Feature Friday: The untold about caretaking – Alina Agha

It was exactly a year ago where I wandered the halls of the vacant MSU psychology building, looking for flyers of job postings. One flyer in particular caught my eye, it was for working with Maya, a cognitively impaired teen with FAS (fetal alcohol syndrome). The job required me to play with her, feed her, give her meds, assist her with her chores, accompany her in outings and doctor appointments, and get her ready for bed. Easy enough, right? Wrong. Had I known what kind of work I’d be getting involved in I would never in a million years have accepted a job like this. The flyer was deceptive. Maya was deceptive.

The mother of the family was a disabled middle aged single woman who had 3 adopted mentally impaired teens. These teens all fell on the fetal alcohol autism spectrum and were cognitively around the age of 5. The family also had 3 high energy dogs running around. They were all a handful for her to handle on her own and needless to say, she was in desperate need of help. Understanding her situation and feeling empathy, I accepted the job.

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On the surface, Maya was a severely disabled 170 lb 16 year old sweet girl with a lazy eye, partial hearing loss, a sun allergy, and a walker. In fact, she had 17 doctors, each to accommodate her severe issues. She had a therapy chihuahua that comforted her daily when Maya was feeling down or stressed. But her stresses were far more than usual. Maya ALWAYS found a reason to be upset — and I can’t emphasize that enough. Whether it be the temperature of her food, the way the sun hit the window, or even the way I cleaned up her room. And when Maya was upset, she would scream, kick, and in some cases, physically abuse. You’ll be relieved to know that I was never a victim of her beating.

Within the first week of working, I witnessed her bully and beat her sister, Mindy, who was just a year older than her. It was terrifying. And you want to know what she beat her up for? A sippy cup. The sisters were fighting over who owned the sippy cup. Not knowing how to diffuse the argument, I stood back and called their mother for help.  Meanwhile, Maya knocked Mindy off her chair and hit her on the head over and over again with the plastic cup. She left a number of bruises and what was known to be later, a minor concussion. This was just the beginning of the horrid incidents I dealt with.

Nothing stressed me out more than Maya’s suicide “attempts” where she stormed out of the house on her bike racing toward the freeway, leaving me to chase after her in my car while simultaneously calling the cops. In return, Maya would charge toward me with her bike (and in some cases her walker), nearly leaving a dent in my car.

Working that job was getting difficult, almost physically sickening. Little did I know that my daily vomiting right before work was an outcome of the amount of stress the job gave me. I thought I just had some sort of stomach issue, but after consulting multiple doctors, I found out I was so severely stressed and that I developed a few GI disorders.

So why didn’t I quit? I can’t tell you how many times I thought about it. But it wasn’t always stress and tears. I found incentives to work. No, not money, but rather the infinitely valuable life-long skills I’d developed, the ability to cope with stress, handle trauma, parent, and most importantly, build patience.

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The job, when done right, was rewarding. I fostered a strong relationship with the family as well. One in which I was a member that had critical importance. I had a great deal of understanding; the ability to empathize, the ability to distinguish Maya’s illness as the issue, not her. I know that’s a rather conflicting statement, but I think it’s important to realize that Maya didn’t have control over her fate. Being born a victim of fetal alcohol syndrome wasn’t her choice, but circumstance. These were the cards she was dealt, and she was making the best of it.

This girl had been through a lot. She’s been sexually abused by her father, given away by her own foster mother, and cut off from her older siblings. She was helpless and often turned to me for support. There were times where I had to comfort her, but couldn’t advise her. I could never tell her “everything will be okay” because I couldn’t guarantee it. How could I? When family members turn on each other and threaten to kill with a knife in their hand, I also felt threatened. Each minute in that house was a rollercoaster, and you just had to live moment to moment.

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Maya was undeniably attached to me, and oddly enough, I was attached to her too. And that, to me, is the most perplexing part about being a caretaker. I was beyond stressed, even frustrated, but I REALLY loved her. This isn’t the kind of romantic love like you feel for a partner, nor is it the kind of love you feel for a sibling, or your child, or a friend; this sort of attachment is far more complex. A bond that can only be purely defined in terms of a caretaker.

I eventually left the job after 8 months. I felt that I had done my part and it was time to move on. However, I’ll always be grateful for the experiences and numerous lessons that family taught me. Perhaps the most valuable lesson was the getting to know, if not building, my own stamina. I learned a lot about myself in the course of working there. Had I not committed to a job like this, I would’ve never known my limits. I had to push myself outside my comfort zone.

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I wanted to thank you all for listening. You should know I struggle with putting my troubled thoughts and puzzled feelings into words— a much milder form of alexithymia— nonetheless speaking about any experience that aches me is very difficult. However, I think this platform is a privileged opportunity to share with you a disturbing, yet eye opening chapter of my life— working as a caretaker.

I can’t thank Zuni enough for giving me encouragement on writing this piece. Often times I shared with her my experiences but didn’t have the confidence to write it down. If it weren’t for her, I wouldn’t have been able to open up and share my story. – Alina Agha

Alina Agha is a graduate from Michigan State with a B.S. in Neuroscience. She is interested in pursuing a career in medicine. She loves cats, coffee, and chocolate. When she isn’t stressing out about the MCAT, she’s practicing her art to stir creativity. She wrote this post in hopes of helping people gain perspective on the privileges we take for granted, such as our ability to think clearly, breath without an apparatus, walk without a walker, or hear without hearing aids.


If you are interested in writing a Feature Friday post, don’t hesitate to email zuni@thephdream.com or just fill out this form!

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Hi, I'm the founder of The PhDream. I'm a second year doctoral student who wasn't satisfied with just sitting behind a desk and writing papers. While my research may have an indirect impact, I wanted to engage more directly with the community and provide a platform to discuss neglected and sensitive issues. Along with that, I try to stay sane in my program by stress baking, glamming up even when I'm down, and sharing my dad-joke captions on the gram -- if only that creativity could translate into my research... Anyways, I'm always looking for contributors, collaborations, and people to eat my zelicious creations, so don't hesitate to reach out or follow me @ZuniJilani :)

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