Ambivalent

[Content Warning: References death, mental illness, minor child abuse, minor violence.]

I could easily find my way around hospitals by the time I was 12. I knew every hospital within a 50 mile radius of our house– my mother had spent extensive time in all of them. She was born with a ventral septal defect, a hole in her heart, almost an inch in diameter. Or as my grandmother described to me, “the size of a man’s thumb.” I remember thinking an inch didn't seem so big, but for reference, a newborn’s heart is only the size of a walnut. She had life saving surgery at Children’s Mercy Hospital in Kansas City, KS. At the time, 1972, it was groundbreaking surgery. Now, I see a commercial sometimes for Mayo Clinic that says the newborn they treated, born with only half a heart, had just turned two years old.

I can’t find my way around all the hospitals as well anymore. And I don’t remember how many open heart surgeries she had throughout her life, maybe ten or so. I don’t remember any of the doctors’ or surgeons’ or nurses’ names, but I remember making the nurses laugh by drawing hair and mustaches on the faces for the pain chart in my mother’s hospital room. It became tradition, and I drew it on every whiteboard in every hospital and ER room we visited throughout my childhood. We visited a lot of rooms, my mother, grandmother, and I. It felt like at least once a week, dead of night, something went wrong and we rushed out. Except when she stayed hospitalized for weeks or months. I either stayed the night with her or went home to my grandparent’s house where we lived, the upstairs all to myself and ghastly quiet.

I liked staying the night in the hospital oddly enough. One night while staying there, I asked my mother about my name. She said, obviously, my first name was after my grandmother (her middle name.) “What about my middle name?” I asked. She said she chose my middle name to be “Joy” because I was “the joy of her life.” And I always liked my name after that, I don’t even mind that it rhymes, I kind of like it actually.

All this started when my mother was about 30, the surgery on her heart at Children’s Mercy fixed her up perfectly until then. Then my grandmother got a call from my mother’s work. Once the call ended, she looked at me and frantically said, “Your mom has collapsed at work. They called an ambulance. We need to go to the hospital.” That started the rounds and rounds of surgery again, like when she was born, with a pacemaker, then a temporary valve, then a mechanical valve. The medications kept piling up: anticoagulants, NSAIDS, vasodilators, and an as needed benzodiazepine for her stress. Finally, with all the treatments, her health problems settled for the rest of the decade. She still went to the ER every couple months, but there usually wasn’t anything wrong.

Psychologically, though, things were just picking up. As I gained independence, my mother fought me tooth-and-nail. I was her caretaker more than her daughter. I did the best I could. I went to her regular doctor’s appointments with her. I helped her with “doing her meds” weekly. I cooked for her and tried to help her diet and lose the weight she’d gained over the ordeal– to no avail. 

I really tried my hardest, but I couldn’t completely sacrifice myself to her bottomless needs; and I felt crazy trying to navigate her rages, wildly swinging emotions, and manipulation tactics. Eventually, we got her in to seek psychological help, and she was diagnosed with Borderline Personality Disorder. Finally, my grandmother and I had answers and relief. And we were even more relieved when she agreed to keep seeing the therapist.

Her behavior still took time to improve, though. On the way home from one of her therapy appointments, we were having an argument. I don’t remember exactly what it was about, something about how I wanted to go out with friends, I think. Suddenly she started swerving in and out of oncoming traffic. I screamed, “Michelle! What are you doing?!” She screamed back, “I’m trying to kill us!” I talked her down, apologized profusely, promised to stay with her, and she calmed down. Situations like that just happened from time to time, though usually it was just a verbal assault. It was chaos, with her psychological and medical problems competing for who was going to ruin the peace tonight. 

However, a combination of therapy and natural maturation, my mother was able to treat her BPD successfully and diminish her symptoms quite a bit. She still needed care though, so when I was 20, she moved in with my fiance and I when our roommate moved out and other family needed to move in with my grandparents.

I cooked for her and my fiance on the nights I didn’t work. I hated cooking for my mother because she was an extremely picky eater and vocal about it. “This quesadilla is overcooked,” “Why did you put spices in the tomato sauce?” “What’s this weird thing?” But despite her complaining, she’d always clean her plate. And every time, she’d help clean up the kitchen, too. She actually loved to clean, which was great because I hate it.

She couldn’t do much besides clean. She was intellectually disabled and just couldn’t use things more complicated than a mop or microwave. She had the brightest smile you’d ever find when she worked at cleaning, and she always wanted to do more. It’s a shame she couldn’t, she had a wonderful work ethic. Her mentality was almost childlike, eager to please and innocent, but lacking some of the more refined points of adult behavior and communication. This made her pretty affable to everyone outside the family, some acquaintances becoming very protective of her. In the family, though, we had more of a burden from it and would wish she could grow up some. 

We don’t know where her disability (nor the BPD) came from. All the surgeries as a baby, maybe? Being alone in NICU for months and months? The seizures she had when she was taken off life support? Who knows. My grandmother told me, “I asked and asked the doctors if there was brain damage, but they never would give me a straight answer. I eventually just had to give up asking.” 

But things from 2015 to 2016 were peaceful for my mother, fiance, and I. We lived together serenely and smoothly. Things would have probably continued that way for some time; but my mother was in pain. A scar from a feeding tube on her stomach had herniated and she complained more and more of the abdominal pain it caused. Finally, it was decided she would have surgery. A simple, hernia mesh repair done at Lawrence Memorial Hospital in Lawrence, KS.

You know how they say “every surgery has risks?” I was 21 when I understood what that truly meant. I had a naive trust in doctors and medicine– in today’s age, only complicated things could go wrong. Doctors are so smart, they wouldn’t let anything happen from such a simple surgery. The two year old with half a heart spoke in praise of modern medicine. But doctors aren’t gods and fate is fickle; now I know that everything has the potential to go wrong. And to always be ready for it.

The surgery day came and my grandmother and I waited together at the hospital. A few hours later, it was declared successful and they would just keep her overnight for observation. My grandfather and I came back the next day to pick her up and take her back home. It was taking a long time to get the doctor’s okay, though, and my grandfather was getting tired. So, he went home and my grandmother was going to pick her up instead when she finished picking up my little cousins from school. I decided to stay with my mother and wait instead of going home with my grandfather. I’m glad I did.

She was in her hospital bed and I was in a chair beside it, watching whatever TV show was on. We made comments to each other about the stupid commercials and the weird products they’re always trying to sell. Things were calm and boring, typical of being in a hospital. I wish it had stayed that way. Instead, it went to the other extreme of hospitals: hectic mayhem.

She kept trying to use the restroom, but couldn’t seem to urinate. That’s common after anesthesia, even I experienced it when I was put under before. But it started to hurt. The nurse came in and tried to straight cath her. Not much came out. “It hurts,” she complained, “I have to go.” The nurse used a bladder scanner, and saw her bladder wasn’t full. “But it hurts.” I asked if she could possibly have a UTI or something, but the nurse didn’t think so. My mother did have stage 3 kidney disease, from all the strong medications and anesthesia she had endured in her life. What we didn’t know right then was her kidneys were now failing and that’s where the pain and urinary retention came from.

In a quiet moment, while the nurses talked outside in the hall, it was just my mother and I in the room together. She looked over to me and said “Thank you for staying.”

Then her blood pressure started dropping. And dropping. And dropping.

The next moments of my life are a blur in retrospect. Nurses and aides filling the room, my mother screaming in pain. I watched helplessly, from the back corner of the room where I had been pushed aside. During this, my grandmother came in, surprised and confused. A doctor came in, barking orders. It was decided that they needed to intubate. Her kidneys were failing and her blood pressure was dropping. No one knew what was going on or why, but they put her on life support and so the last thing I remember my mother saying was what she’d said right before– “Thank you for staying.”

Now she was unconscious and intubated. The doctor explained she needed dialysis, but she couldn’t have normal dialysis with her low blood pressure, she needed a special machine. They didn’t have it, she would need to be transferred to University of Kansas Medical Hospital in Kansas City, KS. My grandmother and I drove there, found our way through the gigantic hospital to the right wing, and were told to sit in the waiting room. It had grown late and most of the lights were off in the room and the hallways. We started rubbing our eyes and we waited. We made a pot of coffee they had set out and we waited. I paced around a little, looking at the framed paintings in the room, and we waited. 

Morning came, things were looking grim. We considered going home for a couple hours to sleep, but a tall and skinny woman doctor said to me, “I know you’re tired, but she’s very sick. Very, very sick.” We waited some more. A different doctor came, a young man. “What do you want to do?” He asked my grandmother and I. I was her durable power of attorney so it was technically my decision. I regretted becoming her POA, I wasn’t ready at 21 for that type of responsibility. I asked the doctor if there was anything else that could be done, he shook his head. So, I said to take her off.

Was that the right call? Could some miracle have happened? I don’t know. It just is what made sense at the time. The situation seemed really hopeless. The doctor said nothing else could be done.

Family started arriving, her father, sisters, brothers, nieces and nephews. My fiance arrived last, he had been trying to sleep for his night shift. We gathered in a large conference room that they had opened for us and talked. I don’t remember a word that was said, to be honest, or even what everyone was talking about. I just kept wondering if I made any mistakes.

Then everyone started leaving somewhere, so I followed, dazed. I didn’t notice my aunt and uncle had gone the other way. I didn’t know until after that they held her hands while they took her off life support. Then we all went back to her hospital room, where she looked like she was peacefully sleeping, all the medical equipment gone now. But upon closer look, you could see all the bruises covering her body like spots on a Dalmatian.

“Bye, Aunt Shelly.” My cousin said through his tears. My other cousin, not crying, nodded in agreement and stayed quiet. My older cousin was crying into her husband’s arms and gave my mother’s body an awkward hug. My grandmother was sobbing and sobbing, with everyone trying to comfort her. My grandfather was respectfully silent. My aunts and uncles were quiet too, just trying to keep everyone together.

“Goodbye, Mom. I’ll always remember our time together. Going to the walking park and watching Rocky Horror Picture Show on Halloween. And living together this past year.” My voice cracked as I said my goodbye, but tears didn’t come. Couldn’t seem to come.

 Then we all left in silence. The smokers lit up once in the parking lot, and I received a text from my boss asking how it was going. I texted back “She didn’t make it” and pocketed my phone. I got into our car with my fiance, who graciously drove, and we went back to our house with an extra bedroom.

My mind was mostly absent of thought, but the words that replayed were “Michelle is dead. I’m an orphan now. I’m the only one left. I’m alone.”