Perspective: Finding Humor and Gratitude in the Fear and the Chaos

I'll be honest--adjusting to our new epileptic normal has been neither smooth nor easy.  

This diagnosis isn't just about me.  It affects my family, my friends and potentially, even complete strangers.  We have to double and triple think any activity we want to do (Am I too tired?  Will I be too tired after?  Is it seizure-safe?  Will we have access to emergency services should I need them?), we have to double and triple think leaving me alone in the house with and without the kids, or in a store or at an activity.  Epilepsy has introduced us to the local police department and other emergency services.  It has also introduced me to a wealth of new friends, all of them ready to support me and my family (as it turns out, people with epilepsy are just as awesome as the duck people we've met through the internet).  As that family, we've hit a few bumps in the road, had a few deep why us moments, had snafus with the arranging and rearranging--and rearranging again--of Shawn's work schedule to fit our (my) appointment schedules and school schedules, and I've been a *little* overwhelmed at times with Avery's intense attention.  We're all tired, the exhausted kind of tired that sleep doesn't solve, from constantly being on guard.  I'm not getting out as much as I'm used to, and when I do, it's usually only to see a doctor.  Shawn does try to make sure I get out, but I'm beholden to his (very necessary) schedule.  

Right now, our world revolves around my seizures.  It's not how any of us want it, it's not how any of us imagined our lives, but it's just how it is.  We do our best to just stay in orbit most days and occasionally leave Planet Epilepsy when it's safe.  So much is beyond my control and I just don't handle that well.

I cannot shower alone, go to the bathroom alone (I mean, I've always had an audience, including a duck, I'm a mom after all--but now it's a safety issue), shop alone, sit alone, sleep alone.  Sigh.  Avery's anxiety reaches a fever pitch when Shawn is at work, so my niece frequently comes over to 'babysit'.  A few weeks ago I did reach the end of my rope; upon arriving at Target, I told my people to take their own cart, go in a different direction and don't even look at me if we passed each other: "You don't know me, I don't know you.  LEAVE. ME. ALONE."  Avery panicked most of that hour, but I needed that time away from them to do my own thing.  I needed to be Amy, not The Epileptic.  I am relieved to be starting our school routine, as Avery has something else on which to focus and obsess.

For myself, I think the most difficult part (aside from the total loss of independence) is watching my normally stalwart, level-headed, solid-as-a-rock husband become completely unglued--while trying to maintain his cool for me and the kids.  But I know he's scared.  And that scares me.  My husband doesn't get scared.  I will never forget the look on his face as the nurse ushered him out of the OR with newborn Ezra, and it was the same look as I came out of my last seizure.  He's not just scared, he's panic-stricken.  We've thought about videoing at least one seizure so I know what they look like, but Shawn admitted he can't do it, and I don't think I could watch it anyway.

I do have fears of my own, especially knowing how scared Shawn is.  My fears range from the typical ones, such as losing control of my bladder or bowels, especially in public (knock on wood, not yet!), or how a migraine,  sleepless night or particularly stressful day could lead to a seizure (all three together are certain to), or having a public seizure (not sure how I can have one more public than in the middle of the road, but I'm sure I'd find a way); to the moderately frightening, such as hitting my head or otherwise injuring myself or someone else; to the absolutely terrifying, like not regaining consciousness, not starting breathing again on my own (or at all), injuring myself in a life altering manner, hurting someone else or some other permanent circumstance.  I have children to raise, my boys' future spouses and perhaps even grandchildren, to meet.  I have responsibilities.  I have things I love to do, want to do, need to do.  I have people I love.  I'm afraid of losing, quite literally, my mind, as my memory is nearly nonexistent and we've moved beyond Words With Amy to Sentences With Amy.  Shawn makes me work for it though, but only if it's just us; otherwise, he helps, as to not allow me to feel embarrassed.  I'm afraid of losing myself.

So we're working on perspectives.

One of the many things I learned about while working at the grief center was Wallowing Days.  Everyone needs a Wallowing Day, no matter what you're going through.  Yes, one Wallowing Day can often turn into several--but the important thing is to get stuck there.  You just can't allow your Wallowing Day to turn into a Wallowing Life.  I've been there, done that, don't care to return.

Yes, we're working on perspectives.  We're trying to find the humor and the gratitude in our new normal.

I'm allowing everyone to laugh at some of the things I do and say coming out of seizures (apparently I'm rather belligerent and argumentative, convinced I did not just seize, even though I obviously just did, and Shawn is the most trustworthy person I know--but it's weird coming to with complete strangers in my bedroom because he calls rescue nearly every time, even though he knows he doesn't have to--he's run seizure calls, but I suppose it's different when it's your own wife), and we frequently take bets on the most inconvenient time for one to happen.  When I do think one is likely to happen though, I quietly tell Shawn, then we both quickly and quietly leave the room.  The kids don't need to see anymore than they already have.  Want to talk humor?  Autocorrect insisted I meant "elliptical" in my first paragraph, not "epileptic".  Yeahhhhhh, it's funny.  Go ahead and laugh.  I give you permission!

We have so much to be grateful for right now, even in the chaos.  For starters, Avery's seizure journey is over, but because of it, I'm able to have the understanding he needs because I remember the fear I felt then.  Shawn's company, notoriously not an employee friendly company, is working with him so he's able to be around the house more.  We have friends making themselves available to help with scheduling, travel and appointments.  A co-op director who didn't run screaming when I trained her in seizure first aid and how to use my rescue med.  I've taken back over the grocery shopping now that our local stores finally deliver, so that takes a lot of stress off Shawn.  I'm trying to regain some of my strength and general life-giving energy through baking, especially bread.  It feels so good to have my fingers back in dough, working it, shaping it, kneading it.  It's therapy for my soul.  I do what I can on the days I can, knowing I most likely won't be of much use the following day.  But we're grateful for the good days I do have.  And the smell of baking bread.  We can have our fears, but cannot allow them to rule our lives.

We do still have so much to be thankful for.  This doesn't mean we don't have hard days, it doesn't mean we can't admit to those days--gratitude and difficult don't cancel one another out.  I'm not here to tell you otherwise or blow sunshine up your skirt.  If you know me, you know I'm no Pollyanna.  But my kids are watching how I deal with this.  I'm setting examples for them, while also setting a precedent for how I want to live.

Perspective is lifelong work.  It's not one thing which occurs automatically, it's always evolving.  And we're here to evolve with it.

Dear Sister

I started this last year.  I never published it because it felt so raw.  It still does.  Even today, so much of this still applies.  The grief still feels fresh.  I'm still unable to say "My sister died," without crying.  Grief is far from the safe, neat, linear healing journey we crave as humans.  Grief is messy.  Grief steals your happiness.  It settles deep into your soul if you're not careful.

I still can’t say the words “my sister died,” without having to pause, without my voice faltering and tears spilling over.  Grief is a two-faced, low-life, lying bitch who lacks an expiration date.  

Nancy, I don't know if I will ever be able to at peace with losing you forever.  The irony is, when we cut contact off with each other so many years ago, I thought I was already at terms with losing you.  What I really did was abandon you.  And I'm so sorry.  It is a constant struggle to forgive myself.  I'd kicked the toxicity in our family, and I walked away feeling and thinking I was free and clear.  For several days after your death I insisted to Shawn I was fine, I'd already dealt with your loss years ago.  It quickly became apparent I was absolutely not fine.  The physical signs of grief were there long before I was able to admit just how deeply I was feeling your loss—when I wasn’t screaming or crying or apologizing to you in my sleep, I was having stress induced seizures, days-on-end bouts of insomnia, and unrelenting anxiety and constant migraines during the day.  I suffered a complete inability to function, barely able to even go through the motions of daily life.  I endured severe separation anxiety from Shawn while was he at work, developing extreme phobias and even superstitions.  I was terrified to let my children out of my sight, even in the next room or outside without me.  I began to constantly check in on my friends, probably to the point of harassment.  After losing you and Angie so close together, I began waiting for the other shoe to drop, my imagination running wild with who I would lose next.  Shock (and the pandemic) settled in, and while I wish I could say that protected me for a bit, in the end it did more harm than good, causing me to completely check out.  My heart attack followed ten months later, along with other stress and grief induced health issues.  And now, I'm the one who has to live with forever and the pain of not having been the bigger person.  There is a sting which has not subsided.

There are so many things I need to apologize to you for, I just don't know where to start.  Admittedly, I still have days when I'm angry with you for the mess you left behind.  I would have changed so many things if I could've seen the future.  It's true what they say, hindsight really is 20/20, huh?  I know much of what and how I feel now comes from my imagination, what could have been, what should have been between two sisters.

So many should haves...

We should have stood up against her together.  Someone should have stepped in.  Someone should have stopped her.  Her abuse should have strengthened our relationship. 

I'm sorry I never stood up for and with you against her.  It's a pathetic excuse and reason, but I think I was just relieved she wasn't coming after me.  Until you left, I never understood how much of her abuse you shielded me from; whether you did so intentionally or not, I'll never know.  I'm sorry I never apologized to you in person when I still had the chance, while you were still alive.  I'd made my mind up about so many things about you and our differences as moms and adults.  I had a horse called High and boy, did I ride that sucker.  I was a judgmental bitch with a narrow view of life, unable to fully comprehend the damage caused to both of us.  I said so many wrong, awful things I would never say now.  Each one of your abusers had a hand in your death.  I blame them.  Where was He in all of that?  I scream at Him sometimes, from inside my head--"WHERE WERE YOU WHEN SHE NEEDED YOU?"  For that matter, where was He when we needed him?  You turned your back on Him because you couldn't see His hand--honestly, I don't know that I can see it either anymore.  Where were the people who were supposed to protect you--protect us?  We'll never receive justice.  She'll never be punished--at the very least, she'll certainly never see the error of her ways and apologize.  I'm angry.  I'm hurt. I do not believe your soul is at rest.  She'd never allow such a thing (and neither will he, always the victim).  Now I can see, all the times you were angry at me, you were most likely angry at her and I was just the easier, safer target; while I’m sure there were times you truly were angry with me (we were sisters, after all), I now believe when you were angry with me during our childhoods, you were really angry at her—I was just the easy, most logical target.  You couldn’t safely lash out at her, so you turned on me.  I want you to know—I don’t blame you.  I’m sorry she put you in that position.  I'm sorry I was the Golden Child, the favored one.  And you were the Scapegoat.  We both had our roles to play.  I will never know what it was exactly I did to deserve that 'honor,' but I'm sorry I allowed her to pit us against each other in that way, and so many others.  I'm so sorry I let her use me.  I'm so sorry for consistently choosing anger at you over choosing trying to make a relationship with you work.  I'm sorry I could not see you for the hurt, damaged child you were.  I was hurt and damaged too, both of us products of Them, but our 'hurt and damaged' were different, and I failed to understand yours.  Even worse, once I did understand it, I judged you for it, I blamed you.  Our shared childhood, experienced so much the same, should have bound us together, strong against the world; yet, our shared childhood, experienced so very different by both of us, made us enemies instead, weak apart from each other.  Life in that house should have united us.  Instead, it divided us.  

I cling to memories and keep you alive for my kids.  I hope my kids will learn from me and you, and have better, closer sibling relationships.  It's important to me they have each other.  I'm sure you knew, but I used to sit in the hallway outside your closed door, listening to you practice your flute and piccolo.  You were so talented and I loved hearing you play.  I was always a little jealous how naturally the piano came to you while I struggled to just plink out the basics!  Oh, how badly I wanted to be as good as you!  You played with such feeling.  Whenever I hear flute music now, I find my head lilting to the side, a smile spreading on my face, remembering the beauty with which you played.  Remember that time you went toe to toe with our neighbor across the street in Virginia Beach, defending me and my friends?  I can't even remember her name, or her kids' names, but I was so proud and happy to be your sister that day.  Her kids were harassing me and my friends and after we all had words, she came marching across the street, ready to tear someone a new one.  Instead, you stood up for me and Marcy and Shirley in a way I'd never seen before.  I stood in such of awe of you that day.  I have to wonder now if, in your own mind, you were standing up to Janet.  I remember that same year, early Christmas morning, I heard you come out of the bathroom and you took me down to see the tree, just you and me.  It felt like a secret, our secret, a big secret with my big sister.  I probably did something bratty like tell on you later that morning (in fact, I did tell on you... I said I'd caught you using the red light on your Walkman as a flashlight to snoop...), but that is a memory I hold dear now.  Kind of like the time you came to my rescue in college, dropping everything, no questions asked.  You were my big sister then, protecting me, looking out for me.  In that moment, you were the sister I'd always needed you to be.  I guess that is one of a few secrets you took to the grave for me.  I'm certain you took some of your own secrets with you, too.

Every day that passes, I still miss you.  I miss what might've been had we both hung in there.  I keep hoping the pain of your absence will lessen with time.  It hasn't yet, and in six months you'll have been gone four very long years.  

I miss you, and I'm sorry.

I'm Not Your Babysitter

Throughout the spring, summer and fall, our family enjoys attending local music festivals and other forms of outdoor fun.  I seldom get out of the house anymore and the kids refuse don't either, so when we have the chance for fresh air and fun, we jump on it.  Well, Shawn and I do.

Inevitably, our kids find other kids and vice versa to play with at these festivals.  Our hope heading out is they will actually find other kiddos, allowing us to enjoy ourselves in relative peace.  We keep a close eye on ours, have Avery check in periodically if he heads off on his own, and we're quick to pull everyone back if it looks as though they're imposing, apologizing to and thanking the other family for their patience.  I'm not there to watch anyone's children except my own, nor do I expect anyone else to watch mine.  I'm not a babysitter; random children are not part of my circus.  I've got enough on my hands with my own monkeys and circus, thank you very much.

This past weekend, we went to one such music and flower festival.  We were really looking forward to it.  The weather was perfect, one of our favorite bands was playing, and one of our favorite local restaurants was selling their incredibly delicious brick oven pizzas.  We were looking forward to walking among the flowers, buying some flowers to take home, watching the kids play and listening to some great 90's tunes.  I even dressed up a little to make the day feel more special.  It was going to be a great day!  We had plenty of snacks for the kids, Avery packed a book and both boys had action figures with them.  We tend to (over)prepare for any and all contingencies when we take our children out, so I'll be honest, I don't have much patience for people who don't.  You're a parent, get it together.  

We laid out our blanket, unpacked our things and sprawled out all over each other--okay, Ezra didn't, he squatted because the grass had the audacity to be under the blanket.  Sigh.  The day was just warm enough, the sun bright without being too hot, we had a nice breeze blowing, and the sky was a beautiful blue.  It was an amazing relief from the summer heat.  

Before we'd been there even fifteen minutes, we'd attracted the attention of a 4-5 year old boy who was very curious about Ezra.  Yay!  Go play!  Be gone with you!  

No such luck.  Little Boy (LB) was insanely curious about what looked like to him, I'm sure, our many treasures, and Ezra wanted nothing to do with what felt like to him, I'm sure, this invasion.  Uninvited, LB plopped himself right down on our blanket, quickly making himself comfortable.  A little too comfortable.  If the boys were using their little personal fans (aka, "please be quiet and stop complaining" fans), LB was hot.  And not just hot, but soooooo WHINEEEEE hotttttttt.  When we were eating our pizza, he was HUNGREEEEEE.  Juice boxes?  Yep, you guessed it--he was THIRSTEEEEE.  I don't know about you, but I'm not giving food or drink to a child I don't know, knowing nothing of said child's medical history, dietary needs or the personal ethics of the parents.  Not going to happen.  However, I also wasn't going to tell my own hungry and thirsty kids they couldn't have their needs met because of this child.  I don't have much patience when my own children whine at me.  So a complete stranger's kid whining in my face?  Hard NO.  Please go back from whence you came.  Now.

I have to really give Avery a lot of credit here--LB had grabbed one of his action figures before any of us could say anything, and even though LB brought it back when I told him it needs to stay on the blanket (and you need to go find your people...)--he was a 4 or 5 yr old kid (presumably one without boundaries and rules), so he played like one.  I whispered to Avery, "deeeeeep breaths," commending him for how well he was handling it.  I know he was struggling to not climb the nearest wall, have a full on meltdown or even scream point blank at LB (Me too, kid.  Me.  Too).

After politely suggesting he should return to his family ("Do you know who you came here with?  Can you point to them?" "*shoulder shrug* I'M HUNGREEEEE!!"), we surveyed the entire grounds for any individual or group watching him, watching us, motioning to him, calling for him, heading our way--nothing.  Not a single person showed any interest at all in LB (I wonder why--??).  We repeatedly, cheerfully, and politely, suggested he should go find his people.  I'm not exaggerating when I say at least forty-five minutes went by before we finally found the group we thought he belonged with: three young girls, all drinking wine and giggling and taking selfies with each other.

Oh, sorry--did I audibly groan just now?  Or perhaps the earth tilted a little when I rolled my eyes?

Seriously.  I've been (unwillingly) entertaining your child for nearly an hour so you can have your wine and take your selfies in peace?  Nooooooo.  Nope.  Not today.

I realize this makes me sound like a very not nice person, so to be clear, we would have been just fine if LB and Ezra played around the blanket or ran around while staying within sight.  We would have been fine if they'd given us a wave, ANY sign they acknowledged him and were keeping their eyes on him, ready to reign him back in.  I just did not have the patience, nor the desire, to have someone else's child up in my face, nor did Ezra want anything to do with LB.  If my boys wanted to share their action figures and play with LB, I would have encouraged it, but I'm not the parent to command my children participate when they aren't comfortable.  My children have their own voices for a reason.  Please don't ask how well that works for me on a school day.  Sigh.

This group finally realized we were staring daggers in their directions (at this point, we had popsicles and the kid was practically screaming because he didn't).  Young Lady #1 (YL1) skipped (SKIPPED) her way over to us, cheerfully demanded to know my name (excuse me?), then, referencing LB, asked if it was "cool if he could chill here (with us)."  I laughed out loud.  Wrong answer, I know, but my next answer wasn't much better.  I explained (slowwwwwleeeeee) that we are strangers, we were there to enjoy ourselves and family time, I absolutely was not there to babysit her child ("OH! He's not my kid, he's my little brother!" Ummm--don't care!  Not the point!  Still not my problem!), but if he spent anymore time monopolizing mine, I'd be happy to submit an invoice to her for my childcare services.

My late 40s have been brilliantly, wildly liberating, just saying.

I thinnnkkkk by the look on her face, that wasn't exactly the answer she was expecting.  Oh well.

It appeared LB was there with YL1 and two of her friends; he was snack-less, drink-less, toy-less, bored and not well attended at all.  Later, Avery said he saw LB take a coke from another family's blanket and run off with it.  Oh my gosh.

For our remaining two hours there, we were, mercifully, left alone.  LB, YL1 and her friends gave us and my RBF a wide berth after my offer.

Look folks, I'm tired.  My family is tired.  It's the kind of tired sleep doesn't solve.  I had 6 seizures in one 24-hour period earlier in the week.  We never know when I'm going to do my little teapot routine, so we're always exhausted and anxious from being on guard.  The meds have made mush out of my brain.  So, when we do get out, I want to enjoy my time and my own family.  I'm not there to entertain your stragglers or make up for your laziness and inattention.  My family and I deserve a break (--especially when we've paid well for it); there haven't been too many of those around for us the past six months.  We need all the breaks we can grab up, especially with our school year nipping at our heels.

I don't care what you do with your kids, just don't dump them on me.  Don't trust I'm happy to entertain your child so you don't have to.  Don't expect me to watch your precious little one just because I have my own.  And please, for the ever-loving LOVE, do not presume I am content to listen to your child yammer nonstop as s/he crashes our party.

I'm not running a daycare on my picnic blanket.  I'm just there to enjoy myself.  I am not your babysitter.