Health Insurance and Other Deadly Things

 My hearing aid beeped this morning signaling it was time for a battery change. Ugh. For the past several months I have fought with the child-resistant packaging— risking slicing my not-so-nimble fingers trying to engage an ordinary size scissor into the plastic encasing a pinkie finger size button battery. I was alerted about this problem by my audiologist who mentioned the packaging would be more difficult to open and dispense due to the death of a child from ingesting one of these teeny batteries. How could something that has brought me the joy of interacting with the world— hearing the chirping birds, buzzing bees, chatter of friends—how could an object that changed my life for the better be the cause of unimaginable grief to a family? 

Today I looked up that child. I learned her name, I saw her photos. Reese Elizabeth Hamsmith was an adorable, active, fill-the-room child. She swallowed a button battery at the age of 17 months.  She endured multiple surgeries and procedures and died at the age of 18 months in December of 2020. Her mom, Trista, created an organization called Reese's Purpose to "identify, advocate and correct safety issues impacting children and their families." And what a job they have done! President Biden signed Reese's Law in August of 2022. The bill was introduced in the Senate by lead sponsors Richard Blumenthal and Marsha Blackburn — a most unlikely pairing. In announcing the bills bipartisan passage they used familiar phrases: "common-sense legislation"  and "families can have greater peace of mind."

I will happily struggle opening my hearing aid battery packaging  knowing that it is intended to protect the lives of children with much curiosity and busy hands. I applaud the efforts of Reese's Purpose and wish the organization great success as they expand the scope of their child safety mission. I extend deep sympathy to the Hamsmith's on the loss of their beautiful child. 

And yet, I cannot shake the feeling of outrage I have that politicians cannot come together in a bipartisan way to promote "common-sense legislation" and ensure "families can have greater peace of mind" when they drop off their children at school. When the slaughter at Sandy Hook took place I would've bet a lot of money that politicians could not look at those precious faces or into their parent's eyes without passing a common-sense gun safety law. But, it has happened again, and again, and again—to young and old, to churchgoers, synagogue attendees, shoppers, moviegoers...anywhere, everywhere, over and over— thoughts and prayers, thoughts and prayers, thoughts and prayers...No bipartisan action to really make a difference. No political will to tackle an industry that contributes millions to campaigns. 

Brian Thompson, CEO of United Healthcare, was gunned down on a NYC street on December 4th. Murdered. Some say "assassinated." Whatever the word; his life was taken. Tragic. Sincere condolences to the Thompson family and those who knew and loved him. 

In the media frenzy following his death it became clear that some people had little empathy regarding Mr. Thompson's fate. Many of those people were the victims or loved ones of victims who believed a death or great harm was done due to United Healthcare's denials of necessary care and treatment. Their stories are gut-wrenching. Heartbreaking.   A denial, a delay, a death. What do we call that? It's not a murder. I mean—it's not like someone gunned them down. But someone turned them down. Denied them care. Denied what they needed to treat pain or cancer or diabetes or epilepsy. Denied what they needed to live more comfortably, to live at all. What do we call this? Who do we hold accountable? How can Brian Thompson's death be called an act of terror (ostensibly because a class of people—CEOs)—are intimidated by this act and the deaths of innocents sitting in their classrooms are not in spite of the fact school shootings occur over and over and shooter drills are conducted routinely? Is this not an entire class of people that are intimidated? 

We have a problem Houston. The insurance industry is a huge donor to parties on both sides of the aisle. They are against Medicare for all (or anything similar). Their profits depend on saying no. They do not manage care. They manage money. When patients start to use up "resources" ($) that negatively impacts profit margins—and so delay and deny becomes the game plan. A deadly plan for some. But who reports death by insurance denial? What do we call it? 

What have I done here? Where am I going? I'm not quite sure. I know I have more questions than answers. I know that I devoted my professional life to caring for people—teaching wellness, administering treatments, mitigating pain, and promoting comfort when other measures were no longer effective. I have seen my share of death—held the hand of patients when they took their last breath, hugged family members and friends who lost someone. 

I do not understand how we as a nation can continue to value guns over lives and profits over health. I want us to find "common-sense" solutions. Given the division in the country, the incoming Administration and the vast amounts of money being funneled to Congress, I fear the victims of mass shootings and health insurance denials will not motivate politicians to act in the same way as a beautiful little girl who swallowed a button battery. I fear we are beyond caring when great sums of money are involved. I fear that we have truly lost our way. I hope to be proven otherwise.

Peace. 

The Ones I Know

 Since November 5th I've been trying to figure out how a convicted felon, sexual abuser, adulterer, mean-spirited racist, misogynist, mocker of the disabled, inciter of an insurrection, an old, white (orange) man was elected by my fellow citizenry to the highest office in the land. I will leave the political analysis to others. Throughout the multitude of posts on social media since the election there has been a common question asked in a variety of ways boiling down to some version of how will you deal with people you know who voted for him? I am beyond abhorred by the amoral, vile, vulgar person that is Trump.  I believe with all of my heart and soul that he is a liar, a thief, a man-child and taking a not-so-wild guess based on my nursing and life experiences—he has some form of dementia. All that said, the people I know who voted for him do not possess such horrific traits.

The ones I know (and they number somewhere between 70-80 people I am pretty certain voted Trump/Vance) are from family, extended family, family of family, former friends who had their friendship already not been part of our past it would never have survived through the  last four years, people I used to work for and work with, people who worked for me—many who were friends at one point or another— a lot who were frequent guests in our home, a mentor who I still care quite deeply about and a very small number in our current social circle.

So what do the ones I know have in common? Well, they are highly educated. I would guesstimate 95% have college degrees, many have post graduate degrees. Among them are doctors, lawyers, nurses, teachers, small business owners, investors and financial brokers. There are retired Capitol Hill police and other federal law enforcement officers and bureaucrats. The majority came from working class backgrounds such as my own and Barry's, more than a few have inherited or built considerable wealth. Not one of the ones I know live paycheck to paycheck, lost a job to an immigrant or had their miscarriages mismanaged because doctors were afraid to care for them. The ones I know, are in large part, what the far right talking heads and radio personalities refer to deridingly as the "elites." They are successful. Many have multi-million dollar homes— some, two. Some have boats and other luxury toys. Some travel lavishly. Most, if not all, have comfortable, even enviable lives. They are white. On the surface they appear MUCH. LIKE. ME.

I have no idea why most of the ones I know voted the way they did. I suspect many were economically motivated by the promise of tax cuts, surely not the price of eggs! A few are devoted to their churches teachings—perhaps they saw their vote as ensuring that women's rights to access reproductive health care/services would not be restored. I believe there may be a couple misogynists and racists among them so perhaps casting a vote for a black woman was out of the question. What I DO know about the ones I know who voted for Trump is that they voted for the person described in the first paragraph above. I believe the majority of the ones I know will not suffer any ills as a result of their vote, save the loss of health care/reproductive freedom for their wives, girlfriends, daughters, sisters, nieces— apparently, an acceptable price to pay.

So here we are. I've posted several times that people need to "buckle up." It's going to be a rough ride for the majority of Americans no matter who they cast their vote for. The ones I know ,will, in this case, be in the minority. Oh—and how will I deal with the ones I know? That is a difficult question indeed. I'll let you know some time. Later. 

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. 

Before Isolation ... Celebration

CONGRATULATIONS MICHAEL 

We're so proud of your accomplishment and so happy we could celebrate with dear friends-many who helped you along the way. There will be a little delay now before you're onto the next step; but just as you achieved THIS goal we know that the next one is well within your reach. 

                   

Reflections

One of Barry's undertakings during our current isolation is rummaging through a cardboard box that was stored in the far recesses of one of our closets. Yesterday, he showed me a wooden plaque which held an 8  x 11 lined sheet of paper covered with glass. It was definitely my handwriting on that now brown-tinged paper. " What IS this?" I asked aloud. "What IS this?"

Today Barry handed me my nursing school yearbook.  It was called Reflections  and the year was 1971. And there it was...the intro to the yearbook. My words. 

Of Winds and Wishes

Can it be? Can it be that Santa Ana conditions somehow decrease Michael's seizure threshold? I have always thought (based on anecdotal experience-you know- Mom theories) that weather changes, altitude and time zone changes might be seizure triggers in Michael's case. Anyhow...this morning Michael had a seizure in his sleep. Barry wrote the time and length in the seizure journal and he also noted " Santa Ana conditions". I flipped through the notebook to check when the last seizure had occurred and next to the time and length of the seizure a month ago, Barry had noted "Santa Ana winds". Maybe. Maybe not. There are some triggers we can be pretty certain about- stress, for example- and we can take some measures to reduce it. There are other possible triggers that we have noted with respect to Michael but some are simply unavoidable. And that's how it is with epilepsy. That's how it is. For us.

This morning's recovery was swift. Michael slept for a couple of hours post-seizure and came downstairs with an overflowing laundry basket which he proceeded to throw into our frontloading washer piece by piece as he related that he often does so "like pitching a softball" to make this particular chore "more fun". All the while he was grinning from ear to ear. Vintage Michael.  So...we're good. Seizure's done, life goes on. Onto reading and studying to get through this final course to get the degree he has so coveted. Is that a stressor? Yes.  Hell yes. But we deal...we just deal with it.

So pretty much this is the rhythm of our lives. A seizure. Move on. Do the best we can to minimize triggers we're aware of and brace for the inevitable seizure that will occur again. In a day, in a week, in a month. Oh what I wouldn't  give to say in a year! But we're not there. Yet.

Epilepsy awareness month is in November. As I've said before, I'm not certain that increasing awareness results in more research funding, compassion, or better treatment options. Nevertheless, many of us persist in this awareness campaign hoping that it might make a difference. What if one kid in one school stops bullying the kid who has seizures, and instead, sits with him at lunch? What if a handful of people with plenty of discretionary spending resources are moved to donate to research that discovers the cause of SUDEP (Sudden Unexpected Death in Epilepsy) and develops measures to prevent it? What if a young neuroscientist is moved so much by learning about the devastating epilepsies that they commit their career to unraveling the mysteries of syndromes such as Dravet and developing treatments that enable children to thrive and grow into adulthood? What if, indeed!

So...we persist. For the what ifs. For the hope of the future. For Michael and for so many others.

My CBD EXperiment

I've written numerous blogs about our CBD experience treating Michael's seizures. We had grand success for a while and then experienced an epic fail. I don't blame CBD. Perhaps we experienced the "honeymoon period" that often occurs with pharmaceuticals as well. Who knows? (as with most things epilepsy). At any rate, since we have experienced an extended period of time with weeks, even months, between prolonged tonic seizures there will be no cannabis for Michael at this time though we certainly do not rule out using it at some future date.

As for me---well that's a different story. About 8 months ago the occasional arthritic ache and pain turned into a nearly daily occurrence and I was taking Ibuprophen 2, 3, sometimes 4 times a day. I  didn't want to continue that pattern. So---I thought, why not try CBD? I think of this as my personal cannabis experiment. And I want to share what I have learned so far.

After searching the internet, reading reviews and generally just trying to determine which suppliers seemed legitimate and trustworthy, I chose my first brand. Each month or so, I switched based on the level of effectiveness and to be perfectly honest, my curiosity. Also, once I had access to the marijuana dispensaries locally, I could peruse their shelves and question staff about the numerous products that were stocked. Please keep in mind this is my personal experience. I am not recommending any one brand nor am I suggesting that because a product didn't deliver for me, it's not a good, even excellent, product. I used tinctures. Doses varied and I generally divided the total daily dose into 2-3 administrations.  My measure of success was a dose that controlled any aches or pains and enabled me to avoid using Ibuprophen.

The first three products were purchased on-line. They were priced from $110-$130 per 30 ml. bottle. They were CBD oil tinctures with extremely low levels of THC. They all touted that their hemp was grown in the U.S. First: Elixinol- I required 30 mg/day. The tincture was citrus flavored and delivered via pumps under the tongue. The flavor was tolerable but not great. The second product was MedTerra. It was clear, tasteless and administered via dropper. I needed 33-50 mg/day. Third was Premium Jane (love the name). It was citrus flavored---delicious, administered via a marked dropper, and I needed 50 plus mg/day.  Each product lasted approximately a month.

The next product I tried was recommended by Katie's dog groomer. Yep. Anyhow...she swore it helped eliminate her brother's significant shoulder pain. It's quite pricey@ $325 per 30 ml. bottle. BUT it's unique extraction process (their sell) means that one needs only 2 drops to get 25mg of CBD. It's called Whole Flower Fluid. When I recognized I needed at least 4 drops 2-3 times per day to achieve effectiveness, I knew this was not the one for me. I was off to my local dispensary in search of a new product.

I consulted with the "bud specialist" at the dispensary and settled on a 30:1 tincture by Papa & Barkley. The specialist talked about the synergistic effect of adding more THC. That made sense to me as it's mentioned in so much literature about cannabis. This product definitely tastes of the plant. It comes with a marked dropper which is very helpful. I found it effective when taking about 60 mg of CBD/day. Because it does contain more THC than the previous products it is less costly @ $90 per bottle. I used this for at least 3 months, figuring I had found a formula I could stick with. However...

When I visited the local dispensary last Saturday, next to Papa & Barkley on the shelf was a brightly colored box (rainbow) which caught my eye. The product, high CBD full-spectrum tincture by Chemistry, also caught my attention because the strain of the plant, AC/DC, was on the label AND unlike every other product the mg/ml was broken down: 7.6 mg CBD, 4.3mg CBDa, .62mg THC, .52mg CBC, .12mg THCa. No math required.  The price was definitely right: $60/30ml. How could I not try? So far, so good @ 1 ml/day. It's administered via marked dropper and tastes plant-like as well, though not as pronounced as Papa & Barkley. I'm anxious to see what happens with this one in the next month. Even if I have to increase the dose somewhat, it seems to be the most cost-effective to achieve the desired results. I'll let you know.

It appears that CBD products with more THC and other cannabinoids work better for me. I have noticed that I am somewhat calmer (it's all relative right ?), sleep better and have much more focus (sometimes laser-like) on most of the oils and in particular, the last two. I haven't used Ibuprophen since I started my experiment. I feel good. Really, really good. Straight from the box of my current tincture: "...help smooth out life's edges and bring a touch of equanimity to the day."

I'm smoothin' out the edges. What about you?



 

Heart in Throat Disease

 That's it. That's what I have. My heart is in my throat. That's how I feel. Not all the time. Just the times I'm filled with fear, terror even, that a couple of breakthrough seizures will send us spiraling toward the abyss that is a prolonged, unstoppable seizure. I have it now-the heart in throat thing. Michael's had 4 breakthrough seizures in the last two days. They were brief---seconds only. But two knocked him off his feet.

I know what's causing them. The seizures. He's extremely stressed about a school project due Monday. The stress is causing him to mis-read/understand directions, argue when we attempt to explain or god-forbid assist and prolong the process by hours!

I finally contacted the neuro this afternoon. She knows Michael well. She asked, "Does he LIKE the course?" We chuckled. She knows he's almost there (to his degree) and that suggesting dropping this next-to-last-course is NOT an option. She figures, and I wholeheartedly agree, that he's revved up his stress to such an extent that his seizure threshold is compromised.

So...we have a plan. I'm not enthusiastic about adding a med even for a short time. But I do know how quickly 2, 3, 4 seizures can become a hellacious mess and I DO appreciate how much Michael wants to get his degree.

This evening was quiet seizure-wise but everyone's mad at someone re project or seizure safety. How do we navigate caring and protecting him with supporting his course work? Answer unknown.

I have unbelievable admiration for those people who I know and love who deal with this 24/7. You have no idea. Don't waste your empathetic thoughts on me. Keep them in your thoughts. and, should you want to do a little extra, donate to epilepsy research.

Was it the Moon?

Last night there was a gorgeous full moon. It shone brilliant white in the sky, the shadows of the earth clearly defined.  Did it have anything to do with Michael's seizure yesterday afternoon? Probably not. In 29 years we've never experienced the moon effect so I'm inclined to believe it was pure coincidence. I will take note of the appearance of the next full moon though just in case.

Yesterday's seizure occurred when Michael fell asleep while watching TV. It was the first lengthy seizure in over five weeks. Barry was beside the couch and I was in the kitchen so we were present throughout. I felt pretty certain it would not progress to an emergency situation  BUT  I cannot deny that piece of me that was bracing for the worst, imaging the prior disastrous seizures that occurred several years ago turning our lives upside down for well over a year.

The seizure lasted a minute and a half, perhaps two. It was an intense tonic ---I'll spare the description. I know better than to think Michael can hear my pleas. Yet still---Michael, Michael. And in my mind---stop, god dammit, stop! And -it stopped. He slept peacefully for an hour afterward and upon awakening announced he didn't remember laying down for a nap. We told him he'd had a seizure. He said he felt a little groggy but his recovery was quick enough that he enjoyed dinner, cleared the table and did the dishes as he usually does.

Anyone who reads this blog or knows us, is aware that we are very grateful that seizures haven't ALWAYS turned our lives upside down as they do to so many other families. We have had many merciful days, months and years without the menacing and dangerous tonic seizures that knock people off their feet and into whatever surface is surrounding them. Nevertheless, the epilepsy monster still visits us daily in the form of frequent, mostly brief seizures that occur during asleep--- the pesky nocturnal seizures that medical science has yet to be able to control. Those pesky seizures that with other factors place Michael in a category more likely to experience sudden death from epilepsy. SUDEP. I left out the word unexpected as we certainly are aware it is something that can occur and we live with that dread. But...we live. And most days we live life to its absolute fullest and don't think of the unthinkable as we've taken all the precautions available that Michael will agree to.

I'm thinking about the unthinkable today not because Michael had a seizure. I have a friend who's been incredibly upset this week because her friend's adult son died because of a seizure that couldn't be stopped. It has shaken my friend. I don't think she was aware of the significant risk of epilepsy. Now, sadly, she does.

We need to do better to prevent this tragic outcome. We need to do better.

Legally Speaking

I'm legal again. Legal to drive, that is. Barry was doing some tax work over the week-end and needed my license to complete a form. He handed it back saying simply, "it's expired".  Yikes! I didn't recall receiving a notice about renewing. I immediately went to the DMV CA website and learned that the license renewal section would be down until noon this past Monday. My mother mentioned something about a grace period, so I continued to drive through the week-end and Monday. She's my mother---I just believed what she said. No matter she resides in another state! Anyhow, when I visited the DMV website once it was up and running, I learned I wasn't eligible for an on-line renewal. Was it because  I was two plus weeks beyond the renewal date? IF I DID receive a renewal notice where in the hell did SOMEONE put it? I looked in the one place on the desk in the kitchen where I sometimes put documents until I can complete them when I have time. And there it was. Post-marked October 2018. Clearly, I was the culprit. Mea culpa.The notice was pretty clear: "RENEW ON OR BEFORE YOUR LICENSE EXPIRATION DATE. Your last two renewals have been by mail. This notice requires you to now renew at a DMV office". Ugh!

Now---about that grace period. California doesn't have one. Driving with an expired license in CA is illegal. One article I read called it a "wobbler" offense. It COULD be a misdemeanor with a fine of $1000 and up to 6 months in jail, OR it could be an infraction that could cost $250. ALL articles agreed on one thing. Do not drive with an expired license in CA. Ugh! I needed to take care of this ASAP.

I could not make an appointment at the DMV that would satisfy the ASAP requirement. So I showed up at the local DMV about 5 minutes after it opened today. Already, the line was spilling past the entrance into a hallway. After being directed to the appropriate line I stood with all the other license renewees who could choose to renew their regular "federal non-compliant" license OR obtain the REAL ID which will enable one to board a plane in the U.S. as of October 1, 2020. My renewal notice had prepared me for the REAL ID option so I had the required documents with me. (I thought). I submitted my SS#, a bank statement and my birth certificate to an officious, unfriendly young woman. "Are you married?", says she. Yes. " Do you have a marriage certificate to explain the name change?" Seriously??????  "You can just renew your license". Yeah. I'll be getting one that says "Federal Limits Apply". So...I'll be legal on the roads but no air travel for me after 10/2020 unless I visit my delightful DMV again.

I had intended to write this blog while waiting but turns out it's a little difficult to focus, type or even sit in the delightful DMV. I made it through the on-line application process on computer row. Then a kind and smiling young guy (really) assigned me my number, G066. Only 65 ahead of me. I took in the mass of humanity around me. Most were settled in plastic chairs surrounding 30-something work stations. Few customers spoke or even looked at one another. Few workers spoke to customers save the required questions. After two hours my number was called. I reported to Station 29 and was pleased to interact with an efficient, kind woman who treated me like, well...a customer! Same with the woman who took what I am pretty certain is an unflattering mug shot. Once my photo and fingerprints and signature were obtained I returned to Station 29 where I signed my temporary license. Success!

Some thoughts about the DMV. It's far better than being in a hospital. It beats worrying about the next seizure. It's a good place to practice patience and exchanging pleasantries. No one judged me for my stupidity and carelessness. I got my license. I'm legal. Thank you DMV. Ugh!

Half a Year

I haven't posted here in quite a while and generally that's a good sign. I was up quite early this morning with two airport departures and the 6:30 AM arrival of the painters of our home's exterior. I decided I would write something today and that I should note how long it has been since Michael's last lengthy early morning tonic seizure. I referred to our archaic method of documentation- a simple hand-held size yearly calendar. I turned back pages, many pages and counted the weeks--- 27 plus! Later this morning when I informed him, Barry said, "half a year".

I made coffee, found some room to change in where there wasn't danger of a worker sanding or prepping a window, and found the quietest room to make a call and try to straighten out a gift card mishap. I was leaving a message with the restaurant's General Manager when Katie burst into our bedroom. I was so unaccustomed to her "get help" behavior that my immediate thought was that she needed to be taken out. Then it dawned on me-duh- that she indeed may be alerting me. She and I went to Michael's room where observation of  his breathing and facial motions led to only one conclusion. He had experienced a tonic seizure of unknown length and was in a post-ictal state. He was easily roused and even able to take his morning meds within ten minutes. He slept rather peacefully for the next two hours. And so it goes, this life with seizures that is nearing its 29th year.

I am giddy grateful for the absence of those damned seizures for 27 weeks. It's the longest streak we've had in at least a decade, including that glorious period when we tried Jayden's Juice (THCA) and then Charlotte's Web (CBD) until suddenly, inexplicably, everything spiraled out of control for fifteen months. I am BEYOND grateful that the seemingly endless cycle of emergency room visits and hospitalizations is over and hopefully will never, ever rear it's beastly head again. But----this is intractable epilepsy we're talking about here. And so....you never know. You just never know. 

To my readers who are not my epilepsy peeps: In this month promoting epilepsy awareness---just know it is a condition that ranges from controlled to catastrophic. That 30 plus % of those with epilepsy have seizures that are not controlled by medications, hence the term intractable. That it can be devastating to the person who has it and the family members who care for them. That it can be deadly. Let that sink in---it is responsible for 50,000 deaths a year. That better treatments with fewer side effects are desperately needed. I ask you please---don't let my gratefulness, hopefulness or sometimes, even optimism, fool you. Epilepsy sucks big time and increasing awareness is just a small part of what needs to happen.

Meantime...we begin a new streak.

Listen In

Last week I listened to the Podcast "Who Lives Like This".  Elizabeth Aquino and Jason Lehmbeck  interviewed special guest Paige Figi. Among a myriad of other things, Paige is the mother of Charlotte (of Charlotte's Web fame). There is much that has been written and televised about Charlotte's story but little about Paige's journey as a caregiver.

Let me just say Paige and I appear to have little in common except for the critical fact we are caregivers to children with intractable epilepsy; Charlotte, age 11, with Dravet, and my Michael, now 33, with what is described by the professionals as "LGS-like" epilepsy.

I was struck by Paige's zest for life and adventure and her commitment to doing what makes her happy so that she is there in every way for her children and all the other caregivers and children she works so zealously for. I encourage you to listen to the interview.

We've been dealing with Michael's epilepsy for over 28 years. We don't have the constant 24/7 scenarios of so many other caregivers because there have been months, even years, when Michael's daytime tonic or other potentially catastrophic seizures were not an issue. That reminds me of Elizabeth's words to her son Oliver, " And some have it better...". However, even during those times of respite there was anxiety regarding the always present uncontrolled nighttime seizures, the pain of observing how the anti-seizure drugs while effective with seizure control were dulling the mind, the experience of other effects of the drugs including behavior issues, lack of concentration, weight gain, weight loss, word finding difficulties, sleep issues, learning difficulties and so on and on and on...

Dealing with a chronic, sometimes, debilitating condition is so much more than dealing with the medical system. That would be enough for sure. But when one adds school system issues, haggling with insurance companies, bullying and isolation, stigma and discrimination---well---it's a lot. If you've been there, you get it. If not, there's a pretty good chance you don't. But, if you listen to the podcast referenced above, you might.

During our most recent battle with the epilepsy beast, I tap danced whenever I could. Yes. Tap danced---FitTAP to be specific. Those hours (sometimes 5 or 6 a week) listening to show tunes, rock, oldies, and Bruno and other contemporary artists while concentrating on  flaps, shuffles, balls, digs and riffs---well---those hours sustained me.

Caregiving can be exhausting and draining. Find that thing that works for you. Whether it be an activity or a place. Find it. Make time for it. Refresh and renew your spirit.

And one more thing. If you're a caregiver, please tune in to Elizabeth and Jason's podcast @www.wholiveslikethispodcast.com. You'll be inspired and moved to tears as well as laughter--- and you may learn something that will help you to sustain and renew. Promise.

Hopeful Still

This morning Michael had a seizure while asleep-one of the tonics that lasts a couple of minutes. I was alerted by some loud thumping which turned out to be one of his arms smashing the wall next to his bed. Had I not heard that, I'm pretty confident Katie would have alerted me as she was almost to my bedroom as I made my way toward Mike's room. It isn't pretty watching a seizure---hoping it ends soon-swiping the magnet over the VNS which seems pretty useless but nonetheless is part of the routine. Also part of the routine is sitting beside him in bed----waiting for the stiffening motions to subside-then waiting for the heart rate and breathing to decrease to some degree of normalcy---waiting till he can groggily respond to his name. Satisfied with opened eyes that briefly meet my own and a grunt that indicates he hears me, I leave him with Katie beside him, hoping he can now sleep peacefully.

Half an hour later I return to the room with morning meds in hand. Michael wakes to the sound of his name. I ask him how he feels. "Fine". He takes his meds, climbs out of bed for a brief trip to the bathroom. I let him know he's had a seizure. His general grogginess or maybe a headache would have alerted him to that fact eventually. I marvel at how he is amazingly functional just 30 minutes after  misfiring neurons took possession of his brain. Amazing. He truly is amazing.

We have settled into this new pattern which actually was the seizure pattern prior to the hellish 15 months when monthly early AM seizures during sleep stopped and were replaced with  tonic seizures occurring multiple times throughout the day. Blessedly, that pattern stopped in February of last year and now it appears the old is new---1-2 lengthy AM seizures a month. It sure beats the traumatic falls, sutures, hospitalizations and emergency calls made necessary when the seizures simply wouldn't cease no matter the emergency drug. Yes...it's better than when every day was hell on earth. But it's not acceptable.

Not Another Moment Lost To Seizures... I believe that's the motto of the Epilepsy Foundation of America. I would add Or The Drugs Used To Treat Them. All of this---this morning- and the past twenty-eight years lead to my current rant. Why the hell can't some brilliant neuroscientist(s) figure out why my son's brain and those of so many others are besieged by neurons gone awry? Why can't someone figure out why one medication or a cocktail of anti-seizure meds are ineffective in controlling 30 % of those afflicted, and I do mean afflicted, with epilepsy?  Why?

I have hoped for twenty-eight years that the mystery of one of the many diseases/conditions that originate in the brain would be solved and that such a breakthrough might positively impact some other neurological condition. I have hoped...and hoped...and hoped. And I will continue to do so of course. I will continue to hope that in Michael's lifetime there is a treatment that does more good than harm, or better yet, a cure. Epilepsy is complicated for sure and in many instances, catastrophic. It takes away moments and hours and weeks, months and years. It takes away lives. But it can't take away spirit and resolve or hope.

It can't take away my hope.

Finished, Not Done

I've been talking, thinking, and writing about my retirement for a while now. While McCoy & Connolly Consulting, Inc. was dissolved before the new year; McCoy, Nancy, and Connolly, Mary Lou, had committed to presenting two seminars that were held last week. The sessions were well-attended and (I think) well-done. It is NOT easy to make government regulations palatable or interesting and for the most part, I think we did so for the better part of the last 16 years; and perhaps more so last week. And why would that be? Passion, I think. A truly strong passion for doing the right thing for the right reason and believing wholeheartedly that one's home is by far the best setting to receive health care---a passion to provide the type of information and encouragement to engage home health providers and clients to ensure that patient's receive excellent services geared to the patient's needs---  a passion to teach--- and a passion to care. Do what you love, love what you do.

I'm pretty sure my nursing career is completed now. The past 16 years of doing it our way were not the most lucrative in my 45 years of employment but they were the most rewarding and the most fun. It would be hard, probably impossible, to derive the  same degree of satisfaction working in some bureaucratic system or even conforming to some other consulting company with their own way of doing things. Besides...45-plus years  is enough.

We conversed a lot last week, as we usually do, Nancy and I. There was a bittersweet realization that this was it; but also much talk about the future and finding something else that ignites a similar passion within us. If you ever read this blog or my posts , you're aware I have a great deal of passion and motivation to spread awareness and understanding about epilepsy. That's not going away. I can get extremely passionate about the mess that our health care system is in and about health insurance companies and Big Pharma. I can get utterly unhinged about the drug schedule status of cannabis. I deplore the injustices occurring daily throughout this land---the disregard for the poor and unfortunate, the disabled, immigrants. I abhor the blatant, unapologetic racism. I am beyond passionate about the insanity of the easy access to guns in this country. I could go on and mention the elephant in the room, but this seems like a good place to stop.

So...there it is. I am passionate about a lot of things and I haven't even mentioned the ones that give me so much joy and pleasure---a well-crafted beer, a fine red wine, a gourmet meal-oh hell- a great burger, horse racing, cooking, family mealtime, reading, writing, planning a getaway, tropical vacations, watching almost any sport but most especially March Madness, my beloved FitTAP class and the great ladies I take it from and with, my girlfriends, my siblings and mom, my soulmate Barry and Meaghan and Michael who I would fight to the death for----that's passion.

So maybe it's not passion at all. Maybe it's purpose. Maybe it's a mindset change. Maybe I just need to breathe in and out as Michael always says. Maybe I just need to seize the day, every day.

Ok. I think I've got this.