Four Ways To Find The Inner Peace You Need When MS (And Life) Are Wearing You Down

Welcome back! It's been a while since I published a blog post so I'm thrilled to have you here! Thanks for stopping by.

inner peace

I took the summer off from writing when it became apparent that I needed a break. It was time to focus on my inner peace.

I tell others with MS to listen to their nudges, those internal grumblings trying to push you in the right direction. Nudges are (very) smart guides vying to grab our attention away from the noise and nonsense going on in our heads.

(We all have racing thoughts that play over and over again ad nauseam. They aren't real! Here's a meditation from the wonderful Tara Brach to help us quiet the mind.)

This summer I took my own advice and listened to my nudges.

inner peace

The course of my MS and comorbidities were knocking the wind out of my sails.

The revolving door of doctor appointments and tests, not to mention (but I will) calling and calling and calling medical offices for a response, was driving me crazy.

It became a full-time job.

"When you're caught in a familiar reaction, stop, take a deep breath, feel what you're feeling and ask, "How would a wiser version of me respond at this moment?" ~Cory Muscara

There were a few personal hurdles that were also troubling me. They weighed heavily on my heart. It was time to find emotional balance and mental wellness.

inner peace I returned to therapy.

I love my therapist. She's an excellent listener and an expert psychologist who is worth her weight in gold.

If you feel the need for therapy I highly recommend finding a good psychologist.

Another unsurprising component of my need for time off is the state of our chaotic world. It becomes more unnerving every day and sets me on edge. I know I'm not alone in this!

Now I watch the news in the morning, read The New York Times, and that's it for the day. Otherwise, I have nightmares about the violence and hatred penetrating our society. I stay informed, but self-care is the priority. Stress is an enemy of MS and is unhealthy for everyone.

So summer was a good time for introspection and wellness.

"These mountains that you are carrying, you were only supposed to climb." ~Najwa Zebianinner peace

Ignoring our nudges leads to deeper wounds that become more difficult to repair later on.

So I took my own cues seriously. I carved out time to be still, to recognize my wounds, be patient with them, and be willing to process difficult feelings from the past.  (Here's a good article on 8 tips to heal emotional wounds from PsychCentral.)

It's not easy as you slowly go through the process of trying to heal your wounds. Many unresolved emotions can be tough to deal with. But it's necessary if you want to move forward.

When the mind and body are in disharmony nothing in life makes sense.

inner peaceI decided to journal about my healing plan. This held me accountable to my goals and writing felt cathartic. Here's what I did this summer:

Do you take time to tend to your emotional needs or do you let things slide, thinking they'll magically disappear?

Do yourself a favor. Commit to a plan to slow down, do breathing exercises, and de-stress whenever you need to! 

I can remember stressful events from every decade of my life, and I bet you can too. So, remember these four ways to find the inner peace you deserve:

"A house divided against itself cannot stand." - Abraham Lincoln

(I know I'm stretching the point from this quote but I  don't think Honest Abe wouldn't mind.)

inner peaceI hope you found this blog post helpful. I'd love to hear your thoughts so please leave a comment.

Until next time I wish you peace and good health

When Beauty and the Beast Collide

The BEAST that's lived in my body for more than half of my life started to erupt over the last few years in unsettling and disruptive ways.  The odd thing is that, for the first time in my MS life, I'm experiencing the denial phase that typically begins after a diagnosis.

It's been a wake-up call to come face-to-face with the harsh reality of MS, possible progression, and aging.

Life never follows a straight line.

When I first learned I had MS I hadn't a clue what was in store for me, the unexpected detours and undeniable disappointments that could lie ahead.

When you're young, and there's no internet to provide millions of reasons to worry about your future, you think you're invincible despite a medical condition.

What probably saved me from any mental hiccups was my fertile imagination, and the ability to jump into a daydream whenever I needed an escape.

Real-life problems were something that happened to others. I felt safe and healthy inside my self-created cocoon.

Ah, youth. 

I was fortunate to have two loves I could lean on for support.

One was an obsession with black and white films. Their Hollywood happy endings and bigger-than-life actors provided me with a haven. They'd transport me to places I never wanted to leave.

James Stewart, Cary Grant, and Katharine Hepburn in "The Philadelphia Story"

The second love was immersing myself in nature, spending hours and hours in the natural world of animals and plants.

Growing up in a home surrounded by woods I fell in love with the nighttime sound of crickets, watching the change of seasons, and the perfection of wildlife outside my door.

Nature taught me crucial lessons that still serve me well:

Classic films and the natural world are like old reliable friends who always have your back.

I wish I could bottle them as a panacea for the world's problems.

"If there's a single lesson that life teaches us, it's that wishing doesn't make it so."  ~Lev Grossman, The Magician

Life with MS

As I look back at my younger self, a wide-eyed twenty-something living with a disease, I realize how much I've changed.

Time has taught me the value of setting boundaries, ending toxic relationships, accepting truths, traveling through grief and pain, and struggling with the loneliness that comes with chronic illness.

It's a gut punch being unable to keep up with the rest of the world.

As a teenager, I felt a kinship with Henry David Thoreau after reading "Walden" about simple living in natural surroundings. He wrote his "life in the woods" while living in a cabin he built near Walden Pond in Massachusetts.

I'd kiss Thoreau on the cheek if I could thank him for all he's meant to me.

"Although truth can be found in literature, it can also be found in nature." ~ Henry David Thoreau

Living with MS has never been easy but as I passed my sixtieth birthday, and felt overwhelming personal and physical changes, I saw life through a clearer lens.

Like a butterfly emerging from a cocoon,  my metamorphosis was eye-opening and deeply challenging.

"Life is a succession of lessons which must be lived to be understood." ~Helen Keller

Life with MS

The BEAST of MS can be painful, unpredictable, and disturbing.

As hard as it is I still believe there's a silver lining to any situation if you look for it. What was mine?

The silver lining was realizing it was about time to start preparing for the inevitability of life's ups and downs. I decided to begin by:

Devoting myself to the list below is something that's within my control.

Now that's a silver lining!

(NOTE: I have no affiliation of any kind with the links below. I provide them for your enjoyment and hope you'll take the time to explore them for yourself) :

Inner Timer app
Cory Muscara 
Mindfulness.com app
Tapping
The Tapping Solution app
Chair yoga
Cornell Lab Bird Cam - Talk about a calming experience! Watch LIVE cams from around the world for "a virtual window into the natural world of birds." (We watch these on YouTube)

Here's when BEAUTY and the BEAST collide!

With so much going on in our lives my wonderful husband instinctively knew how to lift my spirits. After 34 years of marriage, we can read each other's hearts.

He took me on a trip to the New York Botanical Gardens and their gorgeous (a/k/a BEAUTY)  orchid show!

It was absolutely ah-may-zing. A completely magical day.

The BEAUTY was in the flowers, and the love, that I felt that day. I will never forget how special it made me feel.

Find something big, small, or anything in between that puts a smile on your face. Whatever it is it's what's right for YOU.

You. Deserve. Something. Special. Today. And. Always.

MS is only a part of who we are. Sprinkle the rest of your life with love and laughter.   

We are in this together. 

Now on with the show! Sit back and drink in these beauties that I posted just for you.


Life with MS

When Life Clouds Your Path to Sunnier Days

I started writing this post about a month ago about exciting news in the MS world. But life (or should I say illness) got in the way.

MS

When physical pain knocks you off your keister everything else takes a back seat. 

The culprit in my little story is SIBO or small intestinal bacterial overgrowth. In basic terms, SIBO occurs when too many bacteria end up in the wrong place, namely the small intestine. SIBO commonly occurs when surgery or disease slows the passage of food and waste products in the digestive tract, creating a breeding ground for bacteria. It can often be the result of structural problems from several diseases.

There's a long list of possible causes that include low stomach acid, dysfunctional immune system (hmm), food poisoning, dysfunction of intestinal nerves, stress, and many others.

I had SIBO a few years ago and both times the pain was barely tolerable. It feels as if something is squeezing your gut while jagged edges stab at you. You want to scream in agony and pray for it to end.

Symptoms can include diarrhea, constipation, bloating, nausea, malnutrition, an uncomfortable feeling of fullness after eating, and unintentional weight loss.

This time I stupidly lived with the pain for months, thinking the cause was slow motility.  I figured it was one more issue I'd have to learn to live with.

But my gastroenterologist diagnosed SIBO, prescribed antibiotics (Xifaxin), and even though I'm on the fence on the benefits of probiotics I purchased some from my pharmacy.

So now I'm back to square one by following the Low FODMAP Diet as part of a comprehensive approach to getting rid of the bad bacteria.

By the way, according to the Cleveland Clinic, up to 80% of people with IBS (irritable bowel syndrome) have SIBO. And according to a study by the Canadian Society of Intestinal Research of the 6,132 individuals tested who have MS 28% of them also had IBS.

I'd say that's significant.

Bowel dysfunction is very common in people living with MS so having IBS was not a shocker, just another unwelcome guest.

Not surprisingly I had to resurrect my 35-year-old cane from the closet. The last two years of pandemic isolation, getting COVID, MS flares, looking for alternate housing, and boatloads of stress have taken their toll on my MS. Balance became an issue. Walking indoors in our small townhouse isn't a problem, but I rely on my cane when I take walks without my loving husband holding my hand.

So there it is, my explanation on why I haven't posted in a while. Now, onto the big news that I'm so thrilled about!!! Here's what I wrote in early February.

Drumroll, please!

MS

By now almost everyone in the multiple sclerosis community has heard of the recent findings that the Epstein-Barr virus (EBV) may be the leading cause of MS! To say this is exciting news is an understatement.

For years we heard of a possible cause and effect relationship between EBV and MS but, like other theories, nothing came of it.

This time it's different. This time the study demonstrates the strongest evidence yet.

The study by Dr. Alberto Ascherio, professor of epidemiology and nutrition at Harvard Chan School who is senior author of the study, suggests that most MS cases could be prevented by stopping EBV, so it follows that targeting EBV could possibly lead to finding ways to cure MS.

The breadth of this study was larger than ever before (which is what you want in any study.) Based on the analysis of serum samples taken biennially by the military of 10 million young adults on active duty, it identified 955 of them were diagnosed with MS while in service.

The risk of MS increased 32 fold after infection with EBV (yet not after infection from other viruses.) That's quite significant.

To read an explanation (in easy-to-understand language) on these findings please click here for Science Daily. To read the findings in full click here for Science, January 13, 2022.

I also suggest listening to Dr. Ascherio, author of the study, as he shares his findings with Dr. Barry Singer, Director of the MS Center for Innovations in Care at Missouri Baptist Medical Center,  on his podcast at MS Living Well. Click here to listen in.

If you're skeptical after hearing about EBV and MS because you were never diagnosed with EBV, think again:

An estimated 90% - 95% of adults catch EBV (also called herpesvirus) which is one of the most common viruses. EBV can cause infectious mononucleosis (mono) and most people won't experience any symptoms.

Did you just have an "aha" moment? I did after hearing about mono since I had it as a child. 

When I heard the news about EBV I was somehow reminded of the opening sequence of Mad Men where a man slowly free falls toward the ground. (I know it's a stretch but I can't explain our thought processes.) Now stay with me here.

The free fall reminds me of the elusive quest to find a cure for our disease. Down, down, down we go.

It begins with a diagnosis and the free fall of learning comes with living with this strange disease.

I think that's a fair (perhaps odd) comparison.

Over the years I've often felt as if I was living in a metaphorical free fall.

How many "cures" did I hear about? How many times was I urged to remove my mercury dental fillings? Or try bee venom therapy? Or use certain supplements?  Or try an expensive, controversial cure that the medical community never accepted but allegedly helped some patients (and splintered some in the MS community)?

Countless.

Let's hope these findings will ultimately lead to a cure. Can you imagine that?

*****************************************************************************

END NOTE: With all the turmoil happening around the world and the lives lost to Covid and other horrific events, I'm deeply grateful for the blessings I have in my life. I want to make that clear.

My story might sound trivial compared to those who've suffered great loss over the last few years. I'm deeply sorry for whatever you're going through.

There will be others who don't understand invisible illness and will hear my story as one long complaint. I hope someday you'll come to understand and believe me, along with thousands of others worldwide who live in the invisible illness community and struggle with pain and illness every day that the naked eye can't see.

We tell our stories to give others hope, empowerment, and inspiration. I hope by breaking myself open in this post I've helped even one person. 

The Lessons We Learned From MS, COVID, and Each Other

Welcome back to An Empowered Spirit! I'm so happy you're here.

After taking a break from blogging for nine months I'm back and it feels wonderful being here with you.

The past two years have been so crazy that we all needed a break of one sort or another, don't you think? Sometimes it feels like we're living in a Robin Cook novel.

cat with big green eyes hiding under a blanket

Wake me when it's over!

One of the lessons we learned from the pandemic is how crucial it is to have a safe place to be nurtured and cared for when the world feels cold and out of control.

After I was diagnosed with MS many years ago, I searched for the best ways to cope with my new reality. It took a while, but I started finding answers to what I needed. When I created An Empowered Spirit, I wanted to share these insights with you on what helped me feel less lonely and afraid. The most important first step was finding the right...

Community.

There's magic and power in finding the right community, where people feel safe to tell their stories and share their feelings. The right community can offer unconditional support and comfort, and when you find that it feels damn good.

multiple sclerosis community

The power of community is the comfort and unconditional support you find with others

This year marks the tenth anniversary of An Empowered Spirit! A lot has changed in the MS landscape since 2011. What hasn't changed is my continued commitment to being a reliable source for you for all things MS!

To celebrate our anniversary we've updated An Empowered Spirit thanks to a generous grant from the HealtheVoices Impact Fund. I'm deeply grateful to HealtheVoices and Janssen for their continued support and generosity.

Multiple Sclerosis Blog Anniversary 2021

When I received the grant it was the nudge I needed. I'd been feeling burnt out from blogging, lost, and wondering what I should do next. HealtheVoices unknowingly pushed me into the "stop overthinking everything and just do it" mode.

So I'm getting off my tush to move in new and different directions for the next ten (+) years.

Like Michael Fox recently said about his journey with Parkinson's, it gets tiring to constantly make lemonade out of lemons. I quite agree. At this point in my life, I see a lot of things about life and MS differently, so I'll be focusing on topics with a fresh perspective. What will they be?

Wait and see!
MS
I'm busy planning new content to serve your needs, in creative. inspiring, and informative ways.

In return, I'd appreciate constructive suggestions or thoughts on what you're interested in hearing about. You can leave a comment below or reach out via the contact page.

What's new on An Empowered Spirit:

The new design of the blog reflects my love of every type of flower. They are beautiful and thrive despite adversity, just like the MS community.

Sixteen peony bushes are part of nature and this blog

My father planted sixteen peony bushes along our driveway. Here they are for your viewing pleasure.

“Like wildflowers, you must allow yourself to grow in all the places people thought you never would.” – E.V. 

Cathy Chester - MS Advocate - New Blog Header

CLICK on the HOME, ABOUT, MS RESOURCES, PRESS, and CONTACT buttons located at the top of the page to find exactly what you need.

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~ Khalil Gibran

Disability and multiple sclerosis accessibility tool

NEW! An accessibility tool is located on the top left corner of every page to make pages more usable for you.

My mission continues to be to empower, inspire, and educate the multiple sclerosis and disability community, and their loved ones.

Now onto a special SURPRISE to start the celebration! Here's my first interview to christen the new blog. Drumroll, please...

After being interviewed twice by MS advocate, actor, voiceover artist, writer, and rapper Damian Washington I turned the tables on him. I chose Damian because he's smart, savvy, and very funny.

As Damian says, if you have to live with an incurable disease you may as well hang out with the cool kids.  He's definitely a cool kid.

Damian soared to the top of the advocacy game at warp speed and recently won TWO awards from WEGO Health: Hilarious Patient Leader and Best in Show: YouTube. Let me know what you think about our conversation.

 

With a party hat on and a grateful heart, thank you for helping us begin the next chapter of An Empowered Spirit in the best way possible: together. I've been enriched and inspired by your company and hope to see you return again and again.

END NOTE: Thanks again to HealtheVoices for your leadership program that supports the work of online health advocates. Your dedication and commitment to us are deeply appreciated.

 

How Science And The Jetsons Are Colliding For Better Health

The latest advances in science and technology provide ways for us to enjoy healthier lives. Let us be grateful for them. In this century alone there are discoveries that will turn healthcare on its ear.  Exciting discoveries that will change people's lives in ways our parents and grandparents never dreamed of.

The first two that come to mind will be real game changers:

In my humble, non-medical opinion I am confident that these efforts will change the lives of millions of people worldwide.

science

I recently had an opportunity to look past today's scientific discoveries and into the not-too-distant future of innovation as I listened to theoretical physicist and futurist Mikio Kaku. Kaku, a professor of Theoretical Physics at the City College of New York, is also the bestselling author of several books including “Physics of the Future” and “The Future of the Mind.”

science

Photo Credit: Michael Paras

A Harvard University and the University of California graduate, Kaku has a laundry list of scientific theories. He's popularized science with countless appearances on radio and television, and through his many articles published on blogs and prestigious science journals.

He reeled me in with his sense of humor and likability, and hooked me with his theory that science will continue to make our lives better, easier and more fun.  

Do you remember Google Glass? The optical head-mount display designed into a pair of glasses that was supposed to be the next greatest invention since the smartphone? I hope you didn't spend $1,500 for a pair because Google was forced to stop making them after legislative action over privacy issues.

Since its demise, Kaku explained, technology has grown and microchips have gotten smaller, both laying the groundwork for some incredible technological advances.

science

Photo Credit: Michael Paras

Consider these Jetson-like conveniences that will be available sooner than you think:

science

You'll never look at your bathroom the same again! Spit! Pee!

This all might sound a little crazy, I know. But if you heard how strongly this brilliant man believes in science and innovation you'd become a believer too. His goal is to make the quality of our lives better, and that gives us new reasons to hold onto hope. 

I’m with him.

--------------------------------------------------------

DISCLOSURE: I received three complimentary tickets to attend the New Jersey Speakers Series at the New Jersey Performing Arts Centers sponsored by Fairleigh Dickinson University. All opinions are, as always, completely my own.

Next season's exciting roster of captivating speakers at the New Jersey Speakers Series are:

 

Feeling Invisible Doesn't Have To Be A Lifelong Battle

Have you ever felt invisible?

You can feel invisible sitting in a room filled with voices that are louder than yours. No one hears you or looks in your direction. Ouch.

When we're younger we feel invisible and left out when we're not invited to a party or the mall with friends. Maybe we're invisible when a boy doesn't see who we are and asks someone else on a date. Double ouch.

Invisible

But there's another way of feeling invisible. It's when you're fighting an invisible illness, one that's naked to the eye but is quietly serving you a double dish of struggles served on a silver platter every morning, noon and night. Silent, unrelenting and chronic.

Addison's Disease • Autoimmune Hepatitis • Bursitis • Cancer • Colitis • Crohn's Disease • COPD • Cystic Fibrosis • Depression • Endometriosis • Epilepsy • Fibromyalgia • Grave's disease • HIV • IBS • Lupus • Migraine • Multiple Chemical Sensitivity • Multiple Sclerosis • Myelofibrosis • Narcolepsy • Obstructive Sleep Apnea • Optic Neuritis • Polymyositis • Pulmonary Hypertension • Rheumatoid Arthritis • Scleroderma • Sickle Cell Anemia 

Two years ago I wrote about never being invisible despite living with an invisible illness. After being published in The Huffington Post it received even more attention all around social media and throughout the Multiple Sclerosis community. It's message was an important one and it also applies to everyone fighting an invisible illness.

WHOA! Network asked me to create a video for the sole purpose of reading my post. The video now sits on the sidebar of my blog. Its message expresses what An Empowered Spirit is all about: ability despite disability, and never being invisible.

My speaking voice is soft and not very forceful. There have been times when my words were not heard above the roar of the crowd. There have been other times when my voice was heard yet painfully ignored.

When I write it allows my words to spread my message for me, sprinkling themselves over others who are fighting their own struggle, or are looking to educate themselves about what living with a chronic illness feels like.

I vow to fight every day of my life, until there's a cure, to live the best life I possibly can. I do it for my son. I do it for my husband. I do it for my parents and for all of my loved ones who are in my corner every single day. I do it for the Multiple Sclerosis community and for the disability community.

And I do it for myself. Because I never, ever want to feel invisible.

Invisible

 

Thanks to Darryle Pollack for permission to use the WHOA! Network video.

 

Five Women Who Keep Me #strongerthanMS

World MS Day is May 27 and The MS International Federation is asking people worldwide to celebrate their thoughts about “breaking down the barriers to access” and sharing what makes them #strongerthanMS.

#strongerthanMS

I’ve thought a lot about this and came up with two conclusions:

I thought it’d be appropriate to celebrate World MS Day by introducing you to five special women in my MS community. They hold a special place in my heart and have helped me stay #strongerthanMS.

(NOTE: It’d be impossible to write about all of the people who have made me #strongerthanMS for the last 28 years. I wish I could thank every single one of them.)

June Halper - I’ve known June since I was first diagnosed. She was my first nurse and taught me not only about MS but also that a diagnosis is only a small part of who I am. There isn’t enough room on my blog to list all of June’s incredible accomplishments. Many years ago I remember her saying, “I won’t rest until they find a cure for MS.” She truly meant it. #strongerthanMS

“World MS Day will take place on May 27, 2015 throughout the world – a bit redundant but true.  Actually, the world of MS occurs every day in the lives of all those affected by MS: those carrying the diagnosis, their family, friends, and social circle. Today MS implies hope, empowerment, and new possibilities due to changes brought about by research into the cause, treatment and future cure of the disease.  The world of MS has expanded for the professional community as we have resources and tools for caring, sharing, education, and wellness.  So here’s a toast to those who came before us who provided us with these tools; and a toast to the future full of possibilities for a cure, full remission, and reversal of the disease.” ~June Halper, APN-C, Chief Executive Officer of Consortium of Multiple Sclerosis Centers, Executive Director or International Organization of Multiple Sclerosis Nurses, MSNICB

Lisa Emrich – I met Lisa (check out her blog Brass and Ivory) on LinkedIn when she recommended me for my first paid writing job. We finally met in person in 2011 and I became enamored with her gentle and caring ways. I have a lot of respect for Lisa and her vision of creating a much-needed directory called Carnival of MS Bloggers, a site that showcases the growing number of MS blogs now available. I am honored to call Lisa my dear friend.

#smarterthanMS

“Barriers are not always physical, financial, or social; sometimes they can be emotional. I am thankful for the love and assistance from family members, and my therapist, for helping me to bring light into the darkest corners of my inner self so that beauty, love, and life can be freely shared." ~Lisa Emrich, Multiple Sclerosis Patient Advocate, iConquerMS.org, HealthCentral.com, MultipleSclerosis.net, RheumatoidArthritis.net

Tresa Miller – I first met the hysterically funny and deeply passionate Tresa when we were peer advocates for a pharmaceutical company. We struck an immediate bond after she called me “Cat” and her “Yankee friend.” I guess if you’re from Indiana my Jersey "accent" seems kind of funny! She’s a force to be reckoned with and has an innate ability to make everyone feel renewed and energized despite MS. She’s truly one special lady.

#strongerthanMS

“The Tri-State Multiple Sclerosis Association in Evansville, Indiana was my go-to resource both at diagnosis and through the 19 years with this disease. They assigned me a mentor at diagnosis and I really don’t think anything has ever been more appreciated. To get the opportunity to speak with someone that was not only in my shoes but also in my head as well was invaluable. She lifted me up, gave me practical advice and hope. Physicians give you clinical advice, but your own advocate gave me the truth. As a result, I live a beautiful life and am reminded as I talk to newly diagnosed patients to count my blessings every day. If I’m walking in a straight line and have my eyesight, I can do anything!” ~Tresa Miller, Owner of Grateful Threads Fabric

Dorothea “Dottie” Pfohl – I met Dottie while working at IOMSN (International Organization of Multiple Sclerosis Nurses). A dedicated nurse, Dottie is a ball of energy with a heart of gold who deeply cares about patient care. Recently retired, I have no doubt Dottie’s golden heart will continue to reach patients in many meaningful and caring ways.

#strongerthanMS

Dottie with her beloved grandchildren

“Thinking about barriers and accessibility my first thought was of nephew Peter Fischer who, despite severe limitations became an architect and started a business and advocacy career around accessibility. I also reflected on the personal and realized that this year I stumbled across the barrier of retirement from my role in the MS Center and what that step would mean. Going forward I sensed a shift from what I do to who I am. The barrier of what I accomplish crossed I can focus less on what I have done or will do to being who I am now. It's not just endless vacation but it is a little victory and like folks who live with MS it is one I claim with pride. Every barrier broached is a finish line.” ~ Dorothea "Dottie" Cassidy Pfohl, RN, BS, MSCN, University of Pennsylvania Department of Neurology (retired)

Christie Germans – Christie is a powerhouse despite having MS. Her energetic spirit is palpable whether I’m reading her posts or speaking to her online. On her award-winning blog, The Lesion Journals, she introduces herself as “a number crunching photographer who loves riding my bike really, really fast!” Christie is the embodiment of joy, laughter and hope, and I look forward to meeting her in person later this month.#strongerthanMS

“There are many people and groups who make a difference in my life with MS that it is impossible to list them all but here are some on my list: Kate Milliken, via the really cool Moodifier, for helping me stay true with my emotions. The initiative iConquerMS for empowering me to fuel MS research with my health data. The Multiplesclerosis.net blog for keeping the MS stories real and honest. This MS Life for creating a compassionate support program. Race to Erase MS for funding millions of dollars for MS research, and even Phil from the Amazing Race who motivates me to ride my bicycle. These are some of my heroes who have helped me grow to become #strongerthanMS. Most of all, though, are my fellow MSers who remind me each day to live everyday as full as possible.”

I want to thank June, Lisa, Tresa, Dottie and Christie for being such strong, vital and empowering women. The positive impact you have on the MS community helps us all feel #strongerthanMS.

About World MS Day (from worldmsday.org): "World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by Multiple Sclerosis. World MS Day is the only global awareness raising campaign for MS. Every year, the MS movement comes together to provide the public with information about MS and to raise awareness on how it affects the lives of more than 2.3 million people around the world."

Upcoming Film: The Female Painter Who Faces Life's Challenges Through Her Art

“That’s the power you possess as an artist. To find and express your own unique message.” ~Ella Leya, The Orphan Sky

I’m always thrilled to learn about new ways that people use their artistic talents to express themselves. Every week I receive emails asking me to promote an upcoming movie, but this email immediately caught my eye. It talked about the full feature documentary by Bluprint Films called PC594 that is based on the life and work of Los Angeles street artist Lydia Emily.

challenges

Emily, an artist, muralist, oil painter and advocate, creates murals as a way of expressing her inner voice about topics she's passionate about. She uses her unique style of painting to tell us her story.

Considered one of the few prolific female street artists in a male dominated field, Emily painted murals for a Gucci charity called Chime For Change and also for The Weinstein Company film Fruitvale Station. She was featured in 2010 in Voice of Art, a powerful documentary series on Pharrell Williams’ YouTube channel iamOTHER.

artist

Her work is shown in galleries and museums worldwide, and her murals are painted in areas all around the country.

Private collectors include Bob Dole and The Winston Churchill Family.

Lydia Emily is certainly a force to be reckoned with. But that force goes far beyond her art. Symptom free from cervical and ovarian cancer since 2010, Ms. Emily was also diagnosed two years ago with Multiple Sclerosis.

According to Wikipedia:

“After multiple hospitalizations, friends and patrons, Scott Hornbacher and Matt Weiner, creators of Mad Men (series), were able to get her into the care of Matt Weiner’s father, Dr. Leslie Weiner, head of the Multiple Sclerosis Department of USC. She is currently under Dr. Weiner’s care.”

artist

Austin Mural

Lydia Emily's inner strength keeps her moving forward to create new works of art despite her diagnoses. She is a true survivor. Surrounded with the love of two young daughters and a community of family and friends, Emily inspires us with her energy, and teaches us by her example that our challenges can make us stronger.

artist

Lydia Emily with her daughters

She creates community wherever she goes, and often hands paintbrushes to people as they walk by her as she paints her large-scale murals.

artist

Emily always used her art to express herself. Now her art helps her work through the challenges she now must face with her new diagnosis.

When speaking at the October 2014 Dallas MS Conference she created a Multiple Sclerosis Wall to provide a place for attendees to express their thoughts about their disease.That endeared her to her audience even more.

artist

Dallas MS Mural Wall

I look forward to seeing PC594 about a woman who has not only pushed boundaries in her work but has also re-created a life of ability despite disability. I applaud the artist, the woman, and the advocacy of Lydia Emily. She continues to shine a bright light for all of us to see.

“PC592 is the California penal code that defines crimes against property – including the bold artwork that covers dilapidated walls in neglected corners of the United States. PC594 is also inked on Lydia Emily’s forearm, as a permanent and unapologetic symbol of the biodegradable, non-violent, political protest she engages in.”

"PC594 has been in production for 24 months and will be completed in September of 2015 in time to submit to the Sundance and Tribeca Film Festivals."

If you’d like to learn more about Lydia Emily and where she'll be appearing (and painting murals) please click here.

If you’d like to contribute to the PC594 Kickstarter campaign to make this dream into a reality you can become a partner by clicking click here.

 

Why I'm Thankful For My Diagnosis

The philosopher John Lennon (or whoever said it first) famously wrote, "Life is what happens when you're busy making other plans." The life we imagine when we're young isn't always the one that we live. Our paths make sudden turns down unexpected byways, leaving us to survive unchartered territory.

March is MS Awareness Month

March is MS Awareness Month, a time to remember over 2.3 million people worldwide who are living with multiple sclerosis, an unpredictable and incurable disease. Strength, love, hope and courage - those are the words to be mindful of this month.

And, of course a cure.

As February drew to a close I couldn't decide what I'd write about to honor this important month-long event. I mean, what else could I write about MS that I haven't covered already? And what positive spin could I put on it, because that's how I choose to look at my life.

Then it dawned on me.

Why I'm thankful for my MS diagnosis

It's easy to GO ORANGE with Max!

Like Clarence the Angel granting George Bailey the ability to see what life would have been like if he'd never been born (you knew I'd think of a classic film reference, didn't you?) I wanted to write about how different my life would have been without my diagnosis.

Why I'm thankful for my MS diagnosis

I look forward to the day when I can finally say, "I used to have MS." That will be the greatest day of all. In the meantime I'll be mindful that despite my diagnosis I'm surrounded by many blessings. And, like George Bailey, I cannot be a failure because I certainly do have friends - near, far, virtual, professional and furry.

I am thankful for my diagnosis because it taught me self-compassion, survival, to remain curious and to always keep hope in my heart.

About MS Awareness Month

National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and affiliated groups to raise the public's awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease, and to assist those with MS in making educated decisions about their healthcare.

To inspire others to create a world free of MS, click here to share your thoughts on The National Multiple Sclerosis Society's website.

Learn more about what MS is and find the latest research from the National Institute of Neurological Disorders and Stroke page called Hope Through Research.

 

 

 

 

How To Create A Brilliant List To Maintain A Brilliant Life

I can't imagine my 56th birthday being more brilliant. Spending an entire day in the company of my husband and son while having their undivided attention -  no Sports Center, stock tickers, political arguments or social media - was something I was more than looking forward to.

In our family the birthday girl or boy chooses how they want to spend their special day. More times than not I've wanted to do something cultural in Manhattan. So I gave my husband a list of plays I wanted to see, and he and my son took care of the rest.

Every Brilliant Thing

We went to the small theatre-in-the-round, the Barrow Street Theatre, to see the creative and interactive one-man show, "Every Brilliant Thing." The play is about a young boy growing up who does his best to distract his suicidal mother by creating a list of joyful things that make life worth living.

This hour-long play stars the charmingly funny Brit Jonny Donohoe who creates a character that is bright, funny and engaging, something that's not easy to do considering the subject at hand. Yet Donohoe handily succeeds.

As an emotionally damaged boy who never stops searching for a happier life, we, the audience, interact with the story according to the lines and roles Donohoe assigns us when we first take our seats. His poignant and honest depiction of how suicide affects a family makes us laugh and cry as we remain ever hopeful that both mother and son will survive intact.

(Not to give too much away, but our favorite brilliant thing on the character's list was, "Christopher Walken's voice....and hair." Ha!)

monarch-18140_1920

Like any dedicated blogger, as I sat and watched the play my mind began to race.  How could I write about brilliant lists for my blog? Then it dawned on me: Wouldn't it be wonderful if everyone would create their own brilliant list? A list that would make them feel happy to write and joyful to read?

Your list will never be finished, because as we age and experience more and more life lessons, we add our positive experiences to our brilliant list. Just like the main character in the play, there are thousands and thousands of reasons why every brilliant thing we love - everything that makes our heart sing or brings a smile to our face - makes a positive difference in our lives.

So on days when you're having some self-doubt or perhaps feeling a little sad, you'll have your brilliant list to comfort you. It will serve as a reminder of the things that matter most -  the simple joys that make life worthwhile.

Here are some things that are on my brilliant list. In the comments below I'd love to read what's on your brilliant list. Remember, there is no right or wrong. It's whatever feels brilliant to you!

What's on your brilliant list?

 

Chef Interrupted: Discovering Life's Second Course In Ireland With Multiple Sclerosis (Book Review)

My mission of spreading awareness about what Multiple Sclerosis is and to live a quality life using the abilities we have is why I was thrilled to receive the following note from Trevis Gleason. Trevis is a man I've never met but have known for many years through his stellar reputation in the MS community as an inspiring writer and advocate.

Multiple Sclerosis
As I read his note I thought about the cadence of its language. I could almost hear Trevis speaking with an American English tongue mixed in with a wee bit of Irish brogue. It was endearing.

Then my next thought was, "Of course I want to give your book a look!" because the life that Trevis chose despite a diagnosis of secondary progressive MS is one that exemplifies what it means to live a quality life despite facing adversity.

Let me go back.Trevis Gleason is a former chef who was trained at The New England Culinary Institute. Settling into a directorial position with the California Culinary Academy and opening several cooking schools for the Academy his life abruptly changed after his misdiagnosed ailments turned into a confirmed diagnosis of MS.

Multiple Sclerosis

 

But Trevis' new book, Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis is not a book about diagnosis or coming to grips with a "new normal." Chef Interrupted is a celebration of life and the indomitability of the human spirit, illustrating that lifelong dreams can still be realized with a bit of gritty determination, some serious planning, a positive attitude and the ability to laugh at yourself.

And, of course, being surrounded by loved ones, including the furry kind.

His book begins five years after diagnosis, being forced from the job he was trained for, and a marriage that crumbled.

He reveals to the reader:

"If I was to enjoy any of the things I'd hoped to be doing in my far advanced years after a career, I would have to start identifying what those dreams were and create a plan to make them happen. Hope, without a plan, is just a dream."

Our journey as a reader begins alongside of Trevis, from Seattle to a rented, rustic "functional" cottage in West Kerry, Ireland where he remained for the winter. Despite obstacles such as sheep-obstructed narrow roadways, an antiquated heating system, and the general difficulties of beginning a new life in a strange place, the hearty soul of Trevis remained intact.

His masterful tales are woven around the many connections he makes with the lively people of Ireland, his devoted companion, Sadie, an adorable puppy he adopts upon arrival, and the beauty of the rugged countryside that surrounds him.

Rising to the many physical challenges he inevitably faces, Trevis skillfully entertains a steady flow of family and friends who come to visit him. His skills as a master chef come in handy while entertaining, and he whets our appetites throughout the book when discussing simple local food and drink.

We are willing learners about the cultural differences Trevis embraces, and we feel the joy he feels as he immerses himself in his newest homeland.

When Trevis described some of the people he met I was often reminded of characters portrayed in a few John Ford movies. Flavorful characters that Barry Fitzgerald or Maureen O'Hara might have played. Colorful, lively and always fascinating.

Trevis weaves magic through his poetic style of storytelling allowing us to, at times, forget that he's living with a debilitating disease, one that catapulted him to visit his family's roots so far away. His story touched my heart, and I know it will touch yours.

This is not a story about disability but one about finding your joy no matter what life has to offer.

If you've ever had a dream you'll want to take a look at Chef Interrupted. It'll keep hope in your heart and help you believe that anything is possible.

Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis will be released on Amazon on March 1, 2015, but is available for pre-order by clicking here today.

NOTE: I received an advance copy of Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis. As always, all opinions expressed are solely my own.

OtHER POSTS YOU MIGHT ENJOY:

How Multiple Sclerosis Patients Can Take An Active Role In Expediting Research

The beginning of a new year is a chance to wipe the slate clean and begin a new journey filled with hope and possibility. I visualize that journey as climbing a majestic mountain that rises high above the ocean. With each passing mile I get closer to accomplishing another goal. When I finally reach the pinnacle I'll feel more alive, mindful of my glorious achievements while enjoying the magnificent view that envelops me.

Multiple Sclerosis

Each step I climb represents my personal goals. And one of those goals is to continue spreading awareness about living with Multiple Sclerosis.

Reaching the top of the mountain would mean that a cure has been discovered, finally putting an end to this horrible disease.

Will I reach the top in my lifetime? I'm not clairvoyant but I always hold hope in my heart.

That is why I take part in NARCOMS (North American Research Committee on Multiple Sclerosis), a bi-annual online patient registry where I answer questions about my life with MS. I feel good knowing that I'm part of a greater good, because my answers ultimately help to facilitate multi-center research about MS.

"NARCOMS, a project of the Consortium of MS Centers, is a patient registry that was founded in 1995 and contains patient-driven information on over 37,000 patients. Information from NARCOMS has enhanced research activities regarding demographics of MS as well as environmental factors involved in disease activity (vitamin D, smoking). "~June Halper, APN-C, CEO of CMSC, Executive Director of IOMSN, MSNICB

Anyone diagnosed with MS can sign up for this free, confidential registry. Like me, the information you provide will supply valuable information that expedites research and improves clinical care and quality of life issues for patients and families affected by MS.

Multiple Sclerosis

Questions such as demographics, disease history, quality of life, functionality, and relapse and symptom progression are a sample of what you'll be asked.

NARCOMS also publishes a quarterly magazine, NARCOMS Now (free to all NARCOMS participants),that features MS news and information about the registry. The Winter 2015 edition focuses on health and wellness and is filled with interesting information. I was fortunate to be interviewed for their Feature Focus story.

Multiple Sclerosis

Check out the NARCOMS website and sign up for their registry. While you're there take a look at the NARCOMS Now page to find the latest MS news and information, and learn about NARCOMS MS apps and photo contests. Click the PLAY tab to give your brain a workout with their word puzzles.

If you want to learn more about the purpose and participation benefits of NARCOMS, here's Dr. Daniel Kantor interviewing Dr. Gary Cutter, Director, NARCOMS Data Coordinating Center.

I hope you'll join me on my journey to the top of the mountain!

OTHER POSTS YOU MIGHT ENJOY:
Skip to content