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.

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 café 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!

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".

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.

Right Left and All Around

So---after numerous EEGs, a PET scan,  a MEG, a SPECT scan, multiple MRIs, genetic testing and frequent and thorough record reviews and examinations by some of the best and brightest epileptologists here and in our neighboring state of Arizona during a hellish fourteen months of seizures running amuck---after all this---findings are inconclusive.

We now know that Michael's brain has no lesions (we knew that via MRIs in the past). We now know via the various scans that he has multiple focal points in both hemispheres and medially involving several lobes. We now know that  surgery, laser and Neuropace are unlikely treatment options. We now have a plethora of information about Michael's brain---more than we can comprehend. It feels as though we have done everything we possibly could to come up with a more definitive diagnosis and targeted treatment plan. And yet---we're pretty much where we were before the most recent descent into seizure hell.

We may try a new medication while dropping a current one, once blood levels are completed and IF we can figure out why, since mid-December, Michael's seizures have decreased significantly. That's right---SIGNIFICANTLY. Why? We, and that includes Michael's MD, just don't know. I suspect we very well won't figure out why.

We're not quite back to where we were prior to that bloody night of November 3, 2015, BUT we are starting to feel more confident that we will get there.  I can't say we were surprised by the results of the battery of tests though we were disappointed they didn't point to a more defined plan of treatment. We certainly didn't need any tests to validate that Michael's brain while sleeping is a abnormally busy organ and while awake, as the Mayo doctor noted via the EEG readings, it was "perfect".  

I'll end on that note. Right, left and all around. Perfect.

A Motto That Matters

The Mayo Clinic Hospital's admission packet notes this: "Our primary value-the needs of the patient come first-is a commitment made every day by every employee." This month Michael spent four and a half days as an in-patient there following a referral by his San Diego physician for a SPECT scan and an overall review of Michael's history in an effort to gain more insight and come up with a treatment plan that brings some relief from the seizures that have overtaken his life in the past year.

We don't know the results of the tests yet. We DO know this-our experience at Mayo was unlike any other we have had in navigating the health care system during the last few decades. I have been a part of health care systems that seek highly paid consultant groups advice and create new vision and mission statements rolling them out in glossy brochures and banners proclaiming this is what we believe NOW or for several years until a new regimen invites the services of yet another consulting group to reshape or shake up the temporary belief system. Employees typically don't buy into these administrative efforts to change an organization since they recognize this too shall pass.

Barry and I had numerous discussions while we were at Mayo. Why were we so impressed? What was so different? One day I said, "it's more than a motto. It is TRULY the culture of the organization; they walk the talk." Every  person we came in contact with exhibited via words and actions that Michael's needs (and ours as an extension of him) did indeed "come first." Registration staff, cafeteria cashiers, physicians, nurses, anesthetists, pre-op and recovery staff, housekeepers. Every. One. It's so simple, really. After all, hospitals and health systems exist for one reason don't they? Or they did. Once upon a time. The Mayo brothers and their father got it right many decades ago and their legacy lives on. Did you see when I posted the quote of Dr. William J. Mayo? "The best interest of the patient is the only interest to be considered." How did many of our modern health care systems stray so far from that basic tenet?

Lastly, I want to address the environment. I'm a nurse. I've been in many hospitals in all parts of this country. This hospital was the cleanest I've ever experienced. Spotless. Michael's room was quite large. The recliner provided for anyone wishing to spend the night was comfortable and easy to convert to a bed. The belt that was applied lightly to Michael's waist while in bed had a lock that only staff could access thus assuring there would be no venturing out of bed unmonitored. The Lift and Track system enabled Michael to walk and exercise and enter the private bathroom in his room ALONE while the staff who managed the lift talked through a crack in the door. Had he experienced a seizure while in the vest connected to the lift, a mechanism would have suspended him in air to avoid injury until proper placement. How did this make us feel? It made us feel safe. Safe and secure enough to enjoy dinners out and return to our OWN room until the next morning. First time. Twenty-seven years.

Our stay was not without a couple blips and mishaps. But nothing that overshadowed our overall satisfaction that we were cared for and cared for well. As we end what has been a very trying year, I wanted to write a post that felt positive and grateful and gave me hope for the future. I have a plan. I'm on a mission to improve services to epilepsy patients a little closer to home. Wish me luck. And Happy Holidays to you and those you love.

Time Out

My friend Suzanne is coming up on a milestone birthday later this month.. She too has had a rough year---in fact, a rough couple of decades juggling some heady life issues and a busy professional life. Somehow, whatever she and I are going through we seem to find the right cord of caring and compassion to support one another-and that coupled with a very healthy dose of black humor helps us to get through some of the more challenging aspects of our lives.

So....the start of what I believe will be a protracted celebration (yay) began yesterday. Suzanne arranged a visit to a spa north of San Diego. She described it as the "Target of spas" so as to keep my lofty expectations in line, I suppose. Our friend Julie offered to drive and we set out at 7:30. Before I left, my Mom and Meaghan admonished me to relax and Barry asked that I not "boss from afar". The plan that I sketched for dealing with an emergency was that Barry would contact Meaghan and Meaghan could drive and get me if ANYTHING went awry. That plan was still on my mind when I got in the back seat of Julie's car. In fact, I was very excited to indulge in the day that Suzanne had mapped out from start to finish but there was that piece of me that couldn't let go of the what if. After we were on the road for 45 minutes, Suzanne announced we had another 45 minutes to go. I hadn't realized the spa was such a distance. That's the instant I resolved  to Let. It. Go. To intend and commit to relax.

We arrived at Glen Ivy at 9 AM. We were efficiently checked in by an engaging young man. I looked around at the great selection of clothing and beachwear in the adjoining gift shop. I could have spent some time there if I were not so eager to get to the  perfectly appointed locker room with the requisite marble and stone showers, dressing areas, make up counters, steam room and Jacuzzi.  A first impression-this place would be just fine-better than fine. Perfect. We changed into our suits and walked through the lushly landscaped grounds to the first stop---a Roman tub-like bubbling pool with epsom salts to soothe our muscles and warm our bodies for our upcoming massage experience. The beginning. Ahhhhh.

Next---my hot stone massage. Vanilla and tangerine scented lotion and the warm, soothing, smooth rocks applied with gentle vigor first to feet and calves and legs---then to all the dang stress spots all over my back and down to my fingertips. I think perhaps I let out a mini, low pitched sound or two but mostly I just lay still somewhere between an oncoming sleep and the wistfulness that this just would not end PLEASE. For several moments after my 50 minutes were up I didn't trust myself to get off the table. I was so relaxed my limbs felt like jelly. Ooooh.

Following another dip in the epsom salts we claimed our chaise lounges at one of multiple pools on sight to soak in some rays on what was a perfect Southern Cal day. Close to twelve, Suzanne announced it was time to hit the bar for a Pina colada and get a float for the shallow pool. We chose to float in beanbag-like "chairs" with an extra one in the middle upon which to rest our fully relaxed legs. We floated and floated in circles and every now and then touched the bottom to rearrange our sun and shade positions. We took in the plants and trees and watched a couple of very busy woodpeckers fly between several enormous palm trees. I tilted my head back and saw blue sky and mountains and those palms. Oh my.

Lunch was great-a little healthy, a little wine, a lot of chatting. Nothing serious really- but interesting. Julie asked "if you could take any kind of class what would it be"? The simple question caught me a little off guard. I first said painting. Then no---maybe flower arranging. Whoa. What would I really want to take? Some food for thought.

After lunch a little more lounging at our sunny spot by the pool and some deeper conversations about losses in our lives and how people aren't always what they seem but sometimes they ARE. Talk about our children--their plans. What we want for them. Sharing. Good for the soul.

Time for a dip in the mineral pool. The  sulphur smell permeates. It's warm but not my fave. It's a short dip and then we moved on to the mud pool. We stood knee deep in brown water and applied mud from a mound all over our bodies. The mud reminded me of dark caramel sauce and it was smooth and  cream-like going on. We all had that orange look we've become accustomed to seeing (can't resist) when we entered the  warm stone room where the mud baked on. Then -exfoliation with a towel and washing off in the shower. That was a LOT better than I expected. There's a bit of camaraderie with other spa-goers that perhaps is caused by the masking of how we really look or how we all look so much alike. Who knows? It was fun!

The finale of the day was our Grotto experience. I had worried about this when Suzanne initially arranged it. I wasn't sure I wanted to go underground in a Southern Cal mountain range. But as I announced on our way to the elevator to take us down, I was "too relaxed" to worry. Once in the grotto we were painted with a moisturizing lotion which had shea butter and coconut oil among an array of other ingredients guaranteed to soothe and smooth. We sat in a warm room to absorb the lotion then showered in another to wash it off. We sat in a cool room to close our pores while we sipped on hot tea and surveyed the room built underground many years ago as we each just seeped in the calm.

That would be the final treatment of the day. We went back to the locker room area, visited the steam room and showered and dressed to end our day. It was the end of the day at the spa, but not THE END. Thankfully, Julie drove home quite skillfully and pointed out when I remarked how dark it was, that perhaps that was an effect of the sunglasses I continued to wear. Relaxed. Have I mentioned I was relaxed?

We decided to forego a formal dinner and go to the bar of a local 5 star restaurant close to home. We scored a cozy corner table, ordered drinks and several dishes and continued to enjoy each other's company and bask in the prevailing feeling of the day: relaxation.

I wish this fleeting feeling of relaxation for all the caregivers I know. I hope they are lucky enough to have a support network similar to my own. Honor them. Not just this month---but all the days and months and years. Being a caregiver is at once the most demanding and enriching experience. Make no mistake. It takes a toll. May they all have some Julie's and Suzanne's in their lives.

Aaaaaaaah.