View of USNA Worden Field and Rodgers Road from Hill Bridge.

Senator John S. McCain, III — American patriot, leader and hero — reported to his final assignment today at the United States Naval Academy. He will be laid to eternal rest at the academy’s cemetery on Ramsay Drive. It’s a beautiful place, surrounded by the Severn River, College Creek, and views of the parade field and the Academy’s distinctive architecture. The Naval Academy is a one-of-a-kind place, and graduates, who are known as midshipman during their academic years, are unique.

My family had the good fortune of spending four years at the Naval Academy when my father served as commanding officer of the Dental Clinic. We met our first midshipman before we arrived. In fact, he was standing in front of 50 Rodgers Road when our moving van pulled up — he literally came with the quarters! My parents gained another son that day, and my brothers and I gained just one of many new big brothers and sisters who continue to be part of the family today. As sponsors, we welcomed young men and women from around the country into our home and hearts. One was a swimmer. One played football. One went nuclear power. One went Marine Corps. Several became aviators. Each had that special “Mid” brand of humor and twinkle in the eye that characterized the intelligence and grit they possessed to succeed at the Naval Academy and beyond.

Although I didn’t know Senator McCain, I’ve always admired him and appreciated the ever-present midshipman in him. It’s a kind of curious good humor that respects authority but may require testing the bounds — because you just never know until you try, right? My older brother and I once enjoyed a spontaneous tour of the steam tunnels running under Bancroft Hall. (Pretty sure that was not “allowed.”) My younger brother, at age 4, was the world’s youngest Plebe and enjoyed a camaraderie with these future officers that defied age. At any time of the day, one or a half dozen of our Mids might arrive for a touch of home, including mountains of chocolate chip cookies and homemade popcorn. We loved it as much as they did.

Senator McCain touched my heart for another reason linked to the Naval Academy. Our quarters were on Rodgers Road, with the parade field as our front yard and College Creek to the back. Two of our neighbors, as well as the Superintendent at the time, were former Vietnam prisoners of war. Yet they were our neighbors, our parents’ friends, and their kids were our playmates. In such a unique place, extraordinary people lived regular lives that were, in fact, indescribably exceptional.

Our kitchen window faced College Creek. Nearly every day of the year, my mother had a view of midshipmen running for PT and others rowing crew, since the boat house for the crew team was directly across the creek. From time to time, she would remark “funeral today,” as a procession made its way over the bridge to the cemetery on the other side. This morning, I talked to her as we both watched MSNBC’s coverage of McCain’s funeral procession heading to the U.S. Naval Academy Chapel. Reminiscing about her kitchen window she said, “Those days, I always ended up with a migraine.”

To me, that comment gives great insight into what it is to be a military family. We ARE family, both within our particular service branch and across them all. We are family. The love is real. Each funeral procession is personal.

Last year, I did meet Senator McCain by chance. It was an experience I’ll never forget and always cherish. He was so very kind and real, with that bright midshipman’s twinkle in his eye. Surviving hardship as he did is one thing, but thriving to create such an impactful life of service is a level few attain. Once a Mid, always a Mid.

May the lessons of John McCain’s life help guide America, and may he rest in peace under clear skies on the Severn.


20171215_235435Several weeks ago, I crossed paths with Senator John McCain at Walter Reed National Military Medical Center (WRNMMC). I was star-struck, and missed an opportunity to share an important message on behalf of Americans like me who rely on medical researchers and specialists in order to live a life worth living.

At the time I saw Senator McCain, I was distracted – for good reason. Earlier, in search of parking, I came across a space designated with a sign I’d never seen before. The space was reserved for surviving family members, in other words, Gold Star families. It knocked the wind out of me to know the car leaving the space was a family whose son or daughter, dad or mom had died in the line of duty. I slammed on my brakes. I hadn’t known this reserved spot existed and was embarrassed to be attempting to park there.

I drove up a level or two and parked, then walked back to the sign. It read: “RESERVED for Surviving Family Members. Please respect this spot and their sacrifice. Honoring our families of the fallen. Commander, Navy Installations Command (CNIC). Fleet, Fighter, Family.”

Thinking about the surviving families, I felt powerless. I had a bottle of water so dug around in my purse for a tissue to clean the placard. It was a very small gesture to pay my respects at the moment. I took a photo to show my sons to help them understand the way Americans revere our Gold Star families, in contrast to the poor example the president has shown. The year 2017 has been a difficult one to be the mom of two sons; so much ugliness to help them make sense of and endless lies to combat.

As I walked through Building 10, I grew angry. How was it possible that in one short year, so many of our country’s beliefs, institutions, values and integrity had become tarnished, if not completely destroyed? Never could I have imagined the abuse the Gold Star families of Capt. Humayun Khan and Sgt. La David Johnson endured. Never.

Waiting for the elevator, I tried to focus on all I needed to discuss with my mother’s doctors. She had a grapefruit size hematoma impeding her bowel, kidney and bladder function. We all were at a loss for answers. Our family tends to have “rare” health issues, so each crisis can be a perplexing unknown.

The elevator chime rang. On reflex, I stepped back to make way for wounded warriors and other patients. This morning, there was only one. In a red transport chair, wearing the same WRNMMC pajamas as my mother, sat Senator John McCain. My surprise must have been obvious! His sharp military aide, manning the wheelchair, smiled. Senator McCain gestured as if to say “after you,” so I scurried on the elevator not registering this wasn’t the elevator I wanted. As the doors closed, I peered out and for some inexplicable reason, gave him a thumbs-up. He graciously grinned, or grimaced. I was mortified.

The elevator headed to the basement. I grasped my error, and on the way back up, the doors opened to reveal Senator John McCain. We all laughed. Our fellow passenger was a cafeteria worker who was heading up to collect trays. Clearly familiar with one another, they shook hands and exchanged warm hellos. Then Senator McCain kindly accepted our encouraging words and thanks. He did look good, albeit tired. We both appreciated his “thumbs down” on the skinny repeal of the Affordable Care Act. We meant it about needing his help. Hang in there, the man said. One day at a time, I said.

In hindsight, Senator McCain, I wish I’d had the chance to share with you what we have in common. Growing up in a career Navy family. Living at the United States Naval Academy. Surviving close calls. Supporting our armed services and Gold Star families. Battling rare disease. Working to serve others. Fighting for our own health. Relying on research. Pushing ahead, even when surrender might seem easier. Maybe my story would stay with you as you continue your work to honor this great nation you’ve helped create and protect.

In my heart, I believe you’ll remember those of us who will suffer if the current climate of self-interest, fraud and abuse of our democracy continues. I saw how genuinely you greeted the gentleman in the elevator, who earns his living feeding the sick and cleaning up for them. His words, softly spoken, speak for us all: “We’re counting on you, sir.”

There is still another day, Senator McCain. And the wish I wish for you tonight is peace.

In 2016, I had the honor of speaking at the Congressional Briefing of the Coalition for Women’s Health Equity at the U.S. Capitol. Please listen to my story and do what you can to support sex-specific research of cardiovascular disease in women.

Coalition for Women’s Health Equity
Congressional Briefing
May 12, 2016

Good morning. My name is Katherine Leon. At age 38, I survived a heart attack caused by spontaneous coronary artery dissection. To make the most of my second chance at life, I became a WomenHeart champion. Today, I am co-founder and board chair of SCAD Alliance.

As a woman with heart disease, I’ve thought a lot about what the term “equity” means. Equal? Balanced? Fair? We all know life is not fair.

So what do we do? Some of us pretend. Some of us hope. Others strive. If you have almost died at a young age, you strive, because you know that life does go on without you.

I remember. I was home from the hospital healing from emergency double bypass surgery and an infection in my leg where the second bypass graft had been harvested. I wanted to take care of my baby, but physically could not get to him or use my arms while my sternum healed. A college student we’d hired played with my 2-year old outside. There was nothing I could do. It was like being a ghost. Life went on.

Thankfully, I did have amazing support and survived. The experience made me determined to find the cause of SCAD and prevent it from happening to others.

I want to stop the misdiagnosis and disparities in care that I’d experienced. My heart attack symptoms had been dismissed by my OB/gyn, my internist, my sons’ pediatrician, the lactation consultant … none were curious. They all basically said “Get over it.”

Despite the fact that eighty percent of people struck by SCAD are women, no one took a second look at me. I was repeatedly told by doctors: “You’re young. You’re healthy. It’s not your heart.” It took 2 trips to the ER to get admitted and another 3 days until a test was done to find the 90% blockage of my “widow maker” artery. During those 6 days, while my heart tissue was dying, I was patronized. Dismissed. Viewed as a drama queen. An “anxious female.”

Heart disease remains the #1 killer of women

Disparities and inequities persist across diverse populations of women
Our public health strategies and health care systems continue to carelessly ignore sex and gender differences in research, prevention, diagnosis and treatment

The systems and strategies must change to effectively reduce the burden of heart disease in women

To me, health equity means striving together to achieve the best possible reality for all. On behalf of the 43 million women in this country whom I represent, WomenHeart: The National Coalition for Women with Heart Disease applauds the formation of the Coalition for Women’s Health Equity.

Thank you.

“If the Civil War were still going on, I’d shoot you dead.” These were the words my mother heard from the first person she interacted with in South Carolina — a grocery store clerk — in 1976. The clerk was white. My Indiana born and bred mother of Irish-English-Scottish descent is whiter than white. The moving truck had left our quarters on the Charleston Navy Yard an hour before, my dad was at work, and mom took us kids – 12, 10 and almost 1 – to the Piggly Wiggly for some milk, eggs, and a loaf of Sunbeam.

As is the case with many military bases, the adjacent neighborhood was sketchy at best. Red light district. Seedy bars. But my mother was exhausted, her kids were hungry, and she was doing her best. The check-out clerk? Obviously not the sharpest tool in the shed, but her motivation was not ignorance. Her motivation was hatred, hatred of anyone who wasn’t her kind – whether black or white. The sight of a “Yankee” address on a check motivated the Confederate in her to issue that death threat to a total stranger.

In the heart-wrenching weeks after the massacre of nine Charlestonians at Emanuel African Methodist Episcopal (AME) Church, I’ve been reading and thinking about the Confederate flag controversy. Over and over, supporters of the flag claim it is a symbol of heritage. Opponents say the flag reflects racism of the worst kind. Each side stands by its own truth. But here is the question: Should our culture celebrate a symbol of heritage if its origin is hate?

The answer is: No.

Heritage (from Old French, “heriter,” to inherit) refers to “valued objects and qualities that have been passed down from previous generations.” We — no matter what our nation, creed or color — we cannot continue to allow hatred to be a valued quality that we pass from one generation to the next. Our time living on this Earth is short. Our charge while alive is to better the world for others. Hatred has no place here. Achieving this ideal is up to each of us.

Following the lead of Charleston as she mourns, we must put the enduring wounds of history in context. Our time is short. We must teach our children well: hatred is not heritage.

Blindsided by SCAD: Spontaneous Coronary Artery Dissection.

(Reprinted from the Uplifting Athletes blog)

Uplifting Athletes supports the larger rare disease community in addition to the rare diseases our 25 student-athletes led chapters champion. We welcome any rare disease organization to share their story with our audience. Spontaneous Coronary Artery Dissection (SCAD) is a rare, sometimes fatal traumatic condition that causes heart attack. The coronary artery develops a tear causing blood to flow between the layers, which forces them apart. Nearly 80 percent of SCAD cases affect women. The SCAD Alliance raises awareness and focuses on collaboration in the quest to empower survivors and health partners in the fight against this rare disease.

By Katherine Leon

It’s rare. You either die, need a heart transplant or get lucky … like you.

These words, spoken by my well-meaning cardiologist, still ring in my ears 11 years later. I say well-meaning because his intent was a bit of tough love to jolt me back to the business of caring for my newborn and 20-month-old sons.

But he wasn’t the one who’d had what is referred to as a “widow maker heart attack” out of the blue caused by a torn artery.

He wasn’t the one who was 38, never smoked, had pristine arteries, and lifelong blood pressure of 94 over 60.

He wasn’t the one who was struggling to recover from emergency double bypass surgery and a detached rib – collateral damage of the surgery.

And he didn’t have to worry if his kids would someday have a heart attack from a rare event that is now called spontaneous coronary artery dissection (SCAD).

My doctor had no pamphlet for me because he said the cause of my heart attack had never been researched. It was too rare to research.

In fact, he said I’d never meet another person who’d had SCAD.

It was really hard to understand that in 2003, a heart attack killing someone at such a young age had never been researched.

That day I made up my mind. Before I checked out of this world, I would get research started and make sure that anyone else diagnosed with SCAD would know exactly what happened, why, what to do about it, and – hopefully – how to prevent it from happening at all.

I would find the patients and bring them to the researchers. It seemed logical. If the reason SCAD hadn’t been researched before was access to survivors, how could researchers say no if the patients came to them?

My good fortune was to be alive in the age of the internet and searching online became my obsession.

When the boys were asleep at night, I would search for any and all terms related to heart attack, torn artery, dissection … whatever I could think of to find fellow SCAD survivors.

It took several years to find the first few people, but once our conversations became searchable in Google, the numbers began to grow. By 2009, I had a document that summarized the experience of more than 70 SCAD survivors worldwide and several family members of those who had died.

With data and a research agenda, I pursued an opportunity to meet a researcher.

While attending a heart disease symposium at Mayo Clinic, I got up my nerve to ask a cardiologist to be the first to research SCAD. From her background and role at Mayo, she seemed like the one person in the world who might just hear me out. And she did. It didn’t bother her that my fellow patients were people I’d never met in person.

She threw herself into the task of researching SCAD using participants I’d recruited on social media. After an intensive Institutional Review Board process, Mayo approved first a pilot study. And in September of 2011, a global registry of SCAD patients and a DNA biobank was launched.

The registry has grown to include nearly 400 participants. The DNA biobank holds several hundred samples.

Other institutions worldwide, including the University of British Columbia, University of Leicester in the United Kingdom, and Massachusetts General in Boston, have now launched clinical studies of SCAD as well. But there is a problem.

As encouraging as this progress sounds, every day patients go undiagnosed as we wait for the research to find answers. It is still common for patients to be told the heart isn’t the problem.

We’re young. We’re athletes. We don’t have traditional risk factors for heart disease. Doctors and emergency departments must be on the watch for SCAD.

Our average is 42 but we know men and women as young as 20 who are struggling with the aftermath of SCAD, which includes everything from depression to even heart transplant in some cases.

We must educate doctors while the science develops. The more we educate the more lives we save by preventing heart attack and sudden cardiac arrest from SCAD. That’s the mission of SCAD Alliance. Help us stop the blindside.

[This article was originally posted on Forbes.com.]

 3/03/2014 @ 11:51AM 1,959 views

Woman in the ER — Cue The Violins!

Why is it when a woman with chest pain enters the ER, the waiting room soundtrack switches from ‘80s soft rock to dramatic symphonic numbers? Even in 2014, it’s not unusual to sense a weary sigh among staff that yet ANOTHER woman “thinks it’s her heart.”

Well, it most likely is her heart. Heart disease is the number one killer of women, more than all cancers combined. Why is this still the case despite 15 years of WomenHeart, 12 years of the NHLBI’s Heart Truth campaign, and 10 years of AHA’s Go Red for Women? How can this be?

The ER doc who sent me home after I arrived at the hospital by ambulance with classic heart attack symptoms may offer a clue. As he completed my discharge papers, he explained, “It’s not our job to find out what’s wrong with you. Our job is to tell you what isn’t, and this isn’t your heart.” He pointed out the obvious (at 38, I was “almost 40”) so should get my gallbladder checked.

At the time, that struck me as an odd perspective from a medical professional. It’s one of those surreal moments etched crystal clear in my memory. Sure, it was 4:30 p.m. on a weekday and I was in sateen pajamas and a not-so-pretty nursing bra. And yes, I was definitely anxious and nauseous, but acid reflux didn’t quite fit with the experience I’d had that day. I’d finished breastfeeding my 7-week-old and was hit by a Wile E. Coyote-caliber anvil on the chest that mashed the air out of me and sent pain through my upper back and into my jaw. My arms went numb. I did in fact have a heart attack that day, and another three days later. Finally, on the sixth day, I underwent a cardiac catheterization and emergency double bypass surgery to repair the damage caused by Spontaneous Coronary Artery Dissection (SCAD), an increasingly recognized form of heart attack and sudden death, predominantly in women.

In contrast, the ER staff knew quite well that day what was wrong with the guy a few curtains over who was cracked out on PCP. Did they do a few scans, labs, and send him on his way saying, “It’s definitely not the drugs. Go see your internist.”? No, he hung out all day and seemed to be having a fabulous time harassing the nurses and exposing his genitals to anyone in range.

So perhaps the deck is stacked unfairly. Yet a snapshot of heart disease in women shows the urgency of our situation:

  • Heart disease kills 1 in 3 women. That’s approximately one per minute.
  • Ninety percent of women have at least one risk factor for developing heart disease.
  • The symptoms of heart disease in women often differ from those in men, and may be misinterpreted as a result.
  • Only half of women would call 9-1-1 if experiencing heart attack symptoms, but 79 percent say they would call to help someone else.
  • In the past 30 years, the rate of men dying from heart disease has gone down, but the rate of women continues to increase.

What do these stats tell us? To me, they firmly suggest that women need to step up. We need to apply the same care and concern to ourselves that we do to a partner or our children. To put the situation in perspective of the workplace: if a woman is at risk of losing a promotion to a coworker, would she draw the curtains, crawl into bed and resign herself to the loss? No. And if she would, then we have more fundamental issues to address as women before we can conquer our heart disease crisis.

Health care providers share the blame, and key elements of physician training must be fixed. We must determine what causes doctors to minimize patient concerns. What mechanisms can we put in place to supplement poor communication skills in both parties? How can compassion be built into the system, regardless of personality traits and prejudices? This isn’t just a matter of thinking outside the box; this requires an entirely new space — a sphere of ideas. Doctors need to understand what it is to be a patient, in every sense of the word. And women need to value themselves enough to demand the respect and care they deserve.

“It’s not our job to find out what’s wrong with you. Our job is to tell you what isn’t, and this isn’t your heart.” I can still hear those words, with a crescendo of violins in the background.


Katherine Leon is co-founder of SCAD Alliance, a nonprofit devoted to improving care and outcomes of Spontaneous Coronary Artery Dissection, an under-diagnosed cause of heart attack and sudden death. Katherine survived SCAD, heart attack, and emergency double bypass surgery after the birth of her second son. The ordeal marked a new beginning for her as an advocate for patient empowerment, women with heart disease, and her fellow SCAD patients. She initiated the first large scale, single-center research of SCAD in 2010, and continues to support survivors, their families, and health partners. @SCADalliance


Art Linkletter thoroughly proved that kids do say the darndest things. But when it happens at your own dinner table, you definitely must take stock.

I realized tonight that despite my valiant efforts at “normalcy” (whatever that is), I really wasn’t fooling my 10-year-old. He stated right to my face that he’d had quite enough of my meanderings through the healthcare system.

In response to my explanation about an upcoming hospital stay, he didn’t miss a beat: “Is it life-threatening?”

This is the kid who cuts me no slack. He’s the one who looks for buttons to push, always finds them, and even creates new ones. Face of an angel, soul of a hurricane. So, his question was a good one. Because yes, without the hospital stay, it is life-threatening. But with it, we — as a family — have fewer worries.

So the challenge as a mom is to not take this personally and to inject some humor. Does he really care that I’ll be away overnight? Of course not! It means late bedtime and possible x-box. Does he love me? Of course he does! I’m his mom.

Would I have it any other way? Not on your life.

It is Thanksgiving eve. Despite the recommended four-day refrigerator thaw, my bird is still frozen. While he takes a salt bath to “chillax” a little, I’ll be making a pie and prepping brussel sprouts. But, before I do … a moment at the keyboard.

This holiday will be the first for my family without my grandfather and my older brother. I was able to write a tribute post to Granddad but can’t yet put my brother’s passing into words. I’m not sure that I ever will.

There is something ultimately unfair that the 97-year-old died hale and hardy from complications of a fall, while the 50-year-old withered away in six months from cancer. A few days before his death, Granddad was whistling for the dining room waitress to bring him his chocolate pudding after each meal (poor form, but he did have a charming, dairyman’s way about him). A few days before my brother died, he was in hospice, writhing in unrelenting bone pain from esophageal cancer, which had metasticized to his lungs, kidneys, liver, spine…everywhere, it seemed, except his poor, suffering brain.

Oddly, in a way, they went together—just a few months apart. The day I helped transition my grandfather from the hospital to the hospice on the West coast of Florida, my brother confided he was too sick to make it over from the East coast to say good-bye. His back hurt terribly and he couldn’t keep food down. He said he preferred to remember Granddad as full of life as he was, so he wouldn’t make the trip. My mother and I urged him to go to the ER. He said he would let us know how he felt.

By the time my grandfather died, my brother had gone back to his internist, who sent him directly to the ER, which immediately admitted him with Stage IV esophageal cancer. I still don’t understand it. Probably never will. He was discharged to endure four months of cyberknife surgery, chemo, and radiation. The only time he admitted he was very ill was on the drive from the oncologist’s office to the hospice.

Realizing this is not the most “peppy” Thanksgiving post ever, my message is this: give thanks for what you have, when you have it. If we take competition and comparison out of the equation, we can each say we have lived life to the fullest. Life, ultimately, is a journey of one.

And now, back to the kitchen. Wishing you a peaceful Thanksgiving, full of who and what you love.

“That which we call a nose,
By any other name would smell as sweet.”

Or “sweetly,” depending which way the wind blows.

Apologies for mixing poets, metaphors and verb forms, but that’s just the kind of summer it’s been. It’s a time of mourning with lots of loss, sickness, life changes, and now my nose. It’s no longer the nose I was born with, thanks to heredity and youthful stupidity on sunny beaches years ago.

My nose has been called many things over the years. Ski slope. Kitty. Pug. But I always loved it, small and turned up as it was. When I was four years old, we were in Philadelphia getting off a city bus to see a tourist site. A woman stopped my mother and said, “If I had that little nose, I would hold it up in the air as high as I could.” To her, it was the perfect nose and deserved to be worn proudly.

With biopsies and band-aids leading up to the surgery, my secret sorrow has been on display for several weeks. But on Monday at the surgical center, grief took center stage. When the doctor began the numbing shots, I let out a wail and commenced braying like a stuck donkey while hyperventilating my way through sheer mortification. How perfect to be in the first treatment room, kitty corner to the front desk and adjacent to the waiting area. Do you apologize? Laugh it off? Keep crying? I tried a combo approach.

But wow did those shots hurt, way worse than the ones for the biopsies. My second round of weeping began after the tissue analysis. The good news was, the first two Mohs samples had removed all the cancerous cells. The bad news was, as I looked down at the diagram she drew of the recommended reconstruction, I could see the two bloody pits where nose used to be! Eeesh.

I was on board with the reconstruction plan, but then again — how could I not be? Who am I to argue with the woman who holds my hope for a complete, healthy nose in her talented grasp? Since my teeth were aching and we definitely didn’t want me braying again, it was time for more shots.

Incisions were made, tissue tugged and placed, and two rows of stitches completed for each closure. The first round of each suturing made a clicking sound; the second was good old-fashioned needle and thread. Somewhere along the way I asked if they could please just hit me on the head and knock me out, but that wasn’t an option.

As the final step in each phase, the smell of cap guns filled the air as the surgeon cauterized “for a better cosmetic result.” She was aghast at my comment but I thought everyone of a certain age had owned a cap gun as a kid. The technician agreed with me: caps, which definitely beats thinking about what we were actually smelling!

By the time I was waxing poetic about the complete Laura Ingalls Wilder series to keep myself distracted, the surgeon began sawing off my ear. Not really, but it sure sounded like it. As she cut the graft to fill in the left side of my nose, her assistant cranked up the best hits of the 1930s and ’40s. (Note: cardiology and skin cancer offices cater to a similar demographic.)

What an ordeal — for us all! I feel so fortunate the philosophy of the Skin Cancer Surgery Center is very caring, hands on, and patient centered. (But I really do wish they had knocked me out; actually, they probably wish they had too.)

I talk a lot about post traumatic stress disorder in SCAD patients, and do believe it plays a role in our recovery and future health care experiences. It was so comforting that the surgeon took time to hear my feelings about earlier scars from open heart surgery. Her reassurance that she will do whatever it takes to heal my nose successfully is heartening. At 48, I plan to have several decades left to wear my nose proudly through life.

I just hope I don’t sneeze for another year or two.

For more on the various forms of skin cancer, symptoms, and treatment, check out: Skin Cancer

Granddad Bass OriginalYou are probably familiar with the African proverb “it takes a village to raise a child,” popularized in America as the title of Hillary Clinton’s book in 1994. Over the years, it began to take a village to do most anything — yet a cliché stops being a cliché the moment our experience speaks to its meaning.

Recently life taught me it DOES take a village. Birth, growing up, survival, death – it all takes a village.

A few weeks ago, my 97 year-old grandfather fell for the last time doing things his way (let’s just say he insisted on standing and letting go of his walker). He broke his pelvis, collarbone, and elbow (again). While in the hospital, he developed internal bleeding and sepsis. By the time we arrived, his speech was unintelligible, but he could nod and shake his head to communicate. (The last words we understood were those when he saw my mom, greeting her one final time with his trademark, “Hey babe.”) All things considered, our last few days together were good ones. When he was awake, his eyes were bright. He laughed at a joke. But severe seizures had set in and it was time to make the decision.

I was astounded by the care and concern of each person we met – nurses, technicians, respiratory therapist, transport staff, hospital social worker, and internist. In their own ways, they gently urged the right thing for him, which was inpatient hospice and palliative care. In hospital, they were doing their jobs and treating symptoms – even doing a CT scan to try to determine the cause of his seizures. In hospice, he would receive pain medication to control the seizures and peacefully pass.

The hospice staff each were angels personified. I could have never imagined that such a place existed and that people devoted themselves to the delicate transition between life and death. I brought my grandmother to spend two afternoons with him, and she held his hand reliving their life of more than 77 years together. And then he slept.

Granddad’s experience sounds almost like the perfect way to go. Yet how many of us will be so fortunate? He was a cat with nine lives, and toward the end, was helped by my mother, my grandmother (who, even at 95, doted on him), the staff of a wonderful assisted living facility, rehab therapists, a part-time caregiver, and ultimately strangers – the staff at the hospital and hospice. I believe it is a tribute to him and all that he did for others in his lifetime that he lived so long and touched so many.

Today, we are fortunate that the village extends to the virtual world. If my grandfather had been born in 1966 instead of 1916, perhaps when he had his first heart attack at age 46, he would have told his family instead of keeping it a secret until his second one decades later.

In family lore, his “spell” was nerves, and the doctor advised him to find a hobby. In true dairy farmer fashion, he decided to fish. Never mind that he had no place to fish. He dug out not one, but two ponds on his 80-acre farm and stocked them with bass and bluegill. Some of my fondest memories are of fishing with my grandfather. It took until I was 28-years-old to finally catch a bass, and he was so proud of me. It was 6 pounds 10 ounces, rivaling the 8 pounder he hooked when I was small.

If his heart disease happened today, maybe he would go online to explore what to do to prevent future heart attacks. Or maybe, his mystery heart attack was a spontaneous coronary artery dissection, or SCAD, like mine. Today the technology exists to know the answer. In Pimento, Indiana, circa 1962, the doctor handed him unidentified prescription pills in a pocket-sized brown paper bag with instructions written by hand. Everyone did what “Doc” said, even though they weren’t exactly sure why. His advice to go fish, though, you can’t argue with that.

Granddad — your village misses you!