Un/conditional compromises
Written by Emily Wolinsky
The following contains descriptions that some may have a hard time reading. Please take breaks if you need to and give yourself time for care.
He drove erratically, with his right hand holding his one-hitter and his left hand on the steering wheel. His eyes were bloodshot. He’d steady the wheel with his knees from time to time so he could tie his hair into a frazzled ponytail and rub his eyes, or grab his pill bottle and knock a few back.
Jake was my nightmare. He was also my boyfriend who was prescribed everything under the sun by a psychiatrist he saw once in a blue moon. And Jake was also my personal care attendant (PCA), a person I had chosen to take care of my every need as a woman who didn’t have the physical power to move.
Jake put my clothes on in the morning and he also took them off at night to have sex with me. Jake showered me in the mornings and he also once forgot that I was in the shower because he passed out at the kitchen table from too many pills. I screamed for hours until he woke up, stumbled into the bathroom, and apologized with an excuse. Always an excuse. Thirty minutes later, I was dressed and at work explaining my tardiness: “Jake overslept again. I’m sorry. I’ll work overtime.”
I was 22, living alone in a new city 2,000 miles from home with no one to rely on but Jake. I had never lived with a boyfriend before. I had never worked with a male PCA.
With an undergraduate degree in my back pocket and the future in front of me, I couldn’t go backwards, so I accepted the present with Jake. This situation that I put myself in was my doing, my responsibility, and my problem to fix. It wasn’t abuse in my mind then. It was survival.
It’s not like people were begging to replace Jake in either of his roles. PCAs have always been hard to come by. (Almost two decades ago, the state gave me six hours per day to split up into three personal care shifts at $7.25 per hour. Today, I get one hour more of personal care per day and the average wage is $9 per hour.)
Jake replaced a woman sent by a home health agency who “borrowed” money after each shift, and another woman who scratched her arms and rocked herself to sleep on my sofa one afternoon due to street drug withdrawal.
Boyfriends were also hard to come by back then. Most guys my age were not lining up to go out with a young woman who used a power wheelchair, lived in an apartment complex for the elderly and disabled, and took the city bus everywhere. It took me years to believe that I had something to offer someone in a romantic relationship – that I could be more than just a “good buddy.”
When Jake was sent by the agency to fill my 6-10 p.m. shift, the medication he was on was doing its job. He cleaned my house from top to bottom; he was strong enough to lift and transfer me; he liked my music collection; he laughed at my jokes; and he made me feel like the attractive, smart, and fun person that I didn’t know I was at the time.
I was the one who suggested we go out on a date. I was the one who shrugged my shoulders and passively ignored his explanation of why he had to take so many medications and smoke pot to keep him focused. I was the one who thought we could be good for each other – if he could accept my physical challenges, I could do him a solid and accept his mental health challenges. We’d somehow find a way to balance.
It was the wrong compromise. It’s hard to point to the moment when I realized that things were off balance because the scale was constantly teetering.
One day, he had finally found the right combination of meds, so we went to the park and played with the dog we had just adopted. Another day, the combination was wrong, so he reached across to the passenger seat to slap me when I screamed at him for driving too fast. Another day, I had caught pneumonia and he stayed up all night tending to my fever and cough, and this continued on to the next week by my bedside as I recovered. Another day, he nursed my twisted ankle when I tried to get out of bed myself because he wouldn’t wake up after hours of screaming for his help. This lack of consistency smudged out boundaries that I never really defined.
Unconditional love, a topic I first studied in college, is a dangerous and elevated kind of love. It cannot be put into just anyone’s naive hands to play with. I promised my unconditional love to Jake, and that meant as the year we spent together wore on, I would continue to excuse the excuses and justify that he was equally suffering under my faultless condition.
I recognized the danger I was in, but didn’t know how to break my promise until it almost killed me. It took a near-death experience for me to realize my self-worth as a woman with a disability. It also took the love and support of friends and family to provide the physical and emotional care I needed to be able to escape a terrible situation safely. I was very fortunate and I recognize that many women, including women with disabilities, are not as fortunate as I am.
Nearly twenty years later, I’m now in a healthy relationship with a man who cares for me, but does not do my personal care. Because of Jake, I have never allowed myself to mix business with pleasure again.
I’ve also had to work through a lot of my self-worth and confidence issues in therapy. Jake isn’t physically here anymore, but what happened to me with him definitely left some scars. And finally, I’ve learned that unconditional love should only ever apply to one person – and that’s yourself.
Un/conditional compromises is part of a project to promote expressions of creativity by people with disabilities.
This project was supported by Grant No. 2017-UD-AX-0008 awarded by the Office on Violence Against Women, U.S. Department of Justice. The opinions, findings, conclusions, and recommendations expressed in this publication/program/exhibition are those of the author(s) and do not necessarily reflect the views of the Department of Justice, Office on Violence Against Women.
