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Our Idea of Fun Is Sharing Moments Together

fun

“Fun” is an F-word that doesn’t have a strong history in our home. My partner and I are from the “nose to the grindstone, make it happen, pursue the American dream” generation. Oh, and we try to live up to the adage “Become the change you wish to see in the world.” We can be intense.

With all those noble ideals, we find that doing fun things is very difficult. We don’t know how people take fun vacations. We have never been successful at doing that. Sure, we want to have fun times in our retirement years, but through all the chronic illness time commitments, chasing that little F-word requires more tweaks in the wellness map.

To illustrate how we can’t accomplish the standard idea of fun, I share this story about our attempts at a honeymoon. The first one — the one usually planned by newlyweds — never happened because my wallet was stolen at the wedding reception. There’s no traveling without credit cards or identification. Four years later, we tried for a second honeymoon. During an idyllic trip to Maine, my wife developed a tremendous migraine — her first — so we cut the trip short.

Twenty years into our marriage, we tried to combine a job relocation/house-hunting expedition/vacation at my new job site in Reno, Nevada, with a stay at a casino. We had the heart-shaped velvet bed and all expenses were paid by the company, but our minds were on finding a rental unit quickly and coordinating a 1,500-mile relocation with the movers. It was the last time we used other people’s definitions of fun as our own.

Forty years post-nuptials, we were more successful in combining a trip to Arizona for a friend’s wedding with exploring the countryside and downtown Phoenix. There were no demands on our time other than dealing with chronic disease symptoms.

Changing behaviors that are so deeply ingrained in our lives is what tweaking the wellness map is all about, and it is never easy. We give ourselves permission to have fun and yet, at the same time, we must balance our plans with our ability to achieve it.

Once, we could be more spontaneous or at least show up for activities that had been on the calendar for weeks. Now, we tentatively agree to be somewhere, but roll with the day when it arrives. We wake up knowing that each day must be faced as it presents itself. If we just don’t have the energy or physical ability to meet that obligation, we change the date and try to not feel guilty.

It may seem strange to give ourselves permission to have fun, but we do this every day. If we listen only to that inner worker voice, then each day is just about the quest to accomplish something. “One more thing off the list!” my wife says, with as much glee as the Queen of Hearts in “Alice in Wonderland” ordering heads to be chopped off.

But there is a new voice now. We still wake every day asking ourselves (and each other), “What are we going to accomplish today?” But we know we must be flexible. Is this going to be a good day with enough energy to do what is on the schedule? We give ourselves permission to decline or reschedule activities based on how the day unfolds.

The new normal of traveling with a chronic disease requires a separate medication bag, pillows and a cover in the back seat of the car for those off periods, a cane for days when balance and coordination are a problem, a driving schedule that allows a more leisurely pace, and a calendar that tries not to make too many commitments in a week. We try to plan one meal at a restaurant to take a break from the drive, pull over more frequently at rest areas on the interstates, or make hotel accommodations for the night to rest before tackling the next day’s commitment. More tweaking of the wellness map.

Perhaps we really do have fun. It’s just different from how other folks define it. Playtime and time experiencing a lightness of being are both part of fun and adjusting to Parkinson’s, but so is creativity. Fun is gardening, walking our forest path, genealogy, writing, reading, organizing our mineral collection, watching a movie, and just being together to share the journey. We find our fun applying our talents to creative projects and shared moments together, and not letting chronic disease ruin the day.

How do you find fun in your life?

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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.

The post Our Idea of Fun Is Sharing Moments Together appeared first on Parkinson’s News Today.

A Healthy New Identity Helps When Battling a Chronic Disease

Identity

Identity, the “I” in CHRONDI Creed, refers to the process of finding a health-fostering identity in the face of a chronic disease that has stolen things we loved to do and caused the death of self. When everything I loved to do was taken from me, all that was left was the time and energy I was putting into managing the disease.

Dealing with chronic disease consumes a large amount of time, and conversations about me were now connected to the disease, including my own self-talk. Without even knowing how, and thinking I should know better, the disease had filled that void created by the death of self. The disease had become my identity, and I hated it. I had to find a healthy new identity to help when battling a chronic disease.

Trying to “find yourself” is tied to one of those great philosophical questions: “What is the nature of human existence?” I have written about this philosophical quest and I thought I had a handle on things, a strong identity of scientist, teacher, and healer. But when the roles I used to make meaning of my existence were stripped from me, I discovered that my intellectual writings provided a thin tether out of the dark void created by the death of self. The actions in my life, the conversations, did not match my identity roles of scientist, teacher, and healer. I needed to reconstruct these identity roles — trying on new hats, looking for one that helps me build a new healthy identity. I needed this new healthy identity to succeed in my battle with a chronic disease.

Getting one’s actions in life, the roles we take on, to match the true self is not an easy thing to do in the face of chronic disease. It takes a commitment of personal resources, courage, and persistence to create new healthy roles to fill the void left after the death of self. It also helps to have support from peers, friends, and family.

But most importantly, you need a fire in the belly, a passion, a purpose that brings meaning from these action roles you will be creating. Then you need to do something every day that will move you one step closer to that purpose-driven life and a healthy identity matching the true self.

I started working on creating these new roles in 1999 when I left all that was my life (home, career) to pursue a PhD — the second-hardest challenge I have faced in my life. I also retrained myself to use the computer as a way of teaching and for a tool in aiding scientific inquiry. In 2006 I applied those skills to a science research project, which, after 13 years, has yielded new discoveries ready to share with the public.

I is for identity
(Courtesy of Dr. C)

I have also forced myself to become a writer in the humanities by writing as often as time allowed. I forced myself to become a computer-aided graphic artist and taught myself how to design a website. These skills — web design, writing, and graphic arts — helped me to re-establish the multimodal teacher role.

In 2018 I became a column writer for BioNews Services, giving me the opportunity to put the multimodal teacher into action more frequently, hopefully as a role model. Recreating the roles of scientist and teacher, after the death of self, is ongoing for me. Every day is a commitment to these re-created healthy roles as part of building a new identity. It is hard work, but worth it.

The one part of my identity that is still trapped in the void after the death of self is my role of healer. It is a role that is closest to my true nature, my soul. I have received written testimonials from dozens of people who stated that their lives were changed through encounters with this healer role. I miss that contribution to the well-being of individuals and to the collective well-being of society. I am going to try a different hat. It’s a hat with which holding the compassion space for others is expected, and in some ways embraced, so I can bring my experience in doing that and use it — hopefully.

I don’t know what will happen while wearing this new hat. I am just opening the door to new possibilities.

What new hats are you trying? Share your experiences in the comments so others may benefit.

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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.

The post A Healthy New Identity Helps When Battling a Chronic Disease appeared first on Parkinson’s News Today.