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.