The Whats, Whys, and Hows
I firmly believe that to manage or achieve any what, I just need the right why, and then to plan the how.
A couple of amazing whats I accomplished were competing in the 2018 National Veterans Golden Age Games and taking a 3-month Amtrak train trip around America, alone. My most recent what was an even bigger challenge. I needed to accept human help related to changes in my functional abilities.
Accepting personal care help from a human is a pretty big what for me, so it was time to look at my whys. My whys currently range from the big-ticket bucket list items like completing an adaptive triathlon and taking my first ocean cruise, to my most important daily whys of kids, grandkids, and contributing to a better world. The big question now was, how? And of course, since stubbornness and fortitude are the same trait, what if I didn’t?
This choice was initiated when my service dog, Aurora, was injured and needed surgery on both legs. In the meantime, it was limited activity, and the pivotal cog in my daily functioning was gone. I have vertigo, muscle twitches, PTSD, and functional cognitive impairment. Basically, I fall and forget things, and I am a proud, stubborn Veteran. So it was a few too many falls before I realized I needed to pull out my risk assessment toolbox and find a more functional, forward path.
My Risk Assessment Toolbox for the Magical and the Practical
First, I assess. I take out a blank piece of paper and brainstorm. I freely write all the thoughts, feelings, challenges, and projected consequences around the what. My risk assessment toolbox is more frequently used for bucket list items like travel or sports challenges, but it also works for accepting changes in my adaptations for care. At one time, it had been to accept the use of a walker and service dog; this time, it was accepting 10 hours a week of a professional caregiver to reduce my frequent falls.
When I start writing, I put on paper anything that comes up: facts, feelings, and thoughts. No matter how silly, trivial, or surprising, it all goes onto paper. I do not write in straight lines but all over a blank page. For me, this increases the free flow of ideas.
I use blank paper and often multi-color pens, but any writing instrument works. I set a timer for 15 minutes and start writing.
Next, I sort the statements into four lists.
Real Risks — I define this as measurable physical or financial harm to self or others. In this case, an example would be breaking my hip or needing to surrender Aurora because I could not care for her.
Challenges and Cheers — These are the real-world accessibility and function issues. Examples of the challenges in this situation are accepting help in the shower, doing dishes, making the bed, and vacuuming — basically, anything that requires balance or a steady hand — and allowing another person that far into my personal space. Examples of cheers are reminders of what I can do and the hard things I have done, like still dressing myself and accepting my walker. Another type of cheer is listing my personal strengths, such as persistence.
Cheap Seat Commentary — This is a definition I bring from a Brené Brown TED Talk and is filled with all the ableist or defeatist chatter in my head. My hardest ones are my “Army Strong” and “only the best is good enough” thinking, as well the myth-take of “If I accept help, I admit I am helpless, and I am an object worthy of pity.” This is also where a lifetime of “by myself” comes into play.
Solutions — Solutions include my choices and the tools I can use to change my approach and reduce the risks. Choices generally include a new device or tool (like a walker or grab bar), hiring another person to assist, asking my family for more help, or just doing nothing.
The final step in assessment is to divide a paper into three columns. In the first column are all the possible solutions to the identified challenges. In the second column are the costs of that choice, such as my privacy, a broken hip, and always, how to finance it. The third is the benefits of each solution, such as retaining a sense of independence, reducing ER co-pays, and not falling.
Cost/Benefit Analysis Inspires a Cheer Board
At this point, I evaluate the costs and benefits and mentally identify the best option. Once my assessment is complete, it is time to acknowledge my strengths and acquire the assistance I need. As motivation, I make my Cheer board. My Cheer board is a collage of pictures and words and a critical step in fueling my persistence to progress. It is a daily visual reminder to show up for the hard stuff. Art is my best tool to take the final step into acceptance and implementation.
Acceptance is not this zen state where I feel peacefully OK with the change in functionality or circumstance. Acceptance, in this case, was finding the right agency through research and referrals; now, it is making and keeping the appointments even when I don’t want to do so. Acceptance is implementing the best path forward as identified in my costs and benefits sheet, hiring caregivers, then saying "thank you" to the persons who help, and finding gratitude for whatever keeps me finding joy.
Finding Focus, Joy, and Resilience
Each time I play catch with a grandchild, paint with friends, share a beer and a laugh with my sons, or just take that first sip of morning coffee, I find focus and connect the joy of my whys to the hows of my situation.
This is my process for living with a progressive and ability-altering diagnosis. These tools are the key to my resilience. Trust me, this is all simple on paper but sometimes messy and difficult in practice. The grief and frustration each time something changes is real, and I still have days it consumes me.
Then I walk into my bedroom and study my most recent Cheer board and get on with the business of my living out loud.
Do you also struggle with accepting help? We want to hear about your whats, whys, and hows. Share below!