Amitha Kalaichandran
Amitha Kalaichandran
Darren Sudman is the CEO of Simon’s Heart which aims to prevent sudden cardiac arrest in children. The organization raises awareness around sudden cardiac death in children, provides free heart screenings, distributes AED devices, promotes research, and advocates for lifesaving legislation. Sudman spoke with me in August from Philadelphia.
We met back at TEDMED a few years ago and I was very struck by your passion about Simon’s Heart. But you had an interesting journey before founding your organization. Share a bit of that with readers.
I wanted to be a lawyer to make a difference in the world. The area of law I was practicing in wasn’t that fulfilling so I left the practice after five years. I did some lobbying on Capitol Hill for a non-profit in Washington D.C. Then I worked for America Online when the internet was becoming a thing, and my wife and I moved to Philadelphia where I worked in real estate and for a credit card company. I got my high school teaching certificate in history – I taught one semester at a local high school then taught another semester at a private school but went back into business since it was hard to find full time work. My work history never made sense until I started Simon’s Heart. Now, everything has come together.
1.Tell me about what Simon’s Heart does.
We raise awareness about sudden cardiac death and cardiac arrest in children, and believe that ECG screening should be the standard of care for all children, especially those who have lost a family member under the age of fifty, suddenly and unexpectedly.
We want people to know cardiac arrest isn’t just an adult thing. It’s the number one cause of death in student athletes and takes the lives of thousands of kids each year. Most of these conditions are detectable and treatable. In terms of raising awareness, we do this in a few ways. We worked with lawmakers and organizations in 14 states to pass Sudden Cardiac Arrest Prevention Act. That requires parents, coaches, students to be familiar with risks and warnings. Another way is through campaigns with colleges and professional sports teams, for instance with Philadelphia Flyers. All professional athletes get their hearts checked but through the program with the Flyers we have the “Overtime Challenge,” where, everytime the team goes into sudden death overtime, we donate an AED device to a youth facility. Most of these centers have never had an AED device available. Still another way is through HeartBytes, a digital registry of seemingly healthy kids that we built four years ago with Pulse Infoframe. We wanted to gather data we collect at heart screenings – EKG, heart images, and de-identify them to make it available researchers. That data has produced five abstracts, and will be presented at the American Heart Association conference as an abstract this Fall.
2.Let’s talk about what happened in 2004, which led to creating Simon’s Heart.
Simon was my second child, born on October 21 2004. He was a happy and healthy 3 month old to our knowledge, but one day he didn’t wake up, and we found he had died in his sleep. It was determined to be sudden infant death syndrome (SIDS). Our pediatrician advised we get our hearts checked. My wife Phyllis was diagnosed with a heart rhythm disturbance called Long QT Syndrome. There is a link between Long QT and SIDS. As well, Long QT is one of a handful of conditions that leads to sudden death in young athletes. We wanted to find ways to prevent another family from losing a child so our first initiative was to provide free heart screenings for students through school, working with a local pediatric cardiologist. This led to founding Simon’s Fund, which is now Simon’s Heart, to expand the impact. We now have a network of 40 cardiologists. On a personal level, after Simon’s death, my other kids, Sally (who was two when Simon died) and our son Jaden, were also screened.
3.What you experienced is something no parent ever expects to face. What can you share about grief, and what getting to your ‘new normal’ was like after something so unimaginably devastating.
Having met lots of grieving parents over the years, there’s no formula. I can’t speak for Phyllis, but what worked for me was that my daughter was two and she needed me to get out of bed everyday. She was really young and didn’t have a grasp of what was going on, and I had to take care of her. That forced me to wake up and live everyday as best I could – she was my motivation. We didn’t know it at the time, but Simons Heart was a tremendous help for us to move forward in life. It not only keeps Simon present in our life, but it changes the narrative: We just suffered one of the worst tragedies but through it we could create new narratives that involve helping prevent this from happening to other children, meeting families with similar experiences. When Jaden, our third child, came home, he brought another ray of sunshine to our house and reinforced the fact that life goes on and there’s still goodness in life.
4.What is the biggest misconception about grief?
I wish more people embraced it. I got some really unique advice from a co-worker who really had no education or expertise in the field of grief. His advice to me was “when you feel grief let it pull you under and don’t resist it – it’s temporary and when you’re ready, you’ll come back up.” This idea continues to work for me. Instead of resisting those emotions it’s sometimes best to let them run their course and step up and move forward again. So many people start to panic or resist the feelings of grief, when in reality it’s one of the most normal emotions we have as human beings. I believe those experiences also help us empathize better with one another as well.
5.That’s sage advice. Switching gears now, why is cardiac screening important? I come from a world where, from both medical and epidemiology point of view, there can be harms with overscreening – false positives for instance. How have your initiatives been received by the medical and public health communities?
I’ve looked into population health screenings. The concerns about cardiac screenings for kids are identical to concerns around mammographies and colonscopies. They key is to admit what we don’t know and to stay curious. So if someone criticizes EKGs because of their high false positive rate, that shouldn’t end the discussion. There’s always a high false positive rate when don’t know what looking for – at this time we don’t know normal variations in healthy childrens’ hearts. So this is why collecting data is important. I don’t see these objections as roadblocks, but I see it as disingenuous to criticize screening as expensive or with false positives without looking at how we can solve the problem. I read a. paper recently where a doctor in the 1950s advised against mammography, saying “If I cant feel it not there,” – that was the mindset then, and it has obviously changed. If that doctor embraced our ignorance and remained curious, he might have been part of solution. At the same time, I’m not saying that EKG screenings are the endgame here, but there is good research out there that shows that an EKG, when coupled with a physical and medical history, is the most effective method of detecting heart conditions.
6.This leads into my next question – there is a lot of interest in wearables now, particularly for things like sleep and cardiac tracking. Do you see future collaborations with tech?
It’s not crazy to say that one day every kid will have a wearable and it will be able to conduct a twelve lead EKG instead of a two-lead device. By then we will hopefully know enough about seemingly healthy kids’ hearts, and if anything looks abnormal kids will get alert. But that is some time away; it’s not where industry is right now.
7.What does thriving mean to you?
Thriving means that you appreciate your skills and surroundings, and find a way to make an impact on those around you.
8.What are you most looking forward to now in general and with your company?
I’m excited because cardiac screening gaining more traction in medical community and the younger more curious physicians like you are taking note of the importance of prevention. The other thing we just launched is the CPR JukeBox where we have a 10 foot by 10 foot tent and an 80 song playlist with modern songs that are 100 beats per minute. We teach kids how to do compressions on red kickballs. It’s a big shift for us. With Simon’s Heart, wherever we attended events, we were the table to avoid. We talked about kids dying. Now, we have fun with families, give them a memorable experience, and teach them a lifesaving skill.
After Daryl Terry was admitted to hospital last October for a kidney infection, the 80-year-old’s condition deteriorated quickly. She was soon moved to the intensive care unit at St. Joseph’s Hospital in Hamilton, Ont.
With a poor prognosis, it seemed she would most likely die in the ICU.
It all came as a shock to family and friends, says her daughter, Barbara Terry, and became particularly difficult when the once-vivacious Daryl lost consciousness and was unable to respond.
But what came next was a surprise of a different kind for the family.
Medical staff gave the family the opportunity to participate in a project created by a McMaster University doctor that aims to humanize the grieving process for families and their health-care providers.
The Word Cloud Project helps families create collages of words and memories describing their dying family member.
“A few days before my mother passed away, a doctor came in to ask if we wanted to create a word cloud. The team showed us samples of previous word clouds, and I thought: ‘What a nice memento,’ ” Terry said.
The Word Cloud Project emphasizes storytelling and engagement between the health-care provider and the patient.
Connections with loved ones
The Word Cloud project was outlined in a recent paper in the British Medical Journal. In that paper, families who took part in the project describe how creating a word cloud improved connections with the loved one — even after death — by helping the family reflect on the unique characteristics of the dying relative.
The technique of eliciting words was also compared to a form of grief therapy.
Terry believes the word cloud helped members of her family better process her mother’s death.
“It was a sad time, as my mother had such an impact on those around her, but while we were discussing the word cloud, there were laughs as well as tears as we shared these memories and unique moments,” Terry said.
Daryl enjoyed Coca-Cola, was known for her vibrant red hair and was called “Mrs. T” by many who knew her. As such, “Coca-Cola,” “Red” and “Mrs. T” made it onto the word cloud, as did many other descriptions.
Terry soon realized that her word cloud would take on a much bigger role than just being a keepsake.
“What surprised me most was that we ended up making lots of copies of it and even placed it on the casket during my mother’s visitation, which really brought another unique element to the service,” Terry said.
The Three Wishes Project, the umbrella initiative that includes the Word Cloud Project, was created in January 2013 and is the brainchild of Dr. Deborah Cook.
Cook, a Hamilton-based ICU physician and professor of medicine at McMaster University, was inspired to create the project as a unique way to help families process the death of a loved one — something she has seen time and time again during her 25 years of practice.
“I’ve always had a passion in clinical practice for end-of-life care, and I really wanted to make a difference. I had done some research on end-of-life care in ICU and felt there was something missing today, which is the humanism in medicine,” Cook says.
Helping families
Through the project, a doctor or nurse elicits at least three wishes from patients, family members or other health providers caring for those patients.
The wishes are classified into five categories: humanizing the environment, tributes, family reconnections, observances and paying it forward. The word cloud falls under several of those categories.
More than 42 per cent of patients and families who took part in the broader Three Wishes Project from January 2013 to November 2014 chose the word cloud as one of their wishes.
Meredith Vanstone, co-author on the BMJ study of the project and an assistant professor in the department of health research methods, evidence and impact at McMaster, believes the Word Cloud Project can also help prevent burnout among health-care providers in the ICU.
“Witnessing a patient die in the ICU can be a difficult experience for health-care providers, too…. It’s a specialty known to have lots of burnout, which is why finding a way to look at the impact of this project on clinicians, which we did in this project, can be important,” Vanstone says.
Julie DeVries, one of the registered nurses who took care of Daryl during her last days of life, had recently moved from working on a general ward to the ICU.
“The word cloud is my favourite part of [the Three Wishes Project], and to see the impact on the Terry family was remarkable,” she said.
“It really changes the atmosphere of the room, and as someone who was used to working on a ward where I knew my patients, it’s made a difference,” she says. “The ICU can feel more mechanical as many of our patients are unconscious. The word cloud added that human element so I could feel like I knew them as a person.”
Effective communication
Cook believes that initiatives like the word cloud can help a new generation of physicians communicate effectively with dying patients and their families.
Her research has shown that trainees value approaches that humanize the process of dying. In a study about the broader Three Wishes Project, she found that the project reframes death and provides a unique experience with end-of-life care.
A lot of people have said it reminds them of why they went into health care and that it re-engages the human aspect of medicine, which is often forgotten in the data-driven, fast-paced, technology-focused hospital setting,” Cook says.
Research indicates that most medical residents have lacked adequate training in end-of-life care.
Dr. Paul Kalanithi, a Stanford University neurosurgeon who died of lung cancer at age 37, wrote a book, When Breath Becomes Air, that was published posthumously and explored how a physician understands death through his own reflective experience.
Dr. Lucy Kalanithi, an internal medicine doctor at Stanford, says the way medical trainees are taught about end-of-life care is changing from purely classroom learning to humanistic learning at the bedside. (Stanford Med X 2016)
His wife, Dr. Lucy Kalanithi, an internal medicine doctor at Stanford, says the way medical trainees are taught about end-of-life care is undergoing a shift from purely classroom learning to humanistic learning at the bedside, and that approaches like the word cloud play a key role for patients, their families and providers — including medical trainees.
“There is so much about how medical students and trainees learn about death that can be revisited,” she says.
“For Paul, writing was a big part of how he came to terms with his own death. It also played a huge role in how I processed the end of his life, and because of [his reflections], his health providers came to know him in a different way — even after his death.”
Growing interest
The Three Wishes Project in general, and the Word Cloud Project specifically, have since expanded to include Vancouver General Hospital and St. Michael’s Hospital in Toronto.
Cook has received other expressions of interest and inquiries from hospitals across North America, and hopes to expand the initiative throughout Canada.
Barbara Terry is pleased to hear of that potential growth.
Six months after her mother’s death, Daryl’s word cloud hangs prominently in Terry’s dining room in downtown Hamilton. She hopes other families can benefit in the same way the project has helped her family process the end of Daryl’s life.
“Though I initially thought it was meant to be a nice keepsake, I now see how it was more than that,” she says.
“It was a comfortable and naturally non-intrusive way to share memories and … strengthen those memories even as she was no longer with us.”
**Originally published on CBC.ca**
Terri Peters is an architect and researcher whose interdisciplinary work maps new trajectories of ecological design through contemporary practice, academic research and pop culture. She is an expert in sustainable housing and her research focuses on the architectural and social implications of the built environment, with a focus on more holistic qualitative parameters and wellbeing. She has published more than 20 peer reviewed journal and conference papers on sustainable housing and the impact and evaluation of daylight in homes. She is the editor of “Design for Health: Sustainable Approaches to Therapeutic Architecture” Architectural Design, 2017 and author of “Computing the Environment: Digital Design Tools for the Simulation and Visualisation of Sustainable Architecture” John Wiley and Sons 2018 which looks at how environmental data can be feedback into design process. She has a global perspective, having lived and worked in Vancouver, Tokyo, Paris, and London, and Copenhagen which was her adopted home for seven years. After 12 years abroad she is currently back in her native Canada, as an Assistant Professor at Ryerson University investigating the intersections of building science, environmental design, and wellbeing.
1.What prompted you to focus on healthcare architecture/design?
During my PhD work, which was focused on social housing I realized that the aspect of ‘people’ in that housing was missing, specifically the social impact of buildings. We know the buildings we spend time in, and our surroundings, greatly impact our wellbeing, but how does this become part of how we work? We need to be able to back up our observations and claims as designers and I think the new-ish movement towards evidence-based design, where design decisions are based on more than a designer’s intuition and experience, but also on results and interpretations of scientific evidence, can help improve design.
On a personal note, growing up in Canada and then living in bigger cities like London, where I did my professional degrees, and then in Copenhagen where I did my PhD, these places can be seen as quite dark, dreary places but I loved them. I always say maybe this is why I study daylight, because I appreciate every drop of it! In Copenhagen our apartments had lots of natural light and natural ventilation, it really shaped my thinking of how positive and life affirming a home can be. There’s this concept in Danish of hygge, or contentment, a cosy feeling. Another concept in Swedish is lagom which means something like “just enough is enough.” these are important concept in life to me and I lived and experienced them in my time in Denmark and they continue with me now.
So with all of that together, I realized that if we designed spaces in hospitals and other settings to be intentionally mood enhancing, that could make us all feel better.
2.Why is design important to our well-being?
When we design a building, we know that the decisions we make, however small, impact the moods, ideas and wellbeing of people using the spaces. Prioritizing daylight, fresh air, variety of spaces and environments with views to nature are some of the ways we address this depending on numerous other variables like site and program. We know that these decisions about building form, materials, adjacencies and sequence of spaces, and other variables change our perceptions of spaces and places and help shape our interactions with others.
Design, simply put, impacts how we feel, and not just in health care environments, but in our day to day experience in our homes and where we work. According to the World Health Organization, depression is the greatest cause of disability worldwide, and architects have a role to play in making spaces that do more than satisfy program, budget and site, but that make us feel better. In architecture schools, students learn about building performance and aspects of sustainable design, but rarely are methods, metrics or examples of health promotion or spaces that encourage positive social interactions explored in any depth. There is a wealth of knowledge in allied fields such as environmental psychology, and published studies in areas such as public health and sociology that can be tapped into to enrich the architecture curriculum. The increased focus in schools on environmental performance of buildings must be paired with understanding trade-offs and co-benefits for human performance and wellbeing – after all, buildings are for people.
3.You had an interesting personal brush with the healthcare system in two different countries. What was that like?
I had my two children in Copenhagen at Rigshospitalet, the Royal Hospital. It was built in the 1970s, but had windows that open, large rooms, and lots of daylight that enters into the lobby and patient rooms. I am really sensitive to my environment and I found that the quality of that room impacted my mood and experience.
And it was a major contrast with being in a Canadian hospital which wasn’t designed with these well-being components in mind. I broke my elbow last winter and was forced to wait in a place that had a low ceiling, was crowded, no fresh air. I actually felt sicker! And to top it off it was hard to find where I needed to go – I spent a lot of unnecessary time just navigating: it wasn’t designed with ease. In Denmark, the culture is built around design. The way people speak about it and appreciate it is really unique.
4.How did this experience impact your work as an architect and architecture professor now?
I have the challenge of teaching 1st year students what sustainability is, when often the work-life balance of many architecture students is poor. We hear that many of them are very stressed and finding it hard to thrive. We often discuss the power of building design as health promotion tools.
Architecture is unique in that you experience it whether you want to or not: the impact the buildings have on us is so extreme. When it comes to environmental psychology, which links to designing for health, we know that people have a natural inclination towards nature, whether it’s the savannah or long views. The biophilia hypothesis (biophilic design) specifically describes this affinity to nature, daylight, natural materials.
Salutogenic design is another school of thought, which keeps stress reduction at the core. Earlier this year I became “WELL® Certified,” which is a new modality that evaluates qualitative and quantitative biophilia as it relates to health promotion. They measure things that are really exciting, because it’s centered around how people respond to being in a building. There’s a huge emphasis on daylight and nutrition, fitness, and well-being. For instance, they measure daylight differently. Traditionally in architecture we usually measure how much of the building’s floorplate is well lit without needing to turn on the light, its called spatial daylight autonomy and it means that area doesn’t need artificial light 50% of the time. The idea is related to productivity. The Well® Standard measures “equivalent melanopic lux,” which is a fancy way of describing the impact of light on the physiology of body, so for instance the impact on alertness, and sleep.
In my courses I describe a concept I coined called “superarchitecture,” which means buildings that do more than minimize the impact on the environment but that exploit and maximize the synergies and benefits to people: everything from building strategies like green roofs, daylight, fresh air and natural ventilation, shading where appropriate, outdoor spaces all these strategies that we know improve the environmental performance but that really also benefit our quality of life in tangible ways.
5.What does thriving mean to you?
Thriving is having time and energy to purposefully devote yourself to what you want to do. Technology can play a role in that, not only in making us feel more connected to each other, but by helping us make better decisions about what we want to do. It also involves how our environments help bolster our ‘emergency reserves’ to handle the unexpected, a protective buffer in other words. Last, when I think of thriving I think of resilience. There’s an emerging interest in architectural research and practice around building resilience and passive survivability. Much of how we think of the resilience of buildings may be applied to people as well. Daylight and views to the outside are big ones – we need these to feel at ease and to have the capacity to deal with disturbance and change. The current thinking around building resilience in building science and architecture is too focused on how buildings would survive in extreme weather or in an earthquake – what about us? How can our buildings help us survive and bounce back?
6.What are you most looking forward to with health design in general?
Looking forward to more interdisciplinary studies – for instance working with more healthcare professionals and building partnerships. I’ve been collaborating with psychologists regarding concepts of resilience in architecture and environmental psychology, which is undergoing a resurgence right now. I’m also excited about how we apply data, specifically how we can visualize the results of simulations, and how people can interact with visualizations and change our behavior to do more of what we want to.
I go to lots of industry meetings and workshops to understand what the potentials are with data and how they can benefit people.
Nira Kehar is an award-winning chef trained in French cuisine. She is also self-trained in Ayurvedic principles, which she incorporates in her cooking. For almost six years, Kehar ran the restaurant, Chez Nini, in Delhi, India, serving clients from around the world. Married to a musician, Kehar now spends her time between New York City and Copenhagen. Her cookbook, Ojas, was released in 2018, just months before a chilling diagnosis of breast cancer sent her life reeling. She spoke with me in July from St. Adolphe, Quebec where we cooked a meal of kitchari, salmon, and garlic scapes.
So what are we making today?
We are making Kitchari, which is a slow cooked dish traditionally made of rice, lentils and spices. Kitchari in modern times is often associated with a bland porridge, that Indian moms give their children when they are ill or have a bad stomach, but historically it was known as a delicacy for the royal families. It is rich in nutrition and easy for your body to break down and digestion because of the longer cooking time. Kitchari can also be made with any variety of beans or grains and I also like to top it with either vegetables, all type of proteins and different nuts and seeds. Today we are making a red lentil and quinoa kitchari topped with garlic scapes and pan seared wild-caught salmon.
What drew you towards the culinary arts?
After a debilitating spinal injury I suffered at work, I was catapulted into a life-changing existential crisis. The 8-month recovery period was filled with contemplation and an eventual re-engineering of my life, which brought to light how much I really craved a more creative path for my career. Having been raised in a house where food was the currency for love, I naturally gravitated to the idea of cooking, flavors and feeding.
But your academic background was somewhat untraditional.
I graduated university as a computer engineer, but after my injury, I went to ITHQ in Montreal to do their French culinary program. The prospect of cooking and living a life of creative expression was the most welcome and transformative experience of my life.
What is ayurvedic cooking?
From the young age of ten, I had always been very interested in Ayurveda and it’s very well known sister science, Yoga. This interest had actually stemmed from the book “Autobiography of a yogi” which I first read in an attempt to impress my mother, but it ended up being the equivalent to my “Harry Potter” as a child. This curiosity continued throughout my life and I found myself studying and practicing Ayurveda more than ever when I was cooking professionally. Ayurvedic cooking very organically became synonymous with how I expressed the flavors and compositions in my cuisine. I used the backbone of my Ayurvedic knowledge in order to nourish people instead of just feeding them. I tweaked recipes for the everyday foods people already enjoyed, to incorporate principles of eating for your body type and using herbs and spices for balance.
I think the trouble with many ways of cooking, especially when food comes into the picture in wellness discussions are all the trends out there. There are ‘blood type’ diets which have no scientific basis for instance. But when you describe Ayurveda using broad strokes, it makes sense. A whole-foods approach. Many people get turned off by the term ‘Ayurveda’ because it sounds different, even though the principles have been used for centuries.
Yes I definitely agree with you. We have been eating from the time we are born and will eat pretty much till the day we die. Unlike a lot of the habits and lifestyles that we hang on to and protect whether for cultural reasons or sentimental, I have found that people tend to be surprisingly ready to just completely change what and how they eat based on diets or fads. I find this extremely unhealthy and counter intuitive. Ayurveda on the other hand is fully based on balancing your individual body in an intuitive and gradual way. It’s about building your instincts about your own body type and then slowly making adjustments to strike the balance that nature has implicitly intended for you.
What does the title of your cookbook, “Ojas,” mean?
The closest translation is similar to what is termed “Chi” in Chinese medicine. Ojas is the most subtle bi-product of your digestion. Everything you eat, experience, feel and live all result in this vital energy, which is responsible for your being alive. It is the encapsulation of the “you are what you eat” idea. Eating not being limited to only food, but everything that is taken in by your perceptions and senses.
Interesting word. There are definitely people that seem brighter and more alive, and having healthy ways to deal with stress might be part of it. Perhaps children in general have lots of it. I’ve also seen photos of people who meditate regularly who just look less tense.
Ojas is also enhanced by mediation. A person with good or high Ojas has a bright energy and a glow. Good eating habits, stress managements, the right amount of sleep, loving relationships and an understanding on how to balance your unique body are all very good ways to manage your Ojas. I am determined to be part of the community that is bringing Ayurveda to the mainstream and in turn helping people improve their Ojas.
Shifting gears: What was it like owning a restaurant in India?
Owning my own restaurant was one of the most beautiful experiences of my life. I felt so privileged every day to have each and every customer walk in and allow me to feed them. With the incredibly steep learning curve, came a deep sense of responsibility on what I served these patrons. Where I sourced the ingredients, how I stored them and cooked them was of prime importance. Even more important was the well being and growth of the people who worked with me and put their entire vitality into the everyday running of the restaurant. What they put in would be what the customer would feel. Having a restaurant is famously known to be one of the toughest businesses in the world, and I would say that if you can do it in India you can really do anything. It is not a job for the faint hearted.
Lets talk about what happened in 2018. Your book just came out and you got some unexpected news.
I was diagnosed with breast cancer in April, a month before I was meant to start the promotional tour for my book. The cancer was discovered completely by chance and my doctor truly saved my life, because of a nagging feeling she decided not to let go of.
Five surgeries, fertility treatments, chemotherapy and radiation are all done now, and I have been cancer free for 8 months. It was an indescribably challenging time and in many ways continues to be, but I do also think in has been a surreal sort of blessing. I can never un-know the value of being present and grateful to be alive.
I’m so glad you were able to move through that period, though I know you have to continue to be monitored. It’s also interesting that your doctor had a sense that something was wrong — I’ve written about clinical intuition in that regard, and it’s fascinating. Moving to food and cancer now — there is a lot of misinformation out there around the role of nutrition when it comes to cancer. How did you approach food during all of this?
There is definitely a lack of information and guidance from most doctors on the subject. I was astonished to be told I can eat and drink whatever I wanted and even that it was ok for me to drink wine. I chose to take guidance from my Chinese medicine doctor and Ayurvedic practitioners, to integrate the allopathic treatment with a holistic diet as well as a fasting protocol during chemotherapy. I am not qualified to know what would be best for any other cancer patient to do, but I would strongly suggest making all the efforts to find the right foods and guidance for your body during this very taxing treatment. Even if your medical doctor isn’t qualified in nutrition to give you the right guidance, it is imperative to figure it out with other holistic practitioners. One important thing I made sure to do was to consult with my doctor, about any supplements I was taking because they can severely interfere with your treatments.
The role of nutrition is an interesting area of research, and admittedly I’m reexamining some of my old beliefs about the role of food as we learn more about whether there is a role for intermittent fasting in general and various new protocols for cancer treatment that look at the role of nutrition. It’s a fascinating area to keep an eye on, and like with many areas of medicine, once more data comes in we’re able to re-orient how we approach care. Was there anything else that helped you through this devasting period?
I went to a therapist through most of my treatment and continued for some months afterwards. Your life is turned upside down and it isn’t always possible for those around you to understand what you are going through. As physical as cancer and the treatments are, I experienced a deep sense of calm and vitality by using tools like therapy and transcendental meditation.
What does well-being and ‘Thriving’ mean to you?
Eating whole foods and lots of vegetables. Finding ways that you like to eat them and not falling into the pressures of all the overwhelming information coming our way from all directions. Finding whatever way to laugh everyday and be grateful for whatever it is you have. I write a gratitude journal daily and that really shifted my daily perspective. Also re-evaluating this expectation of constant happiness and instead being content with the little things in life. The second page of my book has the quote that I like to live and cook by, which is “More and more with less and less, until you can do everything with nothing.”
What are you most looking forward to now?
I am trying not to look forward but be in the now. I work everyday on my next book as well enjoy my good health and loving friends and family.
**Originally published in ThriveGlobal**
This is part of a series of interviews by physician and journalist, Dr. Amitha Kalaichandran, exploring purpose, resilience, healing, and brushes with the healthcare system by trailblazers in the health and wellness community.
Jessica Harthcock is the Co-Founder and Chief Executive Officer at Utilize Health, a neuro care solution that focuses on creating a better healthcare experience for patients with neurological conditions while delivering quality-driven medical cost savings for key stakeholders. Astounded by how much of the work her family had to do on their own; Ms. Harthcock vowed to create a service that assists patients and caregivers in locating and obtaining optimal care while minimizing expenditures for individuals, families and payers. To learn more about Utilize Health visit utilizehealth.co. She spoke with me in July from Nashville Tennessee.
So what is Utilize Health, and who does it serve?
Utilize Health offers a neurological care solution to lower care costs for health plans while maximizing overall health for members. The end user of our program is the patient who has a severe neurological condition such as a stroke, spinal cord injury, brain injury, and other condition.
After my accident I spent years searching for highly specialized rehab treatments. I saw how disconnected and fragmented the healthcare system is for patients like myself and variable recovery for patients. Patients would reach out to me and ask for advice. As I saw this happen I knew there was a tremendous opportunity.
Tell me more about what happened on that fateful day while you were doing gymnastics.
It was 2004 and I was 17 practicing gymnastics in order to improve my springboard diving skills. I went to do a front double tuck with a layout twist. The last one involved going up in air; when I came down, I landed on my head. I heard a crunch and my body went numb. I had landed on my head which broke my neck as well. I was in a state of shock and couldn’t feel anything or speak. In that moment I thought about Christopher Reeves, that I would be paralyzed like him. I didn’t have sensation but I was fully conscious. Later on we found that a cyst formed around the spinal cord so it looked as though the spinal cord had herniated in the scan, which ultimately did most of the damage at T3. This accident left me to function as a T3 paraplegic.
And what was the healing process like?
It was long. I was in rehab for nearly 3 years with leg braces, electrical stimulation, at times someone was holding on to me. My foot first just advanced an inch. It slowly turned into an actual step. You’re shaking, your muscles are trying to function. It took me six years to walk completely unassisted. I eventually moved to having just one forearm crutch, and now I don’t need any assistance. I used gait training as well as biofeedback that was linked to the gait training. Gait training was harder to come by back then, but today it’s much more easily accessible.
What would most people be surprised to know about having that particular physical challenge?
The biggest thing I see is how uneducated much of the public is when it comes to understanding physical differences. I always grew up conscious of people that had differences in their abilities. One of my cousins has cerebral palsy so she was in wheelchair since she was little. I never thought much of it, and my dad always talked about the ADA [American Disability Act] and how important that was, and how people with different abilities want the same things we all do.
Especially early on after my accident people would point and stare — a mother with her child in a stroller once pointed to me and said, ‘look she’s in a Stroller too.’
When I got my service dog I noticed how ignorant people were. I felt I needed to educate people about was service dogs could be used for and how mine help me. It was particularly tough when Ozzie and I would get kicked out of healthcare facilities and public spaces, even though it’s against federal law. So I to become my own advocate, and realized I needed to educate others on a larger scale so I started speaking at schools and local businesses.
There is a lot of misinformation out there around what works best for spinal cord injury. Are there any myths you would like to clear up?
The biggest misconception about spinal cord injuries and neurological conditions is that recovery is not possible. In the past 15-20 years research has advanced such that it IS possible. We now see patients make incredible strides in recovery, whether it’s regaining bowel, bladder control, whether it’s walking or sitting up and balancing again. We did believe 30 years ago that spinal cord injury meant someone would never walk again, but the fact that many patients are still told they will never recover and shouldn’t even try, and are sent home to live the rest of their life without hope doesn’t make sense to me. That’s where I get angry. I would like to see this addressed in the healthcare community. Conversations like, “this is what your prognosis is can be challenging, and this is what it can mean, but others have recovered even if we don’t fully understand why.” We still don’t know all the elements and facets and we’re at the tip of the iceberg. More research has to be done. At Utilize we’re collecting outcomes from every patient in the program, looking at countless factors: through social determinants, spiritual, and how it all plays a role in recovery. We get patients from all walks of life and we’re now looked at how we can use big data to tie it together.
Now that we talked about myths, what are some new and surprising areas of research spinal cord injury and the role of rehabilitation (as well as other components of treatment?)
The different simulators that they can implant in your spinal cord and brain are exciting. There’s some great work out of the Fraizer Rehab Institute in Kentucky for instance, led by Dr. Susan Harkema which holds a lot of promise. It complements other research, like gait training. There are also other, more controversial, research areas such as using stem cells in spinal cord injury, which will be an area to watch over the coming years.
Was there anything else that helped you, other than surgery and rehab wise through the healing process?
I separate healing into three areas: physical, emotional and spiritual. Physical healing for me involved rehab, exercise, nutrition, and rest. Emotional healing involved handling the traumatic injury, knowing I was going to be ok in the end and the stress aspect. Spiritually I knew something terrible had happened, but had to find a bigger purpose for it. For anyone who believes in a higher power, they have to feel something greater. I know a lot of people might not feel this way, but for me, the emotional and spiritual healing aspects were things I had to consciously focus on, to remind me that I couldn’t let this accident get the best of me. As well, I needed to surround myself with supportive people. I was lucky to have an entire army of people and support and helped me heal in really beautiful ways. My family was and still is today my rock.
Returning back to Utilize, what has the response been?
The response has been overwhelmingly positive. We have high engagement results and our health plan partners have had fantastic results. We post great outcomes and consistently show lower costs of care. If any business can create a win-win for everyone, that’s the sweet spot.
How did that experience change who you are today, and how you see life?
I was lucky because I saw the potential of the research that was happening. Sometimes that’s all it takes, to see recovery is possible. I think that people go through adverse times and you can let it get the best of you. You can drown in it or say ‘I can conquer this.’ Having that attitude up front is key. I’m a pretty positive person anyway, but I chose things to be grateful for every day. The adversity I faced led me to the work I do today and the ability to work with amazing people. It led me to my husband who helped me to walk again (he was actually one of my trainers!). I have an incredible service dog Ozzie because of it. It’s hard to see the good in a traumatic event when you are in the thick of going through it, but I always knew there was a bigger purpose and bigger plan — I hung on to that.
What does well-being and ‘Thriving’ mean to you?
Well-being to me encompasses six areas – physical, mental, spiritual, emotional, environmental, and intellectual. I have not achieved full balance in these areas. But I certainly try to be conscious of these areas in my life. Thriving for me means thriving in all these areas. I can be off in one and it can impact the other things.
What are you most looking forward to now?
Serving more patients through the plans we work with through Utilize. We have an entire team that is so excited to help them, and we’re just getting started.