In life, you learn to stitch together those loose threads. You know the ones that hang all snarly, looking at you as you look back at it. You take a needle, move it in and out, passing through the tangles and the knots that can be so beautiful even when they are such a mess.
Then, to your surprise – the passes become smoother, the real unsightly threads become tighter and stronger. They begin to work together. The holes begin to fill in, the pattern begins to take shape; you start to take shape.
It takes a lifetime to take shape.
I am honored to be a former patient of Dr. Warren Warwick for 27 years.
The first time he spoke of the possibility of a cure, or the dawn of a cure, was in 1989 when they found the CF gene, naming it the cystic fibrosis transmembrane regulator (CFTR). The mapping of the human genonme had still years to go – but the location of the CF gene meant they had a target.
“You will find a cure in your lifetime, Tessa. But, you must work hard,” he looked at me with the most sincere focus. With a nod. With an unspoken agreement as if, “I can do this.”
So, I ask – how does one thank one of the most significant contributors in the treatment of cystic fibrosis?
Besides all the unsaid accomplishments, he created a new stethoscope – a stereo-stethoscope (I remember this well). It had two bells dangling from it to create a built in sound delay that transmits lung sounds in stereo. This came to him while listening to a church choir.
Dr. Warwick also created a new cough. I remember practicing with him, and to this day, I still have the instructions, and of course – it still works.
Then, his most accomplished invention is the chest compression vest. Then, years later he re-invented it once with a more precise design. Today an estimated 45,000 patients with various lung diseases use it. The greatest invention to finally gain independence, while not short-changing your health. Freedom at last.
Dr. Warwick’s in-depth, complex, layered, yet all-inspiring teachings and mentorship shaped me as much as his medical guidance.
When I faltered he never blinked or ridiculed. He reasoned and listened. He gave me his full attention for however long I needed it. He graphed and did the pencil test with my PFTs, always asking – how can we improve? When the dips appeared, why and how? What is going on in my life that may contribute to that? How can we proactively curve the challenges? Did we change a medication, when and where in what time frame?
I worked in medical records when I was attending school and my lungs dipped unexpectedly, although I had a noticeable new cough. After 2-3 months of trial and error, isolating all factors – he sat with his legs crossed, shaking his head puzzled, and then he said, “Remind me where you work?” I said, “Medical records.” He replied, “They had a flood. They have mold. That is it.” Soon after I was reassigned to a different area in the hospital and my lungs peaked once again to what they previously were.
Dr. Warwick was a scientist through and through.
I truly cannot do this kind man him justice. I want to share a couple pages from this book a friend loaned to me that makes me feel extremely nostalgic and grateful. I can hear him and see him like I saw him yesterday.
“The thing about patients with CF is that they’re good scientists,” Warwick said. “They always experiment. We have to help them interpret what they experience as they experiment. So they stop doing their treatments. And what happens? They don’t get sick. Therefore, they conclude, Dr. Warwick is nuts.”
But let’s look at the numbers, he said to me (Gawande, the author), ignoring Janelle (a young adult that had a sudden dip in her lung function, as they search for the reason). He went to a little blackboard he had on the wall. It appeared to be well used (as it always did, every appointment; erasing previous teachings from his previous appointment.)
“A person’s daily risk of getting a bad lung illness with CF is 0.5 percent.” He wrote the number down. Janelle rolled her eyes. She began tapping her foot. “The daily risk of getting a bad lung illness with CF plus treatment is 0.05 percent,” he went on, and he wrote that number down. “So when you experiment you’re looking at the difference between a 99.5 percent chance of staying well and 99.95 percent chance of staying well. Seems hardly any difference, right? On any given day, you have basically a one-hundred-percent chance of being well. But” – he paused and took a step toward me (Gawande)– “it is a big difference.” He chalked out the calculations. “Sum it up over a year, and it is the difference between an 83 percent chance of making it through [the year] without getting sick and only a 16 percent chance.”
He turned to Janelle. “How do you stay well all your life? How do you become a geriatric patient?” he asked her. Her foot finally stopped tapping. “I can’t promise you anything. I can only tell you the odds.”
Gawande continues – “In this short speech, I realized, was the core of Warwick’s worldview. He believed that excellence came from seeing, on a daily basis, the difference between being 99.5 percent successful and being 99.95 percent successful. He continues, “Medicine’s distinction is that lives are lost in those slim margins” (Gawande, 221-222).
That is Dr. Warwick.
The bar is set at 110%. You strive above always. He confided in me one day, “Patients do about 80-85% of what is expected of them, sometimes lower. You must set the standard higher.”
“How many glasses of water do you think you need to drink in a day, Tessa?” he asked.
“I don’t know. Eight, ten, twelve . . .,” I said.
He does not flinch.
“Fourteen, sixteen?”
“Eighteen to twenty,” he said. “That way I know you will get in about sixteen,” he said with a smile.
You wake-up, you work hard, and then you work harder.
You also rest and play hard – but you work hard if not harder the next day.
Each component in life has to work with the others, falling-in tune. Soon, for me – the days turn into weeks, weeks turn into months, and months into many years.
As Dr. Warwick has said many times – “The body never lies. The body never forgets.”
You aren’t working for today, but for all the days ahead of you.
You turn on that treadmill, and you kick it up a notch. You breathe, sweat, kick up more breath, sweat and you work harder. You rise earlier than the rest and you push it. You don’t complain, at least try not to. I mostly don’t, but I am not perfect.
I could work harder. I should be working at 110%, not 90% which I have been doing for a while. I have to fine-tune some gaps.
I am strong, but I could be stronger. I need to sharpen my mind; my endurance and ambition.
To my dear, dear former teacher and mentor, Dr. Warwick – My gratitude cannot be expressed in words. You kept me alive from diagnosis till today by you and your teachings, guidance, and brilliance – what more is there to say, except, “You were right – the dawn of a cure is here, and I am here because of all your hard work.”
Work Cited:
Discovery of the CFTR gene. Oxford University Genemedicine. Oxford University. July 25, 2012. http://www.genemedresearch.ox.ac.uk/cysticfibrosis/discovery.html
Gawande, Atul. Better A Surgeon’s Notes on Performance. New York. Henry Holt and Company. 2007.