I have long preached 'self care' to other mamas, while completely neglecting--refusing?--my own advice (as well as my body's deafening screams). As such, ignoring my body and mind has caught up with me (again). This post is not meant to elicit pity, sympathy, or OHMYGOSH reactions. I'm also not here to bring drama (although, I'm quite certain I am the drama), but you need the full story to understand (and honestly, some of it is just funny--and it's just therapeutic for me to get everything out of my head). Think of this as a cautionary tale, rather than one of woe. Sometimes shit happens, and, well, shit happened. I do not want pity, platitudes or sympathy (no advice either, unless we ask, please--we're navigating this with the help of several carefully chosen and trusted professionals)--I'm determined to not allow this to completely sideline me. I am not feeling sorry for myself and I refuse to be a victim or a hostage to this disability. Life. Will. Go. On. Perhaps not at the speed I'm accustomed to, but it is absolutely going on. I am not using this for attention Instead, promise me you'll finally schedule the medical appointment you've been putting off, you're committing to cease overcommitting, or you're going through safety lessons and emergency responses with your kids. My intention is only to share a recent lesson my body and brain forced me to learn when I did not respond to their desperate pleas for help: A lesson in listening to your body, making time to take proper care of yourself, and making time to rest properly, well and purposefully when you need to. Just take my word for it--Listen. To. Your. Body. PLEASE.
Grab your tea and get comfy, this is a long one.
No, really. I'm not kidding. It's like, really long. Tea, yoga pants, strip your bra off, grab your comfiest pillow and your cat. In fact, if you need several breaks while reading this, I wouldn't blame you.
*ahem*
When life went sideways three years ago (for those of you who are new here, my best friend and sister died suddenly within 2 months of each other, I had a heart attack and dangerously low anemia several months after my sister died, so I was hospitalized for a week, and oh yeah--the pandemic shut the world down just a few months after my heart attack; more recently, I received a diagnosis of myocarditis, possibly due to the Covid vax, but am doing better), I began having nocturnal tonic-clonic seizures (aka, grand mal). They were few and far between, didn't seem to affect daily life, I came out of them within five minutes and they were not inhibiting my ability to function. After consulting with my neurologist, as well as a few inconclusive tests, we chalked them up to stress and decided to just keep an eye things. They've always woken Shawn up, so he would watch the clock, watch me, ensure I was safe, I'd go from seizure to sleep, not realizing I'd seized until he told me in the morning.
That was all fine and dandy until three months ago.
Remember in my first paragraph I stated sometimes shit happens and it did? It absolutely did, and in a rather monumentally public fashion.
Pulling out of Starbucks onto the main road through our tiny little town, I began to seize. Yes, this was while I was driving. Yes, this was with my child in the car. Yes, my child was terrified--but let me tell you, he went right into action and was quick on his feet. This kid is typically paralyzed when presented with fearful situations, but WOW, we are so proud of him. No, seriously--I want you to take a minute to process and appreciate his actions. This would be a big deal for any 12 year old, but a kid with autism and extreme anxiety? Freaking HUGE. He used my phone to call Shawn (we got lucky--I'd been texting Shawn in the drive thru, dropped my phone in the passenger seat as I pulled out of the stop sign, so it was already unlocked and open to Shawn's profile), who immediately got in his car with Ezra (who was pants-less, of course!), and headed out to find us. Avery then called 911, put the car in park and turned it off. We have no doubt he saved lives (Rumor has it, Avery and Elijah will be receiving awards for their heroism from the police department! And in yet another effort to find the hilarious in this mess, we've learned Elijah needs special permission from the town powers-that-be to attend the banquet... I want to be there when the captain brings that up to his chief, the mayor and board of supervisors! And yes, they're absolutely using Elijah for a photo op, but if it means even one parent has a safety talk with their child, it's worth it.). While on the phone with dispatch, the town police captain, who happened to be off duty and behind us, realized something was wrong, used his personal vehicle to block traffic, then took over reporting to dispatch for Avery (apparently, once I came out of the seizure, I kept demanding to know who the "looky-loo in the Mossy Oak" was and telling them to get him out of there... Ohhhhh, he's the police captain? He's your boss so you can't make him leave? Got it, okey dokey!). While waiting for rescue and other police officers and also trying to keep Avery calm, the captain had him relay my medical history to him. Avery also gave my keys to the police captain, then relayed my medical history to the EMTs.
Keep in mind, my husband was driving through downtown--Avery and I were uptown on the other side of town--with windows down, yelling for Avery, listening for sirens and looking for any sort of crowd that might look like a medical emergency. I've never turned on the location services on my phone (don't worry, they're on now!), and Avery had forgotten to tell Shawn where we were in his panic to call 911, so Shawn really had no idea where we were. He said it's the quietest Ezra's ever been!
Coming to--but not knowing/understanding I'd been out and was coming to--I found my car surrounded by 5 police cars and 2 rescue squads, but it definitely was not sinking in. What in the world???? I had two police officers and one EMT at my driver's side window and another EMT on the passenger side reaching through taking my pulse. I yanked my hand back, trying desperately to make sense of everything, hoping for any clue to alleviate my confusion. One police officer and the EMTs were trying to talk me out of my vehicle and I wasn't having it (I'm a stubborn pain in the ass, but also did not grasp the situation). I knew there'd been no reason for me to have been pulled over, I didn't remember being pulled over, then demanded to know why I'd been pulled over. One EMT stated they thought I'd had a seizure or a stroke. No one explained to me that Avery had called 911 and why, they didn't explain why they thought I'd had a seizure or a stroke--I was just very shocked by, and unsure of the attention. I insisted I was fine, I wouldn't put my kid in danger (uuuugggggggggh, sigh, someone should've told me, maybe?), I took my sunglasses off so they could see my pupils, maintaining that I was fine; we were not prepared for a seizure to strike during the day, and I hadn't had one for several months, so it did not occur me to at all that my brain could've randomly treated me to a roller-coaster-ride-during-an-earthquake experience. I had absolutely no feeling of, not even the smallest inkling of what just happened. There hadn't been any warnings, no signs Avery and I have been able to discern. I was definitely a *little* on the argumentative side (I have since called and apologized to the police and rescue crew), as I was frustrated with myself, embarrassed and scared when I couldn't answer their attempts to assess my mental status, repeatedly telling them I couldn't answer because I was nervous and felt put on the spot (if you need a good laugh, I could not think of our president's name, blurting out "OBAMA'S VICE PRESIDENT!" One of the EMTs chuckled and said, "Okay, fair enough." When trying to give them Shawn's phone number, I was mentally repeating "not 123 not 123 not 123," to myself, as a former phone number of ours and his current phone number are one off--so I said "555-not 123-0000."). Every time I said I was nervous, they would ask why--uhhh, maybe because I have no idea what is going on??? Avery laughed later about them asking me the date, saying he didn't know if he could answer that one! Ahhh yes, the lackadaisical lifestyle of the homeschooling and not-famous-at-all! When I was trying to tell them I was fine and trying to put my car in gear to leave (no keys!), when Avery, who was standing behind my seat yelled, "MOM! STOP!" I saw his face for the first time, heard the command of absolute fear in his voice, and realized he was shaking like a leaf. Finally agreeing to let the EMTs check me over, I told them I needed to put my car in the adjacent parking lot for my son's safety (I still didn't notice it was in park, off and my keys were missing). Refusing to allow me to do so, the police officer in charge assured me they had the road blocked, so Avery would be fine... Sure enough, there were numerous police cars behind my car, parked perpendicular, the rescue squad and more police cars parked in front, and numerous traffic cones with police directing traffic (I don't remember much, but I do remember uttering, "You've got to be f***ing kidding me."). I'm 100% positive I ended up on at least one person's social media page, but I guess that's a risk you take when you, your long-haired kid, and a duck in a carseat shut down the main road for over an hour, surrounded by police and rescue personnel. My car isn't exactly inconspicuous, either. In fact, when I saw my stylist the other day, she mentioned having seen the commotion and asked what happened. Small town life, y'all.
I’m honestly relieved they didn’t do a field sobriety test because I know I wouldn’t have passed it. I wouldn't be able to pass on a good, migraine/seizure-free day, for that matter (my neuro exams are fun for this very reason). The police captain admitted he first thought drugs, then “I saw the designer purse, Starbucks and kid with a duck and realized it was not drugs or alcohol.” I can’t stop laughing over that one! I’m impressed a small town police captain dressed in Mossy Oak knew it was a designer purse! Also, Avery and I are still low-key upset we didn’t get to drink our coffee!
Having dragged the gurney out of their rig next to my car (unable to move me during the seizure), the EMTs indicated I should get on it. I declared I did not need their gurney and I would walk to the rescue squad (I may or may not have actually said, "NO, I'M NOT GETTING ON YOUR DAMN GURNEY!")--then promptly fell getting out of my car while they loaded an empty gurney back on the rig (see above: stubborn PITA). Relaying the story to Noah, he sighed with relief knowing none of the responders were any of his former colleagues. As they did their once-over, the police officer in charge got Avery and Elijah out of the car; Elijah was helpful in comforting and distracting Avery, and provided conversation for his boy and the police officers (Elijah has been rewarded with all the minnows, peas and tomatoes a good duck like him could ever want). My mismatched pajama-pant-and-flannel-shirt-clad husband (the luxury of working from home combined with an emergency that didn't allow time to change!) was also contacted with our location and arrived not soon after. I refused transfer to the hospital (remember, I still felt fine, despite the frustration and severe confusion, and still did not comprehend the gravity of the situation, also, stubborn PITA); the police captain and medics strongly disagreed with my personal assessment and encouraged Shawn to take me to the ER; Shawn asked if I wanted to go to Hospital A or B, I said B, figuring I'd be able to talk him out of it on our way home (again, see above: stubborn PITA, zero concept of what happened). No such luck. Turns out, my husband can be a real stubborn pain in the ass, too. He was also scared out of his mind.
At the ER, the staff ran allll the tests and coordinated with my neurologist, who immediately began a seizure drug regimen (I just want to go on record about the ER nurses--they were incredible. We had two scared, hungry kids with us (and a terrified husband); they not only took excellent care of me, but also cared for my family, ordering lunch trays (chocolate milk and pudding!) for the boys after overhearing Shawn trying to feed them lunch from the vending machines, and doing everything they could to make what was happening less scary for my kids).
We followed up with my neurologist a week later, leaving his office with a diagnosis of epilepsy (primary type of seizure being tonic-clonic, but we believe I've had at least 5 more since, which have differed in presentation; Want to know how high maintenance I am? I have two neurologists now: One for migraines and another for seizures.). Yup, I managed to develop epilepsy in my late 40s (I mean, who does that? Oh yeah, that's right--I do)--and not only that, I had the defining seizure on World Seizure Day. Good grief. Don't ever let it be said I'm boring, okay? I'm just going to tell you--I hate how these meds make me feel! I feel as though I'm slogging my way through a waist-deep bog. I'm frustrated, as my memory is all but non-existent, I'm having difficulty following conversations and written directions, and we're playing Words With Amy again (this game is rapidly evolving into Finish the Sentence for Amy). I'm constantly dizzy, I need help showering, as well as navigating the stairs, and I'm absolutely drained of any energy. However, I will continue this regimen to protect myself as well as my family. I may not like the meds, but they really aren't optional. What I'm angriest about the most right now is I felt as though I was finally beginning to come out of the dense fog from the past three years, ready to finally help myself--and now I've been sidelined. Again. This time, not by my own choice.
We have no idea why my brain is glitching in this manner (personal and family history of migraines and autism, which are strongly correlated to seizure disorders? Stress? Just for the fun of it? Because it could? Those are our best guesses. My FNP ran several labs in the hopes of finding answers, but they did not provide any. One was a blood serum test for Serotonin Syndrome, because of the many meds I take. Annnnddd that result? Absolutely no serotonin registering in my system at all. ZERO. The lab claimed they've never seen such a non-existent level before, so they recalibrated their machine and ran it twice more. Laugh with me, folks!), but we are educating ourselves to be prepared for the next one.
Weirdly, I think I am taking it better than Shawn and Avery (Ezra did not see the actual seizure so he doesn't have a concept of this); I have never been a fan of the it-is-what-it-is mentality, but honestly, it really is just what it is. I've accepted there isn't anything I can do about it (aside from meds) and this is a lifelong, life-altering diagnosis. It is just another paving stone as we navigate life through Left Field. This the new normal for all of us, not just me. I will admit to some anger and frustration, but I realize there's really no point to it, even though I am allowed to feel my feelings. It is especially difficult for me being unable to recall any of the events. Avery has done well attempting to fill in the gaps, as did the police captain, but I'm honestly struggling with having lost time, and having done so in such under such public circumstances. This was humiliating for me and I'm having a difficult time making myself not obsess over it. I am a Type A personality with a near-compulsive, anxiety-driven need for control over my life and most situations. This has left me feeling incredibly vulnerable, exposed and uncomfortable. Looking on the bright side however, Shawn pointed out I'm no longer questioned or harassed over my handicap parking placard! Does this mean I actually look old and feeble now???
The most important thing right now is to help Avery through this, prepare him well for next time, and give him back some of the power and control he lost that day. He has aged several decades in the past three months; it is hard and sad to see my child this way. He sits and watches me, waiting for the slightest twitch, reporting back to Shawn, yelling to/at me to check on me if we're not on the same floor, and even if we're not in the same room. I have to be very aware of my behavior and mannerisms around him. We sent him to "Camp Aunt M" a few weeks ago at his cousin's house, hoping he could just be a regular kid and let go of some of the weight he's carrying around. Avery has admitted being angry with us for downplaying my nocturnal seizures, leaving him wholly unprepared and shocked, for which we have profusely apologized, while understanding mere apologies will not erase this. He's also been angry with how the police and EMTs did not react--he was upset by how little they did during the seizure and how calm they were ("Mom, they weren't doing anything. They stood there just watching you, not doing anything." We explained to him their reasons for remaining calm and also explained there is seldom anything to be done for seizures, depending on the circumstances. At that point, it was all watching and waiting, timing the seizure and making sure I was safe. We explained they couldn't move me without risking injury to me or someone else, CPR wasn't necessary, and I was coming out of it right at the ten minute mark when they would've begun administering meds.). As parents, we've always taught our kids knowledge is power, so we are arming Avery the best we can. We've been over seizure first aid with him, practicing it, asking him questions about each of the steps so he understands why or why not to do certain things. Shawn put him different scenarios in my car in our driveway to react to while it's running and we've shown him how to 'crack' my phone for emergency purposes, among other necessary, safety-first lessons. In addition, he and Shawn will take a Red Cross first aid/CPR class. I now have a rescue med, more for the purpose of putting Avery at ease, I suppose, as we are hoping I won't have another bad one. We showed him how to use it, let him practice administering it (the company sent an empty 'trainer', among other things), then stashed them in the car, in my purse, and throughout the house. We are also giving Avery space to process the trauma he endured, while simultaneously teaching him it's okay to laugh about some of it. A few days ago, he mused if I'd be a more effective paint mixer than the machine at the hardware store... he's lucky he's cute! He learned anatomy this year, so we've joked I was just that dedicated to teaching him about the brain. We have taught our kids courage doesn’t mean you’re not afraid—it means you face that fear head on and do the difficult, frightening thing anyway; we have been gently reminding him of this, as well as just how brave he really was. He's refusing to address his experience (and subsequent feelings) with his therapist and his psychiatrist (or us), but we've given him permission to talk with his friends and trusted adults about in the hopes he will talk to someone (it's not something we're going to hide, nor anything to be ashamed of). I can't imagine what my child went through and Shawn said he hopes he never has to hear that kind of terror in any of our children's voices ever again. Avery had to watch, helpless and frantic, as his mom convulsed, struggled to breathe, then stopped breathing before gasping for air again. For nearly ten minutes. He checks in with me every morning to make sure I got enough sleep, looks for products that might help me sleep better, suggesting this and that. He’s admitted to waking up in the night to check on me. Because I had a massive migraine which rescue meds didn’t come close to touching the night before my seizure and barely slept due to the pain, I see the fear written all over him each time I’ve had a migraine since (we're not sure those were factors in the seizure, but right up to it, I felt fine and did not have any typical warnings a seizure was impending). We’ve always had fun movie nights with take out and I allowed the Littles to stay up a little later when Shawn is on-call for work, but now Avery insists we all go to bed instead, “You need to sleep, Mom.” If he's on another floor and hasn't heard me in a bit, or I drop something or he hears some other out-of-the-norm noise, he races to the main floor screaming my name. A few weeks ago, we were separated from Shawn in Target and Avery nearly hyperventilated with panic. I had him help me research what essential oils are not seizure safe and which ones can be beneficial; the next day I was going through a few and he nearly leapt across the room to smack a particular one out of my hands, yelling, afraid it was one of the unsafe ones. He's going to need so much time, grace, reassurance and patience. I noted to his psychiatrist how I don't want to make a victim out of my kid or be a drama queen by referring to his experience as traumatic; she cut me off, saying this is right up there as far as trauma goes, and it's an accurate depiction; both his therapist and psychiatrist have diagnosed a heightened trauma response, as well as possible PTSD. His anxiety has reached the point we've added an SSRI--it's not fair to him to live with such fear and anxiety. I'm a little relieved to hear them call it trauma and see them care so much for Avery's well being because I thought for a minute or two I might be exaggerating. My own personal experience with Avery's nocturnal absent seizures has given me a lot of insight I wouldn't otherwise have into how Avery might be feeling. His seizures were an enemy I could not see, nor fight. There weren't any alarm bells or warning signs. I was absolutely powerless against this enemy that had invaded my child's brain. When he confessed to checking on me at night, I believed him because I did the same exact thing for him. I know this isn't easy for him, and it might only get worse. He is now faced with having to be my medical advocate and even a bodyguard of sorts for myself and Ezra should I have another seizure in public--that's a lot to expect out of a nearly 13 year old boy, especially one with autism, ADHD and anxiety. We are doing our best to instill confidence in him--and help him be confident in himself--so he's able to speak with an authority to strangers who might think they're helping.
I need to be seizure free for six months before I can drive (honestly though, I'm really not sure I'm eager to get behind the wheel again, and I know Avery certainly isn't ready for it), and I have a shiny new warning label bracelet, which declares my newly acquired disability. We are massively fortunate to have Shawn working from home for the time being; this man--I can't even tell you. I know he's carrying the weight of the world on his shoulders, I know he's pretty much a single parent right now, I know he was just beginning to feel like he could finally take a deep breath again as I began to stumble out of my grief and pain--but he has not complained once. He dotes, he makes sure I'm eating and taking my meds and vitamins, he researches, he takes care of the Littles and he's just really doing it all. And chauffeuring me is so. Much. Fun. “Please wash the windshield.” “Don’t you think you’re going a little fast?” "I go this way instead." " Oh, park over there, not here!" “I know I said I only need to go here, but I also need to go there, there and there, is that ok?” "Now you're going too slow!" "Watch out for that car!" His typical response is, "Yes Miss Amy," or whatever other hilarious names he comes up with. And this sweet man seldom, if ever, tells me no (okay okay, he did draw the line at my request for a seizure llama). We are overwhelmed by the support coming from our many friends who are stepping in, helping with logistics, understanding we are currently not the family to ask anything of, and just generally loving on us. Because of our homeschool community, we've not had to consider sending our children back to public school even once in the past three and a half years.
This has truly been a humbling experience (Hey God, maybe there's a different way to teach me humility, though?). I had big plans for myself and the kids this summer, hoping to recover what we've lost these past three years. Now there won't be any day trips, weekend trips, not even trips to the library unless Shawn's schedule allows them. It's going to be a long, boring summer (thank God for the Johnny Depp/Amber Heard trial (Team Johnny!)!). We will have to do what we can to live it up from here. I am upset to miss out on our co-op's many summer get-togethers--I need them just as much as the kids do. I had intended to do the substitute tutor training this summer for our homeschool co-op, and I typically spend many of our community days in the nursery, but I am no longer comfortable being the 'reliable/responsible' adult in either situation. We've had to cancel Ezra's SLT for the time being, which has caused somewhat of a regression. He is also experiencing regression in terms of OT and ABA, but again, it's just not possible to make it happen at this time. I am upset about what our kids are missing out on--our kids didn't ask for any of this and I want them to have fun, I want to them receive the help they need and not miss out. They are both struggling without our typically scheduled routines. However, they are watching me and my reactions to gauge their own. We've decided to approach most of this with humor--sitting around and feeling sorry for ourselves just isn't an attractive option. Yes, this certainly complicates our lives, but wallowing in self pity or being angry about it won't solve anything.
This has also served as a great awakening for me. From my early teens through my late 20s, I engaged in self-harm and just did not want to live, to the points I not only prayed for death, but planned and attempted suicide more than once. In addition, Shawn and I realized we've confronted my own mortality at least four times over the past seven years, beginning with Ezra's birth. And now--I've got too much to do. I'm not finished living yet. I will not go quietly, nor willingly. I have too many people to love, and too much to live for. To say we're experiencing immense gratitude would be an understatement.
I'm thankful for the epilepsy community, who not only welcomed me with open arms, but they've also been helpful recommending resources to me, and have just been generally crazy-patient with my constant questions. Many friends have expressed disbelief and exasperation at my driving restrictions, calling them unrealistic and asking how in the world we'll manage. My answer to that is, we'll manage just fine. Will it be easy? Ohhhh, heck no, it's absolutely a huge inconvenience! But is it the safest and best (only) option right now? Absolutely. I am currently a hazard to my own family and others on the road. I'm not willing to risk that, you know? I would not be able to live with myself if I'm the reason for another family's tragedy, or our own. We got lucky this time. When I pulled out from the stop sign, the cars behind us were stopped at a red light several hundred feet away, the police captain was behind us, not much traffic as it was mid-morning on a weekday, Shawn was working from home, I did not have Ezra with me, the seizure did not cause me to put force on the gas or brake pedals, I was going maybe 10mph exiting the stop sign and I was headed up a slight incline, so my RWD car simply cruised to a stop, and most importantly--no one was hurt. We are reaching deep into our dark sardonic humor in order to cope, but we're coping. When I asked Avery how he feels after 'responding' to his first emergency, knowing he has first responder genes, if he feels as though this could be something he'd like to explore, he responded, "Well, maybe, except for those people who refuse transport." This kid is fancying himself a regular comedian!
We got lucky this time.
I do not ever want there to be a next time. We may not be so lucky again.
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