Posts in Audio Stories
Living and Dying with Intention

Chris Davie died on January 8, 2019, at the age of 41. He was diagnosed with a grade 2 Glioma—a brain tumor—on the last day of 2007, when he had an unexpected seizure in the car with his wife Betsy and baby son Nathan, on their way to a New Year’s Eve party. It was a frigid Minnesota night; luckily, Betsy was driving.

The diagnosis was a shock and the initial treatments--including brain surgery-- grueling, but he was told his life expectancy with this type of tumor could be 10 to 20 years, and this seemed like a long time. “

I know this is the real world, that this is terminal,” he recalls thinking, “but I am going to do my best to go 20 years.” Despite regular medical checks, life went on as usual, for the most part, for the next 10 years. But in 2017 the tumor started to grow again and, after a second brain surgery, the tumor was re-classified as a Grade IV Glioblastoma, a diagnosis with an average life expectancy of 15 months. The cancer was no longer “surreal,” as it had been for so many years. Suddenly, it was a reality with a frighteningly short time-line.

Betsy Davie, Chris’ wife, contacted me by email in early June, 2018. She had learned about Health Story Collaborative after watching a live-streamed story event, co-hosted by CaringBridge, featuring Michael Bischoff, another patient living with Glioblastoma, and his neuro-oncologist, Dr. John Trusheim. Betsy and Chris resonated with Michael’s story and were motivated to reach out. “Chris is in a tough spot medically,” she wrote.

“The last few months have been difficult. To be transparent, the tumor is affecting his ability to communicate, particularly in written form, which is why I am writing to you. In the last month we have discussed, at length, the importance of being more open with family, friends, and possibly the wider community. We are exploring ways for him to tell and share his story while he still can.”

We met in August to record their story. Chris was clear on his goals. He wanted to capture a record of his experience, to communicate what he was going through, what he had learned and what had been meaningful to him. Most importantly, he wanted his kids, Nathan, now 11, and Julia, now 7, to remember him and to know, deeply, how much he loved them and how much their love meant to him. During our conversation, he mentioned a song that has been important to his family—“The One Who Knows,” by Dar Williams. A quote from this song hangs on the wall in the hallway between his children’s bedrooms, where it has been for years. “You’ll fly away, but take my hand until that day,” it begins, “So when they ask how far love goes, when my job’s done, you’ll be the one who knows.” He knew that he would fly away first, before they are grown, but the message still pertains.

While on his way out of this world, Chris worked actively and intentionally to deepen his connections and to make his love known.

ChrisandBetsy.png

Michael Bischoff, who, without his knowledge, led Chris and Betsy to me, also has young children, and has also committed himself to doing what he can now, before it’s too late, to share his story and deepen his relationships. Michael reflects on his first experience sharing his story in community as follows:

“I was putting my trust in the healing power of bringing forth what is inside of me, not in thinking that it will magically cure me of cancer, but in trusting that bringing together my internal and external worlds will bring me closer to life, and connect the sometimes-lonely landscape of moving through brain cancer with other people I care about.”

Michael is now part of the Health Story Collaborative team, our Healing Story Principal, guiding others in storytelling and leading by example. He has taught me that it is possible to heal even in the face of death. He has demonstrated the power of connection. If we fully own and openly express our vulnerability, the imagined walls that keep us separate often disappear.

At Health Story Collaborative, our work centers on using storytelling as a therapeutic tool. We work closely with individuals navigating health challenges to help them construct and share their narratives in ways that are psychologically productive and empowering. Our approach is grounded in research supporting the health benefits of storytelling. We encourage the development of certain narrative themes that have been linked to improvements in mental health, namely agency, communion, redemption and coherence. But the people we work with keep it real. It is not always possible to have a sense of agency in the throes of illness. And not everything is redeemable. It can’t get worse than death.

And yet, Chris and Michael, two men with Glioblastoma, a deadly brain tumor, have given me hope and inspiration. They remind me: it is not all or nothing. Even when death is imminent, we can look for threads of redemption and flashes of agency. We do what we can, and we do it with love. We nurture and celebrate our communities and connections. We give voice to what is in our minds and hearts. We expose our humanity. They remind us.

If this isn’t healing, what is?

Originally published on WBUR CommonHealth Blog on January 15h, 2019.

*Mixing and sound design by David Goodman

Music:

  1. Catie Curtis, “Passing Through”

  2. Dar Williams, “The One Who Knows”

  3. Sugarland, “Shine the Light”


Sidewalk Lessons

I’m sure you’ve heard the saying, “It’s not how many times you fall that matters; it’s how many times you get back up.”

It’s a great message, but to me, at least in my circumstances, it doesn’t tell the whole story. Don’t get me wrong, getting up from a fall, whether physical or emotional, is incredibly important. Learning to pick yourself back up is a valuable skill, and is representative of a special type of grit and determination that’s needed to get through the realities of life. But there’s more to it.

As someone who is well-versed in falling after nine years living with Miyoshi Myopathy, an adult-onset form of muscular dystrophy, I’ve become an expert on the subject, for better or worse. I’ve fallen all sorts of ways – I’ve tripped on cobblestone sidewalks, I’ve stumbled getting off a bus, and I’ve been knocked over by oblivious strangers engrossed in their iPhones. I’ve even fallen over after sneezing. Even with the greatest of precautions, it doesn’t take much to fall, especially now that I’m nine years into this disease, a physical shell of my former self.

As a serial faller, it often feels like the famous saying has been turned around on me: It’s not how many times you pick yourself back up, it’s how many more times you’re going to fall now that you are upright again.

Falling, as you can imagine, is no fun. It’s not something I’ll ever quite get used to. But thankfully, so far, I’ve gotten back up every time, although in the last few years I’ve needed the help of others to do so. Assistance or not, there is pride in getting up after a fall, dusting myself off, and continuing on with life.

However, it isn’t from the act of getting back up where I’ve learned life’s most important lessons; it’s on the ground post-fall. It is here –on the cold, miserable pavement, or the hard wooden floor, or the cushiony carpeting (oh look, the Cheerio from yesterday’s breakfast), where I’ve had to confront the sobering realities of my life, mainly, that my disease isn’t going to get better anytime soon, if ever. Lying on the ground, unsure how I’m going to get back up, is terrifying. Every time it happens, my body trembles, my heart races uncontrollably. I often feel like I could pass out, that is, if I don’t throw up first.

But it is in these most frustrating moments after a fall where I have found the resolve to keep going, unlocking strength I never knew I had. I found this resolve - to continue living my life despite the weighty knowledge of what lies ahead – ironically enough, after trying to give up.

It was middle of winter in early 2013, and I was going on five years dealing with increasing muscle weakness that I knew was only going to get worse with time. That night, on a side street in Cambridge, Massachusetts, I fell for the umpteenth time, but it was the first time I couldn’t pick myself back up using my own strength. Instead, I had to crawl over to a parked car and use it as leverage to stand up again. When I finished, exhausted, I plopped myself onto the hood. I wanted to quit life right then and there.

Over the years, I had suppressed my emotions, putting on a strong façade to keep myself sane day after day. But on this night, it was all just too much. I had fallen twice in five minutes, and if the car wasn’t there to bail me out, I might have taken myself up on the alternate option to crawl under a nearby bush and wait for life to pass me by.

In those dark moments on the ground, when I failed over and over again to get up – first with my body weight, then with a flimsy metal fence that never had a chance to support me - I thought this was going to become my life, my future. Fall. Get up somehow. Fall again. My life reduced to perverse clockwork.

On the hood of the car, I felt an exhaustion I had never felt before, and have never since. It was a combination of physical exhaustion and emotional burnout. I had used all my strength to get up onto the hood, after crawling 20 feet to even get to the car, after failing twice to get up, after having fallen again five minutes before that and pulling myself up using a stronger fence further down the street. Giving up was not only an emotional decision, it felt perfectly rational. How could I deal with this every day? And it’s supposed to get worse from here?

Deep down though, I couldn’t give up. Maybe it was my subconscious giving me a jolt, telling me to snap out of it, or maybe it was a divine nudge reminding me I had so much yet to live for – I believe it was both. Eventually, I pried myself from the hood of the car and walked, ever so carefully, the remaining block to my apartment.

It was only months later that I could fully understand how that experience was a turning point in my life. The falls haven’t gotten any easier since then, but in finding my inner strength that night – and I had to really be pushed to brink to find it – I gained a new confidence. I realized that if I could withstand the pavement, the failed attempts to get up, the dark thoughts that swirled through my mind, even the knowledge that falls like this would become a regular occurrence, I could withstand anything. Suddenly, dreams that were dashed no longer seemed impossible.

Doors that had closed in my face opened once again. No problem seemed insurmountable. This audio clip, recorded on the phone and edited by Dr. Annie Brewster, chronicles my nine-year journey, back to 2008, when I was first diagnosed and started feeling symptoms, on through the present day. My life these last nine years feels like a three-act play – Act 1: Denial, Act II: Depression, Act III: Acceptance.

I am in a better place today, although I still fall, and still occasionally wonder if there is a limit to how much frustration I can take. But it is from these moments on the ground, when I am forced to confront the magnitude of my disease, watching helplessly as the mobility of my former life slips further out of reach, that I have learned to let go. To let go of the feeling of permanence that each fall brings. To let go of the notion that this is all my life has been reduced to. To let go of what I can’t control. Falling is merely one activity – albeit a miserable one – in a life that is so much more than my muscle weakness. Falling can be physical or emotional, but it happens to all of us, repeatedly, even with the most careful planning. I hope that my story – and my lessons learned from the pavement - can be one of many stories that you can refer to when life knocks you down.

Because, as I learned the hard way, and as the great saying should have gone, it’s not how many times you fall that matters. It’s not even how many times you get back up. What matters is knowing that you are going to fall again, and when you do, that the sidewalk is powerless to stop you. You are more resilient than you know.

Finding Mental Health

One Woman's Story Of "Recovering From Psychiatry"

Laura Delano grew up in a wealthy Connecticut suburb in a family of high achievers. She was a nationally ranked squash player and student body president. But in her teen years, life got more complicated as she struggled with her own identity and felt burdened by the pressures she felt from her environment. She started to act out, cut herself, and was sent to a psychiatrist by her parents. At 14, she was diagnosed with bipolar disorder and prescribed powerful psychiatric drugs, including the mood stabilizer Depakote and Prozac. 

With medication side effects leading to additional problems and “symptoms” which in turn led to more medications, Laura says she began to lose herself. She was defined by the diagnoses she continued to collect: bipolar disorder, borderline personality disorder, substance abuse disorder and binge eating disorder. She was taking up to five psychoactive substances at a time, including an anti-depressant, an anti-psychotic, a mood stabilizer and an anxiolytic (anti-anxiety agent).

Her early twenties were marked by multiple psychiatric hospitalizations and ultimately a suicide attempt. Her only identity was a self-described "professional mental patient."

But then things began to change.

Over five years ago, Laura weaned herself off psychiatric drugs and shed her diagnostic labels. For her, this has been a spiritual journey involving the cultivation of self-acceptance, self-love and honesty. “It is the hardest thing I have ever done,” she says, but she now feels happier, more connected and more engaged in the world.

Personally, I have been moved by Laura’s story. As a practicing internist, I often rely on psychiatric diagnoses and medications. In my clinical practice, I have seen psychiatric medications reduce suffering and save lives. But it has been useful to step back and reconsider my filter on these issues.

From day one of medical training, we are taught to fit our patients into neat diagnostic categories whenever possible. The goal of our patient interactions, we learn, is to sift through and distill all that we see and hear in order to hone in on a diagnosis. This categorization can be helpful in directing our care, of course, but it can also be limiting, and even dangerous. Rarely does a diagnosis fit perfectly, yet all too often in our culture one’s diagnosis becomes indistinguishable from one’s identity. Labels have power.

With mental illness, diagnostic criteria are particularly difficult to define and identify. Truthfully, our current understanding of the brain and the biochemistry behind mental illness is limited. There are no clear markers to measure and quantify. Instead, we must rely on subjective interpretation of behavior.

And yet, psychiatric labels abound. It is estimated that one in four adults, or approximately 61.5 million individuals, and one in five teens between the ages of 13 and 18, meets criteria for a diagnosis of mental illness within a given year.

Laura would say that the medical establishment often miscategorizes healthy struggling as pathology, and that this is especially true in adolescence, when some degree of acting out is to be expected. She believes this is what happened to her.

Today, more than 20% of Americans regularly take psychotropic medications—chemical substances that alter brain chemistry and function, and ultimately emotions and behavior. In 2010, sale of such medications amounted to more than seventy billion dollars in the US, and prescription rates continue to climb for both children and adults.

Again, our scientific understanding of how these medications work is shockingly poor. It has something to do with a soup of neurotransmitters—serotonin, dopamine, norepinephrine—but we haven’t nailed down the exact mechanisms of action.

Can we really say with complete confidence that mental illness is primarily the cause of chemical imbalance in the brain? I don’t think so. Not yet anyway.

Moreover, the list of negative side-effects of these medications seems almost endless—weight gain, cognitive impairment, drowsiness, dry mouth, higher rates of diabetes, increased suicidality, sexual dysfunction to name a few--and studies suggest that long term use of such substances may actually lead to increased disability over time.

Most concerning of all is the increasing and often “off-label” (i.e., not FDA approved) use of such medications in children. For instance, the number of children receiving atypical, or second generation, anti-psychotics doubled between 2001 and 2010. Disturbingly, children on Medicaid are four times more likely to receive these drugs than kids with private insurance. What are we doing to these developing brains? Again, we really don’t know.

I am not suggesting that all psychiatric diagnoses are wrong, or that every one on psychiatric drugs should stop taking them. Even Laura would say that it would be dangerous to stop taking these drugs abruptly, without a lot of planning, personal reflection, and supports in place. I still believe that psychiatric drugs can be helpful at times, and I will continue to prescribe them, but I will do so less frequently and with more awareness and caution.

All of us, and doctors in particular, need to ask questions about our current frameworks of understanding and about our assumptions. Laura’s story has reminded me of this. Every patient is unique, and there is still so much we don’t know.

A version of this story was originally published on WBUR CommonHealth Blog March 16th, 2016. 

Contact Laura: 

Laura on Facebook: https://www.facebook.com/lfdelano

Laura on Twitter: https://twitter.com/LauraDelano

Recovering from Psychiatry on Facebook: https://www.facebook.com/recoveringfrompsychiatry/

Laura's Suggested Resources:

www.madinamerica.com-- Mad in America

www.cepuk.org-- Council for Evidence-Based Psychiatry (UK)

www.beyondmeds.com-- Beyond Meds

www.recovery-road.org-- Recovery Road

Find suggested books here