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. But...as 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. ) Anyhow...it 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

Dissolved

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.

So...to 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.

Friday, August 11, 2017

Feeling Fortunate

I have mentioned several times in previous blogs that my FitTAP class has been a life-saver in the sense that as I teetered on the edges of insanity during the hellish months Michael's seizures were out of control, dance helped me to regain and retain my footing. The positive energy, the concentration necessary to know what's coming next and what direction to turn, the indomitable spirit and joy of my teacher, the music---from show tunes to jazz to the 60's and 70's songs which take me back in time to high school and college days to today's current hits.  It's at once invigorating, challenging and great fun. And yet, it is so much more.

I never dreamed as I clung to the corner edge of the dancefloor trying to hide behind someone, ANY one, during my first class several years ago, that I would so look forward to each and every class not just for the exhilaration of the exercise and the joy of dance but to be among an extraordinary group of women.

Today I had lunch with three of the women who tap beside me, behind me or in front of me several times each week. For about a year we have managed to have these lunch outings every month or so depending on schedules and life occurrences. As we sat at the cozy table in an outside cafĂ© today, we were surrounded by people quietly engaged in conversation. We, on the other hand, were chortling loudly as various life moments were shared. And... it's not as if the recollections were deliberately funny. Two of us talked about incidents at a beloved parent's funeral. And yes Aunt Kathleen, you and you-know-who figured prominently in my shared moment!

My Mom says you should make new friends each decade of your life. She did just that. The friends she made after my Dad died when she was 67 remain close and are key people in her life as she nears her 90th birthday. I'm closing in on 67 myself, and I can only hope that my Tap girls and I are blessed with a long life like my mother and that our dancing days and lunch dates are numerous. I have to admit that after two quite close friendships abruptly ended in the past several years, I thought I'd never embrace my mother's philosophy. I'll also admit these special ladies have changed my mind. So... to my Mom---thanks for the sage advice.

As for my very special tap class---well...it has indeed been a life-saver, but it's been a life-changer as well.. The lessons I have learned are many, but the most important one may be:  find something you love to do and embrace it.  5-6-7-8 Go!

Friday, June 16, 2017

A Year Later

Last June was---well... it was one of many hellish months we experienced in 2016. Seizures were so out of control there were four 911 calls and trips to the Emergency Room, several inpatient stays and one trip following a fall to stitch a head wound caused by a fall during a brief but violent seizure.

The trauma /excitement didn't end in June. There was the intubation and ICU stay in August and another 911 call and emergency transport in October. We all agreed that the October trip was more a result of our probable PTSD versus the severity and length of the seizure. We, quite simply, were frayed and fried and for a few moments, not our usual competent, caregiving selves.

I don't know if we had another episode in us, frankly, after that October evening. The pace had been so frantic and the seizures so unrelenting since the previous November. Each time we rallied and I suppose we would have...I mean, there really isn't a choice is there? You just do what you have to do.

By the time we visited the Mayo Clinic in Arizona in December the frequency of daytime seizures had decreased significantly. In January we experienced multiple days in a row without seizures while awake; in February only one day with a seizure.. And now 18 weeks without a daytime tonic seizure save for a blip when meds were missed.

So as I said in my previous post---Here. We. Are.

Michael's taking golf lessons and going to the driving range. There's a date set to get back on that paddleboard he's missed so much. There's a request out to meet with his school counselor and talk about transferring his college credits so he can complete his degree on-line. There is discussion about securing an internship so he can get some experience working with sound or visual effects. And, we are weaning (very, very slowly) the last drug that was added to his regimen.

We still don't know for sure what set off the furious seizure spree. Nor do we know why they slowed and then stopped. It would be nice to have answers; but like so much of epilepsy and it's treatment modalities it's hunches and educated guesses, and anecdotal remembrances. Hit or miss.

Whatever the reason; we'll accept this gratefully. Our newest "normal".

Sunday, April 2, 2017

Emerging

We are creeping out of that deep, dark hole we've inhabited for fifteen months. For the past two months Michael has been seizure-free during waking hours. He has resumed many of his activities. He's back to doing his share of household chores. He's back to independently performing all his activities of daily living including showering behind closed doors. He just entered the house after taking a long walk in the neighborhood with Katie. He's clamoring to take some golf lessons and is anxious to get back out on the water to paddleboard. He's coming back-and so are we-but the climb out might be just a tad more difficult for the parents and sister.

It's hard, this letting go again. We're traumatized, I suppose, from the falls and injuries, the intubation and the severity and frequency of the seizures. My stomach still gets butterflies when I hear a siren. I have to have lengthy self-talks and keep myself madly busy when I hear the shower. If the neighborhood walk seems a little long I might check the mailbox several times to assure myself Michael isn't laying curbside in the street. It's difficult to push away the bloodied images; hard to forget the many, many seizures we were powerless to stop. But we will, because we MUST. For Michael. For us.

So, here we are. It didn't kill us. It did make us stronger. We're grateful that, for whatever reason, the seizures which overtook our lives have ceased. We are easing into a new "normal". There is more healing to occur-especially emotionally, but we are remarkably intact. So many fine people experienced this extended dark period with us- profoundly smart and competent professionals, my Mom and brothers, extended family including aunts, uncles, cousins and dear friends. There were many prayers, so many positive thoughts, countless encouraging words and lots of warm, loving hugs. If you ever doubt such gestures make a difference, think again.  They do.

Epilepsy sucks but it won't win. Here. We. Are.