I woke up one morning with arms and legs I could no longer control. I made jerky movements, as though my bones were stuck in rusty joints. I was usually chatty but now suddenly silent. I was a happy kid who had stopped smiling.
My mother noticed first. Her vigilance saved me–twice.
My body has bad timing. When I first got sick, my parents and I were in the middle of moving, not just out of town, but out of the country, from Toronto to Chicago. My father had just started a new job in a Chicago suburb. Before we could join him, he was tasked with finding a suitable house for the three of us and our dog Misty, a boxer who didn’t like it when I tugged on her pointy ears. My mother and I stayed back in Kalamazoo, Michigan, where we slept in her childhood bedroom while my grandparents slept in the room next door, just as they had when my mother was a little girl.
In my mother’s room, a white chest, accented with a hand-painted bouquet of pink and yellow flowers, matched her bed’s white headboard. A small white wooden desk and chair were adorned with the same floral motif. As a child I thought that having matching bedroom furniture was true luxury and wondered if my mother and her parents were rich.
I romanticize this period of my life. I was an only child! I’d never receive so much attention ever again. Being sick would never mean the same thing as it did in those early months of panic. Later on, no matter how sick I became, there would be other children to worry about. And then later yet, when I became even sicker, there was even less concern, until there was none left for my parents to feel. The calculus of having a sick kid is complicated.
“We can’t go to the amusement park because I have to pay for your sister’s medicine,” my father announced to my two younger sisters one summer.
We were crammed into my fathers’ stuffy Ford Fiesta, several hours into one of our interminable road trips. They wouldn’t stop begging him to ride rollercoasters at a park advertised constantly on tv.
I was 12. His words made my eyes widen and well up with tears. My throat felt tight. I couldn’t believe he’d put it in those terms, but it was the truth, so what could I say in return? My sisters eyed me angrily. When we stopped for a restroom break, they jabbed sharp elbows into my ribs.
But when I was the only kid, I had some privileges. My mother loved me enough to mind my feelings.
My father never seemed to know what to be careful with. As I grew older, I spoke to him about my pain less and less, even though with each passing year it got worse and worse. The few times I did tell him about it, he told me to go for a walk. My pain was of the sort that made it difficult to walk, but “a walk” was the only medicine he could think of.
When he wasn’t telling me to take a walk, he was leaving me behind. One Christmas Eve, he wanted to take me and my sisters out for a midnight stroll, a tradition he’d invented post-divorce to add a little magic to the awkward visits mandated by a hard-fought custody agreement. His solution to my inability to join them was to go without me.
As an adult, there are conversations, parties, even relationships, that I leave far too soon just to be certain that I’m not the one left behind.
My father’s carelessness stung. I hated how it took me by surprise each time, like a slap to the face.
But back in those early days, in my mother’s hometown, my mother eyed me closely. I was soon admitted to Kalamazoo’s Borgess Hospital and stayed there for three months. Maybe four.
At first the doctors thought it was leukemia. Lots of blood was drawn. Lots of tests were run. My uncle and other members of my mother’s side of the family have multiple sclerosis, so that possibility hung heavy in the air.
My grandma felt tremendous guilt about my uncle’s MS, believing that she had cursed him. And now I might have something similar, and the curse would bleed into another generation. As I teenager I would learn that one of my cousins, fearful of the possible diagnoses his children might face, aware of his father’s fate as well as mine, decided not to have any. Who would want a kid like me?
During those early months of illness, my mother moved out of her childhood bedroom and into my hospital room. Her auburn hair, tinged with the loveliest, most natural hint of gold, hung just below her jawline. A curtain of bangs covered her forehead. Her wire-rimmed glasses had enormous frames, yet her sky-blue eyes, her parents’ eyes, were not minimized but somehow spotlit by the large lenses.
There are photos from this time. My mother’s gaze fixes on me. My father holds me gently in his huge arms. Their smiles are wide. She is so pretty, he is so handsome, they are both so young.
The are no photos from the hospital. When did people start taking photos at the hospital?
During those early months of illness, my father would go weeks without seeing me. When he did visit, he sat by my hospital bed and wept. My mother recalls this detail with disgust, as though he was putting on a show for the medical staff. As for me, well, I can’t imagine my father caring enough about me to cry, so I hold this memory of hers close to my heart.
When my mother needed to leave my hospital room to shower, my grandma would sit with me. Grandma smelled like whiskey—not because of some strange perfume choice, but because she was an alcoholic.
The smell of whiskey still makes me smile. I catch a whiff of it in the air and for a split-second, grandma’s thin, veiny hand is once again resting on my own. She pats it lightly and then her grip momentarily tightens. What I wouldn’t give, grandma, for another squeeze.
Sometimes the two women would sit by my side together. Three generations, mothers and daughters, each one weighed down by vicious cycles of sickness and health.
Instead of whiskey, my mother drank wine. When I was a teenager, and we lived in a small house just a few miles from my grandparents’ home, the empty bottles would pile up on the floor of our tiny kitchen, in a sticky corner next to the garbage can. Flies would find the droplets of alcohol that had trickled out of the bottles and onto the floor, which was never mopped. Ants crawled into the kitchen cabinets, down the kitchen counters, across the kitchen’s linoleum floor and into the carpet in the adjacent den, sometimes reaching the cushions of the large brown recliner that faced the television. The recliner was my mother’s boozy throne, the seat in which she would drink wine and pass out.
Some months, in lieu of an allowance, my sister Lorna and I were permitted to take the empty wine bottles to the local big box grocery store’s recycling center. It wasn’t a center, of course, it was a windowless room that smelled like a dive bar—a mixture of beer and desperation. We were the youngest ones there, but we stuffed glass bottles into the recycling machines like pros. The machines would count and then crush what we fed it and spit out a receipt that we would take to a cashier. We didn’t use the proceeds to lower our grocery bill. We just took the money. I used it for gas. Who knows what my sister did with her share.
In high school, none of my friends were keen on wine. We drank vodka or whatever cheap beer was lying around. Now, I try not to keep any kind of alcohol in my home. I will occasionally allow myself a glass of a nice dry white wine, but I have rules for how much I will permit myself to drink when I’m alone. One glass one night quickly turns into two glasses the next, and before I hit three, I take a break.
I remember how my mother looked passed out in the recliner in our den. Getting drunk off wine is anything but elegant. Your lips turn a slick cherry red. A rosacea-like flush warms your cheeks. Asleep in the recliner, my mother looked sloppy and swollen, and occasionally, grotesque.
The recliner she fell asleep in was positioned right next to the only door I had a key to. It was impossible to enter the house without walking by her, and it was impossible to walk by her without waking her up. No matter how reasonable the hour, she would wake up angry.
“Where the hell were you, Katherine?” She spat the words out like an accusation, but never waited for an answer.
I was usually where I was supposed to be. At a friend’s house. At swimming practice. At a football game with the rest of the school. Then at 15, I added drinking and college parties to my mix of extracurriculars, but maintained my perfect GPA, so no one blinked at my increasingly risky behavior. No one noticed that older boys, and then men who had no business spending time with a teenager, were sniffing around. No matter where I was, my mother was still drunk in the recliner. She spewed the same venom upon my return home.
Do drunks smell alcohol on other people? If she did, she never said so.
My mother occasionally tells me stories of her own childhood, how she would find her mother passed out, drunk, in one of the many closets in my grandparents’ home. How cruel her mother could be when she drank. The connection is never made, never spoken of. It just hangs in the air, a sticky thread linking two women that loved but didn’t like one another.
Around month three or four of my first hospitalization, the doctors finally figured out what was wrong with me. Not MS, not cancer, but rheumatoid arthritis. And, just for kicks, I also had a related eye disease known as uveitis. This combo would eventually rob me of my sight and my ability to walk. It would shorten my lifespan. If I wasn’t careful, the immunosuppressants I took to treat my maladies would lead to a serious respiratory illness which itself would kill me.
It would be a difficult childhood. But I probably wasn’t going to die as a kid.
The first line of treatment for juvenile rheumatoid arthritis, back then, was aspirin. No one knew quite what to do with kids like me, so they just threw lots and lots of liquid aspirin at the problem.
My mother took me home from the hospital to her parents’ house and followed the dosing instructions meticulously.
She noticed new things. A fever. What looked like a rash. Coughing that wasn’t a rattle but made it seem like I was gasping for air.
The first doctor told her it was the flu.
The second doctor agreed with the first.
The third agreed with my mother—I was in fact allergic to aspirin. My mother saved me, once more.
Rheumatoid Arthritis. Uveitis. An aspirin allergy. Two generations of drunks to look after me. A father who didn’t know what to do with a sick kid. I had a chance, but not a good one.
I was a little over a year old.
***
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Katherine, all I have to say is: You are so amazing! Everyday you struggle with your pain and still continue to be such a talented professor, speaker and writer. I feel so lucky to know you. Ti amo, Kathy