Finalist for Best of Show: Podcast

I’m not shy. Well, sometimes I am but if I/we win this WEGO Health Award, there won’t be any shyness. I’ll appreciate a few seconds in the limelight but mostly I’ll look at this award — any award — as a way to reach more people out there. Because I’ve got a message and I don’t want to keep it to myself.

What’s my message?

 

The pithy message is — you can live a life filled with quality and dignity in spite of having a diagnosis. At least that’s how I’m trying to live my life post-diagnosis.

Over the years I’ve explored so many avenues learning about ways to increase my health and vitality. I’ve learned a lot. I’ve gathered a lot of tools and resources. I’ve developed a few practices and some routines worked for awhile until they no longer served me while others did not resonate for me. But I continue to maintain an open heart and mind.

While I feel pretty blessed to live in the San Francisco Bay Area where there are at least two excellent medical schools and many, many talented alternative health care practitioners, I realize not everyone has this access.

My hope is that with each podcast episode you’ll be able to take something away to help you on your health journey — your mental, emotional, and physical health journey. If you find something that sparks your interest, go deeper to explore it. I’ve heard of many people that have learned a new practice by watching YouTube videos.

If you know what you want to learn more about, take a look at the word cloud (tags) on this web page. If you don’t see what you want, let me know. You can send me a message (Leslie at GlassHalfFull dot online) or on the Facebook page.


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.


Looking for an Escape

I have a friend who is clinically depressed. I know little about depression though I realize whatever I went through in my mid-20s was more episodic and temporary and nothing like what my friend experiences. She had a bout of cancer years ago and claims depression is far worse.

Recently when I saw her, on her brief venture away from home, I asked how she spent her days. I often ask “how are you” and I have become aware that this is a somewhat annoying question for her. Her depression has kept her from a part-time job while she tries to find the best medication to regulate her emotions. Actually, I think I first asked her what she was currently reading as I know we both share a love of reading. But she said reading is currently difficult as she has trouble focusing. So, that’s when I asked, “how do you spend the day?”

I think we know each other well enough that she wouldn’t perceive this as a judging kind of question. Because, well, I’m not. I didn’t know what to expect her answer to be.

What she went on to explain was her involvement with an online game. She’s mentioned this before but I may have dismissed it because I know nothing about online games. I’ve never done it beyond the early Facebook trivia quizzes. The type of game my friend participates in involves avatars and levels of complexity and what she stressed as working together as a team or community.

The avatar she’s created is someone very different than how she perceives herself. She’s more outgoing and vivacious in this online world.

I couldn’t hide my fascination and I continue to think about her sharing. Thankfully she’s able to find this endeavor, feel a sense of camaraderie and safety without causing any harm to herself or others. I say this because many of us seek a way to escape our current situation. There are infinite ways to escape but do they help?

I trust that in time her body will acclimate to a new drug regimen and she’ll be able to return to work.


Weather or Not

Is it the Indian Summer or what? The past two days have been scorchers in San Francisco and the East Bay. I watched with utter disbelief as my Facebook feed filled with images of iPhone weather apps displaying 107° – 110° temperatures. Sure, if you live down near Palm Springs or in Arizona this is common. But San Francisco where someone, maybe Mark Twain, said “the coldest winter I ever spent was a summer in San Francisco?”

I’ve had difficulty with warm weather ever since I was a kid. I despised the summers in Florida and rarely went outdoors. Everything was air-conditioned so you could mostly avoid the heat. But here in Northern California very few have air conditioners. But we do. It was the wisest investment I ever made.

Heat debilitates me. It doesn’t matter if it’s humid heat on the East Coast or dry heat out here. My body shuts down. I can’t talk, my breathing becomes quite shallow, and once I got very sick and went to the hospital. That was my bottom. And I do everything now to avoid that downward spiral.

I’ve met very few people with my condition that react this strongly to heat but I know it’s a common symptom for people with multiple sclerosis and others with compromised systems. And we’ve all heard how the elderly are impacted by heat waves.

I put out word — via Facebook — to local friends, and especially those with known health conditions, that our house was open to them if they need to escape the heat. A couple of friends came over today. But online there was discussion amongst other friends about their attempts at rigging a swamp cooler or high-powered fan. One friend let lose about air conditioners’ scourge on the environment. I countered with a comment about meat consumption and its toll on the environment knowing she is a carnivore. No response.

I trust that many of us try to do what we can in life to be good to each other, and the planet, but there will often be people who just don’t understand why we make the choices we do. There’s no real resolution to this blog entry but it did make me think of the many times I’ve heard other people with disabilities speak about family, or friends, who just don’t get their situation — why someone can’t eat gluten, or requires a chair with a high back, or needs to stand up frequently, or cancels a social engagement at the last minute?


How Prepared Are You?

This month of September is designated as National Preparedness Month. It’s the topic of discussion in the most recent podcast episode and, apparently, in this first of a nearly daily blog post. So, how prepared are you?

Being prepared may be more than a checklist of items you should have on hand in the event of a disaster where you may need to leave your home or stay cloistered in your home without any outside assistance. Being prepared may be more of a state of mind…or, perhaps a peace of mind? It involves going through the mental process of what if scenarios.

What if I am unable to be at home and need to sleep elsewhere? This is how I brainstorm for a trip when I am traveling. My preparation always involves making a list several weeks before the designated trip. I originally had a template but things change so quickly that I need to re-brainstorm for each trip. What happens if I’m in pain/discomfort — what do I need? What helps me sleep? Depending on the weather, what do I need to bring?

I invite you to start that brainstorming process. Let me know what you come up with.


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.


For the Love of Reading

As a child I used to read a lot. In elementary school, they’d give awards to kids who read the most books each year, and I was often one of the winners. But by high school, it became much harder to read what I really enjoyed. That’s not to say that I didn’t appreciate Othello, The Jungle, or Babbit, but they weren’t my first choice.

College was filled with required readings, as well. And then came my entry into the working world. Often my leisure time was spent reading to get ahead in my career. I loved school so I often took classes and read the books associated with the syllabus. Learning was integral to who I was, who I continue to be. But I rarely allowed myself the luxury of reading something just for the fun of it.

In the last several years, as I’ve weaned myself away from my career and found some of my other leisure activities difficult to do – creating art, attending events with crowds, or socializing in restaurants – I’ve decided to read more. It makes me feel like a kid again, back when I had oodles of time to read and not worry as much about the time spent. And my reading interests tend to be more varied now than when I was younger.

However, I have discovered obstacles to reading. A lot of print books are too darn heavy and difficult to maneuver. Until I purchased my first Kindle, I avoided reading. Not only were my eyes fatigued, but just holding a book and turning the pages proved to be exhausting. But the Kindle – and I suspect other electronic readers – are a boon for people with weak arms and hands.

If I am in a weakened state I now have the option of listening to an audio book either on my iPod or my computer. I get excited about reading. I like to have a few books in different modes going at once. I’m especially fond of Goodreads.com, where I maintain a list of books I’ve read, am currently reading, and want to read. Plus, it’s a social network, so you can connect with friends and see what they’re reading, as well.

While reading tends to be more of a solitary experience, there can be a social angle as well. Three years ago I started a book club at my house and invited a variety of friends. We meet monthly and there’s a theme. You can read your choice of fiction or non-fiction, as long as you relate the book to the theme. We also have a potluck. It’s a tremendously satisfying social activity I can still partake in.


Re-Boot

Here I am…ready to blog again…nearly six years later. I’ve brought in my old blog posts. I’m organizing this website in a hopefully intuitive way. And this spring the podcasting shall begin. Cheers!