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by Jenny Blaser
“I-c-e-d t-e-a l-e-m-o-n-a-d-e u-n-s-w-e-e-t-e-n-e-d” I am whispering each letter to myself as I cradle my iPhone in the crook of my left elbow and poke at the screen with my right pointer finger. I glance up to see what Amanda is doing. She has been with me since last night and we are just waiting for the next person on my care team to show up. At the moment Amanda is doodling on my information board, continuing the running joke by writing “Welcome to Guantanamo Bay: Population 1.5.”
Hospital admissions are challenging for anyone, at any age, but for me they carry their own set of unique challenges. Having Penny is definitely one such challenge because she needs to be taken out, fed, and cared for. Everyone in my life knows that she needs to be with me when I am in the hospital because of all she does for me. While the hospital is obligated to accommodate Penny and keep her with me, they are not required to help me with her care in any way. That is where my friends come in, taking turns coming and doing everything from bringing us a new bag of dog food, to taking her out to potty, to taking her to dog park.
One of the biggest things Penny does for me in the hospital is replace my friends. Prior to getting Penny, I had friends with me in the hospital 24/7. The minute I entered an ER, one friend would begin to coordinate with the others in my life to ensure I was never alone. A schedule would be drawn up and people would take on shifts lasting from a few hours to 12-hour overnight shifts where they would agree to sleep in my hospital room with me on a stretcher.
When I say “friends,” I truly mean friends. None of the people on my care team are paid and they are the same people I will grab sushi with or go sit beside in classes. I am so blessed to have a community of people who care enough about me to sleep in a hospital voluntarily and put up with all of the things that they do. Before Penny, it fell to them to calm me when I was crying on the bathroom floor. Now that Penny took on much of the emotional support work, their duties shifted to bringing me food, helping with laundry, caring for Penny, and hanging out with me during awake hours to make sure I had some social time built into my rather monotonous days.
At the start of this admission, I did have people spending the night. This was my first time being admitted with Penny and we weren’t sure what it would look like and just how much she would help. I was also reliant on them to make sure the nurses learned what they needed to about caring for me. They made sure the nurses knew how independent I was and the ways in which I like things done. I also could not take Penny out at all or do anything to care for her. Now I can scoop her food and take her out for short relief breaks downstairs.
“Who’s coming now?” Amanda is still doodling all over the white board intended for sharing pertinent medical information.
“Alison is up next, but Sarah is coming by too and bringing me Starbucks.” It’s a well-known fact that I have a rather significant Starbucks vice. Sadly, there isn’t one in this hospital, but I’ve been known to sneak across the street to a neighbouring facility where they have one.
“Miss Blaser? How are you doing today?” I look up and see one of the generic Residents from my team saunter in with a clipboard tucked under his arm. “Shelly mentioned you wanted to know what the plan is from here?”
“Yes.” I am short and it is with intention.
“Well, we are just waiting for a rehab bed. I know you see Molly and Sasha regularly and they are keeping you up to date. They fill us in on everything in rounds.” He crosses his arms and shifts his weight from foot to foot while staring down at me. “We still aren’t going to start you on any new medications and my understanding is that the new pain medication is working well. You hang in there and hopefully we will hear from rehab soon!”
With that he turns and leaves the room. I look over at Amanda who just witnessed this blatant dismissal and we are both silent. There is nothing to say anymore. We glance at the “Guantanamo Bay” board and giggle.
Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/