Watching my sister die changed my life. I don’t want this to happen to you.
“What is happening? When will it stop?”
My sister strained to get the words out, a few inches from my ear, as she lay ravaged by cancer’s grip during the last eight weeks of her young life. Real conversations between us stopped happening weeks before she uttered those words. Conversations were a set of breathless mumbles and hand gestures. Eye contact, touch, story-telling and constant-bed side presence was our main form of communication.
In that moment, all I could answer, with as much love as I could muster was, “I don’t know. And I’m so sorry. I just don’t know, sister”, followed by a long cuddle, and an ever-lasting feeling of letting my sister down.
It was around this time, that while building my startup, I had been contacted by an advertiser. Taking the call, while I paced up and down the hotel hallway 3 miles from where my sister lay, I found myself discussing the value of my audience, answering questions about my growth rate, my customer’s spending habits, the product I was launching next, and where the advertiser would appear and how often.
After closing the deal, I broke down in tears. I was trying to run my startup, and come to terms with the daily reality that one morning, I would be sister-less for the next 40+ years.
I don’t know how I managed to even brush my teeth in the morning.
Feb 2016: It’s been 3 years, 2 months since my sis died. She never made it to her 40th birthday.
Rules and Regulations
My sister was an amazing human. Smaller than the average bear, she was a tot compared to me and my father (6' and 6'3" respectively).
Pushing 5'2" (if she had heels on), she was a fiercely intelligent competitor; in academics, sports, debates, and life in general. She took the boys on and rose to rock star status on the [boys] water polo team in high school, ushering in the opportunity for other girls to play (if they could handle it).
She confidently secured her spot as the chick who didn’t care if you ripped her swimsuit off as she swam towards the goal — she was going to get one anyway, so hold on to your shorts, she’s coming through. This attitude, from Day 1, was a tale of things to come.
Despite formal rules and regulations (sounds like:“You’re too short”) and informal ones (“You’re too short and not strong enough”) she pursued and brought many of her dreams to reality. She served as a platoon leader in the Navy, an Intel officer for fighter pilots aboard the USS Truman, an intel officer for SEAL Teams, and was a distinguished and honored intel analyst for the FBI. In every instance, she quickly and with finesse garnered the trust and confidence of her very tough customers.
When she followed my father’s footsteps into the Naval Academy, and chose to courageously leave before graduating, she elected not to stand by when she saw wrongs being done. She used her massive strength of will and intellect to take on one of the world’s most prestigious educational institution’s lack of resources and support for women struggling with the cultural challenges that resulted in a high incidence of mental health problems causing eating disorders.
At the end of 2005, the first of the two toughest tests of her strength, will and faith came to be when she was just over 32 weeks pregnant and hit by a car. The results, we would learn, were far too severe for any of us to foresee at the time. The immediate aftermath was coma and a diagnosis of severe TBI. And, thus began an upward climb to relearning how to eat, walk, talk and dress.
Oh, and mother.
Her son who, by the time he was 7, would come to know more about health care, and all the people and moving parts in it, than most adults in America today. The rest of us were either moved to tears or anger as we muddled through the challenges in her care; whether in or out of the hospital. There were more than a few doctors, nurses, administrators and receptionists who are glad to not see me anymore.
But as her rehabilitation continued, there was another blow yet to be delivered.
The diagnosis of cancer came in August, 2008. A rare form. Neuroendocrine carcinoma… PNET.
What in living hell is that?!!
Her call to me that night was to announce her fear through tears, then her rage, and then the plan. Because that’s how she rolled. There was always a plan. No matter the size of the mission — gather the intel, and make a plan to execute.
What was our plan? Who was the best in this business? Why are they the best? Let’s start lining up everyone now.
“Start doing the research Tanya. You do that the best”, she said, trying to make me feel better about the news, as if giving me a task would make me feel like the distance between us (we lived 3500 miles apart) just shrank.
When it came to intel, she was the best. But we both knew her ‘job’ had just changed…. So I took the task on with commitment, pride, and a great deal of fear and anxiety.
Ah, yes. And all this while the world still turned.
My startup needed attention too. Its mission, to help others lead more healthy lifestyles, was horribly ironic now. It was one of the first places I went to for answers to questions like “Where do I go now?”. As I sought advice from others, I lost myself in the daily operations of trying to grow the company, experiencing all the highs and lows of technology glitches, new product development, fundraising and team development. But it all felt easier than what was happening outside of it.
I knew now that I had joined millions of others who walked through their working days wondering if other people knew how important health was, if others knew just how much pain they were in, how powerless they felt, or understood the deep fear a debilitating loss of control was while an epic battle was being fought — one that normally had a binary result not in your favor.
Still, I kept shipping. And producing. And selling.
In my calls with sis, instead of constant chats about her deep bone pain (her cancer had spread to other areas of her body), the feeling of her constant vomiting, or her disappearing veins and burn of chemo, she wanted to know about any new customers I had, my fundraising plans, new cities the company was in, new features in development or an exciting new event we were creating.
Her humor always punctuated these talks with breaks of needed levity. She found plenty of time to poke fun at the issues she suffered as a result of the cocktail of drugs she took — like the time she drove to work, pulled over on the freeway to vomit her guts out, and then close the door and drove on.
The unanswered questions continued. So did the painful, frustrating and multiple doctor and chemo visits, the condition under which she had to travel for those visits!, the 25+ pills that got more difficult to swallow every day, the putrid liquid she had to drink, the loss of paper records, and the volume of data, research and new treatments ‘based on populations like her’ … it all just surprised, shocked, saddened and angered me. It would take hours to get down all her medications, and we used to stare at them all lined up and wonder, what if she just didn’t take one — just one — that day. It was enough to lift her spirits just thinking about it.
I couldn’t do anything to ease any of that physical [or just operational] pain, frustration or inefficiency.
For sis, she found her workplace her place of peace. She had a strong sense of purpose there, and she saw results from her hard work and focus. Her mind was sharp and her discipline and dedication even sharper on her mission.
After her death, her FBI family came out in the hundreds of people, making her funeral look like someone in the White House must have passed. Shortly thereafter, her local team held a formal gathering to christen a conference room in her name. Her commitment and drive, remembered; her person, loved.
Health care and medicine: 2016
Describing companies as ‘disruptors’ in this space is akin to explaining the effect of a gnat on an elephant’s ass (a saying my sister loved to repeat). Leveraging the power of technology and passionate member-communities for offering a better system of health care and ultimate individual health is not justa “disruption”. Are visionaries like Elon Musk, Ada Lovelace, Joseph Licklider and Steve Jobs just ‘disruptors’? IMO, hell, no. There is a shit-ton more than mere disruption happening when it comes to SpaceX, Tesla, computers, the Internet and that handy device in your pocket that controls your home-alarm system.
Healthcare systems, their interoperability, medical device technology, drug delivery methodologies, the personalization of and use of genomics, customized body health monitoring, the role of AI and machine learning for the prevention, management and reversal of disease; how these are turned upside down and made better, easier, less painful and more effective (for patients, caregivers and health care providers) will have effects that are still indescribable. And yes, some things are already happening — but it’s merely at the tip of the proverbial ice-berg. Case in point: Despite new sensors that tell us our steps taken, our heart beat, and the sugar content in our blood, our obesity problem (whether in the US or abroad) has only continued to rise since 1970, and along with it, the millions of cases of childhood obesity and diabetes (1 in 3 kids are now overweight or obese in the U.S.). Even our access to coaches-on-demand can’t keep us out of the drive-thru lane when we’re heading home from a long day at work. It’s great that devices are being developed and used to help people manage a disease (like, diabetes) potentially resulting from of a bigger problem (like, obesity). But our really big win will come when we move beyond just giving people their data (no matter how sexy the packaging). It’s in the development of our technology solutions, when we consider the fundamentals of psychology, social sciences, ease of use, public policy and cultural norms that influence lifestyle choices that cause things like obesity, or patients not taking their medicine, where we will be winning.
There are more Elon Musks amongst us. It just takes a massive set of balls to unleash that inner beast. Cause there’s a line from here to Sunday of people, rules and companies waiting to stomp down the wicked persistence, going-to-do-it-anyway attitude it takes to make some of these big wins happen.
People like John Nosta, Eric Topol, 23andMe, the team behind DellMedical School, Cory Kidd at Catalia Health, Walter and Sam de Brouwer at Scanadu, the team at Affectiva, iHuman Patients, CaptureProof, and many more are thinking about these things now, and introducing exciting new technologies, ideas, and processes that unleash new ways for solving some of our healthcare challenges.
What I’m particularly interested in are the ones that look beyond the narrowly defined, often-favored “digital” part of health. Catalia Health’s CEO, Cory Kidd, for example, came at his invention with a more systemic, whole-person approach and uses the important and deciding element of human psychology and human-centered design thinking to answer the issue around patients taking (or not taking) their medicine. This perspective is not a nice-to-have, it’s a Must-Have. EHR’s [digital by nature] have definitively shown us, it’s not about the technology that drives engagement.
To what end are we comfortable pushing the limits, setting aside certain archaic regulations, lowering the costs, and removing the conventional thinkers, that prevent us from successfully practicing the Elon-Musk-School-of-Going-Big-And-Making-It. (For reference, Elon Musk: Tesla, SpaceX, and the Quest for a Fantastic Future by Ashlee Vance. )
There will be millions of people, if not billions, of people who one day soon will be the recipients of all this effort. They will avoid the onslaught of chronic disease sooner, be pain-free from and treated for those diseases with less suffering, and paying less to get there. Their care-givers (health care professionals or otherwise) will feel less powerless, share an equally desired outcome, be more engaged and less financially constrained, all in service of preventing or extending good health.
Getting there will be, at best, a massive personal challenge and at worst, cause for the continued loss of time and lives. The effort will require courageous leaders to demand more of employees (and themselves), who are supremely disciplined and insanely focused, investors who stand with such seemingly insane practices and leaders, and then everyone together proving that the thing built really does change the end point (not the surrogate), so screw any antiquated rules and regulations, designs, systems or processes we had to break to get there.
I’ve had 11 years of work and life experience prepare me for the ways I can and will be an advocate for, and powerful contributor to, making health and wellness less about pain, and more about actual care and prevention. And I’m flush with adrenalin and hope when I read about what is getting done in the digital health space now.
I believe what killed my sister will one day never kill another sister, mother, daughter, wife, friend or cousin. The selfish part of me wishes sis was still alive to be a recipient of the brain power, talent and ambition that will result from these new medical break-throughs, systems and processes that come from such different ways of thinking and leading.
All I know is, however and whenever I contribute to these efforts, fueling my every step will be my sister’s questions to me in the last days of her life: “What is happening? When will it stop?
