Examined Lives: The Wooden Box

By Barry J. Jacobs

On a scorching day at my step-father’s graveside, I stood slightly outside the circle of 20 mourners, present but distant. In my hands, strange to me, was the wooden box.  I wasn’t thinking about its contents of bone cinders and fine ash but of the surprising coolness to the touch of its dark mahogany veneer and polished brass latch.  I listened impassively to my step-sister’s tearful remembrances of her party-boy father and to her cousin’s choked sobs recalling her favorite, most loving uncle. I had promised myself–especially during his decline from dementia–that I wouldn’t speak at his funeral on his behalf. So I stood watching in silence now, holding tight to his box of cremains.

wooden_boxAt the time he married my mother when I was 17, he had little interest in me or use for my impudence. For my part, I hated his sullenness when sober and boisterous prejudices when drunk—so unlike my deceased father. We learned to give each other wide berth, maintaining a tepid cordiality punctuated by infrequent clashes. This worked for over 30 years until he started losing his mind. Because I am my mother’s son and a clinician specializing in treating families dealing with illness, I felt it was my duty to assist my mother with the caregiving. That brought me into greater contact with not only him but many difficult feelings. Like many caregivers before me with a history of bad family relationships, I felt with fresh intensity the old resentment I held for the man I was now committed to helping.

In his last three years, I moved my step-father and mother up from Florida to live in an apartment a mile from me and my family. I went about the enervating business of seeing them several times a week for meals and doctor’s appointments. I visited him (irregularly) after he was placed in a nursing home. To deal with caring for someone I’d long detested, I had to shut off all of my feelings. I had to be rigidly self-contained, keeping up the polished veneer of the grimly resolute caregiver to coolly carry out my joyless caregiving efficiently. On the outside, I myself became a kind of wooden box. Inside, though, I felt empty of purpose and energy at times. I burned with anger, at other times, towards the hostile man he’d been and the vexing burden he’d become.

This was exactly what I always counsel family caregiver clients to strive to prevent—to not lose one’s self during caregiving, to not turn wooden and callous just to keep difficult emotions in check. But it seemed so much easier to completely shut off. What possibility could there be for resolving my past feelings with this vague, addled man in life or death? Yet even as I stood there silently on that July day, I felt a bit chagrined. I was in a responsible enough position at this auspicious moment to closely grip his box. Yet, dreamy in the hot sun, I held myself as far away from the unfolding scene as my psyche would allow.

And then someone suddenly whisked the wooden box from my hands and nestled it into the shallow, open grave. Others cried; I was too shut off to react. As part of the Jewish funeral ritual, a line formed to shovel dirt over the box but I stood there in a daze. I finally snapped to attention when I saw my 17-year-old son grab the long-handled spade. If he could do religious duty for a step-grandfather he hardly knew, so could I. I got into line and went through the motions of helping bury my step-father.

But though his ashes went underground, I didn’t entirely bury him. For too long, I did too good a job of shutting off and not processing what I felt. Six months after his death, I haven’t shaken all the woodenness. Hard as I try to come to terms with my relationship with him and put him to rest and myself at ease, I still find the box sealed. I’ve wound up carrying its weight and burden still. My hands still tightly embrace it.

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Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. A TEDMED Great Challenges Team Member for The Caregiving Crisis, he is the author of “The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent” (2006, Guilford) and the forthcoming “Caregiving Family Stories & Beliefs,” a collection of 25 of his previously published essays and case stories on families and illness.

This post originally appeared on the Collaborative Family Healthcare Association’s Families & Health Blog.

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: An MD on living and helping to guide the evolution of transgender health

Examined Lives is an apt term for an interview with Dr. Dana Beyer. She’s a retired eye surgeon who has practiced medicine in Kenya and Nepal, and a two-time candidate for Maryland State Delegate. Beyer is currently Board Chair of Freedom to Work, and Executive Director of Gender Rights Maryland. She has been an advocate on varied health issues; she co-authored The Dallas Principles in 2009, and worked the first countywide ban of artificial trans fats in the U.S. Beyer currently serves on the board of Keshet, the national Jewish LGBT organization. She’s completed seven marathons in the past nine years. She also lived most of her life as a man.

Are there many transgender MD’s? 

I’m not the only trans physician; I had the honor of performing in the first all-trans performance of The Vagina Monologues and was onstage with two other trans female physicians. I know physicians who have transitioned in place and at work. It’s quite doable in many parts of this country. If you bring something of value to your community, they’re often willing to overlook or ignore identity changes that you’re laying on them. Most people are willing to overlook lots of quirks. When I went to my rabbi to tell him I was going to transition, he said: ‘I only have one question. Are you still going to read the Torah for us?’ That’s America. We’ve got all sorts of diversity so this particular type is not unique in being different.

Is the system coming around?  What’s the current biggest barrier?

The work I’m doing with Kaiser [Permanente] is to help them roll out their program of culturally competent, medically comprehensive trans coverage. They’ve got about five million covered out west and they want the mid-Atlantic region to be completely trans-supportive as well. It’s accelerating. The Affordable Care Act is completely inclusive; the law states that anybody who receives any Federal funds has to be inclusive. You cannot discriminate against trans people. That’s the theory. Implementing that, of course, is a whole different thing.

I’m fortunate that I was a practicing surgeon and made enough money that I could survive post-transition. A lot of trans people have never had access to health care because they couldn’t afford it. When the Affordable Care Act gets going, there will be more provisions made available. We’re trying to make Medicare and the Veterans Administration completely inclusive with respect to surgery. There are a growing number of companies now competing with one another to offer it, particularly in the IT sector, because they are realizing that if you want to attract good employees you have to be open to gay and trans people, and the best way to do that is to offer good healthcare. What ten years ago cost me $100,000, I expect in five years will cost no more than a couple of thousand dollars in deductibles and co-pays. Which is a wonderful thing, because this is, at root, just a medical condition that needs treatment.

Can you speak to the barriers transgender individuals might face as they navigate health care?

The trans community has been so marginalized and oppressed for so long that many have a victim mentality. They’re afraid to even go into a doctor’s office.  I was closeted for 50 years, so I speak from experience. If you’ve transitioned to become a male, for example, and you’ve been seeing a gynecologist and now you’re the only guy in the waiting room, this makes you uncomfortable. Trans men have a much easier time socially, in general, than trans women. There is so much misogyny out there; the problems of bigotry I face are far more pervasive fundamentally from a sexist perspective before one even gets to a specifically trans-misogynistic one. But having overcome my personal challenges, nobody intimidates me; nobody gets away with bullying me.

It’s a hell of a lot harder being a trans woman and even harder being a poor black trans woman. Those are the people who are most likely to be murdered, and are far more often unemployed and homeless and spiritually crushed.  All of these different forms of prejudice coalesce.

BlockQuoteOften times trans people will not tell their doctors if they pass well, because they want to have a normal relationship with their doctor. But you can’t do that if you’re lying about your basic identity, because it matters whether you’re genetically male or female, when you transitioned, and how long you’ve been on hormones. You can’t hide that stuff from your doctor. Going back into a closet vis-à-vis medical care is crippling, and it’s not helping your physician treat you as a full person.

There are nuances that medicine needs to grapple with to make trans patients feel more comfortable, but that kind of cultural competency doesn’t come easily. The upcoming medical generation will do better than my class has done, and certainly better than teachers who told me – not directly but to the class as a whole – in psych class that I was a pervert and a deviant. I’ve turned the tables; I’ve gone back and taught in the same auditorium where I was told those things 37 years earlier, and I say: The circle is complete. We now know that my life experience is more truthful and real than what we were taught then.

Where are we with the science of studying transgender health?

It’s getting better. There’s very little argument that gender identity exists.  When it comes to trans people, there’s enough evidence out there that we’re neurologically who we say we are. Basic neuroscience has validated the existence of trans people, and the concept of brain sex and its difference from genital sex; the work that’s going on with other forms of intersex conditions that has gotten short shrift in med schools – it’s beginning to happen here.

We only recently, last December, removed being trans as a mental illness form the psychiatric bible, the DSM. The trans community finally had its day of de-pathologization, the way the gay community had in 1973, but we’ve only just gotten there.

It’s far better in Europe; there are consortia looking at this whole condition. The Europeans are not prudes like us, so somebody can apply for a grant that can say sex or gender or transgender in the title and it gets accepted like everything else. That would often kill it in this country.

What, in your opinion, tips the level from caring about something to speaking out and mobilizing to make it happen?

When I was recovering from major surgery when I was 13, which was a result of my DES exposure in utero — which made me intersex and a trans woman – I went into renal failure and cardiac arrest. While recovering, I told my mother I was going to be a doctor so nobody would have to go through what I had. She thought I meant the kidney failure, that maybe I would become a nephrologist. What I meant was that nobody would have to go through this intersex condition that I couldn’t share with my parents, because they threatened to have me institutionalized when I came out.

But as long as I was closeted I couldn’t act on it. I was removed from what was important to me; I was removed from myself. I’ve done more than 10,000 surgeries and they had little emotional impact on me because I was shut down. There’s no emotional attachment. I know I did it; I earned a good living; I remember things people wrote and cakes people made for me, but there’s no attachment. It’s only after I transitioned that everything has been more real and alive and colorful. We do know that the memories that most vivid and are easiest to retrieve are those with the most emotional content to them, but you need to be receptive.

It was only when I finally became myself that I realized I needed to – yes, it’s a cliché – pay it forward. I am a physician; I am a scientist. I bring a unique perspective as such to the issues of human sexuality. I knew that I had gotten to where I was because of the work others had done before me, pioneers who were willing to take those risks.

My primary motivation is to help the next generation, to make sure that kids get treated well and don’t have to live in a closet for 50 years.  It’s turned out that trans people suffer from post-traumatic stress syndrome from a very young age before they’re treated. Just knowing you’re in a wrong body, and not being accepted for it or being helped to deal with it – that causes PTSD.  We can see those brain changes on scans. Those changes already exist in kids. You can imagine what those changes are like with somebody who is to 30 to 40 years old. I like to think of my cohort as dinosaurs. There will no longer need to be people like me who are closeted and married to the wrong person.

Now every day I get up, and I’m just myself. Mine may not be the only voice, or the best voice, but it’s a unique voice. And you have to be yourself, because that’s where you’re most authentic. When necessary you move on. It’s a big world. There’s a lot of stuff to do.
TMIcon

Interview by Stacy Lu. This transcript was edited for length and readability.

Dana-Beyer-M.D.-200x249Dr. Beyer also writes for The Huffington Post. She will be TEDMED’s special guest at a live online Google+ Hangout Thursday, 12/12 at 2pm EST. Join us for a discussion on how we’ve arrived at a more accurate and humane definition of gender, and how transgender treatment and care options can advance in the future.

RSVP for the discussion here, and post your questions  and thoughts below; we’ll tackle them live on Thursday.

 

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: My Sarcoma, the story of a tumor told with art

By Jacob Scott

This is the story of a Cancer Connection I never hoped to make and also the one that has brought me the most joy.

About a month before my family and I left for the University of Oxford, my dear friend and neighbor Ray came over and asked if I’d look at this side, where an orange-sized mass was growing.

So, you know I’m a cancer doctor, so you can probably guess how this story plays out.  But before I tell you (or let Ray tell you), I want to share a bit about Ray. He’s an artist whose paintings have always struck me, and my scientist and physician friends, in similar ways.  There is just something alive about them.  Something cellular.  Something moving.

This makes sense as Ray studied biology as an undergrad, but it is also says something about the artist: that there is always something moving in his mind. At the heart of this artist is a scientist.

I’ll let him share his manifesto about his treatment, and the subsequent healing that he has found through this new project, “My Sarcoma.”

My name is Ray Paul. I am a 50-year-old artist, musician, frustrated biologist and myxofibrosarcoma patient. As of my latest scans in February 2013, I am free of detectable cancer. My next round of scans are scheduled for June 2013.

My journey begins in the spring of 2011, when I noticed a rapidly enlarging lump protruding from my left flank. Unfortunately, I fell into the category of the uninsured who wait and hope for their medical issues to resolve magically. Finally, as the mass grew to the size of an Idaho baking potato, I felt compelled to go into the local Emergency Walk-In Clinic. I was told it was likely a lipoma and I needed to find someone to remove it. After weeks of worry and several inquiries, I approached a surgeon friend who agreed, with some trepidation, to perform a tabletop resection, using local anesthesia. It soon became clear that the mass was more than a lipoma.

I was sewn up and a sample was sent to his pathologist who forwarded it to the pathology team at Moffitt Cancer Center. Soon thereafter, I received “The Call.” Shock and confusion rushed in, but curiously, were followed by a sense of calm resolve and numb determination.

I was admitted as a patient to Moffitt Cancer Center in August of 2011. I began neoadjuvant radiation therapy in September 2011, followed by a radical resection in 2012 of the 12 x 12 cm myxofibrosarcoma. In July 2012 I was diagnosed with a lung mass, and underwent a lung subsegmentectomy to remove a metastatic myxofibrosarcoma.  In November 2012 I began adjuvant radiation therapy.

During this life-consuming ordeal I have placed my complete faith and trust in my team at Moffitt, and in my physical and spiritual ability to heal. Never have I dreaded going into Moffitt. The strength and determination of my fellow patients has been humbling and has greatly increased my sense of compassion. I have been inspired to create a painting for the Radiation Department, which hangs in the waiting room.

Porpoise Song

Porpoise Song

and have donated a piece to the Integrated Mathematical Oncology Department.

Sweet Jane

Sweet Jane

I am currently embarking on a collaborative endeavor entitled “My Sarcoma” project.  I plan on combining painting, photographic images of my tumor cells, printmaking, video and music to create an exhibit that illuminates my experiences as an artist and cancer patient. I envision my art to be a prescient, visual manifestation of the battle raging within, and a powerful testament to the beauty of Hope.

As a teaser, here is a prototypical Sarcoma piece from Ray.  You can see his signature style of abstract forms detailed into cellular figures, and beneath, an H&E pathology image of his own tumor.

Ray's Sarcoma

Ray’s Sarcoma

Jacob Scott is a TEDMED 2012 speaker who blogs at cancerconnector.blogspot.com.  You can follow him @CancerConnector. You can follow Ray on Twitter at @raypaul4.

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: A firefighter lives dangerously – while sleeping

By Thomas Zotti

With hindsight, it’s easy to see the roots of my sleep issues.

After college (almost 30 years ago now…yikes!) I found a part-time job in my chosen field of radio, which required working a 2am-10am shift. It was located about an hour’s ride from my parents’ home, where I lived. I did that for a few months (and worked another part-time gig as well) before being offered a full-time position at the same station. This involved a 6pm-2am shift. I took it and commuted for a few months until I found an apartment nearby.

About nine months later I was promoted (?) to the 2am-10am weekday shift. Although the commute was down to about 15 minutes, the shift wreaked havoc on my circadian rhythms. But I was young and managed to adjust. I also tried to keep a fairly normal schedule on weekends.

I also developed the ability to fall asleep at any time and in any place. It was under control…I never felt like I would fall asleep without intending to do so. Just chalked it up to the crazy work schedule.

Eventually I moved on to another radio station. This time it started with a mid-morning-to evening shift with an occasional meeting to cover at night. Much more in line with the rest of the world. Later, I was given the morning host/anchor duties, which meant getting up at 3:30am to get to work, and working until 1:15pm or so most days. Back to falling asleep any time, any place.

Thomas Zotti on the job.

Fast forward to 1996 and a career change. I was hired as a full-time firefighter in my town. This involved working a 24-hour shift twice per week. Obviously, that included some downtime at the station, but I was required to respond to emergencies at all times of the day and night. While off duty, I could also respond as needed…often in the middle of the night. Everyone likes overtime, right?

However, my wife started to comment on my snoring. I didn’t think too much about it, and it was not much of an issue. With being away two nights a week (more if covering an open shift) it never seemed like anything to worry about. Later, a promotion resulted in changing to a day shift and being home every night. It took about a year to feel normal after the change. The comments about the snoring became more frequent.

Then, during a routine physical, my primary care provider (PCP) asked if there was any reason to think I had sleep apnea. I remember being somewhat surprised by the question. I knew apnea involved not breathing for a period of time, and my wife had not said anything like that. I had no reason to think that was the case. So I said no.

Time went by and the talk about snoring became more frequent. At the same time I began to find myself awake at various points during the night. No rhyme or reason to it…just would suddenly be awake. Very infrequently, I would awaken to a feeling of claustrophobia. The feeling would dissipate almost immediately, especially if I got up to use the bathroom. I had never been claustrophobic before, and as a firefighter we routinely do claustrophobia-inducing things, so it had never been an issue. I attributed it to stress and didn’t think a lot about it. Besides, it didn’t happen very often.

Other times I would awaken in the morning with a low-grade headache. More stress? It would go away after 10 minutes or so. My exercise program had taken a bit of a hit as I had little energy in the mornings, but I managed to muddle through. But I could always chalk it up to something else…the fire pager went off twice last night, the cat sat on my chest, etc.

Then my wife started saying I sounded like I was choking at night…and more than once she ended up on the couch because of the noise.

I had little energy in the morning, but after two cups of coffee (big ones!) I would get through the day. But I was getting regular exercise and an annual physical, which typically ended with the doc and/or technicians commenting on how healthy I was.

I’m not sure exactly what made the lightbulb come on last fall. I had the sudden realization that somehow this was all related. After finally putting two and two together, I went to see my PCP, and he agreed. I left with a referral to a sleep clinic.

The clinic was an experience. It’s set up like a small private hotel room. On arrival the technician reviewed the plan and set me up. About 18 electrodes were attached to my head. Two straps around my chest to measure breathing. Electrodes on my legs. A camera on the wall to record my movements. Finger probes. Then the instructions…go to sleep. We’ll wake you if there’s a problem. Easy for you to say, pal.

I slept…at least a bit. Seemed like it took forever to fall asleep while hooked up to all that stuff. In the morning I asked the technician who had to unhook all of it if he saw anything to be concerned about. His response: “I can’t tell you anything official…but you’ll be back for your CPAP (continuous positive airway pressure) machine.” Probably should have seen that coming.

As expected, the sleep clinic diagnosed moderate sleep apnea. By that time I was resigned to it and had done a bit of research on line. The total freak-out came in the fine print of the sleep study report. As a firefighter/EMT, I have some familiarity with vital signs. Oxygen saturation (O2 sat) is a measure of the relative amount of oxygen attached to the hemoglobin in one’s bloodstream. Perfect is 100%.  Most non-smokers have an O2 sat of 96-99%. Smokers and people with respiratory disease may run 90-95%. My sleep study report said my O2 sat had dropped to 81% at one point. In the field, if we have a patient with an O2 sat of 81% we start calling for medflight helicopters. I guess that explains the headaches.

I was prescribed a CPAP machine, which I now use nightly. It forces air into the airway under enough pressure to overcome any obstructions like overly relaxed muscles (the sound of breath passing relaxed airway muscles is snoring). I’m still getting used to sleeping with a mask on my face, but it seems to help tremendously. I have had a noticeable improvement in alertness. Although it often takes many weeks of treatment to “rebuild” a broken sleep cycle, I am very encouraged by fewer aches and pains, more energy during workouts, and that urge to nap after lunch is just about gone. My energy level seems much more steady throughout the day.

I also feel my job performance is improving as my mental acuity improves. Again, it’s one of those things that sneaks up over time and you didn’t realize it’s a problem until it’s being fixed. Having said that, I am extremely grateful that I have not been responsible for getting one of my firefighters hurt or worse while my brain was fogged up. My wife says there is no more snoring and choking. The only issue…since the mask is vented, if I turn on my side facing her she gets a wind chill. It’s been two weeks on CPAP, and I follow up with the sleep clinic next week.

Only now that it’s being treated am I realizing how big an impact my sleep problem had on my health. It seems as it creeps up on you, you slowly adjust to feeling tired all the time. It becomes the norm. I had pretty much chalked it up to aging. Having long had the ability to fall asleep any time, it took quite a while to realize that what was happening was actually a sleep problem. With sleep apnea, it’s not that you can’t sleep at all; it’s that you never quite get to the most restful phase of sleep. Before last fall, if you had asked me how I slept at night I would have said “like a baby” and believed it.

As I mentioned, I run and go to the gym regularly, which I can only assume probably kept the worst of the symptoms at bay for longer than otherwise. Like most people, I could stand to lose a few pounds, but it appears in my case sleep apnea is mainly a heredity issue.

Please don’t feel badly for me…there are plenty of people with much more serious problems than mine. But if any of this hits home with you, get it checked. Today.

Read more here about the Great Challenge of sleep deprivation, and join our live online event Thursday at 3:30 pm ET to discuss it and ask questions of leaders in the field.

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.