Transcript: Stephanie Buxhoeveden on Thriving in the Face of Adversity at TEDxHerndon

I was finally giving anesthesia for the first time as a student. I had spent months cooped up in a classroom and 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 are 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 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 relapsing remitting 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. 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 about 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 that 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 did not 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 patho-physiology 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 learned 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 25­year 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 is going to 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.

 

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