The Heart of the Matter

Barry had open heart surgery in May. Prior to the surgery he had no cardiac symptoms— no fatigue, no shortness of breath, no pain. Nothing. The surgery is known as a Coronary Artery Bypass Graft (CABG)  and in Barry's case was a triple bypass. He's doing great. We have so much to be grateful for, so many people to thank and acknowledge at UC San Diego Health—I'll get started now.

Tony Lopez MD, Internal Medicine. For years we have experienced your extraordinary diagnostic skills and caring. Last fall you ordered a Cardio CT Calcium Score. Barry's score was 6,000. The score indicating hi-risk for a potential cardiac event within two years is 400. So—you ordered a stress test and referred to Cardiology.  And thus, this often nerve-wracking but ultimately successful medical journey began. Words are insufficient to express our gratitude you ordered that test. Thank you from the bottom of my heart. 

Edward Duran MD, Cardiology. Thank you for your thorough review of test results and medical history, for your explanation of various tests and for your data-driven assessment. We appreciate that you discussed the risks of an angiogram and entrusted the decision whether to have one to Barry. Thank you as well for listening to my why can't you just order a Cardio CT Calcium Score on everyone harangue. Though there is some disagreement about the when and why of ordering such a test— in our view, it was the only indicator something was amiss. 

Lawrence Ang MD, Cardiology. Thank you for your skill in threading a catheter through coronary arteries and for your professional and compassionate explanation of why, in Barry's case, you felt cardiac surgery was the best option. 

Mark J. Kearns MD, FRCSC, Cardiothoracic surgeon. Where do I start? I won't speak for Barry on this since his relaxed, chill demeanor is a far cry from the abject fear I was experiencing. Your calming presence and patient answers to our multiple questions immediately put me at ease. You talked to us not at us. You are professional, kind, confident and competent. When we left that pre-op visit with you I was certain Barry's heart would be safe in your hands. It was—thanks to you and the team in the OR and the ICU.  Shout out to David G., David C. and Ana.  And Kiko, thank you for your efficient and gracious scheduling, rescheduling and rescheduling! 

The staff of the Cardiovascular ICU. What a great team! I practiced nursing for nearly 50 years and have had my share of health care experiences with family and friends and I have never witnessed a more competent, professional and caring group of nurses. Thank you all—especially Sabrina, Mary, Cameron, Colin and Collin.

Barry Greenberg MD, FHFSA, Cardiology. Who knew over two decades ago when my home care agency was caring for your patients, that our paths would cross again thanks to my friendship with your beautiful wife Jennifer? I called her in a panic about that darn Cardio CT Calcium Score and next thing I knew you called Barry and I—and in a reasoned, thoughtful way assessed the situation and assured us there was no urgency. You gave us a gift—the enjoyment of the holidays and every day thereafter as we navigated the tests, procedures and waits. Thank you.

Finally, thanks to all the family and friends who supported us throughout—brothers, aunts, cousins, lifelong friends, Barry's college buddies, my dear tap sistas, a special loaned angel— your encouraging words, prayers, texts, calls, messages, cards, notes, lunches, coffees, wines and more. All of it—every single act and gesture meant more than you know. 

Our hearts are full💓

The Empty

 

Just slightly in front of the weathered shingle cottage on the left and adjacent to the white cottage on the right there once stood a two story cottage called "Lou's Haven" that was Barry's family's summer home on White Horse Beach outside of Plymouth, MA. When the storm known as the "Perfect Storm" walloped the east coast, the cottage, pilings and all, was swallowed by the raging sea. In the two years that followed this catastrophic event my in-laws dealt with some severe health issues and died.  The city declared that the property and thus any rebuilding plans had been "abandoned" by the deceased owners and therefore no rebuilding could occur. Yeah. Turns out cities can be pretty heartless entities—but that's the stuff of another blog. Back to White Horse.

A couple of weeks ago on the way to Hyannis to catch the ferry to Nantucket and a much anticipated girl's trip, my dear friend Mary Lee suggested we veer a bit off track to check out White Horse. I eagerly agreed since I was anxious to see how the working-class beach community had rebuilt. We pulled into the parking lot next to the sugary white sand and followed a quaint boardwalk bordered by small, neat Cape Cod style cottages that were well cared for and welcoming. And then...this empty space— where parties and clambakes and egg tosses and card games and cocktail hours and parents and grandparents and babies and aunts and uncles and friends once were. And now—empty— but for the memories that immediately flooded my mind and soothed my soul.

In the hindsight of a week or so since, that brief detour started a process of self-assessment —what was I feeling, really feeling since my mom's death last December? Quite simply, there was a part of me that was/is just plain empty. I was so focused on the last few months of her life —the traumatic hospital stay, the hospital-acquired wounds, the questionable medical care, the nightmarish home care incidents, the disastrous palliative/hospice care experience (oh yes—all to be detailed if and when I feel up to it). I was so focused and angry and dismayed by it all. Then packing up a household, dividing possessions, planning a service, writing a eulogy. Did I cry? Sure I did—the day before she died, the moment she died, when the funeral home staff took her out of her house as I watched my brothers escort her to the waiting hearse, when I called the regional hospice manager to reiterate (crying/yelling) that what happened to us should never, ever happen to another family. So yeah. I cried. And then—I didn't. 

Everyone grieves differently, I told myself. You had her for two years because of COVID, I'd think. "You were lucky to have her", "you'll have no regrets" friends would say, implying that if/when she died I'd feel some—what?—relief? that I'd cared for and protected her from the dreaded plague? I don't know. In any case, in a post-vaccinated window of time she was able to get back east to her home which she wanted desperately. So did I. And it was all good. Until it wasn't. 

I didn't want to deliver my mom's eulogy. I didn't trust myself. Once I start crying there's no stopping. I cannot cry softly and still speak. In fact, I'm a downright ugly crier. I practiced reading the eulogy over and over and over until the words that I painstakingly wrote and rewrote were just that—words. No crying. Relief.

"You must miss your mother." How many times have I heard that in the last several months? How many times did I ask myself, "do I?" Of course I do. I must.

So many times over the years I've written on sympathy cards, "may the love of family and friends and happy memories help you get through this difficult time." I surely had the love of family and friends. But the happy memories? It seems that once the scanned photos of a lifetime were committed to a slide show for the reception following my mother's funeral, I basically boxed them up. Stopped looking. Stopped remembering. Stopped feeling.  Defense mechanism? Perhaps. 

And now, if you don't mind—I'm going to start filling up my tank😊

Transitions

 We honored my mom this weekend. My brothers and I truly wanted the occasion to be a celebration of her life. I think she'd be pleased. There were tears for sure but mainly a celebration of who she was. As I said in her eulogy, her physical presence will be dearly missed, but...

Mary Lou McCarthy Sullivan

December 17, 1927- December 6,2021

 

Celebration of Life

 

April 23, 2022

 

Good morning.  Thank you for coming to celebrate the Mass and our mother’s life. You knew her as Mary, Mac, Mary Lou, Mrs. Sullivan, Coach, Auntie and Grammie (and to the Grimes girls, she was Big Lou). To Gary, Brian, Gerry and I, she was Mom.

 

At the time I was preparing these words — a friend of mine unveiled a painting exhibit. She had painted a series of beautiful flowers including a daisy, a tulip, and a carnation but there was one painting that really caught my eye. I couldn’t look at it without thinking about our mother. The painting was titled “Dandelion Once.” I ordered a print immediately and began to learn as much as possible about the little flower so that I could better understand the connection. I discovered that the dandelion and my mom have a great deal in common.

 

The dandelion is in the same flower family as the daisy and sunflower. Some people think of it as a weed because of its ability to thrive almost anywhere—oblivious to whether people like it or not.  It doesn’t really care what people think. Each yellow blossom is composed of thousands of flowers ironically called ray flowers. It symbolizes persistence, strong will, courage, resilience, simple joys, good companions and new beginnings. Although petite, the dandelion is very sturdy with an incredibly hardy root system. One author described the dandelion as having gypsy feet and wrote that “she is quite the traveler.”  When the flowers turn to puff balls which are carried by the wind, 100 plus seeds can travel for miles and plant in the tiniest amount of soil to begin another life cycle.

 

Our mom was a strong and spirited woman. She was a talented athlete and passed on her skills and knowledge to my brothers—teaching them to skate and handle a hockey stick and pitch, catch, and hit a baseball. When Gerry wasn’t hitting well and grounding out frequently, she taught him to bat lefty because she said, with his speed, he could beat out ground balls easier. Brian played hockey a few years with Paul Fenton who went on to have a successful pro hockey career. Mom often told me “Paul was a much better player when Brian was on his line!” As for Gary, she never tired of praising his smooth skating and skiing styles— a natural she said. She had a great golf swing and love of the game and all my brothers do as well. I inherited very little of her athletic ability, so the day she admired my golf swing and seemed more than mildly surprised that I could hit the ball straight— I was pretty proud of myself.

 

She was quite competitive and managed to turn some rather mundane activities into some kind of contest—like on her Ireland trips where she was determined to be the first person on the bus so she could save seats for her group. Gary, not the most punctual of us, was very thankful for that. My mom sang Brian’s praises because he was so helpful in herding the group onto the bus on his trip. Gerry’s initiation occurred at Shannon Airport shortly after landing and he remembers it as a contact sport. As far as my Ireland trip, I’ll never forget the sight of my cousins Sheila and Sue chasing the bus down the street in Cork because my aunt Peggy wasn’t as vigilant as her sister about getting her group on the bus!

 

Our mother was an excellent shopper and saver. We were among the best dressed kids thanks to her trips to Filene’s Basement, scooping up sales items at Steiger’s, and being first in line at Marc and Carl’s aka the junk shop. We had a great childhood, due in large part to that dollar-stretching ability—from our long summer vacations at Point O’ Woods to skating and skiing gear, team and club memberships and so much more—we never felt we lacked for anything.   

 

Mom was always on the go and rarely sat still. Her sister Ellen says that dinner would barely be eaten and my mother’d be dashing out the door to meet the Nihill girls and other friends at Van Horn. Then and throughout her life our mother always had a bevy of friends. In obituary notes that she wrote, she described them as “a wonderful circle of friends.”  

 

Mom was proud of her Irish/Catholic roots—she spoke often of her childhood on The Hill where values of faith, family, friendship and Irish traditions prevailed. She was a life member of The John Boyle O’Reilly Club. She insisted her winter visits in CA had to end early in March so she could attend all the St. Patrick’s Day festivities back here.

 

Our mom became a widow at the age of 67. Though she certainly grieved the loss of Dad, she didn’t merely survive the next 27 years, she thrived. She traveled, she enjoyed the company of friends, she proudly watched her nine grandchildren grow into adulthood and she delighted in the arrival of her three great-grandchildren. She honed her bowling, golf and card game skills and she continued to be among the best bargain-hunters ever.

 

Our mother’s nurturing style can best be described as fierce. She was fiercely loyal, protective, and proud of her children and grandchildren. As children and as adults if any of us experienced a lapse in judgement or a misstep in life, she was there to provide support and encouragement. We could always count on her to be on the sidelines cheering us on or helping us out when unexpected obstacles got in our way.

 

Our mother was truly one of a kind. We will miss her physical presence in our lives. But as surely as the dandelion endures and thrives, our mother lives on in each of us—and all of you— in the thousands of moments and memories we shared. And though we will lay her to rest beside Dad today; she is still here as well—she is everywhere the wind and her gypsy feet take her.   Love you Mom.

Back in the Game

 I haven't written anything since my mom's death in December. I'm not sure why. But today I feel like writing so I'm just going to let it flow. 

I received the nicest comments today about my book Growing Up Irish Memories of a Hungry Hill Childhood. The gist of the remarks was that the gentleman who made them—some seven or so years my junior—thanked me and said that he felt he was reliving his childhood including the school, interactions with nuns and priests, and so on. Since my primary objective was to evoke the feel of a special place in a special time peopled by engaging and endearing characters including yours truly, the comments really warmed my heart. 

I haven't promoted this latest writing adventure much. The joy was in recalling the memories, focusing on the good times without any of the angst, and searching for the faded, often crumbled photos that added another dimension to the tales of my childhood and the relatives and friends who were a part of it. I'm so grateful that I completed it in time so my mother could enjoy it as well. I have her copy now. Even though she only had it for about six months it's fairly dog-eared from her frequent readings. She told me she read it at least eight or nine times and always found something she'd forgotten about. I'm glad. I think one of the things she enjoyed most in the months before she died was the remembrances of her life—her parents, her siblings, her childhood, her friends, her adventures.  That I could play a small part of that by memorializing some of those people and moments brings me a great sense of satisfaction and peace.

Speaking of peace— when I pieced together my mom's obituary from multiple pages of her scribbled notes that I found in her home several months before her death (before we even thought her death was anything more than a possibility because of her age alone). I asked that she read it and "sign off" on it. She did. When I submitted it to the newspaper for publication it stated she died "peacefully." I really, really struggled with that. While she may have had eighteen hours free from pain and was seemingly at peace, the weeks and months leading up to that were anything but peaceful. In fact, she was as feisty, spunky, and spirited on the months-long journey to the end of her life as she was throughout her life. And I truly believe that any peace she finally found was thanks to the good Fr. Farland not the end-of-life drugs we had to beg, plead and cry (yes, cry) for from a hopelessly deficient health care provider/system. But that's the stuff of another blog.

Anyhow, getting back to books. Self -publishing requires significant self-promotion. I am getting the hang of self-publishing now that I've managed to crank out two books in a decade and a half. Prolific author I am not. For me, the promotion doesn't come easily. With Missing Michael, I believed there was a ready-made audience of parents who were experiencing the travails of living with seizures day in and day out. I reasoned that if I could help just one parent feel less alone in their grief, despair and discouragement that it was worth putting my family's pain on the printed page. I tracked the sales incessantly the first few months. I wanted the book to sell well because I actually DID hear from parents who felt comforted that indeed they were not alone.  It was worth it even though it cost more to publish it than the earnings generated after 15 years of anemic sales! As for Growing Up Irish, that's another story altogether. It was a pleasure to write, and it's been great fun to read the mostly positive reviews and the comments about similar childhoods and experiences. So—I guess if I want to keep having that fun, I'll have to learn to promote my work without apology. 

Back to my mom. I'll be headed back to my childhood neighborhood in the spring to celebrate my mom's long and wonderful life and bury her next to my dad. One of my brothers wants me to speak at the church. I don't want to. I've written about my mother in blogs and in a book. I dedicated my first book to her. She was alive to feel the meaning of all my words. I sobbed in the hours leading up to and following her death. I have not cried much since—but I'm pretty sure that seeing and greeting so many of the family and friends from my childhood coupled with the songs that will be sung during her service will surely cause tears to spill. I'm pretty sure I'm going to pass and leave the eulogy to Fr. Farland. I'm pretty sure...

Giving Thanks and Kicking Ass

 So...Barry and I set out at 8:30 this morning to get to the local Costco for senior hours that start at 9. Now, mind you, I am not a Costco regular. Barry has enjoyed his solo weekly ventures there for many years and my attitude is more power to him. But this time I wanted to tag along to make sure he got the correct Yukon gold mashed potatoes my friend Little Linda swore were so delicious she got an extra tray to freeze. I trust Linda's taste buds. She enjoys a good burger and a beer—a girl after my own heart.

We turned into the parking lot at 8:52. The lot was already crowded with cars. We parked on a far end next to a cart corral so as to in Barry's words make a "quick and easy" getaway.  As we approached the warehouse entrance we saw a line a football field long waiting to get in. I was pleasantly surprised no one was cutting in—that the hundreds of us silly seniors were actually walking to the back of the line from everyplace in the parking lot behaving quite civilly in this uncivil world. We chatted with the people in front of us—laughing at the prospect that any of us thought we would beat the crowd. The line moved quickly. As we approached the entrance I noted that the individuals on the cart corral rail were reaching beyond the rail to push a cart forward as they advanced to the top of the line. The gentleman in front of Barry grabbed a cart and Barry proceeded to grab the one behind it when the woman behind him yelled "that's MY cart." I looked at her and then turned my attention to Barry who was shaking his head and chuckling just a little under his mask. When the gentleman in front of us secured his first place spot in line and started toward the entrance, Barry walked a couple of steps beyond the cart rail to retrieve one of his own. That's when the woman behind us started to push her cart where Barry had been standing. Waving my arm out to the side, I looked at her and announced, "that's his place in line." As Barry moved into his prior position my peripheral vision caught sight of her trying to pass me on the other side. I took a couple of side steps (not so fast sister) and we proceeded to enter ahead of her as she was mumbling something about it not mattering anyhow because we were all going in. Not matter? Not matter? It mattered to me. It mattered to me for sure!

As per the title, part of this blog is about giving thanks. I have so much to be thankful for contained within this one simple tale. My teammate in life is #1 of course. He admired my screen move impressing upon me that now I could appreciate a "pick" in basketball because I performed one perfectly. I'm appreciative that Dr. Chan started treating my glaucoma early enough to salvage much of my peripheral vision. I'm thankful for the organic turkey and the prime meat that enable us to eat healthy and well. I'm thankful for friends like Linda. I'm thankful that the "feisty little girl" Joan Heffernan referenced last month as we reminisced about grammar school, remains little and feisty still. I'm thankful that there are so many things I have to be thankful for, including (hopefully) those highly recommended potatoes!

A S**tshow Day Sans Seizures

A day without seizures is generally a very good day in this house. We really do try to celebrate the spells  of time in between the lengthy tonic episodes that pretty much turn the household upside down no matter how many hundreds we have been through. Anyhow— we have been pretty fortunate during this disaster of a year, 2020, to have some blessedly long spells between said seizures. Today's version of a shitshow is related to seizures for sure—but a tonic seizure was not the cause.

Since the start of the pandemic, Barry and I have become accustomed to staying in bed later in the morning. I mean—what exactly are we rushing to do? As long as I can hear the easy conversation between Michael and my Mom sipping their tea and eating breakfast downstairs, I know I can laze around for another half hour.

This morning, Meaghan poked her head in our room around 9 just prior to starting her workday from home, to announce Michael had taken a lot of meds this AM. And by a lot— she meant the whole day's worth. Morning, afternoon, and night.  Normally if Mike mistakenly takes two times worth from the med box (infrequent occurrence) I don't get very excited. He is, aftercall, not pharmacologically naïve as his peds neuro used to point out to me. However, the prospect of what might happen when 3600 mg of Felbatol, 50 mg of ONFI and 600 mg of Lamictal were taken all at once was frightening. I asked him what happened. Standing there towel-clad in the bathroom, having  just gotten out of the shower (thank you Jesus) in between saying "I feel so stupid" multiple times—he said he thought today was Friday and took his Friday morning meds. Then, he noticed that Thursday's meds were still in the med box and took two doses because he didn't want to upset his parents. Another thank you Jesus or whatever moment, that he didn't take all three. He then proceeded to tell me he didn't feel dizzy until he was showering. Thank you...

I contacted his neuro and left a message. I was not about to bring him anywhere close to a hospital but wanted assurance we could just ride this out. Barry and I walked him to his room and I instructed him to stay put in bed and yell if he needed anything while I gathered phone, laptop and coffee so I could plant myself bedside. A few minutes later, and I truly mean 2-3 minutes, there was a series of thuds from upstairs. I dashed up the stairs barefoot, tripped somewhere between the landing and Michael's room and arrived at the room in time to try to hold him steady as he was starting to throw up. Barry and Meaghan showed up right behind me and we got him into the bathroom where he could vomit. Barry stood beside a kneeling Michael and I went into Meaghan's room and plopped my face on her made bed while I took some deep breaths and willed my heartrate to slow. Ten minutes later, Barry and I literally dragged Michael back to his room and hoisted him to bed. All this time he was talking coherently though drunken-like and could still answer questions. It was clear by now that this would be a long day.

Michael's neuro called for the second time about 5 hours in. By then he was extremely hard to understand, but could still state his day and year of birth and he'd puked bile into a bucket at least a dozen times. She felt that because he could understand and follow commands, we were headed in the right direction. She noted that when he joked, we'd probably be in the clear. She is just so smart, and calm and kind—I pretty much was sure all would be well after that call. About 4 pm when Michael was trying to go to sleep he said something. I walked over to his bed and said "I didn't hear you". He said, " Donald Trump is an idiot". I let the doctor know. She said, "excellent". Michael slept for a while. He woke up and announced "I'm talking better now". Indeed. He was.

It's after 5 now. All is well.  The shitshow is over for today. Thank you...

When COVID 19 and Routine Medical Care Collide

My 92 year-old Mom extended her stay with us due to the COVID 19 invasion of our country. Prior to extending she had a suitable supply of her daily blood pressure medication. During her stay here, her Primary physician quit working for the large health care system that had taken over one of the local hospital systems in her community. More on THAT another day. Anyhow...I set about finding how I could get her prescription with 0 refills filled before we ran out of pills.

I called the office of my own Primary MD who my Mom has seen several times over the years for a variety of reasons. He works in a large academic health care system in my  community where I was employed for over 20 years. More on THAT another day.The extremely kind person I spoke to did her best to accommodate us. Obviously my 92 year-old Mom wasn't going to be visiting any type of health care facility. Goodness, we've handled her like fragile crystal since the competent leaders of my city and state issued stay- at -home policies several weeks ago. (It's nice to live in an enlightened area). So, I was informed that because my Mom hadn't seen aforementioned Primary in 3 years, she "fell out of" his practice which was now "full". (Isn't that amazing? No need to see an MD all that time she has spent here in the past few years!) Because I am aware that our health care system such as it is, is under great duress at this time, I chose not to beg, yell or try to use any connections to convince this awfully nice woman to get my, my husband's AND my son's Primary to fill a damn prescription my Mom's been on for forty plus damn years.😡

Anyhow...with a weak promise to try and get a doctor to agree to  call in the script before her med runs out, my pleasant connection to health care offered to set up a video visit ("there will be the same co-pay" she said). I agreed. We set one up. So next week several days after the med runs out, we'll see how it goes with the doc who has never seen my mother, talking to my mother through the computer screen. Yeah. We'll see how it goes. 😆 And, there'll be more on THAT another day.

Meanwhile...(apologies to Colbert) Meaghan offered to call my Mom's former MD's practice back east to see if another MD in the practice would be willing to prescribe the med and call the pharmacy based upon the knowledge my mother had seen the doctor in the fall and she's been on the SAME DAMN MED for over 40 years. I have to say Meaghan was pretty full of herself when she reported how quickly she had been able to resolve this situation that had frustrated ME so much. Later in the day prior to picking up our take-out dinner, Meaghan and I stopped at the pharmacy to get the medication she had managed to get ordered so easily. Not there. No call. No order. 😑

So, today, Meaghan hit the phones again, talked to someone she deemed to be capable---(she even looked my Mom's record up)---and she assured Meaghan she would get one of the doctors to call in the prescription. THIS time, THIS call worked. The med will be ready for pick-up down the street within hours-who knows-maybe minutes. 😁

This is just one little tale of how COVID 19 has changed things. It's not a big deal by a long shot. I am all too aware thousands of people are dying and my professional colleagues are literally putting their lives on the line.

Frankly, I needed to occupy myself writing today so I would not implode at the knowledge that smirky, snarky, wimpy, unqualified Kushner is making life and death decisions during this crisis. WTF!  Stay safe. Stay in.