See this gorgeous waterfall? I took my daughter and her service dog on a nice hike up to it recently. It was raining a little bit, and the trail was muddy, there were leaves all over the place, and it was glorious! The river is swollen from all the recent rain, and the falls are crashing and beautiful. We were having a really good time.
Then some random stranger on the trail decided to start giving unsolicited advice about how to train the dog. Wait, what?! First she asked if he was in training (this happens every time we go out). My daughter told her that no, he’s her dog and is working. Then the stranger starts in on some rant about her friend who lives in New York and is blind, and she’s getting her fourth dog, but she fell down the stairs, and if we don’t want our dog to go after random things we should teach him some obscure Russian word, so he doesn’t run off into the bushes. Okay, crazy, gotta go now.
Seriously. Every single time. Can’t we just have a nice hike in the middle of a random forest trail without some weirdo telling us how to work with our dog? I’m getting tired of being polite, and one of these days I’m going to blow and just tell some idiot to go away and leave us alone.:/
For the first several years of Rachel's life we maintained a Costco membership. There are only three of us, but it was great for diapers, quick dinners, new books and movies, and thousands of other random and wonderful things.
For the first few years after the seizures started we kept the membership, but didn't shop nearly as much. We mostly used Costco for gas and maybe grabbing something for dinner. Eventually, we were forced to stop shopping there because Rachel couldn't tolerate being there. By the time we'd get to the back of the warehouse, she'd be starting to feel dizzy, and we had more than one instance in which we had to leave a loaded cart and bail out of the store, hoping to outrun the panic attack or seizure that was building.
The very last time I remember shopping at Costco with Rachel, we were actually in line and she collapsed, crying, drooling, completely limp, and totally blocking both foot and cart traffic, right in front of the cash registers. We decided that shopping at Costco was no longer worth the risk, and let our membership lapse.
We had similar issues with Walmart, but at least you don't have to pay for the privilege of shopping there, and it's easier to get in and out quickly, in the event of an emergency. Still, there were many trips to Walmart that ended with me waiting in line to pay for groceries, and Brett taking Rachel out to the car, in hopes of helping her calm down.
Over the last couple of years shopping at Walmart has become much more commonplace, and much less stressful. Rachel almost never mentions being dizzy, or overwhelmed, and I don't feel quite so much like I'm rushing to get what I need, just in case I have to get out of there in a hurry.
We started thinking that maybe, just maybe, Rachel would be able to tolerate Costco again, so when Costco announced they were now accepting Visa credit cards, we decided to give it a go.
*Cue the maternal angst*
Rachel kept assuring me that she'd be fine, and really wanted to try shopping at Costco again. We shopped at Costco today, for the first time in at least 5 years. It was busy, and crowded, and the parking was hellish. I had to walk down the side of the building in order to get a cart, and then Rachel insisted on checking every type of fruit they carry. We cruised the freezers, meat section, books and movies, and by then we were back toward the front of the store, and I asked if Rachel was ready to go. She said that yes, she was finished, but looked good and wasn't flushed or biting her lips, so I figured she was probably okay.
We got in line, and Rachel asked if she could go get a smoothie, which was something she had always done at the end of our shopping trip. I was almost checked out when Rach reappeared, handing me my change and happily sipping her drink. We made our way out of the store and got the car loaded up, the dog in the back seat, and the cart returned. I got into the driver's seat, turned to Rachel and asked how she was doing. She said "I only started to feel stressed when I got my drink, and then had to figure out where they put the straws, and when I turned around I didn't see you right away. But I'm fine now."
I took the first deep breath I'd had since we arrived at the store, and realized how big a shopping trip had become in my mind. Shopping used to be a mindless necessity. A chore. Boring, but necessary. Now it's a minefield of stressors, with too many people, too much noise, bright and sometimes flashing lights, conflicting scents and bright colors. I will probably never not be tense while shopping again.
I dream of a day when small, mundane chores can be taken for granted again.
Tucking Rachel into bed for the night, we're laughing, she's taken her bedtime dose of oil, and she's got a chewy candy in her mouth, when she suddenly goes still, then hastily swallows the candy. I immediately feel tense.
"I feel iffy, and have some quiet sounds," she says.
I grab the VNS magnet, and ask if she'd like to be swiped. She nods, so I swipe across the implant over her left breast, and ask if I got it. She nods again, and then does some slow, deep breathing.
This could go either way. It could pass fairly quickly, or descend into a more involved seizure. Right now it's what would be called an aura, but is actually a simple partial seizure. Rachel is still very aware, talking with me and trying to distract herself so she doesn't panic and make things worse.
The swiped VNS will run for a full minute, at an increased amperage over it's normal setting. I check the clock. It's been more than a minute.
"How are you feeling?" I ask. "Do you still have sounds?"
"Yes, but they're quieter now."
I take a deep breath. Maybe we'll get away with this tiny seizure, just this once. It's almost too much to hope for. It would be a one in 300 or so that a seizure is this small, and there's no panic attack.
"My head feels like it's full of fluff," she says.
Rachel's eyes are red rimmed, and the lids are puffy; a sure sign that she's pretty tired.
"Do you think you can lie down, or will that make you feel worse?" I ask.
"I don't know, but I'll try it and see." She does lie back, and indicates that she's feeling okay.
I hover for a minute, hesitating to turn off the light and walk away, only to hover over a monitor in the living room.
"Mom, I'll call you if I feel bad again. Don't worry."
I always worry. But I turn off the lamp, touch her arm one more time, tell Rachel I love her, and leave the room. I never leave her without saying "I love you." I live in fear of SUDEP stealing her from me.
I pull my computer onto my lap and open the seizure calendar. This has been a busier month than she's had for awhile, but somehow this tiny partial seizure has given me some hope. I check the clock again, check the monitor again, enter the seizure details on the calendar, but don't close the calendar just yet. I want to be sure she falls asleep before I do that. I tell myself it's just expediency; so I don't have to go through the wait of having the program open again if she has another seizure, but the truth is that somehow I feel like leaving it open means another seizure won't happen, like a talisman against that evil.
Before epilepsy I was never superstitious, and I still halfway believed in God. Before epilepsy a lot of things were different. Before epilepsy, life wasn't so iffy.
