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By Miranda Schwartz
“Where’s the store again?”
My nose bleeds harder the more questions my mother asks. She needs directions but when my blood pressure rises, my nose bleeds. An insomniac with a head injury and a bad sense of direction doesn’t create the stress-free environment needed to recover from sinus surgery.
Mom flew across country, and she isn’t young. I don’t want her to take care of me. I feel guilty. In preparation, I made many maps, programmed my GPS, yet somehow a trip to the drugstore across the street takes hours. From my fourth floor window, I watch her go the wrong way.
“Mom, I’ll look it up, map it, and print it out. Down to the street-level pictures.”
“No, that’s OK. I can figure it out. But what’s it called again?”
I tell her.
“What street is it on?”
“Main Street. You’re the one who found it.”
“So I go outside and make a left…”
“No, go right…” My nose leaks.When we left the Surgery Center, I had to give her directions, even after a test drive, and with a map. I was still doped up. Home was a straight line, less than half a mile away.
We made it, but as we parked in front of the building, Mom backed into a car. A guy was sitting in it. He was good-natured about it, as there was a blue sling under my swollen and bloody nose. Anyone driving may have been distracted by their passenger.
At that moment, I knew that recovery wasn’t going to be peaceful.
In the weeks to come, a bowl of soup slides off a tray onto my lap as she hands it to me; a lamp cord melts on a burner; she wakes me at three a.m. with howls of pain caused by leg cramps. I wanted to have endless compassion. And I did. But mostly I felt bad for myself, because I hadn’t slept for two weeks.
When I was 24 years old, Sassy magazine published my “It Happened to Me” about me and my mother’s Traumatic Brain Injury (TBI). Mom’s injury was relatively recent, and the tone was optimistic. We knew the damage was permanent, had affected her mood, balance, vision, short-term memory, but we hoped that rehabilitation would fix everything. We hoped for a new kind of normal.
What we didn’t know is that things get worse over time with head injuries. Bad balance means more falls, and more concussions that leave my mother loopy, and each time I worry this is the one from which she will not come back.
I stayed with her as she endured TBI rehabilitation, pretending it wasn’t happening, not telling anyone how I could live and work for free in NYC because I couldn’t explain what was happening with her to myself, let alone anyone else.
“Mom, I need to have a biopsy. They re-did the mammogram and they want to take a closer look at the cyst, and if necessary, send a sample to a lab.”
“Do you want me to come out there?”"No!"
I want to scream. I wish my Mom could take care of me. Two weeks before the multiple mammograms and suspicious cyst, I had knee surgery. My boyfriend helped me. I felt selfish and ungrateful for not letting Mom take care of me.
As I recovered, I lived on pudding and frozen pizza, but no one got parking tickets or lost car keys. No one kept me up all night or spilled food on me.
My mother before and after the injury to me is remarkable. Anyone who meets her now thinks of her as charming and eccentric. She was an incisive force of nature before, with a PhD, and so good in an emergency, you didn’t know that there was one. Now she is indecisive, emotional, emergencies can immobilize her, and she can no longer think on a PhD level.
When I wrote that “It Happened to Me,” at 24, I truly believed that I would learn, Mom would learn, we all would learn from Mommy’s head injury. As a family, we would become closer, more understanding, more empathetic, and loving. Twenty-one years later: I have trust issues. My father retreats into his intellect and can solve intricate 19th century math problems in his head. My mom is as open and frank with me about her TBI as she is emotional.
“Mom, do you think your head injury was positive at all?”
“No. It ruined my life.”
My mother was a piano prodigy. Music was the heartbeat of my childhood home. She woke me daily with intricate Schubert, Chopin, Mozart, gorgeous lilting, soulful piano music.
Last summer, my boyfriend asked her to play piano. Mom refused, coy, not wanting to show off.
“The truth is I can’t play anymore. It’s gone,” she later told me.
A whack to the frontal lobe takes away personality, reason, coordination, and brings bone-crushing headaches and loss.
I tried therapy to help me cope with an anxious, track-you, call-your-friends-and-the-local-police type of mother. Therapists say “set boundaries.” I explain that my mother can’t help it. What are boundaries? My pain may be soul-sucking, but hers attacks her, and there is a half-life. One day of extreme anxiety has a ripple effect for days, repeated calls, texts, emails, “I just need to hear your voice,” Mom says.
What I would tell that 24 year-old is, get ready for everything to be unpredictable from now on. Know that the only thing you can count on is this getting worse. Know that you are strong, know that you will cry. Know that your feelings will often become secondary. Know that you will have to intellectualize someone screaming at you, “Don’t walk away from me when I’m yelling at you!”
Know that you will protect your mother, feel like you burden your father, and lose touch with your brother. Know that relationships will be difficult, and you will not want to bring a man into the chaos that is your home. Know that as proud of you as your mother is, she will be hurt by this story.
Know that your mother is one of the strongest, most tenacious, and optimistic people that you will ever know. Know that despite her negativity, she loves you, would never hurt you, it is not an act of volition, and that what she experiences in her private thoughts is far worse that what you see.
Know that you will never be able to write the story of you and Mom because the end keeps changing, that all you have is the beginning, when you realized you lost your mother, but she is there, and that is a pain for which you have no words.
Know that one day you will meet a man who hears your circular arguments with your Mother, and texts you: “Say I love you, Mom. Now.”
Living with TBI is nothing like movies where a woman forgets her life every day, but finds comfort in love. It’s not a woman who forgets a husband who vows to love her until she loves him again. TBI is a choking pain in watching your once brilliant, scary-clever mother become dependent and fearful.
Watching her fall, talk too much, kick you when you’re down. So here’s what I’ve learned: my parents have an amazing marriage. I know how to be loyal. I know how to help. I have an endless well of empathy. I can separate a Mother’s love from my own bulls***.
And for now, that is enough.