“Oh, poor me. I have lost so much,” I moan, hanging my head down and shuffling my feet.
My partner looks up from her book. “Did you say something, dear?”
“Just another rough period,” I say with an affect as flat as the tarmac at LaGuardia Airport. It’s a personal choice to continue working on acceptance without the self-pity. Some days are better than others, but I resist the cacophony of emotions of grief, sadness, anger, frustration, and anxiety. Mostly, I don’t believe their narrative.
I don’t want to whine about an inner dialogue that is based on old voices from a dysfunctional family past. I replace the “whine” with “I’m defining.” Not, “I’m OK, you’re OK.” Or, “Go to your happy place and you will be all better.” Or the Pollyanna philosophy of, “Really, I’m doing fine with it all. I really am. Believe me.” Instead, it’s an honest assessment that the glass is half-full and half-empty at the same time. If I am whining, then I am not defining all the possibilities to be found.
Moving to a new house at a new location causes stress. So far, my threshold management practices help about 90 percent of the time. There is no room for whining in my schedule these days. I don’t have enough personal resources to manage my chronic disease and finish all of the tasks needed to prepare for our move. Realizing this did cause some internal dissonance in the form of bemoaning the situation, but mostly it was because I didn’t know how to ask for help. So, I felt trapped — and that can get dark very quickly.
I mentioned that I am at the edge of my wellness map, an explorer surveying the wild frontiers of an unexplored wisdom regarding living well with a chronic disease. I ran out of answers. Stuck again.
Wait! Maybe other people have written about living with a chronic disease. Why have I been so slow to grasp the obvious? Or, as my partner says, “Uh, duh …” To my surprise, I found many books. I dove into one called “Dancing with Elephants” by Jarem Sawatsky.
As the author says, the book is not about frolicking with pachyderms. It is about how we, as individuals and as a community, address the elephant in the room: chronic disease. The author says that most of us don’t know how to offer help or ask for it.
I learned something through all of this. Asking someone for help is most likely to be successful when the request is fully understood, joyfully accepted, and matches the abilities of the person giving the help. It sounds like common sense. However, the answers are not straightforward.
Success is linked to the degree of fit between the one in need, the tasks to be done, and the talents of the other. This degree of fit has several parameters shaping its outcome, something I have spent more than three decades examining. Yet, when it came to the simple task of asking for help, I was stymied.
Maybe it’s like when guys don’t ask for directions and drive around for hours “mansplaining” that they are not lost while their partner fumes in the passenger seat. The problem is the cost of being lost inside my chronic disease has too high a price. I had to ask for help.
The result: My brother’s help was instrumental in getting us ready to move, and my stress level decreased, which reflected to my partner an improved ability to deal with the stress of moving. It was the first time in my life when I could not, due to the chronic disease, complete tasks by myself that were important to the well-being of my partner and me.
The turmoil that swirls around when even considering asking for help is linked to self-image. One of the problems of chronic disease is that it tears at the flesh of self-image. In the beautifully written book “When Breath Becomes Air,” author Paul Kalanithi speaks about the shifting sands of identity when the tsunami of chronic disease keeps knocking you down.
With a PhD in rehabilitation counseling, I know about adaptability, about making accommodations that are adjustments to the physical and cognitive changes of chronic disease. I just wasn’t ready to dive under the tsunami into the deep water of the human psyche to find ways of bolstering my new identity. I’m not a very good swimmer.
So, I’m replacing whining with defining those things most important to a self-identity that has meaning and purpose. This includes asking for help. My partner is smiling at me.
Do you have trouble asking for help? Please share your experience in the comments below.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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