It had been a long day at work. I stayed late, trying to keep ahead of deadlines. No matter how late I stayed, there was nothing I could have done to prevent the manufacturer from sending a customer's order from shipping a day late. Yet I still beat myself up over missing their deadline, and so did the customer. All I wanted to do was go home, have a glass of wine, and relax.
On the short drive home, I looked forward to Brian's hug. He'd listen to me rant about my day and hold me in his arms. I could practically feel it. I pulled into the parking lot, got the mail from the box. Oh, a notice from the credit card company that the payment is late. I had totally forgotten about it. Shit. I'd pay it online as soon as I got in the house. And then drink the whole bottle of wine.
I opened the door, and before I even put the mail down, I saw him. Brian was laying in the hallway, twitching.
Did I call 9-1-1? No. We'd passed that phase many years ago. I knew there was nothing they could do. This wasn't the first time this had happened.
Instead, I dropped everything and went to him. I took off his glasses, we didn't need those getting all bent up again. I maneuvered him into the middle of the hallway so his head wouldn't hit the wall. He was limp at this point, but that didn't mean he wouldn't jerk again. Sitting in the small space next to him, with one hand, I took his hand. With the other, I brushed the hair away from his face. Softly, sounding as reassuring as possible, I said, "It's okay, Baby. I'm here. You're safe at home. It's me." I squeezed his hand, which lay limp in mine, and said, "That's me. I'm right here. Can you squeeze my hand?"
As I repeated these things over and over again, doing my best to make him feel safe, I succumbed to the tears. Not because I was afraid for him. This wasn't too unusual of an occurrence, and this actually wasn't a bad episode in comparison. Luckily, there was no one else around. Really, I mean that as a good thing. Because in the past, well meaning friends had gone to him, and in his state, he perceived them as a threat. They've been punched and kicked. But when I go to him, I speak softly, reassure him that he's safe, and if you noticed, try my damndest to make sure he knows it's me. It's always worked, but I know that there is a danger in approaching him in these situations. I take the risk to make sure he is okay and safe.
Still, that's not why I cried. I wasn't afraid, not anymore. I wasn't worried, at least any more than usual, about his health. Like I said, this wasn't the first time. I cried out of guilt and shame. Because as he was laying there, helpless, on the floor, all I could think about is how I couldn't handle it right then. That maybe he was faking it, and that didn't he know that it was inconveniencing me? I wondered if there would be a day I couldn't take this any more. I felt sorry for myself, that when I needed someone to support me and be the strong one, I had to step up and take on that role once again.
Then, with a gasp for breath, Brian suddenly grabbed my hand. His eyes were now open and wide. He can't see anything at this point, or respond, but he's closer to coming back to me. He passed out again for a minute. Sometimes, it starts all over again, but this time I got lucky. My hand was no longer squished in his, nor let go entirely, but now was held in gratitude. He opened his eyes, found me, saw the tears, and said, "I'm sorry."
I said, "Are you okay, Babe?" I didn't forgive him, because I had nothing to hold against him. He should've never apologized in the first place for something he can't control. And I shouldn't give him any reason to need to apologize.
For the rest of the evening, he was tired. I skipped the wine, just in case I needed to be alert, and made us supper. After we ate, he fell asleep on the couch.
When I think these things when caring for him, another part of me knows how selfish and wrong these thoughts are. I feel guilty even now for ever thinking them. I know it's caregiver's burnout, but that just makes the guilt worse. It reminds me of all the times I work late, or go out with friends, when I'm not home with him. How can I call myself a caregiver? I'm merely his wife, and sometimes I wonder if I'm a good one at that.
I wish I could say that I'll never feel that selfish again, but I know I will. Just last week, Brian awoke in the middle of the night in the midst of a seizure/nightmare combination. It's yet another thing we've been through before. I don't know if the oncoming seizure gives him nightmares, or if the nightmares provoke the seizure. I did the usual, take his hand and stroke his hair. I said my reassurances, and added, "Just sleep." I described a serene scene on the beach to help replace whatever imagery in his head with good thoughts. And I kept repeating, "Just sleep." I tried to say it to calm him down, but there's a bit of pleading in my voice too. The selfishness hits again, for I am tired, and have to work in the morning, and my efforts to try to calm him down are routine.
Some days it's not set in stone like this. Sometimes, the seizures are easier, like a form of release. Brian is medicated for it now, which reduces the number of seizures he has greatly. They used to average out to about once a month, where he might have a few within the same week, but then go a couple months before the next. Now it's down to 3-4 times a year. But just because the most obvious thing, the seizures, aren't as prevalent, that doesn't give us the all clear.
I can now tell when we're going to have a bad day. Brian won't act like himself. He'll be irrational, and quick to anger. His walk will be unsteady, and he'll easily lose patience. His motions will randomly get jerky. This used to end with a seizure, and then the next day he'd be back to normal. Now, when the seizures are mostly gone, sometimes this can last for days. It's harder in a way. I don't always recognize what's happening and just think he's being unreasonable. I'm getting better at realizing it now though. His doctor has told him to take an extra pill when he feels he needs it, but so far, at that point it doesn't seem to do anything. Perhaps once we get to that point, it's too late.
I used to get angry when he wouldn't go out to events and such with me. He'd encourage me to go anyway, and I'd resist. I'd think he just didn't want to be with me. That was years ago. I've come to understand why he doesn't feel up to going out now, and I don't let that keep me home. He tells me to go out, not to let him hold me back. People ask me where he's at, why he doesn't come out, and I try to briefly explain. It's not satisfactory, but most people get the hint and don't ask more.
He tells me it's all right, but sometimes I feel guilty that I'm away from home as much as I am. Sometimes I turn friends down for get togethers. It's not that I don't want to see them, but that I feel like I need to spend that time with Brian. It means having to choose between my husband and my friends, and although neither him nor my friends want me to have to make that choice. The fact that I have such a great husband and great friends that understand helps tons. Sometimes I have obligations that I can't choose to stay home from, and Brian looks at me and says, "You have to go. Go."
I write this for the other people out there who might go through similar things. The other caretakers and spouses who have the similar selfish thoughts. Sometimes, I'm surrounded by my loving husband and caring friends, and I still feel alone. Maybe someone else out there feels that too, and can find solace in someone else who understands.
To our friends: Know that Brian has his bad days. He doesn't mean to be mean or uncaring. Please forgive him for any time that he may had lost his patience or acted out of character. And know that I'm not immune to all of this. When Brian has bad days, so do I. I don't mean to neglect you, I don't mean to be curt. Sometimes I want hugs, and sometimes I don't, and sometimes I don't even know what I want. Most of the time, I don't want to acknowledge it; I just want to go on with things as "normal." Most of all, thank you all for your patience.
I wrote Brains for the Zombie Soul to be enjoyed by everyone, not just zombies. My hope is to spread acceptance of not only the undead, but of everyone, no matter if their skin color is black, brown, white, or green, no matter if they pray, abstain, or practice voodoo, no matter if they are gay, lesbian, bisexual, transgender, pansexual, or a sexual, no matter if they are living or undead.
With this in mind, I am thrilled to present my book to a new audience. The always-inclusive Different Drummer Belly Dancers have invited me to be a special guest at Spencer Pride Fest, June 1st, at the Owen County Courthouse in Spencer, Indiana.
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