Many might not know about Ataxia.  I didn’t until I spoke at an Atlanta chapter support group meeting.  I am amazed by how many serious chronic illnesses there are that go unheard of.  Ataxia is a set of symptoms caused by a dysfunction in the cerebellum.  It causes uncontrolled, uncoordinated movements in gate, arms, eyes, or speech.  There are many different types and effects both young and old. Check out this short video clip recorded by Dana Mauro, the partner of someone who has Ataxia.

I had the honor of participating fully in this event: Speaking to 500 people (it was a blast!), running a support group, training the support group leaders, and leading an adaptive yoga class.  Guess I am a woman of many talents!

At the conference, I saw many in wheelchairs, scooters, using service dogs, canes, and walkers.  I saw smiles, laughter, community, fun, families, support, appreciation, and joy. Both loved ones and those with the illness chose to embrace the weekend keeping the focus on solution, rather than the problem.

This reminded me of a Viktor Frankl quote: “Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one’s attitude in any given set of circumstances, to choose one’s own way.” That is exactly what I noticed at the conference. The choice enjoy the conference and work around their limitations. Their illness did not define them, but was part of who they are.

What also struck me was how vital it is to have community support and simple solutions in daily life.  This was the main reason many took the time and made the effort to be part of the conference. Ongoing community support is something greatly needed throughout the year.

The importance for support and community is not only for those with chronic illness, but for all of us.  We are not meant to travel the path alone.   I tried it for some time and it is much more fun to be part of, rather than apart from.

Take a look at who is in your circle of support.  Are they living in the solution or focusing on the problem?  Notice if you are a part of community or separate.   If you are in need of more support, take one small step to reach out.

This is the reason I am launching a new virtual program.  I finally set a firm launch date (guess I should read the chapter of my book on procrastination!)

You will find the full scoop here about how to cut through the B.S. can learn some downright useful tools. If you are interested in learning more, shoot me an email.  If you already know you need to be part of a group committed to living in the solution, then go right to the details.

Warm regards,

The symphony was accompanied by three wonderful Broadway vocalists.  As I listened and watched the full scope of what was happening, I was mesmerized.  What struck me was how much there was to notice at the same time.  When the vocalists joined in, the experience was exhilarating.

You might be wondering what this has to do with my work in pain, and chronic illness.

Think about how much there is to notice each and every second.  Every moment there is a full symphony of sounds, smells, sensations, thoughts, emotions, and so on.  Often we get caught up in focusing on only one thing, shutting out the rest, and leaving us missing out on most of what is in front of us.  If I had only been focused on the pianist, I would have missed everything else.

This relates to mindfulness – the ability to stay anchored in the present moment, expanding your awareness to all that is happening- without judgment.  For example, at this very moment I am writing this newsletter, aware of fatigue in by body, my dog making noises, the cars passing by, my stomach rumbling, sensation in my hip, my mind wandering to the sunshine outside, my feet on the floor, and my fingers pressing the keyboard.  I am sure there is more to notice, but you get the idea.  If I got into judgment about any one of these, I would be missing most of my experience, because my mind would be somewhere in the future or past.

So, there you have it.  You get to choose your experience.  Do you want the full symphony or only the percussion?  I want the symphony (percussion included.)

It is a constant daily practice of noticing it all, anchoring yourself in the present moment.  Let me be clear, it is noticing it all at the same time, not a game of ping pong – going from one thing to the other.

Spring is a great time of year to begin to cultivate this approach.  Take in the smells, colors, sounds, and sensations. When you are outside, engage your senses and see for yourself how much richer your experience is. Who knows, maybe you will notice an Easter egg hiding somewhere.

Happy Spring!

This is especially true for those dealing with chronic illness, difficult life changing events, or caregiving responsibilities. I would venture to say, everyone has experienced this from time to time.I experienced this recently. This past weekend I visited my mom and new great nephew in NY.  AT 95, my mother watches all of the debates and reads the NY Times daily. She is amazing (and no, I do not have her great genes- I’m adopted!). I spent a lot of time keeping her company as she watched the debates. I also read more of the paper than I am used to.

I noticed that my reactions to small frustrations escalated. The political climate is oozing with negativity and I was above my quotient. I was allowing myself to be “slimed” by negativity- if you watched the movie Ghostbusters, I wanted their de-sliming solution! I needed to find creative ways to cultivate a positive attitude, especially since I was not in the comfort of my home.

The question is:  How do we balance life when there is negativity looming around us? Escaping to a desert island sound compelling, but not practical. I am not advocating avioding or numbing – it is more about learning how to fill up while dealing with negativity. No matter how hard we try, constant negativity will get to us.

The truth is, negativity breads negativity.

Here is what I did:

• I realized I was feeling negative-naming it is a big key
• I took a walk, even in the cold NY weather (yes mom, I wore a hat!)
• I upped my meditation time
• I added more Loving Kindness meditation to my practices and repeated the phrases from time to time during the day
• I ate warm fresh NY bagels and nova lox – yum
• I held my adorable baby great nephew-very effective for a quick joy boost
• I made a phone call to someone I trusted and talked about it.  This kept me out of isolating- it is very important not to isolate
• I read an uplifting book by my favorite author of wholehearted living- Brene Brown
• I laughed and joked- humor goes a long way
• I helped my mother and went grocery shopping
• One big area that helps me on a daily basis is doing or focusing on what I love.

I focused on my upcoming presentations:

• Lupus Health & Wellness Seminar March 5
• The Ataxia Conference in Orlando March 31- April 2.
• Most of all, the launch of my virtual No B.S. Calm Living Book Club 

When the focus is on what makes my heart sing, negativity quickly transforms to joy and gratitude.

Creating my newest program is my way of helping others to live in the solution and I have a blast teaching that.

Remember this – no matter what is happening in your life or the world, bring your focus back to small steps to embrace what fills you up.

I would love to hear what works for you.

After I sent the newsletter, I received this email from my older daughter:How much fun it that?

Subject line: Ellen’s philosophy on being a beginner

If I am going to be a beginner, I am going to be the best damn beginner in the whole class. And I will write a newsletter about how excellent (expert, even) I am at being a beginner!  I think you’re great!

After I stopped laughing, my first reaction was one of elation- my daughter was reading my newsletters!  Then I started thinking about her response.  She had me pegged.  I am still an overachiever even when I am the worst!  I have to face the fact- I am not cured from perfectionism.

I enjoy reading Brene Brown’s work.  The focus of her book Daring Greatly is on vulnerability.  Early in the book she talks about our fear of being ordinary.  She says: “I know that yearning to believe that what I’m doing matters and how easy it is to confuse that with the drive to be extraordinary.  I know how seductive it is to use the celebrity culture yardstick to measure the smallness of our lives.”

We can easily be seduced into measuring ourselves to others and feeling less than.

It is difficult to just be ordinary, part of the pack.  I admit, using my jewelry class as an example is a stretch, but it reminds me of how many of us get caught in the spiral of wanting to be the best or extraordinary at something, and chase after the notion of what or where we should be.  Even if we are really good at what we do, it is easy to find someone who is more successful and it robs us of feeling at ease with ourselves.   I venture to say everyone deals with this. I have dipped into that space over the years and it is no fun.

As for my jewelry class, I guess I knew I could not be the best, so I am mastering being the worst.  Last week I broke 4 blades trying to saw my necklace shape.  I guess having my beginning necklace be a circular shape was a bit overachieving after all!  I do see other beginners in the class making mistakes.   Now I can go and just be oaky- not the best, not the worst (still up for debate!) Just part of the pack.

We all have areas where we excel and areas where we are not strong.  When we accept that we are an ordinary part of the pack, we are able to relate more to others- a part of, rather than apart from.   I will always strive to improve, and for now I want to improve just being Ellen- cute, messy, and fun!

My No B.S. Perspective

I Am the Worst in Class:  How much fun is that?

I took my own advice (yes, I was out of balance) and signed up for a jewelry class.  I had always wanted to try this and finally gave myself permission to commit my precious time to a weekly class.  I signed up for a beginners class (an improvement for this overachiever!)  I am learning how to light a torch, how to solder, make a bezel, sand down metal, cut out designs and more. In the class, there are many who have previously taken this class.

I had to purchase materials and am happy to report that I did not invest in sterling silver (tempting as that was) for my first project, just to take the pressure off.

Our first project was a simple ring, which went well except I jump every time I light the torch, and got tiny cuts from snipping the solder. My first ring turned out well, with a decent soldering job and a bit of hammered texture.  Feel like a kid in art class!   I just finished my third class and must admit I still jump when turning on the torch, but no longer cut myself.  Ahhh, making definite progress.

I bring this up because I remember the last class I signed up for a few years back.  It was a mosaic class with students at mixed levels of experience.  Rather than picking a simple coaster for my first project, I decided that I could handle a Lazy Susan.  That was  not challenging enough – I made spiral designs.  No wonder why I quit!  My overachiever was alive and well, derailing me from enjoying myself.

I remember a conversation with my older daughter.  I was telling her that I wanted to learn to knit scarves and I was going to take a class.  She laughed at me and said; “Mom, you will either quit in a week or open a knitting store!”  She was correct – I quit after one lesson.

I have learned a lot since then.  I am now happy to be the slowest, least knowledgeable in the class.  I am really having fun just being inexperienced me.  After all, aren’t we supposed to have some fun without it being a contest of comparing, competing, and over achieving?

When I allow myself to simply be a beginner, I am able to stay present with what I am doing while enjoying the process.

I also love a challenge and always will, but allowing myself to balance work with play gives me more stamina and willingness to step up to the hard stuff.

Begin to notice when you are comparing yourself with another.  Also, notice when you are comparing yourself to your own high standards. What might happen if you allow yourself to just be where you are?  I would venture to say that your experience will be much richer, less stressful, and enjoyable.

Try it and see for yourself.  Feel free to let me know how it goes.

Warm regards,

After returning home, the holidays came and went and though much of it, I had a bad cold.  My work was at a standstill was the Cancer Support Community closes the last two weeks of December and clients are busy.

I dealt with insurance companies for hours on end (no excitement does not equal frustration!)  Went to a few doctors, I watched mindless TV (love the Price is Right), slept late, waked the dog, meditated, read, saw my daughter, and hung out with Robert (in our new fireside socks) and the dog.

As I write about this, it makes me re-examine excitement.  I relaxed and slowed down.  For a person who loves to feel productive, and be social, it took a lot of unwinding.

I would venture to say many of us thrive on “doing” for many underlying reasons, probably the greatest being society’s value on success and productivity. 

Now that it is mid- January, I am finally writing a newsletter.  I am sleeping a little later and taking more me time, letting go of trying to make something happen.  Every so often my mind kicks in and tells me I am a lazy bones.  It is good I know when my mind is messing with me.  When that happens I acknowledge the feeling and do a few moments of breathing or meditation to reset my thoughts.

So there you have it.  Looking at what I wrote, I would say it is totally awesome just to be me not doing much.  The best part is giving myself permission that it is okay.

Not so easy, but quite exciting!

Warm regards,