APRIL
I don't think a lot about death on a personal basis.
Most people would probably find it surprising given how much of it surrounded me on a professional basis. I had to face it and talk about it all of the time with strangers who had just been bereaved, or those trying to prepare themselves for the worst. It wasn't something that I could avoid. It was a part of my responsibility as a trauma surgeon. Even if I was good at my job, there was an extent of it that couldn't be avoided. You couldn't save everyone. I had learned that lesson a long time ago. That didn't make it easier to deliver the news, not usually, but I knew how to do my job.
Both of my parents were still incredibly, active in their community, not showing any signs of slowing down despite the fact that they were both in their sixties now. All of my sisters were, too. Even if they lived in small towns, simpler lives, they were all happy and active, constantly posting on Facebook about what they were getting up to with their own family.
Samuel had been my first real brush with death, my first true heartbreak. I had been scared, to lose him, to let go of him, of everything. There had been so many questions and not enough answers – not from Dr. Herman, not from my pastor, not from my mother, not from God, not from anyone. I had learned to live with the questions. Even if it seemed like there was only pain and suffering, God did give. Beautiful, wonderful things could come from places of tremendous pain. Harriet had proven that to be true.
Eli was still on my mind every now and then, the words that he had said to me. Tikkun Olam. He had helped to snap me back to reality and get me back on the road that I was meant to be, reminded me of my purpose on the planet.
I could have used some of his advice again right now.
Creutzfeldt-Jakob disease is a rare, degenerative, fatal brain disorder. A degenerative brain disorder that leads to dementia and death. It was caused by prions, which are misfolded proteins that are associated. They were known for causing several neurodegenerative diseases. No one knew what caused them yet, but it could have an infectious effect on the brain. I had never seen a case of it in person before. It was something that I had learned about in medical school and then never had to apply the knowledge.
That all changed the day that I got my diagnosis.
In the United States, there are about 350 cases per year. The chances were quite literally one in a million. It usually appeared later in life – the elderly, people retiring who had lived their full lives. Not single moms in their thirties with a toddler at home. About seventy percent of people died within a year of acquiring it. It didn't make sense for me to have it. Amelia called it sporadic CJD. She ran both an EEG and MRI. There was a chance that it could have been variant, but it was hard to determine. In the few reported cases of variant, mostly in the UK, they reported it related to consuming beef but that wasn't the case when the disease was acquired in the U.S.
According to studies, there were four cases of the variant infection have been identified following transfusion of red blood cells from asymptomatic donors who subsequently died from it. It was possible that after the car accident, it could have come from one of those donors. They had hung a few different bags of blood for me. More than likely, though, I wasn't going to live long enough to know what caused it. I would just have to accept that.
When I drove home from the hospital that day, it wasn't raining. It made me angry. I felt like it should have been – that it shouldn't have been some bright, beautiful summer day when my brain was literally beginning to destroy itself from the inside out. Harriet sleeps in my bed with me that night. I needed her to.
It was dementia, really. It had a clear-cut cause with the prions inside of my brain, and the way that it would look if someone examined my brain under a microscope, but it would present the same as dementia. My brain would look like a sponge. For me, it would be problems with muscle coordination, cognitive difficulties leading to mental impairment, and visual difficulties. At the minimum.
There was no treatment that can cure or control the disease. Sure, there were studies in progress looking at it, but it wouldn't make a difference for me. I would let my body and my brain after death be donated to that research. Current treatment was aimed at easing symptoms and making the person as comfortable as possible. Opiate drugs can help relieve pain if it occurs. I didn't want that. I didn't want my last months with my daughter and with Jackson to be affected by drugs. The pain wouldn't last long. During later stages of the disease, intravenous fluids and artificial feeding were also used. I could take an IV. But only so much.
The next day, I go to work in plain clothes. I hand in my letter of resignation to Bailey and explain. She hugged me and squeezed me so tight I thought I might fall apart, but I knew I couldn't. Not yet. I still had to tell Jackson.
I tell him to come over for dinner that night. There was no way I would tell him at work.
Telling the person that you love that you're dying wasn't easy. I didn't know how the hell I was supposed to look him in the eye and say it. Tell him that I was dying, that he was going to have to raise Harriet on his own. It was cruel, senseless and unfair to the both of us. I cook his favorite meal like it'll soften the blow somehow.
The knock on my front door finally comes and I'm braced with the fact that I'm completely unprepared. Time wouldn't change that, though, especially when I already had so little of it left.
"Hey," I greeted him as I opened the door. "Thanks for coming over."
"Of course," Jackson gave me a real smile. "I brought wine. I hope that's okay." He held up the bottle.
"You already know that it is." I barely returned his smile. "Open it up, let's drink." Maybe that would help.
Harriet was already in her high chair and she squealed with excitement as she recognized her father coming in. I shut the door after him and watched the two of them for just a moment, the affection and love in his light eyes as he greeted her and kissed her head. I was going to miss out on so much of their lives. I was going to miss almost all of it.
"So, what did you invite me over for?" Jackson asked casually. It took everything that I had in me to swallow the way that I felt and put a smile on my face, not wanting to broach it immediately.
"I thought that we could talk. It's been a while." I murmured. "Sit, I'm hungry and I want to eat. I'll serve you."
It was almost just like when the three of us had been living together after Harriet's divorce. I regretted moving out now. I had missed out on moments that I didn't want to. It was easier to see that now, with my head spinning in reconsideration of everything in my life. The past twenty-four hours of my life had somehow been the longest and the most painful. I could say that with certainty, even sitting next to the daughter who had been cut out of me without anesthesia.
The meal seemed to go by slowly but I knew that it was just my mind and my nerves playing tricks on me, the dread on my stomach making everything seem slower. I hoped it was just that, at least, and none of the cognitive side effects that came with the disease.
"There is actually something kind of specific I wanted to talk to you about." I finally braced the topic when our plates were mostly clear of food, just pushing around the scraps with my fork.
"What's up?" He asked.
"I quit work today. I handed in my resignation." I started slowly, bringing my eyes away from the pasta sauce left on my plate and up to his face. He looked like he was about to choke.
"What? Why?" Jackson questioned incredulously, his brows dipping down toward the freckles on his nose. I stared at him for a moment, looking over the details. Had I noticed that particular freckle before? Did his eyes look lighter today?
I couldn't stop the questions flying through my mind, the doubt plaguing me.
"I was having some coordination difficulties in my left hand, so I went to Amelia." I hadn't known what to expect going in. I just hadn't expected the answer that she had given me. "She ran an EEG and an MRI to confirm her diagnosis. I have Creutzfeldt-Jakob disease. CJD. The prognosis is about a year to live and… it's not going to be an easy or a pretty year. It's like dementia." I was sure he already knew that. Yet I had to remind him. There was always something different about handling it personally than professionally.
Jackson fell silent upon the information that I had given him. His eyes were wide as he stared at me and I could already see the tears that had begun to form in his gaze. I had wanted to cry, too. And I had just a little bit when I had held Harriet last night. I hadn't slept much, but I hadn't wanted to disturb her.
"What about treatment options?" He finally asked after what felt like an impossibly long silence.
"There aren't any good ones. Painkillers, down the road, if it gets bad. Depending on how I want to live the end of my days, feeding tubes, that kind of thing… you know how it goes." I forced a smile across my lips, and a tear finally falls down.
The chair was loud as Jackson pushed it back and stood up from the table, nearly knocking it over with the force that he moved. I stand up a little slower than he does and by the time I was standing on both of my feet, his arms were wrapped around me and pulling me in so tight it was just a little hard to breathe. But I don't care. I don't really need to, not when he was holding me like this, so tightly that I could feel for a moment like those broken little pieces inside of me might manage to fit themselves back together once again. He always had that kind of healing effect on me. But I knew with CJD, it was going to be different. There wasn't going to be anything that he or anyone else could do except for being there for me.
"Amelia and Bailey are the only ones who know. I had to tell her when I quit." I explained, the words coming out muffled from the way that my face was squished against his chest. But I'm fine with that. I knew he could hear. Maybe Harriet could, but it wasn't like she could understand the magnitude of what I was saying.
I wondered what Jackson would tell her about me one day.
"I'm so sorry," Jackson whispered, his nose buried in the hair on the top of my head. His hand rubbed soothing circles across the top of my back, trying to give me some comfort. I take a deep breath and lean into him a little further, letting him hold me. We hadn't been this close to each other in months and I wanted to drain every ounce of it that I could get from him. I wanted all of it. All of him. I always had – it seemed like some things never changed.
But it was a damn shame that it took my death sentence to realize it.
"Will you stay with me for the night?" I asked, balling up his shirt in my fist.
"Of course I will, April. You don't have to ask." He insisted.
We cleaned the dishes and the kitchen together just like old times and curled up on the couch with a movie for Harriet. It's hard not to cry during all of it. Even the simple things would be missed. The scratch of his beard, the way he could never keep his hands still when they were on me.
That night when we finally go to bed, Jackson wasn't the only company in my bed. Instead, I'm pressed perfectly in the middle between the love of my life and my daughter. His arm is curled protectively over the both of us.
It seemed like a bad cliche that most parents didn't want their little one sleeping in the bed with them because it was a bad habit. And it probably was. Yet in the last months of my life, that no longer mattered. I wouldn't have to deal with the consequences of it, but I can't sleep without the both of them there with me. I needed them in the same way that I needed oxygen, but the anguish that came without them was in my heart and soul, not my body.
Pain in my body eventually came on its own terms, too. I still refuse the opiate prescription that Amelia wrote out for me and Jackson went to the pharmacy and had it filled himself. I want to be as aware as possible. The pain was exhausting but in some ways, it did keep me a little sharper.
The decisions for my will and end of life care are easy. Everything goes to Harriet. My money, jewelry, the few prized possessions that I had kept, all of it went to her. I opt against any life-extending measures. It would be too much.
Jackson moved in with me to help me in my final days, when I'm too weak to get out of bed and take care of myself, when I can't cook or take care of Harriet on my own anymore. He took time off of work in order to be there for the both of us. He knew that I hadn't wanted someone taking care of me when I'd been recovering after surgery with Harriet, and he knew I didn't want a stranger coming in more now than I had before. All I wanted was the two of them, and no one else. They were the ones that really mattered.
My parents visit. My sisters do, too. It's probably the only time that I've been in a room with all of them without any disagreements or two-sided comments being made since I was a child. None of them thought I would be the first to go.
Finally, my mother understands what losing Samuel did to me and Jackson. She understood the divorce and how the two of us had fallen apart. But now she understood why something like this was able to bring the two of us back together. When it had been just the two of us in the room, she'd held my hand and cried with me, telling me that we would be together again when he passed. That God would bring him into my life again, that he was a good person and he would be deserving of it.
"I love you." My mom told me. "I love you so much, my little swan." My sisters must have told her.
Despite the increasing pain and the decreasing ability to control my own body, I stay at home. I barely made it to Harriet's fourth birthday. She didn't understand why I couldn't be a part of her birthday party and threw a temper tantrum that only Jackson was able to talk her down from. I laid in bed and cried, unable to do a thing about it. Amelia and Owen both sat with me while I broke down. It was the last time I saw either of them.
But she doesn't stay mad at me. It's a few days later when she woke me up from the nap that I was taking, both of her hands pressing against my face and moving my cheeks around, pinching them just a little in the way any girl her age did.
"Mommy. Mommy, wake up!" Harriet said.
"Hi, ladybug," I blinked myself awake. I tried to raise my hand to wrap around hers, but all it does is tremble above the mattress for a few moments before falling back down. "What's up?"
"I talked to Daddy about my party. He told me you were feeling icky. Did you watch the videos? Of me?" She asked.
"Yes, baby, I did." I blinked back the tears. "And you looked so, so pretty in that pink dress that Daddy bought for you. He did a good job, didn't he? He made sure that you looked very pretty for all of your friends. He's a good Daddy."
"You're a good Mommy. I love you, Mommy." Harriet pressed her face into me, wrapping her arms around me.
I knew that he would take good care of our baby girl. There was no doubt in my mind about any of that. He had always been a good father and he always would be. He had been there for the both of us time and time again, no matter what else was going on in our lives. No matter how crazy things were, no matter if we were fighting or madly in love, he had always consistently been there. Jackson was a good man and a good father. I was lucky to have him, and so would she.
HARRIET
I don't remember the day that Mom died.
Dad talks about her all the time. He took me to church growing up and told me that he didn't believe, but Mom would have wanted me to go every week for as long as I wanted to go. When I was little, I think I just liked being able to dress up and wear something pretty on the weekends.
Now, it's something different. Being in church is the only time I feel like I'm able to really talk to her and let her know how my life is going. I'm sixteen years old, and I'mm about to graduate college. I had been accepted to Stanford, but I had turned them down in favor of going to Northwestern University. That was where she had gone – she had done their medical track, and now, I was going to do the exact same thing. I wanted to follow in their footsteps. I wanted to be a trauma surgeon, like Mom, and like Uncle Owen.
I don't look like her. She was beautiful, I knew that. Dad always showed me photos of her, made sure that I had them in my room and they were all around the house, too. She had this smooth red hair and perfect teeth. She didn't look her age, not in any of the photos that had been taken before she had gotten sick. I loved the photos of her holding me when I was a baby the most. She looked so happy. I wish I could remember seeing that smile.
But when I talked to Dad and some of her other friends like Aunt Arizona or Uncle Ben, they don't talk about how beautiful she was on the outside. Instead, they talk about how wonderful she was a person. The way that she helped people, how passionate and driven she was with everything that she did. Ben had told me the story of my birth many times. Usually having stories repeated to me bored me, but the way that he talked about how strong she was, and how much she loved me, it was something that I loved hearing. It had been terrifying the first time, but now I treasured it.
The church was empty. It's April 23rd. Every year, Dad and I do the same thing. We go to church – he goes outside and sits at Mom and Samuel's headstones, and I go inside of the church. We meet outside again and go out to dinner at a Chinese restaurant. I love fortune cookies, just like my mom.
On my knees in one of the empty pews, I clasped my hands together and rested them on my lap, leaning forward and resting my head against the back of the pew in front of me.
"Hi, Mom. It's been awhile since we've talked." I smiled fondly. "I've been really busy since it's my senior year. Prom is in a few weeks and Dad is freaking out about it. I'm not. Grammy sent me the dress that you wore to prom, and I took it to the tailor to get it altered. Dad says that I look just like you when I wear it. I told him that he was being dumb because he didn't even know you when you were wearing it in high school."
I fall quiet for a moment. There were some tears in my eyes. I try not to cry when I talk to her. I'm happy. I have a happy, great life. I couldn't ask for more. But I still get emotional, every single time. It was something that had never gotten easier over the years.
"I wish you were here so that I could tell you happy birthday in person. Dad said for your birthday, we could make a donation to a foundation that researches osteogenesis imperfecta. He said that you would have liked that a lot. We both talk about you every day. I know that Dad doesn't believe in God, but he still prays with me every night at dinner. I'm sure you already know that, though. He comes to church with me. too. Only on the weekends. I've started coming to youth group so I can talk with more people about it. He said you would have been happy that I was doing that." I was sure of that. Dad had always talked about how religious and faithful Mom had been. Maybe that was another reason he thought I looked like her. I was a lot like her, it seemed like. He was always telling me that.
"Anyways, uh," I paused for a moment. "I really miss you. Sometimes I wish God hadn't taken you so soon, but I guess it's fair that Samuel and I should both have one of our parents with us. I miss both of you. I wish I remembered more of you. And I love you, Mom. I love you a lot."
Tears fall from my eyes without much control this time and I break the clasp of my hands, lifting up both of them to wipe the skin underneath my eyes. straightened up and sat back at on my heels, taking a deep breath as I looked around the empty church. There's still no one else here, but the light streaming in through the stained glass lighted it magnificently, with color that wasn't normally there. It felt like she was the one lighting it for me.
"Bye, Mom. I'll talk to you again soon."