Caregiving 101

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A typical day as a student for me was just like any other college kid living on campus. You had the daily battle with the roommate on who would get to shower first, trying to catch the bus in time in order to make it to Starbucks before class, working your butt off in the library before finals, and maybe grabbing lunch with a friend at the local dining hall before you had to go to Work Study or Internship.

The days were long and stretched out, and when that backpack finally hit the floor at night and you snuggle into bed, you came to the realization that your day was accomplished.

Except for me, it often was not.

I met Bill my freshman year of college as part of a community mentor program for people with disabilities, he was assigned to me so I could take him out and do fun things, like bowling and the movies. His Cerebral Palsy and developmental delays were overshadowed by his wisdom and knowledge of disability law and advocacy, as well as his wit and personality. I could get lost in conversation for hours on an array of topics over coffee, sometimes forgetting that the man I'm speaking to can barely function mentally beyond an 8 year old, and depending on his mood, even younger.

Although he lived independently, he had staff that he hired through an agency with a "person centered" approach to assist him with chores and personal care. They were the ones hired to help him, but at the time, they often weren't able to. Sometimes it was due to call outs, or that they were busy helping another client in the building he lived in that needed more support. But there were times he would give them attitude for whatever reason, and they would quit the next day. Bill was feisty and didn’t take no for an answer.

And that's when I would come in. That cell phone would ring and ring and ring, and if I missed out on that. As much as I wanted to sleep, I knew there was a job to be done. A job I was never paid for, with the exception of a cup of coffee and whatever wacky flavored CoffeeMate he had.

There were times I found no food in the fridge, and I would take a trip to the corner store or the Grab and Go dining hall cafe and snag him something to eat. There were times he stunk to high heaven because nobody gave him a shower for a few days. Sometimes, he would have a mental breakdown that involved hallucinations and needed someone to "talk to the Power Rangers" for him.

Often times, those nights of insanity would end in happy moments, watching Spy Kids or some other weird kid’s movie or playing a marathon of Mario Galaxy until 4 in the morning, leaving me three hours to go home, nap, and shower before class.


But not everything was happy.

During my school day, it became apparent I was a walking zombie fueled only by coffee and a will to graduate. I perfected sleeping with my eyes open so as not to be called out in class for zoning. At the same time, my grades dropped and assignments would be put on hold due to lack of time or a quiet place to work, despite the fact that I had become a master of typing term papers, locked in his bathroom as he watched Dr. Phil or Big Brother.

I look back at those years as the best years of my life, and yet sometimes, I wondered what if things were different?

What if I never signed up for that mentorship? Would I have stayed on the Dean's List and graduate with honors? Would I have become an advocate for disability rights in the form of a blogger like I am now? Would I be a CEO of a global company instead of the girl behind a ticket booth in a theme park? Did I go wrong in my young life, or did I do the right thing?

All I know is that for the 4 years I was in school, I gave Bill the best life I could with what little I had. To see him smile as I helped him beat a level in his game, or walk an extra step to earn a star on his exercise chart made it all worthwhile. As I typed away on my laptop working on my homework, hearing him thank the Lord I was there for him when many weren't brought tears to my eyes. To learn to advocate for him helped me learn to advocate for myself and my own disabilities. I also learned to look beyond what others see and embrace others for who they were.

No expensive college degree could ever offer that.

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About the Author ~

Mandy Ree is a legally blind lifestyle blogger who shares her stories as a self-advocate, theme park worker, and overall nerd at Legally Blind Bagged You can also find her at Facebook. on Twitter.

 

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