Turning Pain, Into Purpose: The Documentary

Summary

Avery, 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

00:00

🏃‍♀️ 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.

05:00

🏥 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.

10:02

💉 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.

15:05

🌟 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.

Keywords

💡Runner's Spirit

The 'runner's spirit' refers to the mental toughness and determination that runners develop to push through physical and mental challenges. In the video, the narrator describes how this spirit helped them to cope with their diagnosis and the loss of their ability to run. It's a metaphor for resilience and the will to overcome obstacles, which is central to the narrator's journey of dealing with a rare disease.

💡Denial

Denial is a psychological defense mechanism where a person refuses to accept reality or a distressing truth. In the context of the video, the narrator was in denial about their diagnosis for a long time, not wanting to believe that they could no longer run. This keyword is pivotal as it illustrates the initial struggle the narrator faced in accepting their new reality.

💡Diagnosis

A 'diagnosis' is the identification of a disease or illness through examination and assessment. The video script describes the narrator's struggle with accepting their diagnosis of a rare disease, which drastically changed their life. The diagnosis is a critical turning point in the narrative, marking the beginning of the narrator's journey with their condition.

💡Neuromyelitis Optica Spectrum Disorder (NMOSD)

NMOSD is a rare autoimmune disease that affects the optic nerves, spinal cord, and brain. The narrator was diagnosed with this disease, which led to episodes of blindness and paralysis. This keyword is essential as it defines the specific medical condition that the video revolves around and shapes the narrator's experiences and challenges.

💡Blindness

Blindness refers to the loss of the ability to see. In the video, the narrator experiences intermittent blindness due to NMOSD, which is a significant challenge they face. This keyword is central to understanding the physical limitations and the emotional impact of the disease on the narrator's life.

💡Paralysis

Paralysis is the loss of muscle function in part of the body. The narrator describes being almost completely paralyzed due to their disease, which is a severe consequence of NMOSD. This keyword highlights the physical struggles and the fear associated with the progression of the disease.

💡Plasmapheresis

Plasmapheresis is a medical procedure used to remove harmful antibodies from the blood. The narrator underwent this treatment to manage their NMOSD. This keyword is important as it represents a critical part of the narrator's treatment journey and their efforts to regain control over their health.

💡Support System

A 'support system' consists of friends, family, and others who provide emotional and practical help during challenging times. The narrator mentions the importance of their support system, particularly their mother, in helping them through their disease journey. This keyword underscores the role of social connections in coping with illness.

💡Rare Disease

A 'rare disease' is a medical condition that affects a small percentage of the population. The video's theme revolves around living with a rare disease, and the narrator's experience with NMOSD is a prime example. This keyword is central to the video's message about the unique challenges and the need for understanding and support for those with rare diseases.

💡Adaptation

Adaptation refers to the process of adjusting to new conditions or changes. The narrator had to adapt to life with a rare disease, including learning to live without running, which was a significant part of their identity. This keyword is crucial as it reflects the personal growth and resilience demonstrated by the narrator in the face of adversity.

💡Purpose

Purpose signifies a reason for which something is done or created, or for which something exists. The narrator found a new purpose in advocating for rare disease awareness and supporting others with similar conditions. This keyword encapsulates the transformational aspect of the narrator's journey, turning their personal struggle into a mission to help others.

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]