After I lift her from the chair, help to maneuver her body on the toilet, I sit in the wheelchair while she poops. We talk. Well, I talk. She replies with phrases you might only speak if you had half a functioning brain. The part that does work understands it all. Every sideways glance, every half smile, every tear, every word, every feeling. We laugh together over morning coffee. I show her pictures from my phone. An old friend that just got married. I have to admit, I tell her more of my secrets now that she can’t talk to others about them. I confide in her, just like I always did, but in a different way. And she still gives me advice, just like she always did, but in a different way. I can tell by the tone of her words what she is thinking. “I know,” I tell her.
I look up at the framed pictures from the beach. A hotel pool with the ocean in the background, her feet in the sand, sandals covered in sand. Sea shells line the wall shelf below. God, she loved the beach. I never understood it. While she lay baking in the unforgiving sun, I was cooling my body off in the water. Thrusting my body into waves, riding them back to shore. If I couldn’t escape the heat, I could at least stay wet. Our beach vacations for me were a constant struggle to find shade. I grew up with the feel of sand rubbing between body and wet polyurethane, the lesson of sunblock (despite my mom’s preference for baby oil), and a love/hate relationship for all things beach.
I looked from the shelf of seashells to my mom, sitting naked on the toilet, waiting for my dad to wash her. This has been the morning routine for every day since she came home from the rehabilitation center over two years ago. She looks sad. I want to ask her if she’s happy, but I’m afraid to hear her answer. I wouldn’t be. I know she’s not. I know she hates that she survived this wicked stroke that took her speech and ability to move the whole right side of her body. I know my mom. She would rather be dead than be living this way. But she’s not. She’s still alive, unconditionally dependent on my dad and others to take care of her. She still has her family, and that’s something. But she sits in quiet contemplation instead of flamboyant, aggressive conversation. She finds ways to make herself the center of attention. We appreciate the ways in which she is still the same. We are grateful for any amount of mom we still get to retain.
I remember walking from the beach to our rented condo in Myrtle Beach. I had just finished digging holes and building castles by the shoreline. There wasn’t an inch on my body not covered in sand. My thick brown hair was matted with salted water and sand. I was maybe seven. I thought I had pooped my pants, only to realize I was carrying half the beach back with me in my bathing suit bottom. My brother’s teased me. I pulled it out and threw it at them. When we got back to the condo, I would shower and take a nap. The ocean made me tired. We’d eat some food and head to the pool. At least there I could find an umbrella, some palm tree shade (stupid thin leaves). My mom would read or sunbathe in the reclining chairs by the pool. If we were vacationing with friends, she talked to them. We might talk, but mostly she just wanted a break from her three children. I found some kids to play with.
When my husband first suggested we go to the mountains on vacation, I didn’t understand. “People vacation at the beach,” I told him. He asked, “Do you want to go to the beach?” “No, I don’t like the beach all that much. It’s too hot and there’s no shade.” “You know there isn’t a rule about what makes a vacation a vacation. It still counts if we go hiking.” So we did. And so began a new way of vacationing for me: active, adventurous, exciting. I never went on a beach vacation again.
My mom had her stroke on a Thursday. The Tuesday before she and my dad were in State College. We all (my husband, daughter, and my parents) had dinner at a fancy restaurant in town. My mom and I had been fighting about a former friend of mine. She was right, of course. But at the time, I didn’t want to hear it. God, was she stubborn. So abrasive with her advice and opinions. The day after when she told me she threw up in the middle of the night we thought it was food poisoning from the restaurant. But my husband had the same dish and he didn’t get sick. Weird. Maybe she was getting sick. But my mom doesn’t get sick. Weird. The next time I would see her she would be barely conscious in the ICU at Allegheny General Hospital in Pittsburgh. My mom was going to die. I was certain of it.
JoJo’s 4th birthday party
We used to walk the shoreline and collect shells. It was one of the few things I liked about our beach vacations. My mom loved collecting shells. She used to fill up those plastic cheeseball containers with seashells from her beach vacations. There’s so many of them, scattered in various nooks and crannies throughout the house. We look for the perfect ones. No cracks, only that little hole that, as a child, didn’t know how it got there. A mystery of God, I thought. I believed in God back then.
When we went to Hilton Head we collected sand dollars from the sandy bottoms of the shallow water. Adult, nature-lover me is screaming inside that we did this. Such a selfish, unnecessary, greedy thing to do. Once we got home, my mom would wash them and bleach them. Then she might paint them or do calligraphy art on them. We’d get them as Christmas tree ornaments with the year and destination of our vacation. I am reminded of these every second weekend of December when I travel to Pittsburgh to chop down and decorate a tree with my dad. There are some traditions you don’t stop doing just because you grow up and become an adult.
Sometimes when we’re sitting together at the kitchen table I’ll ask her what it’s like to only have half a brain. She chuckles, says, “Well, I see.” But it’s the intonation in her voice and the expression in her face that tells me what I need to know. Its frustrating. She knows what to say but can’t say it. She understands what everyone else is saying but can’t contribute to conversation. It takes a lot of effort to tell someone her wants and needs. I wonder what it’s like to hear the right words in your head and then hear the mumbling mess that comes out. The consonants and sounds that don’t quite match up. That our family can understand a lot of what she does say or mean or need is sort of remarkable. Or just telling of how in tune we all are with one another.
My mom is the oldest of four siblings. She has two brothers and a sister. I have eight cousins. Our family gatherings were always large. A controlled chaos. On holidays our house was consumed with gregarious Italians. It was exhausting. I usually tried to hide somewhere to nap or find some quiet moments among the chaos. But I loved it. I miss those holiday gatherings. I miss having a large, crazy family. My mom’s dad died when she was in her early thirties. He had a brain tumor. He maybe had a stroke, but I can’t remember. That would be ironic. Her best friend also died that same year from Diabetes. I was just a tiny kid, but that was a really difficult year for my mom. I don’t know that she ever recovered emotionally. Maybe.
My mom (left) and her brothers and sister
All of the cousins
My grandma, my Nunnie, died of Diabetes in 2006. I was completing my student teaching in Sweden. She died in November and my mom didn’t tell me until I got back in December. I was angry at first, but I understood. What could I do from thousands of miles and the Atlantic Ocean between me and my family? I was angry at my grandma for a long time after her death. She was emotionally unstable and caused a lot of unnecessary drama between her kids. Even after her death they still fought about her. I hated the senseless fighting. But she was a good woman and had so much unconditional love for her grandkids.
A very brave little girl.
Explaining to JoJo what happened to her Mimi was really difficult. She was three and didn’t really understand. She wasn’t really scared. She wanted to see her Mimi and touch her and kiss her. She was so remarkable in that hospital. She grew up a lot… saw things she didn’t understand but that would have to learn quickly. She learned about brains and strokes and what happens when people get sick. She just continued to love her Mimi. And I know that strengthened my mom’s spirit. Jo was her world. Her absolute world. Any friend or family could confirm that without hesitation. And visa-versa. They loved each other “to the moon and back.”
our home in the ICU at AGH in Pittsburgh
When I arrived at the hospital early Friday morning, around 3am, most of my extended family was already there. I had never driven so fast from State College to Pittsburgh. I don’t remember much about that drive, except wiping my face so I could see the road in between sobs. My mom looked terrible. She looked like someone who was about to die. Her eyes were sunken in and dark. Her skin was wrinkly and saggy. The next three days would be some of the scariest days of my life. Sitting, waiting, wondering… was my mom going to die? On the second day they called my dad and said they had to operate on her brain because there was too much pressure from the clot. The pressure would kill her. The surgery might kill her too, but it was the best of the two options. The surgery gave her a fighting chance. Our family was already familiar with the waiting area of the ICU at AGH. A few years before my uncle had a brain aneurysm and for days we were in and out of the third floor of AGH. This was no different. We had brought blankets and pillows. Coolers of food. Toys and books for JoJo. There were flowers. Chargers for our phones. I brought my school work. I was still teaching at the high school. I hated that I would have to go back to work while my mother sat in a hospital bed.
Facebook post from March 27, 2015:
Dear friends, last night my dad found my mom unresponsive on the laundry room floor. She had a stroke and later it was found that she has a clot in blood vessels in her neck, cutting off blood supply to her brain. She currently is unable to speak and paralyzed on the right side of her body.
When I arrived at Allegheny General Hospital my whole family (also extended) was there. When I went to see her late last night / early this morning it was clear she could see and respond emotionally to me and to my family. But she was also very scared, and it was painful to see the fear in her face and the helplessness that she must feel.
My family and I cannot grief alone and in silence — that is why I’m reaching out so publicly. Please keep us in your thoughts, prayers, hearts, etc. Linda is stable, but she is certainly no where near healed and it will be a few days until we have a clear picture of how long the road to recovery will be for her.
I’m so overwhelmed right now — I’m very scared. I’m so scared of losing my mom. I want back the crazy, nutty, often difficult mother that I had just a few days ago. I’m scared for JoJo. My heart breaks for her. How can I tell her that her Mimi will never be the same? I want JoJo to have her Mimi back.
My mother was beyond frightened. I remember feeling this when I held her hand and looked in her eyes. She had tubes connected and inserted in all parts of her body. She understood it all. She knew her life, should she survive, would never be the same. I thought she would be a vegetable for the rest of her life. After her surgery, half of her head was shaved and her left side of her brain was sunken in. It made her look like Quasimodo. Her glasses didn’t stay on her face. Her mouth drooped. Her hair was greasy and matted against her head. My uncle sat beside her and told jokes, tried to be the asshole we all accept and love. My dad tried to be practical, telling us kids to return to work. There was nothing to be done except let time work it’s healing magic. My brother set up a radio to play this God stuff that I didn’t like at all. It was on a loop and I swear it annoyed my mom. But my brother believed it would help to heal her. And he needed something to believe in.
It was March 26, 2015 when my mom had a massive ischemic stroke in the left hemisphere of her brain. She was doing laundry. She was alone in the house. When my dad came home from work, another long day for a CPA during tax season, he found her mostly unconscious on the floor of the laundry room, sitting in her blood and bodily fluids. She probably hit her head on the washer as she fell to the ground. We don’t know how long she was alone. Maybe as much as three hours. Spring was just beginning. We didn’t know it then, but our family was also just beginning… to fall apart.
I want to be at the beach with her, walking the shoreline and finding seashells. I want to hear her tell me how stupid I’m being about love. I want to be cleaning my house with her. I want to be digging in soil and planting flowers. I want to hear her laugh and yell and say the word “fuck” over and over again. I want her mean and I want her loving and I just want all of her again, without limitations. I want my mom.
My mom sent this to me when I was struggling with depression in 2014.
JoJo and Mimi, after she was moved out of ICU.