April is Parkinson’s Awareness Month. Maybe there were special awareness months in previous years, but this year has eclipsed them all with dire intensity that erases memory.
It’s been one heck of a year. Mrs. Dr. C and I have managed by functioning harmoniously (most of the time) to help each other.
So, what do I say to someone if they ask me, “What can I do to help?”
Sharing what I call a “support partnership” is about sharing the moment while simultaneously understanding shared meaning. The task at that moment can be anything. This existential knowing means that the partners in this support partnership share an awareness and understanding of the nature of existence within that given moment. The two view the mutually agreed upon support tasks as necessary so that needs are met.
Many problems can happen when partners are not in agreement about the support that is needed.
Mrs. Dr. C and I still run into this problem from time to time. She is very attuned to what I need daily: maintaining the house, running errands, staying in contact with friends and family, and being the frontline person when it comes to communicating about projects, for example.
She says I see the “big picture” and not the details. Most of the time, I can communicate what I need. Most of the time, she understands it.
However, there are times when we both need some empathy and support because Parkinson’s disease and the loss of vision have created some daunting barriers. Mrs. Dr. C says that people outside the realm of Parkinson’s — family and friends, for example — don’t understand what it is like to live with the disease every day, all the time. I agree that “life just seems to get between relationships.” Our support relationship makes riding the tidal wave of difficulties easier.
Mrs. Dr. C says, “I try to present a positive attitude to friends, family, and the public. It’s been years of learning about a smooth functioning support relationship. No one handed us a manual on the day of the PD diagnosis. It felt like we were thrown overboard, left clinging to fragments of driftwood.”
One of the chapters in the book I’m writing addresses the support partnership. Support, when it works well, is a partnership. I wish that when I was younger I understood this as clearly as I do now. I made lots of relationship mistakes along the way, which are some of the biggest demons hiding in my closet. Replacing these demons is a support partnership that has a mutual quality to it. This mutual quality is composed of empathy and understanding and a true commitment to help both the PD patient and their caregiver. For me, this is my answer to the question, “How can I help?”
Empathy is often thought of as our feminine sensitivity to the suffering of another. I see empathy as the human ability to resonate with the emotional state of another at the given moment. It is this shared emotional state that becomes an important part of the support partnership.
We have found it to be a “take turns” process. We can’t both be in emotional distress at the same time. One person must step back and practice genuinely sensitive and active listening skills. This is a mutually agreed upon process, albeit subconscious sometimes, which improves the benefits of the support partnership.
Inside the support partnership there is more than Parkinson’s disease. My brain is always pondering the condition of mankind. It’s the way my mind has always worked. I call it “project immersion,” and it was my work and academic style to creative problem-solving. It is difficult to articulate.
My research explored descriptions of sacred healing experiences offered by people who experience them. These people said they had difficulty sharing the experience, even with loved ones. When that experience falls outside the boundary of normal perception, it is nearly impossible to accurately convey the intensity of the event.
Even with my skills as a wordsmith, it is quite difficult. But I enjoy the process of sharing.
An answer to the question “How can I help?” is to offer empathy.
Empathy, understanding, and existential knowing make for a high-quality support partnership. It takes hard work and many years to become skilled at offering the support partnership. Unfortunately, our society has decided that the culturally rewarded accomplishments of one member of this partnership should be given greater value than the other.
During this month of Parkinson’s awareness, I suggest that everyone who has PD take a moment to thank those around them who help make their lives as full of joy as possible and who help one accomplish the big picture goals with everyday tasks that provide grounding.
The support partnership, when it functions well, is a thing of grace and beauty — more sacredly precious than Frodo’s ring.
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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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