by Renee Dyer
Ethan walked us to the waiting room. He told us to call if we had any questions while we waited for the results, and let us know he’d be happy to answer anything at any time. He gave Brenna his e-mail and direct line. I shook his hand and thanked him. I never thought I would be comfortable working with a neurosurgeon after what happened with Brenna, but Dr. O’ Brien’s confidence and knowledge put me at ease, and Ethan’s knowledge and personality only added to the feeling that she’d be in the best hands possible if surgery were needed. I won’t say I walked out of there feeling happy, but I wasn’t homicidal.
The wait for the scan and the results was excruciating. Brenna acted like life was normal and we weren’t waiting for our world to drop out from under our feet again. I thought I had healed from her previous surgeries, but hearing she may go under the knife again brought back memories I had only buried. The problem with burying things is that shit gets dug up when you least want to deal with it. My mind played tormenter while Brenna cleaned house and cooked. Her regular routine pissed me off.
Why wasn’t she angry?
The tests came back normal and I was able to breathe. Brenna couldn’t. I hugged her so hard, I’m surprised I didn’t crack a rib. I hadn’t realized how fucked up I was over the possibility of surgery until it was mentioned. We’d known since learning she had Chiari she may need multiple surgeries, but knowing that still can never prepare you for when it happens. I don’t know that I’ll ever be prepared if it comes up again.
With surgery off the table, Dr. O’Brien referred Brenna to a colleague of his, a neurologist in Boston. He wanted her monitored, and, as he explained, “You see a surgeon when you need surgery. If you need long term treatment, then you need a neurologist. Their job is to look past the scalpels and see what other ways they can help you.” I liked Dr. Landon. He was knowledgeable about Chiari and had several ideas of ways he wanted to treat Brenna. He gave her a list of tests he wanted her to have done and a prescription to start helping with the pain—and it wasn’t a pain killer. Brenna was against them. She didn’t want to feel groggy all the time. To help, he also got her set up with a tens unit. Brenna was skeptical of how a little unit pushing electrical impulses into her muscles was going to help, but I was hopeful for the first time in too long.
Brenna wasn’t as thrilled with Dr. Landon as I was. She couldn’t pinpoint what it was, but she didn’t get the warm and fuzzies from him. She said she’d continue with him because I liked him, but I could tell she wasn’t overjoyed about the idea.
Two days after starting the medicine, I came home from work to the boys playing in the living room and Brenna nowhere in sight. I asked Brady where Mommy was and he said she was upstairs. It wasn’t like her to leave Nate unattended, so I started to panic. I ran up the stairs, and what I found will never leave my mind.
“Brenna,” I yell out, taking the stairs two at a time. Slamming through our bedroom door, I freeze. My mind can’t comprehend what I’m seeing. Brenna is crouched against the wall, under the window, her hands gripping her hair and mascara smeared across her face. I can’t hear what she’s saying, but her lips are moving and mumbles carry across the room. “Bren?”
Her eyes swivel around before landing on mine. I can’t tell if she knows I’m even here. “Bren,” I say again, keeping my voice light as I start to approach her. I keep my hands up in front of me, trying to show her I mean no harm. When I’m directly in front of her, I crouch down. Her head moves in sync with the movement of my body and it’s unnerving.
“You’re not safe here.” The childlike way she declares those words makes me want to laugh it off, but her appearance scares me.
“Why? What’s going on, babe?”
“I want to hurt you and the boys.” She starts ripping at her hair again as I try to figure out if I heard her correctly.
“Hurt us?” I don’t know how I get the words past my lips. They feel alien. Brenna loves us more than she loves herself.
Large tears fall from her eyes and I watch them trail down her cheeks. An empty woman stares back at me. If she had just had Nate, I’d say this is postpartum, but he’s going on two. I don’t have an explanation for the change in her.
“I woke up and I was so angry. I was mad at everything the boys did today. I kept yelling at them.” She’s pleading with me to understand, but I don’t. “I don’t yell at them, Nick. A little while ago, I almost grabbed Brady because he threw a toy. I wanted to hit him.”
“Hit him?” I keep repeating what she says, but she’s not making any sense. This isn’t Brenna. She would never hurt one of our boys.
“I wanted to hit him and just trash our house. I want to punch you now, and I don’t know why. You need to leave. You and the boys. Please.”
She starts digging her nails across her arms, until they’re red and raw. Fearing she’ll break skin has me jumping forward and grabbing her hands. “Bren, stop!”
“Let me go!” Her head connects with mine, stunning me. Feral eyes pin me in place. My Brenna isn’t staring at me. I don’t recognize the lost soul watching me. “I’ll kill you if you don’t let me go.”
I lurch back, devastated by her words. “You don’t mean that.”
Her hands go to her mouth and loud sobs echo through our room. “What is happening to me?”
My mom being retired has been a Godsend. I was able to call her and she took the boys. My boss gave me the week off from work. There was no way I was leaving Brenna’s side. It turns out she was having a reaction to the medication. Repeated calls to Dr. Landon’s office went un-returned, so I took her to the hospital. She was treated that night and then released. I’m not sure she should have been. It took a few days before she started acting like herself again. I wouldn’t even let her talk to the boys on the phone until then. Day six, I brought them home. We still hadn’t heard from Dr. Landon’s office.
Brenna told me she was done with Boston unless surgery was required. She didn’t want to be just another number in a big facility. She was done with doctors in general at this point. I didn’t agree with her, but I knew my wife. When she was determined about something, there was no changing her mind.
Right now, she’s determined to beat Chiari with mind over matter.
I think it’s a colossal fucking mistake.
Chapter Thirty Two
Brenna
I was hell bent on not going to another damn doctor and I held steadfast to that plan straight through the summer. Two weeks after my thirty-seventh birthday, a tickle started forming in my throat. I figured it was allergies. Ragweed season had started. The tickle turned into a hacking cough, my chest ached, and I was so tired, I struggled to do anything with the boys. My battle not to see any doctors came to an end.
There was a small consolation when I made the call to my primary’s office. Dr. Herrington had no openings, so I was seeing her P.A., Kathleen. I had seen her before and I found her pleasant and willing to listen to what I said was happening with my body. A lot of times doctors don’t do that. They’re busy watching the clock to make sure they can get to their next patient and only half-hear you. It’s frustrating.
My life is frustrating.
The boys and I walk into the office and only have to wait a few minutes to be called back. I’m the last appointment of the day. Danielle, the nurse helping Kathleen, offers to read books to them while Kathleen looks me over. They both beg me to let them go. How can I say no to storytime? With a firm look and a, “You two listen to Danielle and behave,” they run off to the nurses’ station, leaving me alone with my roaming thoughts. Alone time is never good for me. I spend it thinking about how much I wish I could change what’s happening to my body.
Kathleen walks in as I’m hacking. The coughing has created a deep throbbing in the back of my head and it feels like I’ve been kicked in the spine. I’m already dreading the car ride home.
“That doesn’t sound good, Brenna. How long have you been coughing like that?”
“A few days. Maybe four.”<
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She goes on to ask all the usual questions. Fever? Coughing anything up? Pain? Blah, blah, blah. Just tell me what’s wrong with me and how to get better.
“How are you feeling other than this?”
I don’t know why her question hits me so hard, but suddenly, I’m angry. At her. At the doctors who have failed me. My body. Chiari. Everything.
“Well, Kathleen, I’m pretty fucking fed up, truthfully. I’m sick of doctors who can’t get their heads out of their asses to help me or who don’t believe they need to stay current on the conditions out there. I’m tired of feeling like I’m nuts because I have a condition no one knows a god damn thing about. I’ve been a guinea pig for years, and guess what? I’m nowhere near feeling better. I’m starting to believe all the medical field cares about are their fucking co-pays.”
I’m panting as I finish my rant and she’s looking at me with…understanding. What the hell? Shouldn’t she be kicking my rude ass out of here?
“I’m sorry you’re so frustrated, but if you’ll be willing to give one more doctor a try, I have one I can guarantee is awesome. I know, because he’s the neurologist I see.”
I don’t ask her why she sees him, but I do take his information. It’s comforting to know she is a patient of his.
I have bronchitis. Wonderful. Kathleen prescribes me a five day antibiotic and tells me I need to rest as much as possible. She walks me out and asks the boys if they’d like a sticker. Delighted squeals fill the air. I thank her for Dr. Knight’s information and for listening before I walk away. The boys wave and thank her for the stickers. Danielle says to bring them back to visit her anytime, and they wave again.
We make a pit stop for my prescription and some chicken broth before going home. By the time we walk in the door, the pain in my spine is well above a ten. I scooch to the floor to help the boys take their shoes off and realize I can’t stand back up. The pain is too intense. Biting my lip to hold back the cries wanting to escape, I try to think of how I’m going to get around the house. This can’t be happening. Not now. Not while I’m all alone with them.
“Do you boys want to play army?” I ask, my voice low.
Brady jumps up, excited. “I do. How do we play?”
“Me pway, me pway,” Nate chimes in. I smile at how far he’s come in speech.
“Okay, get on your bellies like this.” Sharp, shooting pain rockets up my back as I maneuver myself onto my stomach. I want to show them how to army crawl, but moving my legs is excruciating. Moving my arms is, too—but I have to do something. They both lay down on either side of me. “Now, use your arms to pull yourself forward. You can use your legs if you need to, but you can’t get off your tummy.”
I start to drag myself across the kitchen, thinking, if I can just get to the couch. Every swipe of my arms, every pull on my body, it feels like a sledgehammer dropping onto the middle of my spine. Blood lines the inside of my mouth from where I’ve bitten into my lip repeatedly. I refuse to let these boys know what’s happening to me.
At the opening to the living room, I realize I’ll never be able to get myself onto the couch. My heart sinks. I swivel my head, flinching at the agony this simple movement brings.
“Look, Mommy. I’m a good army man,” Brady shouts.
“You’re a great soldier.”
“I gud soda too?” Nate asks
“You’re both very brave soldiers, crawling through the jungle. Watch out for lions and tigers.”
They squeal and look around like one will pounce on them. I smile despite the torment my body is putting me through. One arm in front of the other, I head for the bathroom. I just need to get inside. I can figure out the rest in a minute.
“Soldier Brady, I have a mission for you,” I say seriously. His brown eyes lock with mine, and I see he’s completely into this game. “I need you to get the walkie talkie for me.” When he stares at me in confusion, I mouth, “Phone.” He nods and starts crawling to the living room to get it. I continue the achingly slow crawl to the bathroom. Nate follows me. At the door, I stop, trying to figure out how to turn my body without causing too much pain. Brady’s shuffling body sounds out behind me. I wait until he hands me the phone before I speak again.
“Now, I have a mission for both of you.” Their excitement crackles through the hallway. “I want you to try to pick up as many toys in the living room as you can while on your tummies. Can you do that?”
They both nod with giant smiles on their faces. I watch them turn their bodies around and start to crawl away. Thank God. I just need to think.
Brady stops and looks back. “You going to do the mission too, Mommy?”
Shit!
“I have to use the bathroom and I’m going to be a little while. Don’t wait for me, okay?”
“Okay.”
He shuffles up to Nate, and I hear him say, “Mommy’s going to make a stinky.”
If that’s what they believe, then I’m all for it. I take a deep breath and turn to my side. With my arms, I drag myself into the bathroom and close the door with my feet. I dial Nick at work and before he can finish his spiel, I whisper, “You need to come home.” I don’t want the boys to hear me.
“Brenna? Is that you?”
“Yes. I need you to come home now. Please.”
“Why?”
“I can’t get off the floor. I’m in the bathroom so the boys won’t see. Please, just hurry.” I hang up, hoping he’ll understand the urgency and get home quickly. I’ve never been so happy that he works close to home.
Every few minutes, I fake a grunting sound so the boys won’t question me still being in the bathroom. I should win a damn Emmy for this performance. My face is against a rug I now know is in need of a washing, my body is in agony, and my kids think I’m taking a shit. This is not how I saw my day going when I woke up.
I hear Nick come through the door and I try to get excited, but my energy is spent. The pain has taken everything from me. He opens the bathroom door and gasps. I don’t bother to lift my head to look at him. I’m not sure I can. His arms come underneath me and my body lifts from the ground. Again, I have to force myself not to cry out. The boys come running, asking what Daddy is doing and wanting to know if we’re done playing army.
“We have a soldier down,” I say. “Daddy is bringing me to the medic’s tent so I can get better. Did you finish your mission?”
“We did,” Brady answers, beaming with pride.
“Mommy’s good little soldiers.”
“Where’s the tent?” Brady asks.
“My bed,” I say. “Don’t worry. Daddy is the best medic in the army. In a little while, I’ll be able to go on another mission with you.” I salute the boys even though it’s excruciating to lift my arm and Nick carries me up the stairs. I whisper for him to keep the boys out of our room, unable to hold back the tears any longer.
Nick lays me down and asks what I need. I ask for Ibuprofen. It’s really all I have. He runs to get me that and water. After I take it, he tells me to rest and he’ll care for the boys. I lay there for a while, unable to get comfortable, but at some point, I fade away into a much needed respite from the hurt. I’m not sure how long I sleep, but when I wake, it’s dark and the house is quiet. When I sit up, my back is still sore, but I can manage at this pain level. I stand from the bed, test that my legs will support me, and walk down the stairs. Nick is sitting on the couch with a beer in his hands. His hair is all over like he’s been gripping it and his eyes are bloodshot. I start to walk to him, but he holds up his hand.
“What happened today, Bren?”
“What do you mean?”
“What do I mean? I came home to find you incapable of getting off the fucking floor. What happened that your pain got to that point?” Anger swirls in his dark eyes.
“The coughing, maybe? Too much time in the car? I don’t know.”
“What do you mean you don’t know?” His voice raises and now I find my anger starting to spike as well.
; “It happens. Some days, I have more pain than others. Today was a bad day.” I try to shrug it off, try to get him to let it go before we have another argument that goes nowhere.
“It was more than a fucking bad day! Jesus, Brenna. I had to carry you up the stairs. In front of the boys. Now, tell me, what made it happen!”
Sometimes, you can remain calm. You know you should. It will benefit you and the people you love. Other times, you’ve had a really shitty day and people keep pushing your buttons, so you decide that’s the day you’re going to get real on their ass. Nick’s about to find out what real is.
“Stop asking me why I hurt, Nick! You can’t reason Chiari. There’s no code you can write. Nothing you can type into your computers that will explain why some days, I can clean two rooms instead of one and feel like a third is a possibility, and other days, I can’t move from the second I wake up. Some days just suck ass!”
“I just—”
“You’re trying to make sense of something that has no reasoning. I tell you this all the time, but you don’t listen. You keep searching for an answer that can’t be found.”
“Why is that so bad, Bren?” he asks, irritation blaring through his words.
“Because it’s never going to change! And you’re making me crazy. Why can’t you listen when I tell you I don’t have the answers? Why do you keep pushing?”
It’s exhausting having this conversation again and again. I start to pace the living room, feeling like a caged animal. I don’t know how many times I’ve explained to him how Chiari works. The doctors have explained it. Still, he wants me to tell him why my body hurts. He wants me to explain each and every little ache I have. He’s one of the smartest people I’ve ever known, but he’s beyond dense when it comes to this condition. When it comes to me. I think he’s afraid if he stops asking, he’ll be failing me again. The problem is, I’ve never believed he failed me in the first place.
Someone once told me the only thing stronger than fear is hope. They obviously never spent even a few seconds with Nick and me. We have love. It’s a crazy, stupid love, and it blinds us.