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?


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!


Moving Through Loss & Transition

Like nature, our lives are filled with change. This episode explores how to move through loss and transition. For many of us the loss may be diminished physical strength, our career, or the death of a loved one. Roz Leiser, R.N. and the Executive Director of Life Transitions Network, talks about workshops – based on the pioneering work of Dr. Elisabeth Kübler-Ross – that help people move through loss and transition.

Podcast listeners can qualify for the early-bird discount for the March 2017 workshop. Workshops outside of the San Francisco Bay Area are listed here.


Food = Medicine (1)

This is the first of perhaps several episodes to explore how food = medicine for a variety of people with different chronic health conditions. In this episode I speak with Retired Navy Lieutenant Laura Root and Edibell Stone, LPC & health coach about their respective diets.

Edibell strongly recommends a book that’s inspired her — The Urban Monk: Eastern Wisdom and Modern Hacks to Stop Time and Find Success, Happiness, and Peace — and finds great plant-based recipes on this website.


The Bath

A bath can be healing for sore muscles, a night-time transition to sleep, and a spiritual experience. It’s one of my treatment modalities. My friend, Barbara, shares her thoughts on bathing for her chronic fatigue syndrome and fibromyalgia.

If you’d like to explore some bathing accouterments, check out this book, Spiritual Bathing: Healing Rituals from Around the World. Also, this is my favorite bubble bath.

Here’s more information about my personal Hierarchy of Needs.


Multiple Sclerosis & John Muir’s Great-Grandson

Diagnosed with MS as a teenager, Michael Muir spreads his “fun is therapeutic” philosophy while making the horse ranch experience accessible to everyone.

To learn more about Michael’s organization visit the Access Adventure website.

If you’d like to know more about hippotherapy you can listen to this panel session at the 2014 Myotonic Dystrophy Foundation Conference.


Making connections through support groups

When I was diagnosed with myotonic dystrophy I don’t remember hesitating before making my way to a support group meeting. I didn’t have preconceptions; all I wanted to do was meet others with the condition. The meetings I went to were for anyone with a neuromuscular disease, not just myotonic dystrophy. We met at a hotel in a conference room with long tables covered with starched-white linens. The facilitator dominated the conversation and I’m not sure if I even had a chance to introduce myself.

Ironically this facilitator had been leading the group for 12 or so years and was burnt out. Shortly after my arrival she left the group and I was asked to facilitate. I had no previous training. I worked as a multimedia producer and all I really had to fall back on were a few years of teaching experience. But I did it. There was no handbook, no training, and no encouraging words before I was thrown into the pool of humanity dealing with at the very least a chronic health condition and other times excruciating life-or-death challenges.

Through trial and error I learned how to guide a group of people from various social strata and cultural backgrounds to become a community engaged in learning and sharing. My hardest struggle has been dealing with difficult people. You know who they are – the person who is wed to a negative point of view, or maybe it’s the person that seems to feel they know it all, or the person that just can’t stop talking and dominates the conversation.

But somehow I learned strategies to really facilitate a meeting so there are fewer and fewer roadblocks. I try to keep the flow of the meeting moving toward a positive goal. Certainly there are times when a person may have a special need, but pulling from my ever-growing bag of tools and resources I can take someone offline and re-focus toward the group. Generally we have a topic or guest speaker. My aim is to increase our education by learning from each other as well as guest presenters.

We’ve practiced yoga, tai chi, and even meditation together. Health care professionals have talked with us about occupational, physical, and respiratory therapy. Community organizations have explained how to access service dogs, free telephones, in-home health services, and paratransit vehicles. Other support group participants have shared how they work with a personal trainer, traveled domestically and internationally using a wheelchair, and created makeshift tools to help them do everyday tasks in and around their home. Together we took sailing and kayak adventures through adapted sports programs. Together we memorialized a long-time member by celebrating his life.

That’s what support groups are about. You meet people you might never have met – humbled in their life path by a force nearly greater than them – and together you learn how to navigate the new path together.

It’s hard to imagine where I’d be if I hadn’t been asked to take on this role as a support group facilitator. Perhaps it was initially intended to be a service to others, but I’ve ended up really helping myself.


Identifying as Disabled

Declaring oneself disabled doesn’t have to be all bad. Once you accept having limited abilities and turn your focus on what you can still do – which is often a lot – you might be able to relish having some time removed from the hustle and bustle of a stress-filled work life.

What does “disabled” mean, anyway? According to the US Social Security Administration, a person is considered disabled if they provide medical evidence that their physical and/or mental incapacity precludes them from working a full-time job on a regular basis.

I probably worked past the time I should have. In 2001 I quit a full-time job that was by far more demanding than 40 hours per week, and which involved lots of travel. I was frequently getting sick and although I earned a nice paycheck, the quality of my life suffered. For years after that I did contract jobs.

Some weeks I worked 20 hours. Other weeks, I had to crunch to meet a deadline and ended up working more than I had energy for. It took its toll on me in many ways.

Eventually, I realized to salvage the quality of my life I would have to learn to live on less and applied for disability benefits. It was emotionally draining to come to this awareness and follow through with the bureaucratic hurdles, but I do not regret it. It provides some peace of mind and allows me the opportunity to rest when I need to. When I replenish my reservoir of energy, I’m able to do things that help me remain attached and productive.

Don’t get me wrong, identifying as disabled takes some getting used to.

According to the US Census Bureau, nearly one in five Americans have a disability. That’s twenty percent. We’re in good company! That’s the largest minority group I belong to. But not all disabilities prevent someone from earning a living. I’m fortunate to have found ways to remain engaged, challenge myself creatively and intellectually, and feel as if I am still of service to my community. And when I need to, I take a break – an hour, or sometimes a full day – and disengage and refuel.


Yoga teaches us to listen to our body – A conversation with JoAnn Lyons

Any body can do yoga. With teachers like JoAnn Lyons of the Piedmont Yoga Community making it possible, that is.

In this conversation JoAnn mentions different styles of yoga — Iyengar, Integral, Vedanta, and Sivananda. Check out these links if you want to learn more but this podcast is geared toward anyone with either an advanced or limited understanding of yoga.

For those wanting to know more about yoga for people with disabilities, JoAnn recommends the books Recovery Yoga and Yoga and Multiple Sclerosis.

Here are two books with great illustrations of people doing yoga using chairs: All I need is this Chair Yoga and A Chair for Yoga: A complete guide to Iyengar yoga practice with a chair.

Additional resources include the International Association for Yoga Therapists (this is where I search for yoga instructors in locations outside of the SF Bay Area) and the Accessible Yoga Conference.

Matthew Sanford is an inspirational yoga instructor who shares his personal story of surviving a car accident as a teenager in his book, Waking: A Memoir of Trauma and Transcendence.