Turning Pain, Into Purpose: The Documentary
Summary
TLDRAvery, a former college athlete, recounts her journey after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a rare disease causing blindness and paralysis. Initially in denial, she clung to the hope of running again, embodying the 'runner's spirit' to overcome obstacles. After a month in the hospital and undergoing plasmapheresis, Avery took her first steps, determined to walk and eventually run. She turned to creating hope bracelets for fellow rare disease patients and shared her story online, finding a community and purpose. Avery's narrative is one of resilience, hope, and the transformation of pain into purpose.
Takeaways
- 🏃♀️ The individual's identity was deeply tied to their athletic abilities, particularly running, which was a significant part of their personality and self-concept.
- 🏥 A sudden and severe health crisis led to the diagnosis of a rare disease, neuromyelitis optica spectrum disorder (NMOSD), which brought about a profound shift in their life.
- 🚫 The diagnosis meant that running, a core aspect of their identity, was no longer possible, leading to a period of denial and a deep sense of loss.
- 🔍 Despite the challenges, the individual held onto hope and the spirit of a runner, which propelled them to push through mental and physical obstacles.
- 🏥 The healthcare journey was marked by extensive testing and uncertainty, with doctors initially unsure of the cause of the symptoms.
- 🏥 A pivotal moment came when a student doctor recognized the symptoms and sought advice from a specialist, leading to the correct diagnosis.
- 💉 The treatment involved a process called plasmapheresis, which helped filter out harmful antibodies and was crucial in the recovery process.
- 🌟 The individual's determination to walk and eventually run again was a testament to their resilience and the support they received from healthcare professionals.
- 🤝 The experience inspired them to give back by creating hope bracelets for other rare disease patients and sharing their story to raise awareness.
- 🌐 The individual's online presence and advocacy work aim to connect with and support others facing similar challenges, turning personal pain into a purpose.
Q & A
What was the initial impact of the diagnosis on Avery's identity and self-perception?
-Avery's identity was deeply tied to being a runner, and the diagnosis threatened to take that away, leading to feelings of denial and a sense of losing a significant part of herself.
How did Avery cope with the denial and the reality of her diagnosis?
-Avery held onto the hope of running again, which helped her to keep going. She also drew strength from the 'runner spirit,' pushing past mental and physical obstacles.
What was the turning point for Avery during her vacation in July 2017?
-The turning point was when Avery started experiencing severe pain in the back of her eye, which progressively worsened, affecting her vision and eventually leading to a hospital visit.
What was the initial response from the ER staff when Avery first presented with symptoms?
-The ER staff initially thought it might be a mental health issue or attributed it to emotional stress, as they did not see any visible symptoms.
How did Avery's symptoms progress while in the ER, and what was the immediate concern?
-Avery's symptoms rapidly progressed to include blindness and paralysis. The immediate concern was identifying the cause of these severe symptoms.
What was the diagnosis that Avery received after extensive testing?
-Avery was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disease that can cause blindness and paralysis.
How did Avery's life change after being told that running might not be possible for her?
-Avery had to reevaluate her identity and future without running, leading to a period of mourning and a search for a new sense of self and purpose.
What treatment did Avery undergo to help manage her NMOSD?
-Avery underwent a process called plasmapheresis, where her blood was filtered to remove harmful antibodies causing her symptoms.
How did Avery find a new purpose after her diagnosis?
-Avery began making 'hope bracelets' to send to other rare disease patients worldwide and started sharing her story online to connect with and support others in similar situations.
What was the significance of Avery's decision to try running again despite her diagnosis?
-Running again symbolized Avery regaining control and demonstrating that she could still engage in activities she loved, even if at a different level or in a modified way.
What is Avery's vision for the future in terms of supporting others with rare diseases?
-Avery envisions expanding support for rare disease patients nationally and globally, helping them overcome loneliness and continue pursuing their passions despite their conditions.
Outlines
🏃♀️ Loss of Identity and Denial
The speaker, an athlete, recounts the shock and disbelief upon learning that running, a core part of their identity, would no longer be possible due to a medical condition. They describe the emotional turmoil of losing their athletic self and the struggle to accept their diagnosis. Despite being in denial, they held onto hope of running again, which helped them persevere. They liken their situation to a different kind of race, emphasizing the mental fortitude required to overcome obstacles, both physical and mental.
🏥 Medical Crisis and Diagnosis
The narrative shifts to a sudden onset of severe pain and vision problems during a vacation, leading to a hospital visit. Initially, the symptoms are dismissed as stress or exhaustion, but the situation escalates rapidly, with the speaker becoming almost completely blind and paralyzed within hours. The healthcare system's struggle to diagnose the condition is highlighted, culminating in a correct diagnosis of neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disease, thanks to a perceptive student doctor.
💉 Treatment and Adaptation
After the diagnosis, the speaker undergoes an intensive treatment called plasmapheresis to remove harmful antibodies. They describe the physical and emotional challenges of recovery, including the loss of independence and the need to relearn basic functions like walking. Despite the setback, they remain determined to regain their ability to run. The speaker also starts making 'hope bracelets' to support other rare disease patients, turning their personal struggle into a means of giving back to the community.
🌟 Finding Purpose and Empowerment
The speaker shares their journey of rediscovering their passion for running and the importance of a supportive healthcare system that understands the patient's perspective. They emphasize the need for a positive and understanding approach from medical professionals. The narrative concludes with the speaker's successful attempt to run again, symbolizing their regained sense of control and identity. They express optimism about the future, envisioning a broader support network for rare disease patients and the transformation of personal pain into a purposeful mission.
Mindmap
Keywords
💡Runner's Spirit
💡Denial
💡Diagnosis
💡Neuromyelitis Optica Spectrum Disorder (NMOSD)
💡Blindness
💡Paralysis
💡Plasmapheresis
💡Support System
💡Rare Disease
💡Adaptation
💡Purpose
Highlights
The individual's identity was deeply tied to their athleticism, particularly running, which was a significant part of their personality.
The initial denial and struggle to accept a diagnosis that would end their running career.
The importance of the 'runner's spirit' in pushing through mental and physical obstacles, even after athletic competition was no longer possible.
The transition from being an active athlete to discovering a new identity without running.
The sudden onset of severe pain and vision problems during a vacation, marking the beginning of a health crisis.
The rapid progression of symptoms, leading to near blindness and paralysis within hours.
The experience of being misdiagnosed and dismissed by medical professionals, highlighting the challenges faced by those with rare diseases.
The critical role of a student doctor who recognized the symptoms and sought expert advice, leading to a correct diagnosis.
The diagnosis of neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disease, and its life-changing implications.
The emotional turmoil of accepting a lifelong chronic condition with no cure and the loss of the ability to run.
The physical and mental recovery process, including the use of plasmapheresis to filter out harmful antibodies.
The determination to walk and eventually run again, despite the challenges posed by the disease.
The creation of 'hope bracelets' as a means of giving back and connecting with other rare disease patients worldwide.
The decision to share her story online, offering support and raising awareness about living with a rare disease.
The importance of patient-centered language and support in healthcare, especially for those with chronic conditions.
The personal journey of regaining control and finding a new purpose after a life-altering diagnosis.
The vision for the future of support and advocacy for rare disease patients, turning pain into a purpose.
Transcripts
[Music]
running for me was a personality it was
who I was so when they told me that that
wasn't going to be a part of my life
anymore a large part of me didn't really
believe it and another large part of me
just it felt like a piece of me had just
died and this person this athletic being
that I was that was so active wasn't
coming back and that's what these
doctors were telling me and I didn't
really want to believe it I was in
denial of my diagnosis for a long
time but holding on to the fact that one
day that I could run again I think is
what kind of kept me going um I like to
blame it a lot on kind of the runner
spirit and when you're a runner you have
to push past through certain obstacles
and and mental OB obstacles to to run
and I feel like that was kind of what I
was doing I wasn't necessarily competing
in track and field anymore but I like to
say I was running A different race now
and um running and the physicality
portion of it beside I had to now figure
out who I was without running and who I
wanted to be and where I was going to go
cuz it felt like somebody just told me
my future was was gone and that I wasn't
going to be amount to anything
[Music]
really I was um a college athlete at the
time I had just finished my freshman
year um running and I had a lot of
potential I had a lot of room to grow
and that summer I started cutting down
my times um I eventually planned on on
going D1 hopefully with the dream of of
going pro after that um and I was
starting to see a lot of a lot of really
good progress there was some minor
things in my body I know that started to
kind of change um I got a lot of pain
out of nowhere and it was kind of just
generalized pain I equated it to working
out two and three times a day and kind
of just me being overly tired and in
July of 2017 I decided to take a v
vacation with my one of my best friends
at the time and it was on that trip when
everything kind of started to
drastically change I started to kind of
get this really weird pain in the back
of my eye and at first it wasn't
something that was like prohibiting me
from having fun on that trip but it was
definitely something that was getting
progressively worse with each day that I
was there and the pain grew worse and
worse and
um my friend decided to leave um a day
sooner than I did and so I was kind of
stuck in California by myself and my
vision started to become blurry by the
time we landed the pain in the back of
my eyes grew so exponentially like it
got so bad when my mom picked me up she
I remember she looked at me and she just
said you don't you don't look good I was
like I I don't feel right something
doesn't feel right she was kind of
thinking that there was a migraine but
there was a thought in the in the back
of her head that maybe it was something
worse but being hopeful we just thought
it was just something else I remember
there was one night in particular um
everybody wanted to go clubbing and
everybody was um getting ready and then
I just remember the feeling that was in
the back of my eye came back but it had
gotten so bad to the point where I
couldn't get up I couldn't open my eyes
I couldn't do anything anything so one
of my friends at the time she kind of
saw me and she knew something was off so
she was like maybe it might be a good
idea if we go to the ER and kind of just
see what it is just make sure it's not
anything
serious when we got to the ER they of
course they see a young person coming in
with no visible symptoms um they like to
think it's either like a mental health
issue or um they like to blame it on on
women's poon a lot um that's something
that I've heard a lot is they thought it
was just you know me being a young
girl with emotions and I was like no
like my vision is getting blurry the
pain in my back the back of my eyes is
progressing and now by the time I was
admitted into the ER it started to
progress over to the right side as well
so it wasn't just on the left it was on
the left and the right with blurriness
in the right
eye as I'm in the ER the pain had sped
up like twice the speed so like it just
feels like I just feel really super weak
feel really atrophied um they saw that
my white cell count was a little bit
abnormal and I have friends and family
telling me like it's it's in your head I
think you're just overly
exhausted even my mom kind of was just
like all right you're just being angry
um but then I woke up the following day
and I couldn't move my right arm I just
remember feeling a lot of really burning
like a big burning
sensation I tried to go to the bathroom
I get up and I Stumble and fall and I
wasn't a I I get on the toilet and I
wasn't able to urinate or anything
nothing was coming out and it just felt
like the worst burning sensation you
could ever
feel I tried to take a nap tried to go
lay back down and see if anything would
help um I think I fell asleep for about
30 minutes I wake up I'm not able to
move my right arm at all and I have pins
and needles in my right leg I have a
burning sensation in my left leg and
this arm felt like it was dipped in like
ice cold water and then this one is just
burning hot so there was just so many
different Sensations going on in my body
and it was just kind of
just I didn't really I was scared I
didn't know what was going on and that's
kind of when when I hollered for my mom
and she saw that something was visibly
wrong um she helped carry me to the car
and then that's when my rare disease
Journey kind of
[Music]
started it was a long process of tests
blood work Imaging um and by the time
that they had finally kind of figured
out something was going wrong I was
almost completely blinded and almost
completely paralyzed so it happened
within
probably 2 hours I think I I went from
being able to see a little bit out of my
right eye to no sight and not being able
to move at that point I'm a par poic so
it was really scary looking at healthc
care people and Specialists and people
that go to school
for healthcare and have them look at you
and say we have no idea what's wrong
with you my mom is you know going
through it I'm watching her kind of go
like Spiral and and she's saying is it's
like you know is this something that I
did wrong like was it was like when did
this happen how did we not know if she
had anything wrong with
her and I'm really grateful for this
doctor that I think definitely saved my
life he was um a student doctor at the
time and he had seen uh a case study of
somebody that had exhibited my same
symptoms and he said this is a long shot
but I'm going to go reach out to one of
the doctors I used to study under and
see if it's possible that you have this
um and he said a really long name and he
said um I don't I didn't even remember
what it was at the time and on August
9th of
2017 I woke up and it was kind of a
different feeling waking up in the
hospital that day um I felt kind of a a
shift in the in in the energy of the
doctors and I remember there was 13
doctors that gathered outside my room
and my mom and I are kind of looking to
see what's going on she steps out of the
room and when she comes back she's in
shambles like we don't I like I didn't
know what was going on with her I was
like are you okay and she had over her
the doctors kind of throwing out some
options of what they thought it was and
they thought it was either between lupus
or this other autoimmune disease that
this doctor had
studied um on August 9th um at 10:00 on
a DOT 13 doctors walked in and
surrounded my bed and there was one
Doctor Who kind of took the lead um as
far as
talking he said he had reached out to
The Specialist and um they were going to
do one more test to make sure that this
was indeed what it was that I had
that test was expedited um we received
it back and it was confirmed that I had
a disease called neurom militis Optica
spectrum
[Music]
disorder and they're telling me this is
a lifelong chronic condition that has no
cure um it comes with
intermittent spurts of blindness and
paralysis and I'm just kind of sitting
here like okay like I don't really care
about any of this when can I run again
she looked at me and she
said um unfortunately with this dis with
the progression of this disease and with
the progression and the rate that yours
is going at running is not in the card
cards for you right
now
[Music]
right and that's the other thing is the
mental aspect that plays a portion as
well as the physical aspect so you can't
control what's going on in your body and
then you go through these waves of um
kind of mourning honestly um not being
able to be that person that you once
[Music]
were so I was in the hospital for a
month and I think I took my first steps
um like I said I was really lucky in the
area and the specialist that I have they
administered um a process called plasma
FIS and that's basically where they put
a port in your neck and it connects to
the jugular vein that goes to your heart
and they filter out all of the bad
antibodies making me sick and making my
immune system kind of turn on you um it
kind of filters all that out so I got
that and we went
through five rounds of that before I
finally was like okay I want to try
walking
without five people standing next to me
I want you know kind of just my nurse
and me and see if I could do it um so
about 3 weeks after all of that is kind
of when I was like all right I want to I
want to see if I can walk again but the
time period of not being able to walk
and having to ask my mom to help me go
to the bathroom at 19 years old was it
was really hard
but once I finally took those first
steps I just knew that my story wasn't
going to end with me being in a
wheelchair I was determined to walk
again and to eventually run
again it was pretty soon after that I
kind of wanted to give my time back
because I wasn't going to school I
didn't have a job didn't have friends to
talk to so I was like what can I do to
kind of fill this time up so the first
thing that I started doing was I started
making um hope bracelets so it was um
literally bracelets that said hope and I
would send them to rare disease patients
all over the world it was kind of
um a full circle moment because um I'll
be honest with you for a long time I
didn't think that I was going to live
long I thought this disease was going to
be something that took my life so when I
was actually to a point where I could
volunteer my time and make bracelets and
go visit the hospitals that saved my
life it was more so an honor um more so
than in something that I felt indebted
to do so after I was diagnosed I had met
somebody that was that also had a rare
disease and she shared her story online
hey guys um remember me yeah Talia
beauty goo girl yeah um well today I'm
going to be doing a cancer Vlog just
Vlog update type video I've been in the
hospital for the past 4 weeks so I was
like that that seemed something that was
so nerve-wracking is kind of exposing
who you are to the world now is a bone
marrow transplant and that is going to
be one of the toughest things I'm going
to have to do ever because I've done
stem cell I've done surgery I'm going to
show you guys my Scot right now so
hopefully you can see
it it goes from here to
[Music]
here but she encouraged me to make that
first post and um when I made my first
post I kind of introduced myself as you
know my name is Avery and I was just
recently diagnosed with this disease
called
nmosd and I just started sharing my
journey kind of unfathomable for people
to believe I was in the condition that I
was and with being an athlete you're
always kind of expected to bounce right
back from injuries and to kind of have
that don't tell anyone about your pain
unless like you're dying kind of
situation and I remember many therapists
and doctors and nurses would walk into
the room this is me Fresh Off paralysis
and they'd be like oh are you running
yet and I think it took the one doctor
to ask okay how are we going to get you
to run that I think really made a
difference for me and it kind of made me
not feel forced like I had to quickly
recover from you know such an attack and
I think adding more of that into our
healthare and having doctors use
language that is more fitting for the
patient and not kind of not bringing
them down in a sense but not making them
feel like they have to be at a certain
point after their attack and
the love and support that I got was
something that I couldn't find you know
in in everyday life and it t like like I
said it takes a special person to
understand what people with rare disease
go through um but I don't think anybody
can really understand it like rare
disease patients themselves years of of
sitting and kind of having that thought
of what the doctor first told me when
she said Renning wasn't in the cards for
me that's something that always stuck
with me so one day when I just decided I
was bored and lonely and felt like I
needed to do something with my time I
said hey I'm feeling pretty okay today
let's take a shot at running again and I
originally had only intended on running
up the hill and that run that I went on
ended up being at least a mile long so I
knew that at that point okay this is
something I'm capable of and it not only
felt good but it felt like there's Avery
again it felt like okay even though I
had to take a break from it and I may
not be competing or running at the level
that I want to it can still be something
that's a part of my life and I don't
have to give it up did you feel you got
control back I feel like I got all the
control back even though I still can't
control my disease
I know that what I can control is the
mindset on the bad days and on the good
days is pushing past that mindset of not
being able to do
it and then what's the
future I see the future being really
bright for couch pennies I
see us expanding nationally globally and
not just helping people come out of the
loneliness in the dark that is having a
rare disease but supporting them and
making them feel like that they too
don't have to give up the things that
they love but instead turn it into
something that you're passionate about
and turn your pain into a
[Music]
purpose
[Music]
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