Big Boys Don’t Whine
“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.
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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.
About the Author
Comments
Robert Davidson
I just celebrated my 1 year anniversary of being diagnosed with Parkinsons yesterday and your blog today was helpful. I struggle with the things I can't easily get done now, and asking for help isn't easy. Thanks for the book links...
Dr. C
Hi Robert ~ I'm glad that the books links are helpful. I am reading more on chronic disease and its effects on both patients and partners. I appreciate your reading my columns and hope that they provide some encouragement, support and suggestions for how to manage life's challenges. Please continue to check in with BioNews Services to share your thoughts as you explore the possibilities with Parkinson's. Thanks for taking the time to write.
Compassionate blessings,
Dr. C.
MARGARET
Thank You Dr. C. for your honest account of the vicissitudes of emotions and challenges which living with Parkinson's has caused you. I watch my husband cope with the disease but no one really knows what its like except those who have it. I forwarded him the book you mentioned, Dancing with Elephants.
I have never been good at asking for help. I am much more comfortable in the role of helper. (I happen to be in the helping profession.) Lately, due to my husband's inability to do the things he used to do, I have been forced to ask for help, as has he. Neither of us are very comfortable with feeling dependent on others so this has created more stress on our relationship. We've also had to identify what we each need and don't need from each other. I didn't realize that, at times, I've been helping when it's not wanted or staring at him trying to figure out what is going on with him which only makes him uncomfortable.
I think it is hard for his friends to comprehend what he is contending with and how to help. Some people are equipped to help while others are not.
Rather than feel the sadness of what we are going through, I tend to react with anger. Anger always feels more powerful versus powerless. Eventually, I'm able to have a good cry and/or a good talk to accept what is really happening. When I'm willing to let down my guard, these conversations with my husband have brought us closer together.
We are renovating our bathroom so my husband can get into a shower with adequate grab bars and a chair. We had to move out of our apartment temporarily. This required a great deal of effort which I'm still recovering from. When my friend asked if she could help me, I said yes! Before, I would've smiled and said, "thanks, but no thanks". With her help, the move became fun and I felt hope versus despair about the less than ideal place we are now staying in. She brought plants over to make it look nice and helped me clean it and move furniture around to meet our needs. (I would have never thought of these things on my own!) I felt less like a martyr and even got excited about being in a new place and the change in routine. It hasn't been a picnic for instance on a gusty day, the window even fell out and I had to find someone to fix it! The draft from the windows with the air conditioners was terrible. Thanks to a worker at Lowes who told me to buy insulation and duct tape, I was able to rig it up to where we can sleep warmly. I surprised myself! I am so grateful to that kind worker for helping us with many problem solving household issues that neither myself or my husband could figure out.
I always avoided asking for anything. I'm embarrassed to say it, but even when I pay for services, I always felt like I was imposing to some degree! I know I've made my husband feel bad too about asking for things at times. I probably do to him what my mother did to me when I needed something. It helps me to write this and to see that parallel.
It's probably human to want to help in the way that we want to help and not when it is in a way that feels more out of our control and not as convenient.
I'm always so surprised when others do want to help and sometimes, I even think-I'm going to sound a bit idealistic here-that the purpose of our being here on the planet is to help others and experience our dependency on each other, our vulnerability so to speak.
Living with a husband with Parkinson's forced me to ask for help. I'm sure there are many situations ahead which will test me to continue to do so. Often, I feel like I'm imposing or interrupting someone's peace of mind.
I watched a TED TALK once about asking for what you want and I found it very inspiring. The gist of it was that if we don't ask for what we need or want, we never stand a chance of getting it. The worst people can say is no. I hope I can ask for help in other ways in my life so that I can reach those goals that I want to achieve but never dared to because I knew I couldn't figure it out all by myself.
Your article really spoke to me. I always had this idea that I had to know everything. Not knowing was terrifying. Needing others was terrifying. Parkinson's is so confusing. The disease manifests itself so differently in different people. Sometimes, it's not clear whether the symptom is a Parkinson symptom, or the symptom of another medical or mental health problem or a side effect one (or two) of the many medications. Recently, my husband has experienced hypomania and it was affecting our interactions greatly. I hadn't realized what was going on. I thought this was just him being difficult and my reactions were only exacerbating his frustration. I came to recognize what was happening. (Even with a background in the mental health field, I was unable to see what was obvious to my girlfriend who works with psychiatric patients.) With her observation, she identified how his impatient and agitated behavior wasn't intentional. I was able to stand back and connect the dots and see it for what it was. Likewise, a few weeks ago, I finally figured out that it wasn't that he wouldn't do things but that he truly couldn't do them as he had before. He hadn't wanted to admit to himself or to me his limitations. Who could blame him? Who would? Upon this realization, I stopped fighting with him and together, we surrendered to the new norm and began to look for new solutions.
Thanks for your article, your service in Viet Nam, and for helping me to put my experiences in perspective. All the best to you and your partner on this journey.
Dr. C
Hello Margaret ~ All I can say is "wow!". You have given an amazing description of the struggle of Parkinson's disease and keeping a loving relationship going. My partner and I love what you wrote and see your words reflecting in our struggles also. thank you very much for taking the time to write down your thoughts and observations. I'm sure it will be very helpful to many people, including us. I particularly resonate with your description of the confusion of Parkinson's presentations. I am currently writing columns that try to elucidate this very problem. The next column is going to start to address this.
Compassionate blessings -- stay open to the possibilities that you both can live well despite the challenges of the disease.
Dr. C.
zizi
I like such topics.
Dr. C
Hello ~ Thanks for reading the column. I hope it helps share all that we experience.
Dr. C.
Zianezo
Thank you very much.
Dr. C
Hello ~ thanks for reading the column. I am glad that it means something to the readers, including yourself.
Dr. C.
Annette Walden
Dear Dr C
Thank you for the book links. I was diagnosed 11 years ago at the age of 52. I knew what it was, although it tool a little while to receive a diagnosis. It changed our lives but I have been blessed with the unstinting support of a very loving husband who still sees and loves me despite the my ups and downs. I find your column sincere, encouraging and very real.
Faye Shulman
I have Parkinsons my diagnosis was in 2007. I have done very well despite this irritating disease that changes directions just when you think you have it figured out! I do agree with the statement made by another earlier in these comments. It is so very hard to ask for help when you have always been the one to give it to others. I recently lost my husband to a massive stroke. He wasn’t second husband to pass away. He was a wonderful man who was very intuitive to my Parkinsons symptoms. He knew I needed my daily therapy to be able to do all of the things I wanted to do. He would tell me I was dragging my leg when I had no idea. It has been a very hard adjustment loosing him. I am 69 years old and have been struggling with a move to an unfamiliar city in an unfamiliar state. It has been hard but I have decided that it is just an adventure one that 30 years ago I would have welcomed. My oldest Son and daughter in law built a new home with a mother-in-law’s suite. It is my own little “Casita“
The move has caused some difficulties with my PD symptoms but I am determined to continue the fight and stop along the way to ask for help if I need it and enjoy my new life.
Dr. C
Hi Faye ~ Wow! You've been through a lot. I really admire your positive take on where life has led you. Mrs. Dr. C. can really relate to everything you're going through with the move to unfamiliar city in unfamiliar state and the increase in PD symptoms in myself during the move. I can tell you that 6 months into our relocation I am starting to feel that the PD has returned to its previous status. You're right... just when you think you have it figured out!
Thanks for reading the columns and sharing your story.
Dr. C.
Jacqueline
I love getting the book recommendations, and as a result of looking the titles up, I learned that the author of Dancing with Elephants has an excellent website with videos featuring some of the people from whom he's drawn inspiration. Lots to read there at a time when I really need it. My deepest thanks.
Dr. C
Hi Jacqueline ~ I'm glad you are using the references and the links. I like to share with the readers where I am finding the information, or, make recommendations for additional reading. Appreciate your complimentary comment! I will keep sharing good sources.
Dr. C.
michael wall
A book I found particularly helpful: "The Alchemy of Illness" by Kat Duff