Prioritizing Me

At the start of 2015, I read several blog posts written by friends describing how they selected their “One Word.” I have never tried selecting “My One Word” but I thought it might be an opportunity to incorporate more intentionality into my daily routine. After spending several days with a thesaurus and my thoughts, I decided on my word for 2015:


I shared my word with this post, explaining my selection. The definition, “merciful or kind in judging others,” described a trait I wanted for myself. Instead of rushing to the negative, rolling my eyes, or silently huffing an exasperated sigh, I would try to be charitable.

Just before New Year’s Day 2016, I started reading about the words my fellow writers had selected. I was not feeling successful with the word I had selected for 2015, and had not considered repeating the exercise this year.

Did selecting a word actually make me exhibit more charitable behavior? I certainly tried. But all too often, I would roll my eyes, sigh in exasperation and spout off negatively without demonstrating mercy or kindness. Then, I would remember my word and curse at myself for not being charitable. Honestly, participating in My One Word often made me feel like a failure in 2015. Rather than actually demonstrating charitable behavior, I repeatedly realized (too late) how many times I rushed to judgement. I felt it called attention to all the instances when I could have done better, but failed to.

The exercise was not be a complete waste. After all, I may not have recognized my behavior if I had not been focused on the word. Having awareness in the moments when I failed to act charitably did encourage me to take a few moments to seek out positives about other people. For example, when my Personal Assistant ‘J’ consistently displayed difficulty following verbal directions, I began to react with impatience and frustration.

No, I said the cabinet under the toaster, not the cabinet under the microwave.

They go above the dishwasher, not over the stove. I don’t keep things I regularly use over the stove – I can’t reach those cupboards!

Were you listening? It’s in the pantry, not the linen closet. Why would I keep a box of crackers in the linen closet? 

I actually said these things, and other statements like them, many times. True story.

This communication did not help either of us. She was doing her best, but J was unable to follow complex verbal instructions such as “Dry the mug (instruction 1) and put it in the cupboard (instruction 2) over the dishwasher (instruction 3).”

Once I discovered her auditory processing difficulty, I compensated by changing our interactions. I used written lists when I could. I broke complex tasks down into step by step activities and only gave her one verbal cue at a time. It was not easy, but she was a reliable employee – always showing up on time for her shifts, willing to cover for others, kind and considerate – and I felt I could manage to be more charitable and accommodating as her employer. Every time I got frustrated and began to think less than charitable thoughts, I reframed the voice in my head and ran down the list of good qualities she possessed. I knew she needed the job, and even though we didn’t work perfectly together, I thought we were alright. Things weren’t exactly as I wished, but this was what it meant to  be charitable, right? I took deep breaths and attempted to continue to make improvements in our working relationship as the months went by.

This worked until January 13, 2016. At 2:36 PM, (I know the exact time because I looked at the clock as it was happening) I was transferring from my wheelchair to the bedside commode with J’s assistance. Suddenly, my right knee gave out on me and I knew I was not going to be able to remain on my feet. Calmly, I instructed J on how to best assist me. I was too far into the transfer to safely make it back to the wheelchair. The bedside commode was not sturdy enough to stop me if we tried to move onto the commode. The only thing to do was to have J slowly lower me backwards onto the floor. I gave instructions, which J ignored. In fact, she began to argue with me stating that she couldn’t let me go to the floor.

Months of attempting to be charitable flew out the window when she dropped me. As my leg snapped under me and I began to scream in pain, I recognized the cost I paid for my “charity” in allowing her to continue employment with me when I knew inside we were not a good fit.

There are many instances in my life when I can afford to be, and should endeavor to be, more charitable towards others. When it comes to my personal care and my safety, I no longer have room for charity towards those who are helping me. Tasks must be done as I instruct, without question or hesitation. The consequences of my Personal Assistants not following my directions can be dire,  life-changing and life threatening.

Think I’m being dramatic? The last time I had surgery and ended up hospitalized, I almost died. My broken leg has changed everything in my world. I am unable to put any weight on my leg, for at least another three weeks. I cannot drive right now, so I am truly home-bound unless I convince someone to drive me. I now require additional adaptive equipment to safely transfer in and out of bed, to and from my wheelchair, on and off the commode.

I have hired new staff and I am setting the ground rules from the get go. I will not compromise on my safety. I cannot afford to.

Even for the sake of being charitable.

X-ray photo of a knee and femur. The femur is broken and there is a metal plate along the side of the bone with 13 screws.
My new hardware, installed in January 2016. See the fracture?

Redefining Disability Challenge Takes a Sick Day

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. But today I have nothing to share.

For the past five days, I have been home sick with a bad cold which morphed into a sinus and ear infection. I have spent the days being miserable, sitting wrapped in blankets, trying to sleep (which is REALLY difficult when you have congestion and rely on a BiPap).

I am a terrible patient when I am sick. But I took advice from other advocates and did what I had to do to feel better. I’m working on my self-care routines this year and never expected I’d have a reason to practice right away.

The next question in the challenge deals with disability and the media, and requires more attention and energy than I have had this past week. So, I will publish my response next Wednesday.

I am feeling better and might actually leave my house today!