Examined Lives: A teenager’s long journey to mental health

By Alexa Ellenthal

My whole life it has been apparent that I am different. Some would even say that something is wrong with me.

I was a weird kid (I was highly precocious and inquisitive to the point that it was obnoxious) and my parents started taking me to a variety of specialists, mostly psychologists, and getting me tested when I was about six. At first the diagnosis was ADHD. The doctors and my parents started medicating me for it. Then they realized I had a mood disorder, too, and put me on pills for that. I remember my near-daily tantrums in first grade. I remember feeling like a zombie for most of second grade. All through elementary school they were putting me on different medication cocktails, taking me from doctor to doctor, hoping by some magic the pills would make me a normal kid or one of the doctors would be able to understand me.

shutterstock_53312143When I was nine I had my first major depressive episode. I was being severely bullied and it really got to me. I also developed insomnia. I would stay up late into the night crying, not even being sure why I was so upset. That’s when “mood disorder not otherwise specified” (MDNOS) morphed into depression in my medical records. The problem was that I was feeling impossibly sad and hollow and unmotivated, and because I was so young, I couldn’t always relay what I was experiencing in a way others could understand. That’s the problem  doctors have to try to diagnose patients based on introspective ramblings, symptoms, observations, but they only really know what their patients tell them and even then, they don’t know anything for a fact because patients might lie or omit some key details.

I was a difficult child, and not a particularly trusting one. I didn’t just open up to strangers who were being paid to listen to me and decide how to deal with me. I also didn’t understand why it was so important to talk to them. So they guessed at my condition, putting me on meds that zapped my emotions, or that made me either severely under  or significantly overweight. It was confusing and overwhelming, and by the end of middle school I’d been through at least a dozen doctors and probably just as many medicines. It’s so hard to find not only a good doctor, but also a doctor you click with. Especially as a young child, when most of them condescend to you, and even if you point out to them that you’re young, not stupid, they’ve still got you drawing pie charts of your emotions and playing with miniature Zen gardens.

-1I had developed severe body image issues due to med-induced weight fluctuations and my self-esteem was frighteningly low due to the bullying I endured daily, as I had been since kindergarten. Elementary school aged children are like lemmings; if one walks off the cliff, the rest follow; and if one picks on the bossy, weird, nerdy girl then the rest do the same. I started reading a lot of books about eating disorders and visiting websites like sixbillionsecrets and learning about self-injury and other such horrors. When high school rolled around, I got really stressed and my own practices of self-injury began. I used thumbtacks and paper clips to hurt myself, and I starved and binged and tried to purge but nothing ever came up. Things got worse.

The real depression hit, though, around late fall of my sophomore year in high school. I was seeing a psychologist whom I liked, but I never let her see how bad of a place I was in. She threw in a couple more diagnoses to my ever-expanding list: Anxiety and obsessive-compulsive disorder (OCD). As a nervous compulsion, I started pinching my skin, leaving ugly, moon-shaped scabs and scars. I started missing a lot of school and trying to lose myself into other worlds and lives, sleeping a lot (for the dreams) and reading a lot of love stories (for the happy endings) and watching a lot of emotional TV shows (to feel something). My grades slipped and so did my façade of happiness. My peers began to notice that something wasn’t right with me, my friends were always asking what was wrong, and my parents, who had been under the impression that I was recovered, started noticing my symptoms.

Then it all started again, with going from doctor to doctor and pill to pill. My parents had me see this one awful woman who I’m quite sure truly hated me and tried to say I was bipolar, called me manipulative, said I was faking and said my mom was stupid for believing me and a bad parent. It was a psychiatric horror story. Going into junior year of high school I was beyond stressed and self-harming pretty badly; my eating habits were totally screwed up and I was positively miserable. I didn’t want to exist. As the holiday season set in, suicide weighed on my mind more and more.

Then, one Friday night in mid-December, I arrived at a friend’s house only to be greeted with the news that a boy I had been friends with two years prior had died. He had killed himself. In the wake of his death there was utter devastation. I saw what a suicide did to a family, to a community, to the friends of the deceased. I chose to live. I didn’t think the world could afford to lose us both. I went to a psychiatric hospital a month later for my depression and self-harm. I kept the eating disorder to myself. The hospital brought in guest speakers  former patients who had recovered and begun living happily, and they had us do a lot of art therapy. We went to the gym every day and sometimes there was animal therapy, where they brought dogs in for us to pet and play with. We also set recovery daily goals and discussed whether or not we were successful at the end of each day. Since being discharged, I’ve been in therapy two to three times per week. I have started dialectical behavioral therapy, which I find immensely helpful. I finally have medications that work for me. I do group therapy, which is awesome.

But then, on the first day of school this year, a sophomore killed himself. I realized that the problem was bigger than me, and bigger than Henry. It is a challenge that so many people face. It is something that so many people suffer through silently. They’re ashamed of their illness due to the stigma that society attaches to being mentally ill, or their family rejects the idea that they could be sick because they perceive that as something being wrong with the person.

According to the National Institute of Mental Health, more than one in four adults suffer from some sort of mental illness. And many people can’t get the help the need and deserve, due to the shame put upon those of us who need this sort of help, as well as the exorbitant cost of mental healthcare. I want to change that. I want people to understand what it’s like to be mentally ill or bullied and I want the people who are suffering to know how far from alone they are. I still want all of that. That’s why I started You Never Know Who, an online community for kids struggling with mental illness. That’s why I’m writing my novel, which is about a 16-year-old girl trying to recover from a major depressive episode while struggling with several other disorders. The main character is based off of not only my own experiences, but also those of the many girls and young women I interviewed about their struggles. I want to educate people about the reality of mental illness. I want the mentally ill to know that there’s nothing wrong with who they are and they aren’t alone. I want people to move on from their struggles the way I’m moving on from mine.

Alexa Ellenthal will be a guest at TEDMED’s Great Challenges Google+ Hangout this Wednesday, December 18 at 2:00 pm EST.  Join us to discuss how mental health treatment is being integrated into primary care.

Examined Lives: On World Diabetes Day, one patient’s story about the power of taking control of her own wellness

By Amy Lynn Smith

I’m about to celebrate 25 years of living well with type 2 diabetes. I say “celebrate” because I choose to celebrate how far treatment has come, and all the places it still can go to make this disease even easier to live with.

Most important, I choose to celebrate that type 2 diabetes is a chronic condition that’s largely up to me to manage. There’s nothing more empowering than knowing I can be in charge of my own health.

Living with diabetes isn’t a path you can walk alone

My initial diagnosis knocked me over. But I quickly realized that I could either take care of myself or suffer the consequences.

I did my best. I followed healthy eating plans and exercised. I took my medications as prescribed — medications that have improved significantly in the last 25 years. I saw my primary care physician and endocrinologist regularly, and they made adjustments to my medications that would help improve my blood glucose control for a while.

But it wasn’t enough. There were times I felt discouraged and lonely in my quest for wellness. And I became increasingly frustrated with my doctors’ frequent unwillingness to look at the big picture — to see me as more than a person with diabetes.

Diabetes is only one facet of my health

I’ve been lucky. I haven’t developed any serious complications after nearly 25 years. But despite good overall diabetes control, I still found myself struggling to feel my best. I was battling frequent bouts of insomnia and sometimes overwhelming stress, which aggravated my fickle gastrointestinal system. Other than occasional lifestyle recommendations, my doctors were all quick to reach for medication as a solution.

I asked for nutritional guidance and didn’t get much of it. I asked about my struggle to deal with stress, and they largely ignored the role stress can play in the management of diabetes and overall health.

Most of the time, they’d do some blood tests, give me some orders to exercise more and watch what I eat (without any specific direction), write a prescription, and send me on my way. This approach was anything but empowering.

Chronic disease is the intersection of so many of the Great Challenges of health and medicine: stress, sleep deprivation, the evolving role of the patient, whole-patient care and medical communication, at least for me. My care providers weren’t recognizing that. I knew it was time for something new.

Finding an approach to care that works for me

During my search for better ways to manage my diabetes, a friend who works in healthcare told me about functional medicine. According to the Institute for Functional Medicine (IFM), it’s an innovative approach to medical care that uses the latest medical research to develop personalized care for each patient based on his or her unique environment, lifestyle, and genetic background.

My friend had been diagnosed with rheumatoid arthritis. But after working with a functional medicine practitioner she discovered her only problem was allergies to gluten and dairy. Her symptoms quickly disappeared and she’s never felt better. “It changed my life,” she says.

It didn’t take me long to see that functional medicine was exactly what I’d been looking for. It’s grounded in the idea that chronic disease can’t be treated like acute disease — which is how my doctors, although well intentioned, had been treating me.

Here’s how Mark Hyman, M.D., chairman of the IFM, describes the difference between functional medicine and traditional approaches:

“Functional medicine is a new way of thinking about solving the puzzle of chronic disease. Current medicine is really the medicine of ‘what’: what disease do you have, what drug do I give. Functional medicine is the medicine of ‘why’: it’s focused on etiology, on causes and mechanisms. So if we can get to the root causes of disease — which, predominantly, for chronic diseases are lifestyle — and if we can address the fundamental drivers of chronic disease, which also drive our costs — then we can have a fundamentally different way of delivering healthcare, providing healthcare, and getting much better outcomes at much lower costs.”

Sure, my care providers had told me lifestyle changes are paramount to managing my diabetes, but I hadn’t found someone willing to give me the support to make the principles work for me. Until now.

I started working with a functional medicine practitioner about three months ago, and the personalized, holistic approach to care is unlike anything I’ve ever experienced. I don’t feel like I’m being “treated.” Instead, I feel like I’m an empowered partner in my own care — with the support of a practitioner who is standing at my side every step of the way. Between sessions, we exchange emails every few days to see how the changes I’m making are working.

She’s completely overhauling my diet, which I like to call it my “new fooditude.” I’ve cut out processed foods and do most of my own cooking, giving up the bad habit I’d developed of eating out far too often. Every once in a while is enough now. She’s also eliminated foods that can trigger unhealthy responses, and is adding them back in one by one to see if there are any I need to avoid for good.

Just over a month into my new fooditude, I’ve seen dramatic changes. My energy and stamina have improved, I’m sleeping better than I have in years, and when I’m faced with a stressful situation I find myself responding with a calm, clear head.

Best of all, my body is starting to do a better job of producing insulin naturally as it adjusts to my new fooditude. My practitioner has told me I’ll probably never be able to stop taking insulin, but I’ll probably need less of it over time. And I’ve already thrown two medications overboard that were doing nothing for me but masking symptoms I’ve relieved by eating better.

This journey is just beginning, and it will probably last a lifetime. But I can say this: I like where it’s headed. I finally feel like I have a care provider who is seeing the whole me — everything that makes me who I am and contributes to my sickness or health. When you consider that diabetes is something you live with every day, like any chronic disease, a holistic view is essential.

I’m more than my diabetes. I’m a multifaceted person. I’m grateful to have found a practitioner who sees me that way, and an approach to medicine that provides ongoing guidance while putting me in charge of my own wellness.

-1Amy Lynn Smith is a writer and strategist who frequently writes about healthcare. You can find her at alswrite.com or on Twitter @alswriteShe will moderate a TEDMED Google+ Hangout tomorrow, “Finding new allies in chronic disease care.” Tune in at 2pm ET for a conversation with experts and to ask your own questions.

 

Posts by guest contributors do not reflect the views of TEDMED.

Examined Lives: On World Lupus Day, one patient’s story about life with a mysterious disease

By Tiffany Marie Peterson

This February 20th was my third-year anniversary of being diagnosed with lupus.

I have had joint problems since I was little. But in January of 2010 I lost my grandmother to throat cancer and shortly afterwards my symptoms because so severe I couldn’t move out of the bed. It took me about a month to be properly diagnosed. I was first diagnosed with rheumatic arthritis, but my general practitioner (GP) is so hands-on; he referred me to a rheumatologist right away so I wasn’t misdiagnosed for long.

Lupus is such a mysterious disease. One moment its not active at all, and the next moment completely active. I could be having symptoms like swollen achy joints or chronic fatigue without any warning. There are so many “ifs.” You never know how your day is going to go until it ends and you never know what what’s coming down the pike.

Putting a Team Together

When you have lupus, you have to manage multiple care providers, including nephrologists, GPS, and a rheumatologist.  I’m on my third rheumatologist now, because the first two wouldn’t let me an empowered patient. That means that you’re enabled and educated, and you know how to take part in your own care. I just started seeing my new rheumatologist that I have only seen a couple of times. I finally found a rheumatologist who was willing to sit down and work with me and not at me. It took me about two years to get this team together.

I’m on a drug that may cause eyesight issues, so I also have an opthamologist. I have to see a psychotherapist and a psychiatrist – lupus itself causes depression – so each month I have about six doctors’ appointments minimum.

Technology Helps Communications

I first go diagnosed my rheumatologist wasn’t open to sharing my medical files, so when it came to making decisions she didn’t care about what I had to say. Now, I have a patient portal that allows me to send my GP e-mail, so I can email him whenever something’s up, and he can get in contact with the other doctors.

I don’t know if many patients have patient portals, but it helps me a lot.  The fact that I can just email my doctor is wonderful, because when you call the office you almost never get the doctor.  But when I email my GP, he responds within a day or two.

Of course, you also have to have a copy of your own health records to share when necessary. It’s so important. I tell my lupus brothers and sisters, make sure you always have your own health records with you.

Still, it’s not like I can look at my charts online.  All of my records are paper records.  I have no idea why I can’t get them electronically. Or diagnosing or medications. Even my GP will still use a book to find out whether or not medicines will clash, and I’m like, ‘Can’t you go online and find out whether that’s happening?’

I usually use a health app, CareCoach. It helps me prepare for my visits so I can write down all the questions I have to my doctors. It also helps me record all my doctors’ visits, so I can just play back my experience and get the information I need.

It does make me feel more in control, and definitely more hopeful. It’s a good feeling when everyone is on the same page and all of your doctors are working towards the same goal.  It definitely feels more empowering, and it gives me hope that I’ll have a better outcome.

On Insurance Hassles

There was a huge hurdle in getting health insurance. I couldn’t afford it.  I’m listed as permanently disabled, so managing my healthcare is a lot more straightforward, but there are still some hurdles. I have so many doctors appointments and it all adds up, especially when it comes to medical billing. Every single time the mail comes I get a new bill, so I’m always busy getting through all that.

In the Hospital

There is so much that happened to me in the past six months. I had a hospital stay recently. I had a urinary tract infection that went straight to my bloodstream and caused all of my organs to shut down, so because of that I had to have a blood transfusion.

I went to many different hospitals during my recent visit.  I have a family hospital, which is in the Bronx, but prior to that I was in two other different facilities that did not work with me. They weren’t practicing participatory medicine, where the patient is at the head of the table in their own care. They worked hard at my family hospital to follow my wishes and to work closely with my care team.

Finding a Patient Network

One thing I would tell other Lupus patients: Don’t be shy to ask your doctor questions.  A lot of us can get intimidated when we go into the doctor’s office, because maybe the doctor’s bedside manner is not that great.

Maybe the single biggest step a patient with chronic illness can take is talking to other patients. Lupus patients are always talking to each other online to help us manage our care teams. It’s like, ‘We’ve discussed the issues with each other, now let’s go talk to the doctor.’

I feel like social media in itself has been really helpful in managing my own care, because there are so many patients out here who are veterans and have been managing this disease for 20 years and more. That’s how I found my first mentor, my first year with lupus, and now she’s one of my great friends. She’s been one of my close mentors ever since.

Tiffany Peterson

Tiffany Peterson

 

Tiffany Marie Peterson blogs at www.tiffanyandlupus.com. Follow her on Twitter @tiffanyandlupus.

Examined Lives: Why healing health starts with racial equity

By Gail Christopher

At the time my three-month old baby died, I could think of nothing but our family’s sorrow. We had lost a dear, beautiful child. What can you do but grieve?

It was only later that I realized that I was a statistic.

In fact, as I looked back, I could recall a number of early deaths in my community. When I was 15, my best friend’s mother was rushed to the hospital before she was due. It was a shock to us all when she died during delivery. This was, we thought, a healthy woman.

Then I remembered my parents’ best friends. The couple had a daughter named Alicia. Alicia also died during childbirth, along with her baby.

What was going on here? Why were these maternal and infant losses so prevalent in families of color?

I made the decision to do something to change these statistics, and began pursuing a career as a holistic doctor.

As I would come to learn, there were gross inequities between whites and African-Americans in birth and maternal health outcomes.

When I graduated from naturopathic medical school in the mid-1970s, I set up a private practice in Chicago. At the same time, I established a company that worked with social service agencies to deliver holistic wellness and well-being services to underserved communities.

Gail Christopher

We focused on getting women to eat healthfully, to get exercise, to manage stress. They did the things that are key in the holistic healing world. And these women began having healthy babies.

It actually became a joke in our community. Women referred to me as “the fertility doctor,” because I saw so many who were expecting, or who couldn’t get pregnant, or who had had babies and lost them. Of course, I wasn’t a fertility doctor. I was making sure that they got the whole health care they needed. Healthy pregnancies followed.

So this was my work: Helping women, children and families become healthier. Helping communities understand and improve disparities in outcomes. Helping reshape the statistics.

And yet I also knew that truly eliminating these differences in outcomes would mean dealing with something much bigger.

To genuinely eradicate health disparities—as a nation—we have to confront the undergirding dynamics that contribute to them. That means addressing African-Americans’ continued exposure to discrimination and lack of opportunity.

That’s hard work: structurally, politically, emotionally.

Challenging the dynamics of discrimination means reaching back through deeply entrenched roots and history. It means reconfiguring the DNA of this country’s belief system.

At a "Save Our School" rally in Cleveland, Ohio, high school junior Gail C. Christopher addresses her classmates as they convene to save their high school from demolition.

For hundreds of years, that belief system has held that it is OK for people to be valued differently based on physical characteristics. We have never as a country dealt with that belief.

Of course, we’ve had a civil war and a civil rights movement—but those dealt with the consequences of that belief rather than the belief itself. We’ve also known that race is a social, rather than biological, construct. But simply pronouncing something false is not dealing with it.

Today, at the W.K. Kellogg Foundation, we’ve put a priority on achieving racial healing and racial equity in this country. This work specifically and openly challenges the historical belief in racial hierarchy.

At the same time, we also work to to equip people with the innate and external resources to mitigate the effects of that historical belief.

It’s a both-and approach.

Dealing with it requires intentional strategies.

Let’s imagine a young boy growing up in a community much like the one where I used to practice. It’s an impoverished neighborhood. He’s enrolled in a failing school system. He’s harassed by police. And he or may not have the benefit of two parents or an extended family.

This child is continually exposed to overwhelming stress responses, something Dr. Jack Shonkoff at Harvard University calls “childhood adversity.” Childhood adversity is a predictive factor in all manner of chronic diseases later in life. And so we see our long racial history playing out across the health of individuals and particular communities from a very young age.

For this boy, and for his children, we have to tackle both the current situation and the historical context.

At the bare minimum, he needs balanced nutrition and social support to cope with the vicissitudes of his body’s adaptation to the stressful environment. People need optimal food for optimal health. The W.K. Kellogg Foundation funds organizations working to improve access to fresh, healthy affordable food for vulnerable children.

Dr. Gail Christopher, with her children Heather and Hassan.

At the same time, we also fund organizations working to acknowledge and dismantle structural racism—the policies and practices that continue to create barriers for children of color.

Which takes us to an evolution of my earlier question: How do we address the early death so prevalent in families of color?

Addressing these health inequities demands that we address inequality more broadly. We must create an environment that supports equity and opportunity while mitigating the effects and consequences of exposure to discrimination.

In other words, I realized that to change the statistics—to change the conditions that resulted in so much premature death in my community growing up—we must bring a racial healing and racial equity lens to our nation’s health discussion.

Until we do, we’re just putting Band-Aids on the hemorrhage.

Click here to read more about the Great Challenge of the impact of poverty on health.

Examined Lives: The tale of the bungled biopsy

By Margaret Brunner*

In December, I went to Starsen Radiology* for my annual mammogram. They called me at the end of the month. They said I needed to come back immediately for another mammogram because they had found a suspicious mass in my right breast. So I went in that day for another mammo. They definitely saw something, and said I needed to get a biopsy done ASAP, and could perform it, f I wanted.

Of course, I panicked.  I called my Ob-Gyn to see what she had to say. The Gyn office said that Starsen* did biopsies all the time, and that it would be okay to schedule it with them. I called and set the appointment for January 7th. I’ll never forget the date.

The big day arrived and I went to Starsen for the biopsy.  I was nervous as heck. I’d never had this done before, so I didn’t know what to expect.  There were two nurses there to help me prep. Then the doctor came in to explain the procedure and had me sign a paper, of course.

The procedure, called stereotactic biopsy, was pretty painful – they said there would be “some discomfort.” They gave me a local anesthetic, but it was never enough.  Boy, was I glad when it was over.  They told me that they would send the tissue sample to the pathology department in a local hospital and that it would take about one to two days to get the results back.

The waiting was the worst part.  You start to think about horrible possibilities.  Starsen never gave me an idea of how many biopsies show a malignancy, though I did find out from another breast center that 80% turn out to be benign. I’ve been relatively healthy all my life.  So, when I got the call that I would need a biopsy, I was very worried. I kept on thinking, “What if do have breast cancer?  How am I going to tell my kids? I haven’t done so many things that I still would like to do.”

This then led me to develop hives, which happens when I’m psychologically stressed.  On day two, I called Starsen to see if they had the pathology report. Nothing yet.  Day three, still nothing.  Day four, nothing.  Day five, nothing.  Imagine my fears growing and my hives getting worse.  Day six: Starsen had finally gotten the pathology report back. It was benign!  Hallelujah!  I was so happy.

Fast forward to a week later. I get a call from Starsen, who tell me that they took a sample of the wrong area.  Are you kidding?? I couldn’t believe it.  When they mentioned risks before the procedure, they mentioned infection. They did say they might not get the right sample, but that it was very unlikely. Not only did I have to endure the pain of the procedure and many days of waiting for the pathology report, I now found out that they got the wrong area. I never found out why, and another radiologist told me the news – not the one who had done the procedure. They tried to make me go to them for another biopsy.  I declined.  I didn’t pay anything for that procedure out of my pocket – I guess insurance picked up the tab.

I wasn’t sure what I should do.  Should I see a surgeon?  I got a few names in my area. Then I talked to someone in my town and found out about a breast surgeon in Manhattan. Apparently, many women in this area have gone to see her and she is well regarded in the field. I wanted to see someone who really knew about breast issues.  I finally got to see her on February 6th.  Because the mass was so far back in the breast, she recommended another stereotactic biopsy, instead of surgically getting a sample of the suspicious mass.  But she said she wanted the radiologists at her location do the biopsy. That was fine with me.  I loved the breast surgeon.  She was a kind doctor.

On February 12th, I went in for my biopsy.  What a different experience.  There were two nurses there for my procedure, but they really “held my hand” to tell me what was going on and what they needed to do during the procedure.  I really liked that aspect.  I also got to meet the two radiologists who were working on my case.  They introduced themselves to me beforehand and told me what to expect during the procedure.  And they gave me their phone number in case I had questions.

After the procedure, the radiologist got another image to make sure they got the right area. The radiologist in New Jersey hadn’t bothered with that.  I loved the radiologist who performed the biopsy.  She kept asking how I was feeling. Although she gave me a lot of lidocaine, I still felt quite a painful tug and pull during the process.

They sent the sample to their pathology group and said to expect the report within 24-48 hours.  After my last experience, I was very skeptical about getting it that soon.  I was ready to wait six days again.  But boy, was I wrong.  The pathology report came back incredibly quickly – 24 hours!  And happily, it was benign!

If I had to do it over again, I would have found a doctor that other women have seen and speak highly of.  I would asked my friends right away to see if they knew of a good doctor.  Telling my friends also helped relieve the stress of worrying about whether I had cancer. My friends are truly one my pillars of strength.

*Names have been changed to protect privacy.

Visit TEDMED’s Great Challenges website to discuss how to eliminate medical errors.

Examined Lives: Truth at the end of life

By Elaine Waples

Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”

Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.

I have cancer that is incurable, aggressive, and has negligible survival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.

I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.

Elaine Waples with her husband, Brian Klepper.

Of all things, the simple act of truth has become most important to my husband and me. We talk about my dying. It is a poignant, painful and sometimes funny honesty. We have done it after solemn consults with physicians, during long hospital stays, through gut-wrenching disappointments, and sometimes over toast and coffee on Sunday mornings.

We have learned to be forthright and unafraid of saying it out loud. We deal with small moments – planning vacations, making purchases, visiting family, entertaining old friends – in a sober and reflective way. Routine plans – Christmas with the family; the vacation cottage; an annual trip – become critical decisions. We discipline ourselves to push aside the things that are trivial. It becomes easy to ignore the cracks in the driveway and the clutter in the closet.

And we occasionally treat it with laughter although, perhaps to the horror of some, it is gallows humor. We joke that when I am gone, the piano, the house, the cars will all be his. We laugh and mimic Homer Simpson, believing he is doomed, reading a pamphlet headlined, “So You’re Going To Die.” It reminds us that we are in a real world where playfulness is a part of life.

There is no bucket list. There are no plans to see the great pyramids, kiss the Blarney Stone, or throw a party in Times Square. We look to the small things we have known for decades that have become precious to us now: a walk on the beach, a Saturday matinee movie, sharing a bowl of ice cream, holding hands as we go to sleep at night.

Details – advanced directives, the will, the attorney, the broker – are easy. These will help put affairs in order but they do not address relationships with the world and the people who inhabit it.

The hard things that tug at the heart and create the pain are the unbearable truths to parents that they will lose a child; to siblings that the person they’ve known their entire lives will be gone; to children that they must overcome and move on. They convey a clear and undeniable message to doctors that they must relinquish the desire to salvage, fix and prolong.

But most of all, the truths we come to know lie in the depth and clarity of our bonds. For me, this is reflected in the conversations with my husband, the beloved person in my world. I want him to go on with life; to find someone to share it with; to help the children as they struggle with the loss; to remember the laughter and how much we loved each other. That is all I have left to give him.

And for that I extract a bittersweet promise that he will make me laugh until the end, that
we will hold hands every night, that we will share the ice cream, that we will always talk
about what is happening, and that I will die with him beside me.

It is the dignity, the finality, and the truth at the end of life.

Click here to read more about and to share your thoughts on the Great Challenge of Coming to Grips with End-of-Life Care.

Examined Lives: A med student learns to listen

By Nichole Boisvert

I remember the first story.  It was my first day of eight months working in an HIV clinic in Trinidad; I was unsure of where to go, when a young woman sat beside me.  She looked to be in her late 30s. HIV had begun to ravage her body, her bones eerily visible, her teeth chattering with fever.  She simply started talking, as if she had been waiting for this moment to tell her story.  I listened.  This woman taught me volumes about HIV and a person’s experience with a disease that carries such stigma.  What I remember most though, is when she told me about her boyfriend.  “He loved me,” she said.  “He knew he was sick and he kept telling me, ‘Don’t be like me.  Don’t you be like me.’”

Nichole Boisvert in Cambodia, where she worked with a medical NGO.

The ideas of narrative medicine enlivened me from the moment I heard them at a conference nearly five years ago.  I had recently “converted” from my fourteen-year dream of veterinary medicine to “people medicine” because I simply wanted to do more to help, and with human medicine, I could save lives, heal, or be present and fight for patients who needed it.  I was filled with ideals.  I still am.  Naomi Shihab Nye told me once that without idealists in the world, no good would ever happen, and I try to live by that.  I felt elated and affirmed that these ideals of how I wanted to practice medicine—to be present, to listen, to work the person’s story into the standard history and physical—could be reality.  From that point, I read as much as I could by physician-writers like Danielle Ofri and Abraham Verghese, and read Narrative Medicine; Honoring the Stories of Illness by Rita Charon, a pioneer of the narrative medicine movement from Columbia University.  I wanted to learn how to listen, how to carve out time, how to maintain compassion.

Everywhere I turn, there are stories.  In Trinidad, part of my job as a clinic volunteer was simply to sit and listen to patients share their experiences, their fears, their hopes.  I could borrow an office, sit beside a hospital bed, and just be present.  These patients told me of stigma and strength, of abandonment and suffering and the things that kept them alive.  They gave me Winnie the Pooh stickers, mangoes, and perspective.

Patients in Cambodia take a number to receive treatment; a shortage of medical personnel means that many will be turned away.

As a medical student, perhaps one of the greatest blessings is the gift of time.  We are only expected to carry only three or so patients on any clinical rotation, and so have the ability to spend the extra ten minutes just to listen.  In these moments, I have heard sources of strength in the patient who told me of her developmentally delayed 12-year-old, or the man who told me that he had just got married in the hospital a month ago, after coming out of a coma.  I have picked up on idiosyncrasies that indicated cognitive decline and felt edges of fear in questions about a recent diagnosis.

Rita Charon once wrote, “I was thinking of receiving the stories as gifts.”  There truly is no greater privilege then to be allowed to bear witness to someone, particularly in the place of vulnerability that is a medical setting.  It is a chance to see the individual behind the illness.  As a future physician, it is my duty to take those extra few minutes and listen, notice; healing is not simply eradication of the physical maladies but, as is present in Georgetown University’s motto, cura personalis, care of the whole person.

Nichole Boisvert is a third-year medical student at Georgetown University.  For more from our narrative medicine series, click here.

Examined Lives: A younger face of dementia

My mother was diagnosed with frontal lobe dementia at the age of 63. Cause: unknown. The symptoms crept up over years, in retrospect, but really got our attention following surgery to repair a broken wrist. Mom became moody and withdrawn. She had trouble speaking in complete sentences. She baked a cake and forgot the sugar. When driving, she felt compelled to pass whomever was in front of her — a white-knuckle experience for her passengers, particularly on a highway.

Photo: Gordon Donovan

Later, though, she had more falls and began to walk with slow, birdlike steps, suggesting another fiendish disease at work. She was undiagnosed for quite a while, until her thoughtful gerontologist looked between the lines and found she had progressive supranuclear palsy (PSP), a neurodegenerative disease. Eventually, she would become completely rigid, and, at the end, lose her ability to swallow. Her dementia was one of the symptoms that particularly unlucky PSP patients face.

It didn’t manifest in forgetfulness.  Rather, it was a series of behaviors that were off kilter at best and painfully embarrassing – and dangerous – at worst. Like wandering off holding my three-year-old at Disneyworld, swallowed by the enormous crowd as I frantically tried to follow.  Eating off of a stranger’s plate at a nearby table while waiting for her dinner at the local tavern.  Opening the passenger door on a highway.

Mom’s dementia was an especially startling, as she had previously been so capable in so many fundamental ways. She was a wizard with numbers and a top-performing saleswoman. She could wallpaper a room flawlessly.  She sewed elaborate prom dresses, and stuffed animals and quilts that she donated to children’s hospitals. She grew and canned her own vegetables and baked, decorated and transported an elegant, three-tiered wedding cake for my cousin’s wedding. On her first trip outside the U.S., she made her way alone around Paris, not knowing the language, including a long Metro trip to return a train ticket.  She got the refund. Then she drove us to Belgium – in a stick shift, of course.

Mom in 2009, one month before her diagnosis.

Because she looked even younger than her age, and was otherwise healthy and fit, save for the blankness in her brown eyes, people she encountered were often taken aback by her behavior. But I was humbled by the kindness and humanity we encountered, especially once when Mom reached over and grabbed a pair of socks from a woman’s hands at a clothing store.  The woman leaned over to me and whispered, “My dad was like that.  I know. God bless you.”

She was able to express humor and love the longest.  One day, two gents at the nursing home had a little shouting match, all up in each other’s faces – typical guy stuff, even though one was strapped to an oxygen tank and the other wobbled precariously behind a walker. Everyone in common area could hear their salvos:

“You talkin’ to me?”

“Yeah, you.  I don’t like the way you look.”

“Well, I’m sick of your shit, too.”

“Get up!  I’ll show you what for!”

I turned to see Mom soundlessly giggling.  Our eyes met.  Recognition.

And whenever I told her I loved her, her response came back, clear as a bell: “I love you, too, sweetheart.”

There was a lot that worked for us in the healthcare system.  I was lucky to be able to take her to the one of the world’s top PSP specialists, Lawrence Golbe, who carefully examined Mom and gently confirmed the diagnosis.  But much of our help came from outside the system. My parents had life insurance that kicked in when mom entered hospice and helped defray the enormous costs of nursing home care, which long-term care ombudsmen helped us find.  Lawyers helped us have the necessary paperwork in place, which in turn spurred necessary talks about hard decisions; a friend who is a neurologist had given me frank advice as to what was in store for Mom. The CurePSP Foundation publishes information about the disease and organizes online discussions and local support groups.  Knowledgeable and caring hospice nurses – brought in by our private nursing home – provided continuity and were our mainstay during those final weeks.

Dementia robs its victims of their chance to share their stories. But early on, I asked my mother for permission to tell hers, and she agreed. Like most patients I’ve interviewed, she wanted to help others, especially those who might follow in her unsteady footsteps.

By Stacy Lu

Join TEDMED’s online live discussion with experts on the Great Challenge of our epidemic of dementia this Thursday at 1pm ET.