail going forward
while they rehabilitate it or cancer?
We wouldn't allow that.
And so the time has come to realize
that we don't need to allow this any longer.
You looked a little surprised when I said it was free.
It is, everything I do is free.
-: Maybe you want that in your slide deck.
-: Yeah.
And when you talk about counseling, I mean,
there's another area that we really need to work
to design mental health around the experience.
So often we try to pound a round peg into a square hole
when it comes to counseling somebody
who's been through limb loss, and think, well,
this will be good enough and this will fit.
But there again, we wouldn't do that
for any other area in mental health.
-: I wonder if there's any survey that asks people
of all kinds of preoperative diagnoses
how frightened are you on a scale to one to 10
and then they list some.
And I wonder where you suppose amputation
would be on that scale?
I mean, it would probably not be at the low end.
And so maybe people are just so afraid in general,
maybe fear is one of the culprits here.
-: Definitely, and I think that part of that is
there usually is no one to ask the question.
Here's another term that I understand is a medical term
that we have to use, elective versus traumatic.
Again, all amputation is traumatic.
It's just the onset point.
When we call an amputation elective, yes,
it's a medical term, meaning you chose to do this,
but frequently the reason the person chose
is that there was no other choice quite honestly.
But most often at that point, even with elective,
there isn't a resource offered
to even ask that question of fear.
And I worry that we overburden surgeons
asking them to be psychologists and surgeons,
that we need to allow them to do what they do well
and bring in resources that are equipped to deal with that.
And that's really my hope is that we take this off
of the surgeon's plate and let them focus on doing well
what they've trained to do and make
comprehensive care pathways a reality for this situation.
-: I have a question, kind of back to what
he was saying before when you were talking about pet peeves.
So you don't like being called an amputee,
I know you hate the term disabled person, and Leslie,
I forgot what you had said,
what is the term that you do think about
when you think about the fact that you did have amputations
or do you prefer not to be labeled at all?
You're just Hugh or you're just Leslie Green,
like there's no need to put you in a category at all.
Is that the, I think, Hugh,
it's hard sometimes because that's the forefront
of what we're doing in the biomech lab
and you're associated with that.
How do you stop people from identifying you as that?
Like, what is your hope?
-: In our papers, we don't typically use the word amputee.
We say a person with amputation.
-: Okay.
All right.
-: But again, there just has to be work done.
We're not there yet in my view on language.
-: Yeah, something like differently bodied
that doesn't apply a judgment on a person
in terms of what their capabilities might be
would be helpful instead of negative words,
(garble), differently abled, or something like this.
I mean, I have artificial feet,
most people have flesh and bone feet.
I'm different from the norm.
So just say that I'm different,
don't apply a judgment that I'm somehow broken,
or weak, or something.
-: And I always pick that up when it comes
to talking about my leg.
It's always interesting to me to see how people will stumble
and fumble over what to call it.
Well, it has never stopped being my leg.
It has been my leg from the beginning of my body
being formed, because I'm missing part of it,
it didn't become a different entity.
So when people ask me,
do you call it a stump or a residual limb?
And I just simply say, no, it's my leg.
I am who I have always been.
I haven't changed.
-: I have a question in the chat.
This is from Christopher Shalal in the biomed group.
I have a question about perception and cosmetics.
When I was younger with my amputation,
I tried very hard to make my legs look
as humanlike as possible, which garnered
weird perceptions, comments from people.
But nowadays, as I show the bare prosthesis,
that perception has changed to it looking cool.
What do you think about this perception shift?
What do you think about the cosmetic
embodiment aspect of a prosthesis?
-: That's great.
Having lived as a person with two legs
for more than half of my life and then losing them,
I didn't think about doing cosmetic.
Had I been born congenitally with limb difference,
at the time that I was born,
it likely would've been how my prosthetics were fashioned.
But the thought that comes to my mind now
is that if I, and again, this is just if it were me
because millions of people choose cosmetic
and that's completely appropriate,
but if I were to choose cosmetic,
I would think that I was playing a second best,
trying to be something that I no longer was.
And I try not to go backwards in my life
to recapture what was,
I always try to move forward and be fully who I am.
So for me, cosmetic just was not the way
that I was gonna go.
I don't know if that makes sense.
And I think, again, that is something that each person
really has to come to understand,
but I wonder too sometimes if that doesn't go back
to education and perception.
Is it okay?
I remember coming out of surgery and having family members
in my hospital room.
And my very first question was, are you okay?
Are you okay with my limb loss?
And I think that's something that those of us
who have limb difference or limb loss look at,
initially at least, until we become
confident in ourselves again.
And then it only matters really how we perceive ourselves
because that's how we project ourselves.
Did that come close?
I guess I would put the question back to you.
What are your thoughts?
-: You could unmute, Chris.
He's in a conference room, he thinks there'll be feedback.
-: Oh, wait, can you hear me?
-: Yeah, it's not bad, terribly.
-: Okay, yeah, sorry, I moved rooms,
so I thought it'd reverberate, but okay, cool.
Oh, it is? -: It is a little bit.
-: Oh, okay.
-: It's not that bad.
-: Bye, Chris (laughs).
-: Hey, is this better?
-: Yes, yeah.
-: Okay, great.
Yeah, I was, well, I guess I am a congenital amputee.
So my view is that it was really hard as a kid
growing up to kind of fit in.
'Cause you know, when I would just wear the prosthesis
without any cosmetics, I would get a lot of bullying
and weird comments and it was really hard.
But then when I would cover up the prosthesis
with, like we had, my prosthetist had this
foamlike padding that was tan, like skin colorish
that would cover the prosthesis.
And I just noticed that it was a lot easier
to go through school with that sort of cosmetic.
So I actually had a lot of cosmetic prosthesis
back when I was going through school.
But I think nowadays it's a lot better.
I think kids are just kind of blunt
and not really forgiving, but yeah, I really think that now
I'm very comfortable with showing my prosthesis
and not trying to hide anything.
I think there was an aspect of hiding that I had
an amputation when I was a kid.
I would also wear pants a lot.
Pants as a person with an amputation is really hard to wear.
It's really annoying too sometimes.
I think nowadays it's more, I guess,
I don't have to worry about the cosmetics as much,
but I don't know if that's just society
and people's perception changing or if that was
me growing up to being an adult and people are
just more understanding and aware.
So yeah, that's kind of my view.
-: Or maybe a combination of both, right?
-: Yes, yes.
-: I taught second grade and I had a wonderful pair
of running blades because when you teach eight-year-olds,
you had better be able to keep up with them, right.
They wait for no one.
And I remember sitting and reading out loud after lunch,
you may remember that wonderful experience
with your teacher, and I remember one little boy
would always come and sit right next to my feet
and he would trace the C-curve of my blade
and he'd tap on it, and he'd say, can you feel it?
And I'd say, yeah, and he'd say, but it's not your foot.
And I'd say, no, but I can feel the vibrations.
And I think of the learning that went on
in the lives of those eight-year-olds, right.
And how they would notice that if I came in new feet,
they'd notice instantly that I had new feet
or new sockets, you know.
So I think that our world has become
a much more welcoming environment.
Not all of it's, it's becoming that.
And that's why I think carpe diem, is our time
to see us and to change.
We are becoming so much more aware of the human situation
when it comes to race and gender,
why not this issue, as well?
-: Thank you so much.
-: Oh, books, oh goodness, yes.
Yes, there are great books.
Hillary Sussman has a couple of books,
Leslie Pitt Schneider,
there's a book called "Emmanuel's Dream" about a young man
who was born, I think he was missing his foot,
and he bicycled across his country in Africa.
So there are a number of different folks out there.
"Lola's Superpower" by Leslie Pitt Schneider.
Hillary Sussman has two dogs that are the main characters
and they go through.
And then "Emmanuel's Dream" and there are others,
but those are some that I use regularly.
And the question was,
are there books that can be used with children?
And I always think about children's books that we read,
and I always encouraged my students,
regardless of how old they got,
always swing by the children's section in a bookstore
because there's wisdom in those books.
They may be children's books,
but they're not childish in the messages that they deliver.
So sometimes it's the children's book that reaches the heart
of the adult, which is why we like story time so much.
We wanna go back and recapture those beliefs.
-: Thank you so much, Leslie.
And I'm really happy that we were able to be a platform
for you to discuss this.
And hopefully it'll get shared,
and it will be on social media,
and we'll let everybody know once it's posted,
this was recorded, so we will be sharing that.
This is a very good discussion afterwards, too.
Thank you. -: It's been wonderful.
So thank you, Lindsay,
thank you for reading the email and just taking a chance
on that one that came through.
And Hugh, thank you for the conversation.
I'm looking forward to-- -: Thank you so much, Leslie.
-: Thank you, Leslie.
Thank you everybody.
Have a wonderful day, bye bye.