Ashes No More

PART 1

BEFORE I REMEMBER

CHAPTER 1

THE GREAT ESCAPE ARTIST

It’s Alzheimer’s, my mother abruptly announces to me over the phone.

I stare into my laptop; my mind goes blank . . . so much blankness. We found out in September that Dad had dementia. Today I find out it is Alzheimer’s. I want to believe it is only dementia, just plain old dementia. Alzheimer’s sounds like more of a death sentence. It’s like the difference between varsity and junior varsity; one you take a little more seriously.

Okay, Mom. We’ll get through it, I reply.

Alright, I’ll talk to you later, she said, hanging up.

I feel a knot inside my stomach. It swells, reaching up to my throat. My nostrils flare, and the knot comes out of my eyes in the form of tears. I am hysterical and angry. I have been telling her for years he was showing the signs. She would call them senior moments, but I knew these were more than moments.

My father’s mother had Alzheimer’s. I never knew her without it. She lived in a nursing home in Pennsylvania where we would visit when I was young, and she was a large woman confined to a wheelchair. She would swear her roommate, Dorothy, locked her into her closet at night. It was the first time I watched someone believe their own lie.

My father would say, Mom, where’s Dorothy now?

To which she would laugh and respond, Dorothy is in Oz!

And then she would pet a stuffed cat on her lap and stare at my father as if she had no clue in the world who he was. From outside her room, I’d hear wailing and yelling from the other residents. I would pray, God, please don’t ever let this happen to me. And now it is happening to my father.

Within months of his diagnosis, we move my father into memory care. He settles in nicely at first, convinced this is his new place of employment. When I call, he rushes me off the phone like he did before he was sick. Some days when I visit him, he is exasperated and overwhelmed by his meetings. He becomes an escape artist. He breaks out of his unit and one day makes his way to the other side of the parking lot. Another time, he makes it outside and sits on a bench. When he’s found, he insists he is waiting for my mother and me to pick him up from work. Another time, he is caught coming off the elevator. Like a felon, he is given an ankle monitor. He’s always been incredibly sneaky. The Alzheimer’s doesn’t change this. I, on the other hand, feel very, very sick.

Despite how I feel, I drag myself out of bed to take my father to chapel. I am running late and struggle my way off the elevator and down the hall to get my father. I open his door.

Come on, Dad. Let’s go. We are late, I say, gasping for air.

Where are we going? he asks.

Chapel, Dad. I take you to the chapel here every Sunday.

Okay, let me grab my hat.

Does anyone have any prayer requests? the preacher asks. Desperate, I raise my hand. Please pray for me. I am having health problems. I open the Bible and follow along with the preacher’s teaching.

My father stares vacantly at the church program in his hand. I gotta go pee.

Okay, Dad. Let’s go pee. I take my father down the hall to use the bathroom and wait for him outside the door.

We return to the service, and he complains, Let’s get out of here.

We’ll leave when the preacher’s done.

I feel like I’m raising a five-year-old. The service finishes, and I take my father back to his unit and into his dining hall. Like always, I go into his apartment to wait for him to finish his lunch. This time I take a nap in his bed. I am in a deep sleep when I hear the doorknob turn and my father’s footsteps. I shoot straight out of the bed. It alarms me how quickly I jump awake. Ashes, you can go back to sleep. It’s okay.

No, that’s okay, Dad. Sleeping in his bedroom with him in the other room feels uncomfortable to me. I sit down on his couch and listen to him complain about my mother. Today, he is convinced she has a new boyfriend. Last week she was dead, and the week before that, she was a lesbian.

I cut the TV on, and Golden Girls is on. I listen as Rose tells Blanche to never ever give up on your dreams, even when they’re doused in sorrow, because even though they seem far away, they could come true tomorrow.² I understand Blanche’s pain. I wish my dreams would come true too. I wish I was on that TV and not in this memory care. Then again, if my dreams did come true tomorrow, I would probably need a cortisone shot to get me out of bed. I have a choice. I can let the pain in my heart break me, or I can break through.

Later that week, I get a text message from my good friends, Dusty and Hannah, congratulating me. I have been voted one of the top three comedians in my city by a local magazine. This is unbelievable. I’ve been performing standup for twelve years, and I finally have my first credit. All those hours of performing in empty bars and responding to strange men in DMs (direct messages) on social media are paying off. I can’t wait to celebrate and buy myself some new shoes.

As with every high of my life, there is a low. I’ve received recognition, but I also feel so sick I can hardly move. Not again. I’ve spent my entire life sick and heartbroken. The doctors prescribe their medications, they run their tests, they do their surgeries, and everything always comes back normal. There’s never an answer as to why I become so ill. My immune tests always come back intact. There’s something very wrong with me. I know it. I pray to the Lord to reveal what it is. I feel deep in my spirit that it’s not something the doctors are going to find. It is something I will find, and once I find it, I can break through.

PART 2

AS IT WAS HAPPENING

CHAPTER 2

THE QUEEN OF SHEBA

Little girls should be playing hopscotch and jumping rope, having fun without a care in the world other than picking their favorite ice cream off a truck. Little girls should be on playgrounds, not in hospitals and clinics, like me.

The first time I have surgery, I am five years old. Plagued with bladder infections, I’ve been wetting my pants and my bed consistently for two years, despite being fully potty-trained. My mother takes me to a urologist, who wants to perform a surgery and look inside my bladder. The nurses are so nice. Everything is hectic, and everyone moves around very quickly, but I feel safe and special. I feel seen. You are going to go to sleep for a little while, and when you wake up, we will be here waiting for you, they tell me. I feel something cold press against my body. I feel a mask come toward my face, and I can smell its plastic.

When I wake up, I am told I must pee before I can leave the hospital. It burns. I do not like this at all and want to go home. My mother begins giving me medicine every morning. I hate it. I figure every child must take medicine, and one day, we don’t need to take it anymore. I don’t see myself as any different from my friends.

School is an exciting concept for a little girl. Little girls dream of becoming big girls, and big girls go to school. School is a rite of passage for a five-year-old girl. First, it’s school, then it’s marriage. Easy peasy. I start kindergarten in Catholic school. My mom packs me an extra pair of panties, some tights, and a jumper every day in case I have an accident. She always calls it an accident when I wet myself. I can never control it. It just happens.

My kindergarten classroom has a big bathroom in it. There is plenty of room for me to change comfortably on the accident days. There are two doors to the bathroom. One leads to my classroom, and one leads to another classroom. Sometimes I get nervous someone from the other door is going to open it and see me naked. Other than this, I love kindergarten. I love my cubby, and I love my backpack. I have a desk that looks like a table. My name is printed out on a card and sits in front of me, so everyone knows who I am. I get to sit by the teacher’s desk. I feel safe close to her. Sometimes she turns toward me and gets a sad look on her face.

At night, my dad teaches me my letters. He lifts my shirt and draws letters on my back. I guess the letters, and we both get happy when I get the right letter. I never want him to stop.

My mother sits downstairs in our den watching TV. She loves the TV. My dad loves his computer. My sister, Laura, who is sixteen years older than me, loves to sit in her room and play her guitar. I love to sit in my room and play school with my dollies.

Before I go to bed, my father comes into my room to check on me, and as he leaves, he looks at the doorknob, then back at me. Keep this door unlocked, he says to me. Confused, I nod my head.

Every family has secrets, and mine is no different. Our secret is that I am a very sick little girl, and no one seems to know why. I still get a lot of bladder infections, and I go to the doctor a lot. I call him the pee-pee doctor. He pulls my shirt up and presses on my belly. I get nervous. He asks me if it hurts when he presses on my belly. Sometimes he will ask my mother and me a question: How is everything at home?

Oh, it’s good. Very good, my mother will tell him with a smile.

I miss a lot of school because of my infections. Nurses start coming into my house. I sit in my mom’s big chair in our den. The nurses put a needle in the back of my hand, and a long tube comes out of it, connecting to a bag above me. They come to our house several times a week for a while.

Because my mother is a nurse, she gives me the IV medications herself when she is home. The nurses tell me I am strong even though I don’t feel like it. I don’t feel any different from other little girls. I only get a lot of bladder infections and I hurt sometimes, but it will go away when I grow up.

One of the boy nurses says to me, You look like the Queen of Sheba in that big chair. I like him. I feel special—seen.

My mother wants a bigger closet, so my parents move their bedroom downstairs and turn part of their garage into a closet for her. My mother gets everything she wants. I want to grow up and have big closets too.

My parents move me and my sister into different rooms upstairs, and my old bedroom becomes my dad’s computer room. I don’t like being upstairs at night without my parents. I am afraid of the upstairs, and I am afraid of the dark. The house makes loud noises. It’s settling, Ashley, my mother reassures me.

I am afraid to sleep in my room at night. I stare up into the hallway from the bottom of the stairs, and my heart races. The stairs creak as my feet step on each one. I feel a heaviness exuding from behind each door of the bedrooms in the hallway, including my bedroom.

I can’t sleep in my room; it scares me. There is something in my room, and it wants to hurt me. It comes into my room at night when I am asleep, and it wakes me up and scares me. Even with my nightlight, I am still afraid and cannot sleep.

I start sleeping on the couch in our den. I think this thing can still get me, so I sleep in a sleeping bag on the floor of my parents’ bedroom. Eventually, my parents get an extra bed and move it into their walk-in closet for me to sleep in. There is something terrible happening up those stairs.

CHAPTER 3

THESE ARE THE DAYS OF MY LIFE

The day is easier than the night, but I don’t like the days much either. The days remind me I am alone. I often feel trapped like an animal in a menagerie. I know there is a big world outside of my parents’ house, but I don’t know how to access it. They don’t leave the house much, and my mother regularly tells me no when I ask to go to a friend’s house. I sit in the bay window of our living room and watch cars drive up and down the hill that faces our house. I don’t know where the cars are heading, but I wish they would take me with them.

Catholic parents get very excited when their children reach second grade. Second grade is when Catholic children receive their First Communion. All us kids fill up the church and stand in line to have a priest hand us bread and wine. It sounds illegal, but it’s not. It’s like a giant party for kids, but the kids don’t really want to be there. We would rather be watching cartoons or playing Nintendo. I have a The Little Mermaid Nintendo game waiting for me after this.

My mother dresses me up in a white dress and a large crown. I look like a princess—a sleep-deprived princess like in the Princess and the Pea. My parents take me to get my picture taken. I ride in the back seat of my mother’s gray Buick Skyhawk as we pull up to Sears. She parks the car, and I feel a wave of emotion hit me. I don’t know what it is, but sadness consumes me. I feel something has changed in me; I am no longer a little girl. Something happened, and life will never be like it was before this day.

I am getting sicker. Sometimes it’s a bladder infection, sometimes it’s a sore throat, sometimes it’s a belly ache, and sometimes it’s a headache. How’s everything at home? the doctor will ask my mother and me. Everything is good. Real good, she will reply with that same smile.

My mother is a great pretender. She has two faces—either smiling or scary. She’s always nice when she wears her makeup; then she’s a good mommy. When I am sad and I cry, she holds me and pats my back. Let it all out, she will say to me as I sob uncontrollably. Little girls cry. It’s what we do.

Sometimes, she will