Wednesday, July 18, 2018

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 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.

Tuesday, May 15, 2018

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.'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.

Friday, March 2, 2018

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.

Wednesday, February 7, 2018

On the Edge of...

This month marks a year that seizures haven't intruded upon nearly all aspects of our lives. It marks well over a year that we haven't placed a 9-1-1 call. It marks a little less than a year that the "edgy" feeling when Michael's in the shower, on a neighborhood walk with Katie, or climbing the multiple cement stairs on campus has, for the most part, abated. It really has been a very good year.

Michael was napping on the couch today as he does on most days. He had a couple of brief tonic seizures which is par for the course---he has them each and every time he sleeps. Dammit. I said, certainly not unusual. We simply don't get excited about them anymore. Then---a more familiar and fearsome guttural noise and a more lengthy tonic seizure-perhaps a minute, maybe a little longer. There I was as I have been so many times. "Michael, Michael---please stop". (after all these years I still think that will somehow turn the switch? Of course not-but it's so automatic. Wishful, spoken plea. ) DID stop. And he did have a relatively peaceful sleep for a very brief period afterwards. Then, he was up and about walking behind my chair, conversing casually and I told him forcefully enough to surprise myself, to "PLEASE sit down".

When Michael ended up intubated and in the ICU in August of 2016 for the seizure that wouldn't stop no matter WHAT, the afternoon nap and seizures were much the same as today. Except today WAS different. It wasn't going south in the way it had THAT day.

Since Barry was home and all seem settled down I went to Vons's. I bought some groceries. And all the while I was going up and down aisles I was suppressing the urge to vomit. My stomach was in knots. My heart, as the saying goes, was in my throat. The aftermath, I suppose, of the adrenaline rush and  the pure and visceral fear we could end up in that very bad situation again. The reality is-we didn't today. But our reality is that we COULD.

When I arrived home all was well. Michael-an hour post seizure, was talkative and inquisitive-oddly enough, about my blog. I resolved that I won't let that one August day take anymore of today's joy away, or tomorrow's, or the day after that...

Promise to self.

Sunday, December 17, 2017

Happy 90th Birthday Mom

Dear Mom,

Remember when I spoke at Dad's retirement party? I was so happy to be able to share my thoughts about him while he was there, just feet away from me. That's how I feel about this particular blog. I get to share my feelings about you while you're here with me. We'll go to your favorite area restaurant for lunch to celebrate your special day, and we'll also celebrate this magnificent milestone later this month with your sons, several grandchildren and your many San Diego friends. Oh...and tonight the dinner is whatever you choose and we'll indulge in the gorgeous cake that Suzanne delivered yesterday.

You had me and my three younger brothers via C-Section in the days when women were encouraged not to have so many children via that route. But you did. You and (as I recall you saying) Elizabeth Taylor.

Dad was a fireman and each time we heard the sirens from our Newbury Street home you'd gather Gary and I and take us to the fire site. We were actually present when he went in several burning buildings. I don't remember being scared. It's what he did. It's what you did. I remember Dad studying for the various tests as he rose through the ranks. He would eventually become Chief and we no longer chased fires in the days of Brian and Gerry----just too many kids to dress in the middle of the night.

You were a phenomenal softball player. I heard from a lot of people that you were the best ballplayer on Hungry Hill. They'd usually add that you should've gone pro. You were in a bowling league for over 50 years and I always marveled at how you pitched that ball down the alley at those skinny candlestick pins with such accuracy they'd explode in all directions. I'm pretty sure there were several bowling titles in those years. You were an excellent golfer as well. When you drove the ball a few months ago in Atlanta it gave those grandson's a nice memory. They captured that on video and shared it widely.  I was not blessed with your gift for playing sports, so when you remarked several years ago that I had a good golf swing, I was pretty pleased with myself. The boys played baseball, soccer and hockey so you were always on the go and stretched every dollar Dad made to pay for all the activities and multiple trips to Canada.

Speaking of stretching a dollar---I was one of the best dressed kids at Our Lady of Hope and later, Cathedral, because you were one super shopper. I never went without the latest trend-wear---mohair sweaters, madras anything---because of your deft use of King's layaway plan, Filene's basement bargains and Mark and Carl's, aka, the "junk shop" finds. I definitely inherited the shopping gene but not quite the knack for the bargains that you had.

You have had many friends during your lifetime. Most of the ones I knew from my childhood days- Kay, Barbara, May, Jean, Peg, Eleanor-are gone now; but you have cultivated new relationships in the last two decades and manage to keep quite busy with your cousins Peggy and Mary and a posse that includes Carol, Kathy and the Patty's and of course the early morning McDonald's crowd where you exchange political views with the likes of Dan and Norm and others. 

Next month I turn the age you were when we lost Dad. I can't even begin to imagine being left without Barry at this age. You were so brave, so strong. Over the years you felt the sting of being the one at weddings and parties without a partner. But you didn't wallow in self-pity. You were a young widow. Many people asked if you wanted to marry again. I remember your response-always the same. "Why would I? I had a great man". You have navigated all these years so admirably. I know you'd say something to the effect you didn't have a choice, but that doesn't lessen the fact you chose to live and you have lived well.

Yesterday, when Michael asked what you wanted for your birthday you replied, " to be here for the next one".  Music to my ears. Thank you for everything Mom. I love you. Happy Birthday!

Thursday, December 14, 2017


It's now official. McCoy & Connolly Consulting, Inc. is no longer. We signed the dissolution papers this week. This has been in the works for quite some time. I had begged and guilted Nancy to keep going for several years when she was clearly ready to be done. When each of our lives exploded with health crises two years ago, our business took a bit of a hit because we really couldn't be away. Thankfully, our adult children are recovered, as are we, and even though neither of us needed the "smell the roses" reminder after all the twists and turns of our lives, the time had clearly arrived---even for me.

When I read the document "Written Consent for the Wind Up and Dissolution..."  I felt sad. Not crying, death of someone, sad---just a realization that this tangible thing -our business- was done.We started out in the consulting world over 15 years ago thinking we might last 5 years; certainly not anticipating we'd make it three times that.

Nancy and I were workplace colleagues for 10 plus years. When our academic medical center made the ill-advised decision that home health was no longer part of their "mission", thus dismissing the arm of their system that provided continuity of care to their patients, we felt as if we were punched in the stomach.

"Want to try consulting?", I asked Nancy as she walked into my office during the wind down period of agency closure. Nancy replied without hesitation, "Yes!" A fifteen minute visit to an attorney the following week and McCoy & Connolly Consulting was born. Within three weeks of the agency's demise we had our first client-an agency in trouble after a disastrous state survey. We prepared their Plan of Correction and we visited the agency for several weeks to ensure the plan was implemented appropriately. That would become our specialty---"fixing" agencies that were out of compliance and giving them the education and tools to comply with  extensive state and federal regulations.

We racked up quite a bit of air and road miles, stayed in a variety of lodgings from high-end to a couple of dumps, and ate some pretty fabulous meals. We had clients representative of the ethnicities of the world---and many of them insisted on feeding us as if we were in their home. Most of our clients were good people-in home health for all the right reasons. A few were not. We got stiffed  once. Lesson learned. Collect a retainer. We got lost a LOT. I usually drove and Nancy navigated. She wasn't the best at directions, terrible actually, and she didn't improve much in a decade and a half.

Nancy and I are very much alike in our home health philosophy and couldn't be more different in many other aspects of our lives. Nancy lives in a rural area and has chickens and vineyards. I often say, "she grows the grapes, I drink them." I live in the suburbs by the beach. I shower in the AM, Nancy at night (very helpful when you share a room). The products I use for skin, hair and  make-up could easily claim the entire bathroom counter.  Nancy, not. I told her many, many times how lucky she is to have aged so well. We don't share the same political or religious beliefs either and yet---we managed to navigate even that difficult terrain. It all just worked- so naturally, so easily, so well.

We had a lot of laughs in the rooms we shared to save our clients some expense money. We also had many moments where one of us propped the other up after a sad life event and during other personal crises. Nancy is a good listener. So am I. We were a good team. The greatest gift of the business we had together is the friendship that developed during years on the road, in the air, over breakfasts, lunches and dinners.  The friendship will continue. I'm glad for that. This is a bittersweet moment for sure.

But---mostly sweet.

Monday, November 27, 2017

Back at It

I haven't posted a blog since August. I didn't realize it had been so long until just a few minutes ago when I saw my previous post. I can't say exactly why I've been absent for several months,but I suspect there are a number of reasons. Among them, I am far too preoccupied with the state of our nation and the polluted, pathetic, politics of the day.

Then--- there's the matter of Michael returning to classes at Cal State San Marcos for which I am enormously thankful. The beginning of the semester was a bit stressful. Michael hadn't done any reading or writing for three semesters prior to his return thanks to the chaos of seizures,emergencies and hospital stays starting with the bloodied bathroom incident of November 2015 (I'll spare you the picture Dyan) and mercifully, and for reasons unknown, drawing to a close this past February. He is doing well in two complex anthropology classes and is enjoying the learning process. That's all good and it doesn't seem it would impair my ability to string a few thoughts together and put them in writing.

So---here it is- just days from December 1st. November is designated as Epilepsy Awareness Month. Generally, I'd post a few blogs and hope I'd make a difference by reaching someone, somewhere who may not be aware of how devastating and life-altering epilepsy can be both to the individual who has it and the family that cares for and loves them. BUT I have been doing a lot of soul-searching and I am questioning how effective these awareness campaigns (in general, and my own efforts) are. Most of the people reading this blog either know our situation well because they are close friends and family OR they are members of the epilepsy community OR they have read my book (more later on a small awareness breakthrough related to that). So- who am I making aware? Does it help other's with epilepsy in any way?

But then---there IS that small awareness breakthrough I mentioned. I was chatting with one of my FitTAP classmates before class began last week. She asked about Michael and mentioned she has a dear friend whose young granddaughter was recently diagnosed with epilepsy. She said her friend could barely talk about it without crying and that it had turned the family's life upside down as no medication regimen has proven effective, the child is seizing at school and when playing with friends, and her older sibling is rebelling and resentful. When we continued our conversation after class, my classmate said: " I've told my friend of course you can take care of a seizure if it happens on your watch. It's not as if she's going to die". Hmmmm. Yes-Margie was shocked to learn that indeed her friend's granddaughter Could. Die. From a seizure. I told her follow me to my car---I'd get her something and she could decide how to use it.

I retrieved Missing Michael from my car. I gave it to Margie and suggested she read it and determine whether her friend might feel a little less alone and frightened if she read about our journey and saw that we were intact and strong as a family unit, 28 years after Michael's initial diagnosis. As I reflect upon it, I think there's a lot of hope in the pages of that slim book---hope for the future, hope for a treatment that balances seizure control and quality of life, hope that when people become more aware , there will be greater understanding, less bullying at school, less discrimination in the workplace and a great deal more research. That was what I hoped to accomplish in some small measure through my own efforts at increasing awareness. And, I thought,  if I help just one person feel less alone, it'd be worth baring my family's soul in the book and the subsequent blogs. Over the years, I have heard from quite a number of people that they have felt less isolated and alone after reading about our journey. In and of itself, that's reason enough to keep writing---and keep hoping. those whose lives and loved one's lives are touched by epilepsy/seizures and to those who think they don't know anyone with it (1 in 26 people will have a seizure in their lifetime)---here's to Epilepsy Awareness Month. Hopefully, it WILL make a difference.