by Renee Dyer
Well, it blinds him, anyway. He believes if I do things the same way every day, then I’ll get the same outcome. It’s bullshit. I can lie around watching TV all day and my brain can decide that’s the day it will make me feel like I’ve been hit by a train. The next day, I’ll feel like Superwoman. Of course, on those rare occasions, I way overdo it and end up paying dearly for it. Normally, I end up feeling like I’ve been hit by a train after a marathon cleaning excursion. My point is, there is no rhyme or reason to Chiari. It attacks when it decides it wants to be a dick.
There are things we’ve learned about the condition. Certain actions increase my symptoms. Reaching. Bending. Sweeping is a damn nightmare. My hands and arms go numb for hours. After folding laundry, I have to lay down on my left side with my head propped just right on the arm of my couch for at least forty-five minutes. Still, I manage to get my chores done all week. I created a chart. Laundry is divvied up between several days. Each day, a different room gets cleaned. If I’m hurting too much one day, I try to filter that day’s work into the rest of the week as best I can. The chart hangs on my refrigerator so I never forget what I need to do.
My wonderful memory.
Another present from Chiari.
Every day is the same. I get up, wait to see how my body is going to let me function, and live my day. What I don’t do is go through the same motions every day. I can’t. I never know how much energy I’ll have or if my body will support me. I’ve come to accept that I need to live within my limitations, but what makes me stronger than my husband gives me credit for is I never give up. That’s the point of the damn chart. It’s my way of saying I’m still here and I’m fighting for my life. I may not be the person I used to be, but I’m adapting. He needs to learn how to adapt, too. I’ll never be who I was before. I’ll never have a fully functioning body again. Those are truths I’ve come to terms with. I wish he would.
“Are you listening to me, Brenna?”
Busted.
“Sorry.” Guilt takes over—for a lot more than not listening to him. Nick’s world has been turned upside down for years because of this shit. I try not to complain, but he knows me. He sees me suffering. He’s been going through hell alongside me, feeling the burn the whole way.
It pisses me off.
This is not how our lives were supposed to play out. We had plans…dreams. We’ve given up so much. And it’s all because of me.
“I’m sorry, Nick.”
“Me, too,” he says, walking toward me.
“No. Please don’t.” I put my hand up, needing space from him. If he holds me now, I’ll fall apart, and I can’t. I just…
“Bren?”
Confusion clouds his brown eyes. How can he not see?
“There should be a goddamn lemon law for spouses! You don’t deserve this!” I shout, startling him.
The room goes silent as we stare each other down. Seconds turn to minutes as the tension thickens. I’m about to walk away, leaving the comment hanging between us, when a smile breaks out across his tanned face.
“You know what they say you should do when life gives you lemons?”
I don’t know why he’s smiling, but I’m not amused. “Yeah, you trade it in because it’s a piece of shit.”
He has the nerve to laugh at me. I wrap my arms around my chest, needing to protect my heart, now racing with anxiety. I don’t understand what’s happening here, or why he has that grin on his face.
“No, Bren. You make lemonade. And you know how much I love lemonade,” he says, licking his lips, the smile never leaving his face.
“Nick,” I whisper, unable to find my voice. My eyes are glued to his lips and my heart soars at his words.
“Brenna,” he replies, bringing our gazes together, “there’s one flaw in your logic.”
“And what’s that?” I ask, hope springing free.
“I’ve always liked lemons.”
Game…set…match…
He knows he won. The smirk on his face says it all. My heart flutters, and I’m swooning like an idiot. There’s no way to hide it. I love this man.
“You’re crazy. You know that, right?” I blurt, trying to cover how fast my heart is beating.
“Crazy about you, babe. I tell you that all the time. I told you years ago you’re the Zelda to my Link.”
I laugh. It’s still one of the few video game references I understand. “I think you need to up your game, St. James. That line’s getting old.” I wink and start to walk away, his footsteps loud behind me. I can’t stop the foolish smile from stretching my cheeks. Playful Nick is irresistible.
“Alright. How about this one? You’re the peanut butter to my jelly,” he says as he turns me to face him.
He looks so impressed with himself, it causes me to roar with laughter. He has no idea how adorable he is.
“Try harder, baby. That line is old. Besides, I always thought I was the sweet one. Shouldn’t I be the jelly?” I tease.
He grabs me around the waist and nips at my chin. “You, sweet? Hmm. Not with the way you were just acting. I’d say I’m the sweet to your sour.”
“Jerk,” I say, playfully slapping his shoulder.
“Bitch,” he laughs.
“Be still my beating heart. Did you just make a Supernatural reference? You’ll never be rid of me now.”
“Well, if that’s all it takes.”
“I love you, Nick.”
His lips come down on mine and all the reasons I’m no good for him disappear.
Chapter Thirty Three
Nick
For almost two years, I’ve watched Brenna manage the decline in her condition. She needed to be the one to make the decisions in how her care was handled and I’ve had to accept that. It has not been easy. Watching the person you love suffer and get worse little by little before your eyes is excruciating, but she has done it with grace. My Brenna. My Warrior. My Angel.
In this time, she’s built a great trust in Dr. Knight. I’m happy she’s seeing a neurologist on a regular schedule, but I’m frustrated I haven’t met him yet. It’s not that I didn’t want to meet him. Brenna needed to feel like she was in charge of part of her life. Chiari took away her ability to work. Driving became an issue. She was only able to drive twenty, maybe thirty minutes before the vibration from the car became too much. Our house started to feel like a prison. Even with the chart she made to make her day-to-day life productive, it still felt like Chiari was running her. She was tired of me taking her everywhere.
Luckily, Dr. Knight’s office was close enough for her to drive to. The drive home would put her in pain, but she was willing to take that, knowing she could rest when she got home. Nate could play for a bit while she recuperated and she made the appointments while Brady was in school. She needed me to let her take charge of her care, so I had to step back. I could have met her at the appointments, but I felt like she would have seen that as me babysitting her.
Like I said, it hasn’t been easy.
Every appointment, she gives me the full rundown of what Dr. Knight says. She goes over what tests he requests, if there are any. What he makes her do in the office. It’s normally the typical neurological work up. Check her strength, watch her walk, check her eyes—that kind of stuff. She really likes him. The first time she met him, she compared him to Santa Claus. She said when he smiled, his whole face lit up and he was so jolly, she couldn’t help but feel better being around him. He kept eye contact when he shook her hand and he was upbeat and personal the entire appointment. Even though they were talking about her condition, she never felt down. He just had an air of positivity about him. She left there excited to be working with him.
Any time she’s had to have a scan done, she has gushed over the reading with him, telling me how he breaks it down frame by frame. I hate looking at them. They just look like gray blobs to me, but she says Dr. Knight takes the time to explain the different slides to her, showing her what each section is and what it means. He uses words she’l
l understand. She’s gotten copies of her MRIs a couple times and has been able to explain them to me. It really is fascinating.
About a year into seeing him, Brenna told me she had to start bringing a notebook to write down what he was saying in the appointments. I noticed at home, her memory was starting to slip and sometimes when we we’re talking, she would just stop. In the middle of conversations, she would go blank. After a few seconds, she would come back. Sometimes, she would start talking again. Other times, she would seem a little disoriented. I asked her about it and she would always say she just lost her train of thought. One day, she called me at work and said it happened when she was driving. She couldn’t remember where she was going and panicked. She had to pull over. It sent her into a full blown anxiety attack. She called Dr. Knight and made an appointment.
The testing brought nothing new to the table, and I found myself getting frustrated all over again.
Brenna’s pain was getting worse each month. What most of us thought of as a ten on a pain scale, was a functioning level for her. If she said her pain was a ten, I was guessing that was about a twenty-five for me. It’s probably what most people living with chronic conditions deal with. People around us had no idea. At the boys’ birthdays and holidays, she always smiled and performed. Everyone thought she was doing great. They had no idea the way she would crumble the second they left our house. Brenna would use every ounce of energy putting on the face they all needed to see. Over and over, I asked her why she did that, and she would always tell me, “They don’t want to see a sick person, Nick. They want to remember the Brenna they’ve always known. Seeing my cane is hard enough. Watch how some of them stare at it. If you pay attention, you’ll see the truth.”
I did start paying attention. And not just to family members, but to people in public, too. Everywhere we went, Brenna garnered glares. Apparently, pretty, petite blondes don’t fit the stereotype of who should be walking with a cane. I did my best not to let it piss me off, but one day, as we were walking through Concord, looking for a place to eat, a group of early twenty-something ladies, and I call them that loosely, called out, “Look at the attention whore. Here’s a tip, chick, no one picks up a man like that.” They walked by Brenna, laughing and typing into their phones. One even had the audacity to take a picture of Brenna as she cackled at her.
I started to say something to them, but Brenna grabbed my arm, and said, “They aren’t worth it. Picking on someone they see as weak makes them feel superior. They’re just little girls trying to act all grown up.”
“But, Bren, what they said—”
“Doesn’t mean a fucking thing to me.”
“But…”
“Not a fucking thing. I’m starving and you promised me lunch.”
Over lunch, I asked her how she does it. How the hell she deals with the stares and the comments. She told me, at first, it bothered her—all the time—but then it started to filter into the background. She realized people couldn’t look at her and see that part of her brain hangs out of her skull. It’s why Chiari is called an invisible illness. People look at her and see a healthy person staring back at them. They don’t see what her smile is covering or that her cane is keeping her upright.
I fell more in love with her that afternoon.
I didn’t think that was possible.
I also didn’t think she could go downhill more, but eight months later, I found out I was wrong.
“Hey, Bren, can you come help me a sec?” I yell. She made spaghetti and meatballs for dinner with garlic bread, and peanut butter cookies for dessert. That means lots of dishes, which I was more than happy to wash for the full belly I now have, but I’m running out of room on our tiny counters and need her to dry a few.
“I-I can’t.”
“You busy?”
“Um, no.” Her wobbly voice sets my hair on edge. I turn the water off and head to the living room. She’s sitting on the couch under a blanket, her eyes downcast, looking at the floor instead of me, and she’s rolling the blanket between her fingers. This can’t be good.
“What’s going on, Bren?”
She shakes her head, still not looking at me.
“Brenna,” I coax, sitting next to her, “talk to me.”
She shivers and I look at the thermostat on the wall. I know it isn’t cold, but her reaction has me wary.
“I can’t walk right now.”
“Can you elaborate?” I’m trying to stay calm, but I start to fidget the longer she rolls the blanket through her fingers. What the hell is she keeping from me, and why is she swallowing so loudly?
“I’m tingling from my toes to my thighs,” she whispers, and takes a deep breath. “When I tried to stand up a little bit ago, I couldn’t feel my feet.”
“Do I need to take you to the hospital?” I rush out.
She shakes her head, and says, “No, it will pass.”
“How the hell do you know that?” I don’t mean to snap at her, but she can’t walk and she’s being far too calm. “I’m sorry. Please, tell me how you know that.”
Quietly, she answers, “It’s been happening for months.”
I can’t hold back the anger I now feel. She’s been hiding this. What the fuck for? “Months! What the hell, Brenna! I ask you every night how your day was and not once have you told me about this. There’s been no, ‘Hey, Nick, today I almost fell on my ass because my legs went numb.’ Is it just your legs?”
I move so she has to look at me. She is not avoiding answering me. She doesn’t speak, but slightly shakes her head as she bites her lip. I’m afraid of the rage burning inside me. I’ve been fighting this fucking condition beside her for seven years, and she decides now not to tell me about new symptoms? What the hell is she thinking?
“Tell me!” I demand.
Before my eyes, she sinks into the couch, her shoulders slumping, and she starts to tremble. I try to feel bad that she’s upset, but damn it, she’s been keeping secrets about her health. I thought she was telling me everything about her appointments. Now, I don’t know if she has been, or if she’s been telling Dr. Knight everything.
“My arms and hands go numb, too. It happens every day. Sometimes, it’s not bad. Sometimes, it lasts for hours. That’s why I bought myself plastic cups. I dropped and broke a couple glasses.”
“You said you broke a couple, but you didn’t tell me all this. What else?” I don’t really want to know, but I need to.
“My face.”
“Your face goes numb, too?” How the hell does that even happen?
She nods and starts grasping at the blanket. “If I blow my nose or rub my hands across my cheeks, it brings on a tingling sensation. Sometimes, it feels like my eyelids aren’t opening all the way.”
It’s all too much. “Why didn’t you tell me?” I ask, feeling defeated.
“Because you sound like this.”
“I don’t care how I sound. I ask you every damn night and you never said any of this was happening.”
She suddenly pops up in her seat and pins me with a glare. I cower back a little, feeling like I’ve set off a volcano and I’m about to be burned by the lava. “I’m sorry, Nick, but I fucking refuse to let this be our nightly conversation.” Her spine goes straight and her shoulders go back. “I will not let us turn into one of those couples who sits around talking about how messed up my health is and I sure as fuck will not turn into some whiny bitch crying to you every night about my aches and pains. That’s not who I am. Yes, I hurt every damn day. Yes, this condition seems to be progressing. But I am dealing with it.”
“You always deal with it, I get that, but you can’t shut me out. I want to know when you have new symptoms, Bren. We’re a team.”
“I’d have to tell you every other day. Christ, it feels like that’s how often something new starts. I can’t talk about it that often, Nick. I won’t give Chiari that power over me. I’m sorry, but I can’t. I’m sorry I didn’t talk to you when it first started, I should have, but som
etimes, I just want to protect you from this shit.”
I pull her into my arms as I say, “I know you do. I love you for thinking of me while you’re fighting this, but you need to let me fight this with you. I am in your corner. Always.”
A couple weeks later, Brenna saw Dr. Knight again. I was at a conference so I couldn’t be there, which pissed me off, but she went in with pages of notes, as she promised me she would. They chronicled all the issues she was having, and Dr. Knight scheduled her for an MRI. The MRI showed that the cerebellar tonsils had re-descended and she had a blockage again. He referred her back to Dr. O’Brien.
I would like to say it was an April Fool’s joke when we walked into Dr. O’Brien’s office, but our appointment was actually on the second. Ethan came in first, letting us know Dr. O’ Brien was running a little late. He pulled up Brenna’s scans on the computer and started asking her about her symptoms since we were last in a couple years back. He took notes as she rambled off what had been happening. I added in some things I thought were pertinent. Ethan asked questions when he needed clarification and started checking her over. Halfway through the examination, Dr. O’Brien walked in. He shook my hand and then sat down to go over Ethan’s notes and look over the scans.
He confirmed what Dr. Knight had said about the tonsils re-descending and the blockage, but let us know he had a few other scans he would like Brenna to have here in Boston. He had already checked and they weren’t scans offered at the hospitals near us. I asked what he thought based off the information he saw at this point and he said he wasn’t comfortable confirming anything without the extra information these scans would give. I was disappointed in the answer, but grateful he was thorough. I just hated that it meant more waiting and not knowing exactly what was happening to her.
It was late May before we were back in his office. This time, we found out what was happening and as much as I had wanted answers, I wasn’t truly ready to get them.
Epilogue
