Passion: Motivation to Move through the Bad Stuff and Experience Joy

Recently I attended an annual patient conference and had a conversation which served as a catalyst for a couple of blog posts and this podcast episode. What advice do you give someone experiencing apathy and a lack of motivation? How do you cultivate a passion which can make it easier to move through the challenges of living with a chronic health condition so you can still experience joy?

There are no easy answers.

Featured in this episode are three people I know who have shared their passion with me. Mindy brings her love of dance to our myotonic dystrophy community.

 

Hazel shares her knowledge and experience with service dogs to those with multiple sclerosis as well as other chronic health conditions. And James helps his co-workers and friends experience the Totality — and other celestial happenings.

To learn more about Mihaly Csikszentmihalyi and the flow concept, here’s a TED Talk, and the books I read: Flow: The Psychology of Optimal Experience  and Creativity: Flow and the Psychology of Discovery and Invention.


Passion

At the recent Patient Advocacy Conference I attended, I spoke with a community member. We’ve previously met but I’ve talked more with his family members. He’s always seemed to be rather shy.

He asked me how I motivate myself. I’ve been asked this before. Many people with myotonic dystrophy experience both overwhelming physical fatigue as well as extreme apathy. The first time I attended the annual patient conference I participated in a panel discussion. Afterwards I had someone approach me with utter disbelief that I had the disease. Even though I appeared to be similar in age to her daughter, I appeared to function like a normal person.

The more you learn about the disease, the more you realize the diversity of symptoms and severity. I’m sure there are many additional factors the research community doesn’t take into account, i.e. my self-care routines are like a full-time job.

But getting back to this young man (age is relative and he’s ~20 years my junior) and his question. There are definitely no simple answers and no silver bullet. Some people have more of a cognitive impact from this disease while others have more physical manifestations with muscle weakness. And what about our other genetics? Maybe I have a more inherent motivation quotient than he does?

But I wanted to be helpful and I appreciated he looked to me for advice. I asked him about depression. Having a progressive chronic disease can definitely cause one to be depressed and lack motivation. I asked him what gives him pleasure and he talked about athleticism. I realized, through our brief conversation, that having a passion is integral to feeling motivated. That was what I was able to come up with…I have a passion and everyone I know who is faring well with a difficult situation also has a passion for something. You’ve got to harness that passion to get you through difficulties.

The passion may be to sing opera, sail a boat, climb a mountain, chair dance, write short stories, or empower others to lead healthier lifestyles. So, how do you find your passion?


Patient Advocacy Organization

According to Wikipedia, a patient advocacy organization is, “an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.

I’m an active member of two patient advocacy organizations. One of them had their annual patient conference last week in San Francisco. The conference location changes each year to provide opportunities for families to attend that may not have the resources to fly across the country. It was either the 8th or 9th annual conference and I’ve attended nearly all of them. Each year the conference draws more researchers and pharmaceutical company’s involvement but, thankfully, the heart of the conference remains with the patients.

I really don’t like using the word, patients, because it doesn’t necessary define us. And we’re certainly not sufferers or victims. We have a rare, genetic disease and it nearly always impacts several family members. The annual conference is more like a family gathering.

Over the years I’ve developed friendships with many of my myotonic dystrophy carriers and their families. I can really say I know someone almost in every U.S. state with the disease. It’s fascinating to realize that many of these folks I never would have met had it not been for this disease. Some live in more rural areas of the country. Others live in big cities but lead a very different life from mine. Yet at least once each year we gather together, share knowledge, laugh, eat easy-to-chew food, and maybe clink our glass of wine or beer.

Last weekend I came home from the conference exhausted but today I remembered the wonderful feeling of being surrounded by people who each understood why I walk a certain way, why my energy waxes and wanes, as well as why I carry around small servings of soft food.


Do It for Science: End of Life Decision-Making (# 1)

 

Laboratory technician at work.

If you’d like to plan for the future and bring peace of mind to yourself and loved ones, you can engage in end of life decision-making while you’re still of sound mind and body. In this episode, Katharine Hagerman, PhD, at Stanford University talks about biobanks. If you know nothing about biobanks, give a listen and learn.

Find out more about the Stanford Neuromuscular Biobank and National Disease Research Interchange.


Stories of Healing with Essential Oils

This episode features personal stories about how the use of essential oils has helped with a variety of conditions including depression, anxiety, fibromyalgia, fatigue, post-surgical pain and post cancer treatment.

If you’re interested in deepening your exploration of essential oils, please leave me a note here.

For information about Dr. Kris Gast’s medical practice you can visit her radiation oncology website or Beauty through Health website.

To learn more about Lori Melero’s alternative care practice, visit her website.

 


Skydiving, Triathaloning, and Mountain Climbing!

Joe sky dives, Nancy runs, and Rob climbs

Three stories about people taking on physically and emotionally challenging adventures. Joe Akmakjian, who lives with Spinal Muscle Atrophy (SMA), is the first adult MDA National Ambassador. Joe celebrated his 24th birthday by jumping out of a plane with friends. Nancy, after surgery and treatment for ovarian cancer, trained for an AIDS ride and moved on to compete in triathalons. Rob Besecker decided to celebrate his recovery after a series of cardiac surgeries by climbing Mount Everest.


Glass Half Empty: Complaining, Kvetching, and Ranting

It’s time to mix things up…just for this episode. I explore the fine art of complaining…and I complain a little. No whining though. Conversations with Toni Bernhard, Mike Hamlin, and Laurel Roth Patton included. Enjoy!


New Year Resolutions: “You must do the things you think you cannot do”

What type of resolutions might someone with muscular dystrophy, multiple sclerosis or Parkinson’s disease have for the new year? In this episode you’ll hear from several people living with chronic health conditions. Find out more about the role dance plays in Mindy’s life and swimming in Mike’s life from their participation at recent conference panel sessions.


A Salute to Caregivers

November is National Caregivers Month. This episode includes conversations with three caregivers: Loraine (retired nurse) who takes care of her adult daughter and young grandson, Darcy Leech — author of From My Mother:  Surviving and Thriving in a Family Ravaged by Genetic Disease — whose story chronicles her young brother and mother’s battle with myotonic dystrophy, and Cecilia’s Tips for Caregivers.

 


The D Word: Disability

October is National Disability Awareness Month.

What does it mean to be disabled? A dictionary definition says it’s having a physical or mental condition that limits movements, senses, or activities. Does it coincide with the diagnosis of a chronic health condition? It didn’t for me. And even now I struggle with the term, and you’ll soon hear from a couple of my friends — Cheryl Sherman and Stephen Beard — who have also had difficulties with the term.