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  • Life is going to challenge you at some point,

  • it's going to hand you something unfair, it's going to take something from you,

  • it's going to interfere with your plans.

  • When this happens, you have a few choices:

  • deny, cope, or thrive.

  • I'm here today to tell you my story, or at least, my story so far.

  • I was 25 years old, a neurological intensive care nurse

  • and enrolled in an extremely competitive graduate program

  • where I was studying how to be a nurse anesthetist,

  • that's people who give anesthesia in the operating room.

  • The program accepts fewer than 25 people per year,

  • and I had worked really hard in order to earn my spot.

  • To top it all off, this is what I did in my downtime in order to relax.

  • (Laughter)

  • One day while I was working out

  • my right foot fell asleep, and it never woke back up.

  • Then, over the next week,

  • the numbness that started in my foot, began to spread up both of my legs.

  • I brushed it off

  • hoping that it was just a sports injury.

  • Maybe I had pinched a nerve while weightlifting.

  • And I knew it was anything more serious than that,

  • I was not prepared to face it just yet.

  • The truth was that I saw the devastating effects

  • of neurological disease every day at work,

  • and I refused to see myself as anything but young and invincible

  • so I swept it under the rug,

  • and I kept going at the breakneck pace that I was so accustomed to.

  • And then, before I knew it, the big day came.

  • I was finally giving anesthesia for the first time as a student.

  • I had spent months cooped up in a classroom,

  • I could not wait to put my new skills to the test.

  • I didn't know it at the time, but everything would change that day.

  • In the locker room at the hospital

  • I fumbled trying to get my completely numb legs

  • into my surgical scrubs.

  • And as I tightened the drawstring of my pants,

  • I realized I had no feeling from the waist down,

  • but still, I pressed on.

  • The students were expected to arrive at the hospital early

  • and prepare the equipment before the day officially began at 7 am.

  • It was still hours

  • before the sun would come up and patients would start to arrive,

  • so I had the serene, sterile operating room all to myself,

  • but inside, things were getting a lot worse for me:

  • I lost the feeling in my right arm,

  • the ability to move my right hand,

  • my vision became nothing but a blur of bright fluorescent lights.

  • It's then, at that point, unable to see straight,

  • use my dominant hand or feel three quarters of my body

  • that even I had to admit that something was very wrong.

  • I somehow made my way back to the locker room,

  • and I called my teacher.

  • She told me to go to the emergency room immediately

  • which was only a few floors below my feet,

  • but I couldn't even make it to the elevator.

  • "Stay there" she told me,

  • "I'm only a couple of minutes away, I'm coming to get you."

  • So I sat, and I waited.

  • And as I did, I looked down at my very first pair of surgical scrubs,

  • which to me represented the first step towards a career I had worked so hard for.

  • And I tried to convince myself that this is just me

  • caving under the pressure of a really important day.

  • But in my heart I knew,

  • I knew there was something much, much more ominous than that.

  • I walked into the hospital that morning as a provider,

  • but I didn't walk back out for over a week.

  • When I did, I left as a patient.

  • My hospital admission was full of spinal taps, and MRI scans,

  • IV infusions, and painful tests.

  • When the results came back it was official:

  • I was one of 2.3 million people worldwide

  • living with multiple sclerosis.

  • There's no cure for MS,

  • in fact, we don't even really know what causes it.

  • There're treatments for some types of MS

  • but they don't reverse damage that has already been done,

  • they're not guaranteed to work,

  • and they come along with some serious, sometimes even deadly, side effects.

  • It's the most common neurological disease in young people,

  • most often striking in one's 20s or 30s

  • when most of us are in the primes of our lives.

  • Like a lot of 25 year olds, I was busy finishing school and starting my career,

  • planning my wedding.

  • MS was not part of my 5-year plan.

  • It's an autoimmune disease of the brain and the spinal cord.

  • Normally, our immune system functions keep us alive,

  • but in the human body, the line between healthy and sick

  • is often perilously thin.

  • The same life sustaining immune system can turn against us

  • and the results are disastrous.

  • For reasons not wholly understood, in people who have MS,

  • the immune system begins to attack our nerves.

  • Nerves link the brain and the spinal cord to the rest of the body, allowing them

  • them to communicate back and forth via electrical and chemical signals.

  • Much like this wire that needs insulation in order to conduct electricity,

  • a nerve needs insulation in order to conduct its signals.

  • In the human body this insulation is called myelin.

  • Now, picture this wire as the cable that goes to a television.

  • If it were to be damaged, or cut, your nice HD picture would go away.

  • Well, MS is sort of the same situation.

  • Immune cells target and destroy the myelin insulation around nerves,

  • leaving the inner wiring of the nerve exposed.

  • Some signals make it through,

  • but overall, the nerve is frayed and unreliable.

  • Over time, scar tissue forms around these damaged nerves,

  • creating permanent lesions that we can actually see on MRI scans.

  • Now, a damaged TV cable might give you static,

  • but because nerves control every movement

  • and process all sensory information in the body

  • a damaged nerve can cause a huge variety of problems.

  • Symptoms can range from mild, such as numbness and tingling,

  • to disastrous: paralysis, loss of vision.

  • There's no way to know

  • where in the brain or the spinal cord MS is going to attack

  • and no two people with MS are alike

  • making it the sort of the whack-a-mole of diseases.

  • A lesion could pop up in the speech center of your brain causing you to talk funny.

  • One could jump up in your spinal cord

  • and cause paralysis and numbness in your legs.

  • In addition to the variety of symptoms, there're also a few different types of MS.

  • In the type that I have, relapsing remitting,

  • there're periods of sudden attacks

  • where new lesions form and new symptoms occur,

  • followed by periods of relative dormancy or remission,

  • hence relapsing-remitting.

  • This is the most common form of MS,

  • and the only type that's somewhat treatable.

  • In other forms, progressive forms,

  • disease and disability accumulate in a linear fashion,

  • and at this time there're no treatments, no medications on the market

  • that effectively slow it down.

  • Furthermore, patients like me who have relapsin-gremitting MS

  • can transition into progressive MS at any time,

  • at which point, our treatment options are pretty limited.

  • Now, I know what you're thinking, all things considered,

  • you look pretty good, and I do

  • (Laughter)

  • but that's only because of the hundreds of injections I've given myself,

  • the thousands of pills that I've swallowed,

  • and the monthly IV infusions that I get which depress my immune system,

  • keep my symptoms somewhat controlled,

  • and hopefully, work to keep my relapses to a minimum.

  • I'm not having a relapse right now

  • but the MS version of remission is different than you might think.

  • Relapses can leave us permanently worse for the wear.

  • Recovery from a relapse is not guaranteed

  • and there's no way to know with certainty

  • whether a loss of function is permanent or not.

  • Even in remission, we struggle with this disease

  • and the after effects of relapses every single day.

  • I also look so good because a lot of the symptoms of MS are invisible.

  • I don't look sick,

  • but I have over a dozen lesions in my spine and my brain.

  • I don't look sick, but my legs go numb

  • whenever I walk a short distance or face the stage of a TEDx conference.

  • I don't look sick, but I take antiseizure medication

  • to deal with the overwhelming nerve pain left over from a prior relapse.

  • I don't look sick, but I have a cane in my closet

  • that I pull out at days that I can't walk on my own.

  • I'm getting married in May, and I have to have a contingency plan

  • for if I can't walk myself down the aisle.

  • A week after this photo of me hiking was taken,

  • my right leg became virtually paralyzed,

  • and I needed a cane and a wheelchair just to get around.

  • And that's really the most frustrating part of this disease:

  • I never know what's around the corner.

  • I don't know if tomorrow is going to be a good day or a bad one.

  • I don't know when the next relapse is coming

  • or what it's going to do to me.

  • I could be hiking up mountains one day,

  • but unable to walk across the room the next.

  • The second time that I was admitted to the hospital for a relapse,

  • a young nursing student was assigned to me.

  • She confessed she didn't really love neurology.

  • She wasn't particularly good at it

  • which I accepted as a personal challenge because neurology is my passion.

  • I taught her how to do a thorough neuroassessment

  • using my own broken body as exhibit A.

  • "Note the absence of deep tendon reflexes", I exclaimed

  • as she unsuccessfully taped on my knees with the reflex hammer.

  • That's because of my spinal lesions.

  • I taught her how to memorize cranial nerves,

  • and when she came back the next day she had that look in her eye.

  • It was the look of a student who finally understood a concept,

  • that they never thought they would,

  • and it felt really great to have played a part in that.

  • And that nursing student planted a seed in me that would begin to sprout very soon

  • but later, after I left the hospital,

  • I was reading one of the notes my doctor had written about me.

  • It said, "Advise patient to pursue new career options."

  • Prognosis, "Poor".

  • And that was when I realized something:

  • because I was diagnosed so young

  • chances were good that I would live with this disease for more years

  • than I ever even knew what it was like to live without it.

  • It was up to me, and me alone, to set the tone for those years.

  • I didn't want to be a victim for the rest of my life.

  • I saw no good reasons to give up on my ambitions so I took charge.

  • I decided not to take a leave of absence from school,

  • and I read every neurology textbook that I could get my hands on

  • making myself a virtual expert in the pathophysiology of MS.

  • Then I decided to put my knowledge to use

  • in the best way a graduate student knows how: by taking an exam.

  • And that's how I became a board-certified MS nurse

  • just six months after being diagnosed with MS myself.

  • I initially took that test as an act of defiance, to prove to myself

  • that I could get more out of this disease, than it could ever take from me.

  • I was still really focused on my anesthesia career,

  • and I didn't know if I would ever put it to use,

  • but it was really gratifying to hang up that certificate on the wall,

  • and add a few more letters after my name.

  • But not long after that, my neurologist called me.

  • She needed a temporary staff nurse and wanted to know if I'd be interested.

  • I took the job, and I loved it.

  • I found that I could use my personal experience,

  • combine it with my professional expertise,

  • and use that to have a positive impact on the lives of others.

  • But now I had a tough decision to make: stay in the anesthesia program,

  • that I'd worked so hard for in the first place,

  • cope with my MS, trying not to let it change me too much,

  • or do the scary thing:

  • blaze a new career path for myself and see where it takes me.

  • I decided to change my focus to become a nurse practitioner,

  • and I hope to continue working with people who have MS

  • for as long as possible.

  • Being an MS nurse has taught me so many valuable things.

  • One of the first things I learned

  • is that everybody has the same questions I had when I was first diagnosed,

  • "What's next?" "Am I going to die from this?"

  • "Am I going to end up in a wheelchair?" "Can I still have children?"

  • It's a lot to take in.

  • So I decided to start a website,

  • and I used those questions as my launching point.

  • The unfortunate reality of our current healthcare system

  • is that not every provider has the time that it takes

  • to teach every patient everything there is to know one-on-one.

  • And a lot of people don't even have access to the specialist

  • who can give them that information in the first place.

  • I wanted my site to be a resource for those people.

  • I wanted them to walk away having learnt something new and being more capable

  • of being an active participant in their own care.

  • And I suddenly had people from around the world writing to me

  • saying they're actually moved to tears

  • because they have lived with this disease for decades,

  • but this was the first time

  • that they understood what was going on with their own bodies.

  • Can you imagine what that would be like?

  • Living with a chronic incurable disease

  • that slowly took away pieces of your mind and your body,

  • and you didn't even understand what was going on?

  • I'm not offering a cure, but I'm empowering people,

  • and that can go a surprisingly long way.

  • After starting my own site I also began writing

  • for several other publications and websites,

  • working hard to spread awareness in every way that I can.

  • My mission is to educate, empower, and help work towards a day

  • when a young, invincible 25 year old can hear the words,

  • "You have MS, but don't be afraid; there's a cure."

  • In order to achieve this,

  • I've taken an active role in research in every way that I can,

  • from participating in clinical studies

  • to further our understanding of this disease,

  • to meeting with US representatives on Capitol Hill

  • to discuss legislation and funding for groundbreaking research efforts,

  • to even playing a small part in a pioneering new research initiative

  • that's the first of its kind for MS.

  • This initiative is putting the power into the hands of people

  • who live with this disease every day.

  • They can donate their health data, biosamples,

  • and they even get to decide what research initiatives take priority.

  • Clinical research is underfunded, time consuming, and expensive.

  • We're hoping that by crowdsourcing a huge data bank

  • that researchers can tap into,

  • we can maybe point out trends that we didn't know existed.

  • Cut the amount of time and money that it takes to run a study.

  • Who knows? Maybe even get us towards a cure faster.

  • My diagnosis was not the end

  • of my youth, my ambition, or my drive.

  • In fact it was pretty much the opposite.

  • MS has made me a better nurse, a better person,

  • and it's given me a more purposeful life.

  • This has become something bigger than just me and my challenges.

  • This is just the beginning of my story.

  • Life will challenge you at some point,

  • it's going to hand you something unfair,

  • it's going to take something from you,

  • and it's going to interfere with your plans.

  • When this happens, will you let yourself thrive in the face of adversity?

  • Will you also find purpose in it?

  • Maybe even use it to make the world a better place?

  • The choice is yours: deny, cope, or thrive.

  • (Applause)

Life is going to challenge you at some point,

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TEDx】在逆境中茁壯成長|Stephanie Buxhoeveden| TEDxHerndon (【TEDx】Thriving in the Face of Adversity | Stephanie Buxhoeveden | TEDxHerndon)

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    Dr. D posted on 2021/01/14
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