I can’t believe it’s been a year since I’ve written a blog post. The last one was almost exactly a year ago. It was when we went to Hawaii to help my niece move to college. We also were celebrating both of our birthdays. It was supposed to be an awesome family trip. Dave had a seizure the night we landed. And he was on the verge of a seizure every day of the trip. That was when I realized that I couldn’t have him fly with me anymore. Doc said planes are just really toxic and for a sensitive person like Dave, it would be too much. That was an end of an era. That was the end of my dreams of vacationing all over the world with my son.
My depression kicked in shortly after that and got so bad. I had never experienced anything like it. I would drop something or something really super minor, an irritation, would occur and I would go into my office, alone, and start screaming expletives that would make a sailor blush. I really can’t stand swearing and yet now I had become proficient in it. I had this rage inside of me that I’d never known. I kept it at bay from anyone. I only took it out on doors, remotes, books, and other ‘safe to throw’ inanimate objects.
When it started to spill over into all areas of my life, and people started to notice, I decided I needed to do something about it. I started EMDR therapy earlier this year. When I first met my therapist, she diagnosed me with acute depression and PTSD. She wanted to see me weekly. We didn’t even get to START EMDR until several months later. When I asked her why, she said, “when a house is on fire, you don’t buy new furniture and move in. You need to put the fire out and clean up and THEN you can move in.”
Starting with her was one of the best decisions I’ve made to date. She gave me strategies and helped me to start to handle my extremes. And then we started EMDR. I didn’t realize with EMDR that you have to process all your past traumas. I am a PROFESSIONAL at stowing away my emotions. I don’t think I’ve ever dealt with any of my past traumas, so it’s been a journey. I cry all the time (which I guess is good because I’m ‘getting it out’). In any event, I’ve felt really great about the road I’ve been on and many people have noticed how things have been better. I’ve been better about handling things. Most things anyway.
Enter ‘bar baby.’ Let me explain.
Autism is a real bitch. She’s a monster. She is unforgiving and unfair and unreal. There is NOTHING good about autism. You can have blessings INSIDE of the trial, but please don’t mistake that for autism ever being a “good” thing, because it is not. I’ve dealt with autism for over 20 years now. In fact, D-day (diagnosis day) is coming up next month and as of October 1st, it will have been 21 years since my precious boy was harmed, and subsequently diagnosed with autism. I’d gotten pretty good at knowing how to handle autism and everything that came with it. It wasn’t an easy life. But it was hard for me to see how it could be more difficult.
And then in November 2021, two short months after Dave first contracted Covid, the grand mal seizures began. Looking back, I’d realized autism, without seizures was a walk in the park. Autism + seizures brought me to heights of anxiousness I’d never known. Any loud sound, any loud voice (even a happy one), startled me out of my socks and kept me shaking for hours. I was at my wits end. I was constantly walking on eggshells, and just waiting for when, not if, the other shoe would drop. Dave’s seizures could not be controlled by seizure meds or anything else of the like. It was just a life we learned to live. And it wasn’t fun. That was when the PTSD started and the depression began, and the weight piled on and I just didn’t even care anymore.
That is when I began my life as a semi-hermit. I didn’t want to talk to anyone. I didn’t want to go and be social anywhere. So many times we’d try, and Dave would have a seizure and we’d have to cancel anyway. So, I was just content to work all day, make dinner, watch a little TV with Ronnie and then go to bed. Wash. Rinse. Repeat.
Even on vacations, we weren’t safe from seizures. Hawaii proved that. In fact, just a couple weeks ago, we got back from a staycation at our timeshare in Tahoe. We bought tickets to see Shakespeare at Sand Harbor MONTHS ago, for my birthday, and I’d been looking forward to it. Then on the way to the lake, Dave had a seizure in the car. He was adamant he wanted to keep moving forward so we went to the play. But within moments he fell fast asleep on my Mom’s lap. We just ended up leaving at intermission. I know how much those seizures put him through and I couldn’t bear to see him uncomfortably half laying in her lap, body in pain from the earlier events.
It’s been a tough road. 2022 and 2023 were difficult years. In the beginning of 2024 is when I finally started therapy. And then Dave’s functional neurologist had finally come up with a good game plan and it seemed like the seizures were beginning to ease a bit. They still aren’t gone, but we went 2 months without one a couple of months ago. That was amazing. So we will continue to do everything we can to keep Dave ‘safe’ from any of the triggers that seem to cause seizures.
I will NEVER say a life with grand mal seizures, and autism, is easy. In fact, I will say it is a hard freaking life. It’s a life of constant pins and needles, PTSD, and apprehension. And there is really nothing you can do about it. I always tell people, “hey, it could be worse.” And I do actually mean it when I say it. But when I actually THINK about a life with grand mal seizures and autism, it WAS hard for me to imagine ‘worse.’
And then ‘bar baby’ began. I don’t what the hell is causing it and I don’t know how to stop it. We are currently in talks with Dave’s doc so I hope we can get to the bottom of it. But for now, man, ‘bar baby’ is KICKING my ass. I’m exhausted. Like I’m literally done, spent, exhausted, sad, anxious, angry, tense, and in literal fight or flight CONSTANTLY.
In fact, my therapist had me wearing a night watch to check my sleep patterns. I’m getting almost no REM and very little deep sleep. She says I’ve lost the ability to unload and process the days issues because I’m in a constant state of stress response. She suspects my cortisol levels are through the roof. I feel fried, I can say that. And it’s worse when ‘bar baby’ is in full swing, which, lately, has been multiple times a day.
I call it ‘bar baby’ because it’s one of the things Dave yells out when he has these episodes (I’ve always used humor and deflection as a way to ease my pain). It started early summer. Dave had never acted this way before. He starts by loudly yelling nonsensical words. And when it gets really bad, he screams them. And his heart rate jumps to crazy high levels. Sometimes he will hit himself. He constantly picks at his skin and gives himself horrible scars on his hands, arms and legs.
I started monitoring things to get a handle on what it is. Doc thinks it’s either inflammation or it’s adrenaline, that doesn’t stop. We’ve been testing the inflammation theory, and I know Dave does have inflammation, I mean that is autism, but giving him an anti-inflammatory doesn’t always help it. Last night, for example, I gave him some Aleve at bed. He woke at 4am and started the screaming. And then he finally went back to sleep and a few hours later when he woke, his heart rate was at 120.
‘Bar baby’ is a psychotic, evil f****** bastard. Some days it’s so bad that I collapse in bed at the end of the day unable to even think clearly. Today, for example, I sit here writing this novel, but we were supposed to go out with friends. We had a reservation to go wine tasting (and those of you who know me KNOW that is like my FAVORITE thing to do) and I cancelled. I cancelled because I don’t want to see anyone, talk to anyone, or even sit upright. I am FRIED. I am literally at the end of my rope. And yet, I better freaking snap out of it because I’m sure ‘bar baby’ is on the horizon for tomorrow.
Today started out at 4am (as I mentioned). My saint of a husband went in to take care of Dave. I just freeze when it happens. I’m a big bundle of nerves and tension and sadness. So, my husband got up and gave him some Copa Calm and Melatonin and Dave finally fell back asleep.
Then I went for a therapy dog training session. And Dave insisted to go with me. I should have known better, but I ENJOY my son and WANT him with me always. He started in with some of the ‘bar baby’ at our public outing. I asked him to practice his deep breaths but he continued, in between breaths, with the loud noises. He wanted to go out to lunch after so I told him we’d go to Chili’s. He can’t eat anything at any restaurant, I have to bring him food everywhere we go, but he still likes picking the venues. So, Dave, Lee (therapy dog) and I were sitting at Chili’s. And ‘bar baby’ started getting loud. I froze and panicked. I told the waiter to wrap everything up. I didn’t want it to get to full throttle level and it could at a moments’ notice, I never knew.
I had to stop at Trader Joe’s after Chili’s to get some fresh fruit for Dave. Dave, Lee and I ran into the store, and there, in the fresh produce section, Dave started SCREAMING at the TOP of his lungs, “barbabybarbabybarbabybongbongbongbarrrrrrrrrrrrrrrrr.” EVERYONE in the store STOPPED in their tracks and looked. I grabbed Dave, and held him tight and told him to breathe deep. I asked him what his heart rate was and it was back up to 109. Once he calmed, I quickly gathered the items I needed and then left.
We got home and I just collapsed. Dave headed upstairs and started screaming up there, but we were in the safety of our home and I knew Ronnie would help. All day with Dave I was in fight or flight, I could feel it. And now that I was home, I knew I could safely let go. All of it was so exhausting, I knew I had to cancel our wine tasting date with friends. I was in no condition to go anywhere. I was emotionally drained and exhausted. I had nothing left in me. I don’t know how long this can continue, for any of us. I hope our doctor can get to the bottom of what is causing this and help us to stop it. Our next appointment with him is Tuesday so keep us in your prayers!
Autism. Seizures. Bar baby. When does it end????