When I look back on my life of nearly 60 years, I am struck by how much of that life has been focused on the care of others around me. The people I’ve cared for are a varied group ranging from the teams that reported to me during my 30+ year career in advertising to the children of my sister my beloved nieces and nephews to my many friend groups over the years. The forms of care are just as varied. For my work teams I was everything from their teacher to their guru when inspiration ran dry in a creative profession to the mediator who navigated inter-team relationships that often got hairy during the course of day-to-day life when varied teams were forced to operate in close quarters. I valued each and every one of my roles as part of my job as executive team leader in a creative profession.
For my sister’s kids my caring role was very different. I got to be the perfect adult guide in their young lives – like a parent but better. I didn’t have to be the disciplinarian or enforcer I got to be an adult who provided guidance but also delivered said guidance wrapped up in the package of the fun aunt. I’ve written about me role as the fun aunt on these pages before, you cand find that post here but the short story is that I got all of the benefits of being a mom, all of the love all, of the joy and many of the happy tears without any of the not so fun parts of parenthood like being the mean adult who had to say, “no” or had to disappoint just as often as deliver happiness.
Now, in my role as full-time sick person I am more often the recipient of care than the provider. This is difficult for me on more levels than I can begin to write about here but I’m going to try to touch on a few. You see, being the caregiver was a lot more fun for me especially because it was never my job per se but my joy. When one is the recipient of care one must learn the importance of things like patience because caregivers aren’t just providers of care but human beings who have lives that impact their jobs and ability to deliver care on demand. Being the recipient of care means sometimes learning to wait when your needs need to be met. Being the recipient of care means sometimes events in the lives of your caregivers lead to trauma in your own life.
I can tell you about a recent situation where I was left at my computer by one of my most trusted caregivers when she accidentally fell asleep. When I sit at my computer, I render myself helpless in my wheelchair because I elevate my feet on a large pillow and remove my compression socks that protect my feet from the swelling and blood pooling which can be both painful and unsightly. This swelling and blood pooling is what results from leaving my legs sitting on my footplates of my wheelchair where I am completely mobile. Disability comes with many choices like this one where you feel kind of damned if you do, damned if you don’t if you want to accomplish things like writing which requires you to commit to giving up your freedom to move around to get the thing you love.
When my beloved caregiver fell asleep whilst I was at my computer desk it highlighted one of the many states of threat I find myself facing as a fundamentally disabled woman.There are many levels of belief associated with these levels of states of threat. Things like, “I can’t stand this,” or, “This will never end.” Some of the most impactful states of threat belief center around a fundamental feeling that I am somehow in danger. I find myself listening to the thoughts that swirl around my brain when in these perceived threat situations things like, “I can’t take care of myself,” and, “I am powerless and helpless.” Feelings like that are extremely unpleasant for any human being to feel but especially for a human being like me who is much more accustomed to being the person doing the caring and not being the person being cared for. I’m working through these feelings with my beloved psychologist, Dr. KB but it will take time to get to a place where I am managing the unwanted feelings and not being controlled by them.
In my logical mind, I know I’m really not in danger what I actually am is out of control and that may be the hardest place of all for a high-functioning wheelchair user like me to find herself. My challenge is not to allow these episodes of perceived danger to damage my relationships in any way when I find myself in one because caregivers are human beings that get burned out and over-tired just like regular over-worked humans do. They deserve our grace in these rare situations not our ire. I’m also, working on seeing my wheelchair as a tool for freedom and not a life hindrance but an asset. This will also be a journey for me on this ever evolving discovery of this disabled life.
Source: bethybrightanddark.com