MS Awareness Month: Creating an Inclusive and Compassionate Society

As an advocate, I speak to people in the MS community every day. We chat about our disease and what it's like living with it. One wish I often hear is for the able-bodied community to better understand what it's like to live with MS.

In honor of Multiple Sclerosis Awareness Month, I'll shed a little light on what it's like to walk in our shoes.

I don’t know about you, but I think of my life in terms of chapters, except my chapters aren't arranged in numerical order. Instead, they're divided into two categories, before and after diagnosis.

Before my MS diagnosis, I could ride a bicycle for miles and miles. In the summer I'd play softball, basketball, or kick-the-can from morning until sundown. When my husband, a devoted tennis player, and I were dating he'd give me tennis lessons. Of course, he beat the pants off me, but we always had fun.

Looking back I didn't realize what magical days those were.

It’s been a long time since I could run, ride a bike, or walk endlessly. I miss those bygone days.

2014. I always felt so free on my bike.

No matter what "type" of MS you live with life is constantly a challenge. After losing any ability, such as walking, your days can be frustrating, maddening, and completely heartbreaking.

In time, some people can learn to live with their new normal while others can't. It's a tricky road we travel.

Over the years I've made a conscious effort to hold Jon Kabat-Zinn's quote close to my heart:

"There's always more right with you than wrong."

It sounds trite but it works for me to keep that beautiful sentiment in mind.

Zinn's wisdom gives me hope for better days ahead.

The way I figure it, no one escapes this life without facing some sort of adversity. MS was simply the hand I was dealt.

There are better days than others but when they're tough I've learned to meditate and focus on what I still can do.

I can work. I can speak. I can walk. I can swim. I can drive. I can stand. I can talk. I can laugh. I can dress. I can write. I can think.

And I can feel grateful for all of these blessings.

I want you to know that whenever you see me you're seeing the best possible version of me. I rest when my body tells me to, which is quite often, and I can safely say that most people in the MS community do the same.

Some of us choose to take medications specifically designed for our MS (called disease-modifying therapies) to hopefully put the kibosh on disease progression. Some work for us, and some don't.

We're called the "snowflake disease" because no two people have MS alike, and none of us react to medications in the same way.

We can feel okay one day (or days) and lousy the next day (or days). It's a very fickle disease!

Symptoms of MS can include pain, bladder, bowel and cognitive dysfunction, vertigo, weakness, numbness, optic neuritis, insomnia, dizziness, spasticity, fatigue, depression, and anxiety.

And the comorbidities that often accompany our MS diagnosis, such as various autoimmune diseases, gastrointestinal diseases, vascular and cerebrovascular diseases, chronic lung disease, and vision problems.

Instead of seeing us as an extension of our disease, I hope you'll look at us for who we are. We are made of beautiful hearts, souls, and minds.

We're so much more than what meets the eye.

A bunch of MS advocates hanging out and having fun together! I love our community.

Thanks for listening and for taking positive steps toward creating a kinder, more inclusive, and compassionate world for everyone.

NOTE: Click MS RESOURCES at the top of this page to learn more about MS. Thank YOU

Why You Should Never Make Snap Judgements

Do you judge a book by its cover? Try this and see. Let's say you're perusing the aisles of a bookstore and you come across two original book covers, without titles, that pique your interest. One illustrates the branches of an old brown tree with its leaves spread wide in a light shade of green. The other cover is a blood-red horse on a children's carousel looking angry and violent yet somehow beautiful.

Now, imagine if you walked down those same aisles but this time the same books were wrapped in plain brown paper. The titles appear without any illustration. You'd be forced to make your purchase based on the title alone. Does it intrigue you? Will the story hold your interest? Will it frighten you? Will you learn something new? Will you be spiritually, emotionally or creatively fulfilled? Will you miss the characters after you finish the book?

Will you be able to make a choice?

You'd have to take a leap of faith instead of making an informed decision.

I loved this idea from a bookstore in Australia

If you haven't guessed by now my book cover descriptions were based on the original illustrations for "To Kill a Mockingbird" and "The Catcher in the Rye." Would you have purchased them as described?

I have to be honest with myself that I would have purchased the first book but not the second. That means I would have missed out on reading THE greatest classic ever written about teenage angst and alienation. That would have been a shame.

We all judge books by their covers despite our best intentions to the contrary. We make snap judgments based on little fact.

We do the same with people.

Science backs up my hypothesis. In an article in TIME magazine titled "Our Brains Immediately Judge People" Alexandra Sifferlin states:

"Even if we cannot consciously see a person’s face, our brain is able to make a snap decision about how trustworthy they are."

As much as we hate to admit it we all judge people. We like to think we don't but we do. We immediately size each other up, looking for cues that will, subconsciously, predict how someone's character will be.

Which cashier at a checkout counter will you choose? Which player will you pick for your team? Which sales clerk will best answer your questions?

Are your presumptions based on bias and assumptions or a gut feeling?

It's a good thing I don't always make judgements as badly as I did with the original cover of J.D. Salinger's book. I can't imagine how many wonderful opportunities I would have missed in my life and how different my path would have been.

"Whether we think it’s right or not, even our forewarning mothers can’t help but judge books by their covers. So as we stroll along through the library of life, looking at all the faces on the shelves and in the stacks, it’s important to be aware of where our habits of thought may lead us: to accuracy or to error."~Nicolas Rule, Snap Judgement Science: Intuitive Decisions About Other People

Approving or disapproving of someone based on a quick observation or past experience is not always in our best interest. We need to pause and consider how and why we feel the way we do before making a final judgement.

Our negative snap judgements impacts others. Is that fair? Think what a difference it'd make if, instead of negative thinking, we chose kindness instead.

The world would be a better place.

People aren't wrong because they disagree with you. They simply see the world through a different lens; their experiences and circumstances are different than yours.

"Cultivate an attitude of curiosity to better understand why others look and behave in ways other than what you prefer." ~Judith Johnson, Author/Speaker/Life Coach/Interfaith Minister, "Why You Should Break the Habit of Snap Judgements", The Huffington Post

We need to be more curious and learn more about one another. We need more tolerance, compassion and understanding in the world.

And it should begin with me and you.

Ask yourself how that homeless man became homeless, or why that woman's opinion is different than yours. How did that couple become financially ruined or why are those children wearing tattered-looking clothes?

Everyone has a story. What's theirs? The story doesn't have to be closely aligned with our own to be okay. The world would be a boring place if we were all the same.

Next time you make a snap judgement about someone, pause and listen to your inner chatter. Consider why someone might be the way they are. Look at it from all sides. Walk around in their shoes for a bit. Be thoughtful and kind in your judgement. Open your own lens to see what might be inside theirs. You may be in for a sweet surprise.

Because a book should not be judged by its cover.

Why A Friendship Is Unique When There's No Need To Explain

When our friendships are authentic they add countless benefits to our lives. True friends encourage and support us. They challenge us to do and be our best. They motivate and cheer us on during good days and bad. They understand our frailties. They listen with open, non-judgmental hearts and add great joy to our lives. There is mutual trust between good friends.

"The most memorable people in life will be friends
who loved you when you weren't very lovable."

In .49 seconds Google revealed there are 287,000,000 results for the word "friendship" and in .51 seconds I learned there were 5,250,000 results for the term "finding your tribe."

Despite those incredible numbers I've added several of my own posts about friendships and tribes. Why? Because as we get older friendships play a pivotal role in our lives. Something we once took for granted in childhood (wasn't it easy to make friends in the classroom, on the playground or around the neighborhood?) takes on a whole new meaning in midlife.

"A friend is someone who knows the song in your heart
and can sing it back to you when you have forgotten the words."~Donna Roberts

This weekend I had the good fortune to get together with a group of women I've known for several years. Our common bond is that we've all been diagnosed with Multiple Sclerosis. I feel at ease with these incredible ladies, and not only because we live with MS but also because we support and encourage one another unconditionally.

There's no need for explanations, no repercussions for being forgetful, and no fear of seeming aloof because of overwhelming fatigue.

We know what the other person is going through, and although MS has not manifested itself identically in any of us, we still understand.

There's something unique and special about that.

There's a wonderful article in The Atlantic titled "How Friendships Change in Adulthood" by Julie Beck in which the author details how friendships are tenuous over the course of a lifetime. Partners, children and parents are all relationships that fare better than friendships because we must tend to them. Friends are what we choose for ourselves, and while the best ones provide us with happiness they are often neglected because of the busyness of life.

Beck said that, according to William Rawlins, the Stocker Professor of Interpersonal Communication at Ohio University, people of all ages are generally looking for a friend who is:

“Somebody to talk to, someone to depend on, and someone to enjoy. These expectations remain the same, but the circumstances under which they’re accomplished change.”

The article sums it up by saying, "Friendship is a relationship with no strings attached except the ones you choose to tie, one that’s just about being there, as best as you can."

What we value most in friendship is different for everyone. As we age and begin to live with physical and emotional ailments our definition of friendship begins to change. That's when we need to open the door to our hearts a little bit more. Not every scar is visible to the naked eye.

“To have a friend and be a friend is
what makes life worthwhile.” ~Unknown

Holocaust Remembrance Day: Let Us Remember And Say A Prayer For Peace

Tonight and tomorrow is Yom Hashoah, or Holocaust Remembrance Day, which serves as a memorial to the six million Jews who perished in the Holocaust between 1933 - 1945. There will be readings of the names of victims in locations all over the world.

"If we wish to live and to bequeath life to our offspring, if we believe that we are to pave the way to the future, then we must first of all not forget." ~Professor Ben Zion Dinur, Yad Vashem, 1956

The year was 1978 and I was a sophomore in college, sitting cross-legged on my bed, alone in my dorm room watching television. I was lost, unaware of my surroundings except for the gripping drama that was unfolding before me.

It was the last of a four-part series starring Meryl Streep, James Woods, John Houseman and Michael Moriarty. Holocaust told the fictional story of a German Jewish family being ripped apart by the Nazi regime.

I felt like my heart was palpitating out of my chest and my hands were sweaty.

I grew up learning about the Holocaust through family stories and what our Hebrew School teachers taught us. In high school one history teacher showed the film Night and Fog, a brutal documentary about the history and liberation of concentration camps. It included film footage of piles of discarded bodies being tossed into mass graves after being murdered in Nazi crematoriums.

I saw the film in Hebrew School and uncharacteristically spoke up to beg my teacher to excuse me from class. He flatly refused. I stormed out of the room thinking, "Let him fail me for the day. I don't care. I don't want to start having those nightmares again."

After the fourth part of Holocaust ended I quickly ran down the hall to use our dorm's hallway telephone. There was one person I knew that I desperately needed to talk to.

My father. He was the man I trusted and respected more than anyone else, and was the one person who I knew could offer me reassurances that what I just watched on TV would never happen again.

Today as a parent I think back on that moment from my dad's point of view. I realize how naive I was, and that what I was about to ask him would be the most difficult question I ever asked. I wanted him to reassure his little girl, the one who lived in a Utopian universe, that everything would be alright.

I remember hearing a long pause in my father's voice after he excitedly answered the phone. In his analytical mind he must have raced to find the right words to say. There were none. I wanted a guarantee that he simply could not give to me.

Thinking back I realize I grew up a lot that day. The world was no longer filled with the promise of a happily ever after for everyone. I grew up hearing over and over again "Never Again" but somehow seeing this series finally connected all the dots. From that day forward I became more aware about the realities of war, maniacal dictators, and the truth that "man's inhumanity to man" is still going on somewhere in the world.

When I was 14 I spent the summer in Israel and our group visited Yad Vashem, the Holocaust History Museum in Jerusalem. It was the first and only time that my group was quiet for the remainder of the day. If you plan on traveling to Israel I recommend that you make Yad Vashem part of your journey.

I am not a religious person but a spiritual one, and I continue to believe in tolerance, compassion and kindness. In today's world that may seem naive, but so be it. So as I say private prayers for the memory of those who perished in the Holocaust I will continue to also hope that all wars, all genocides, will someday come to an end so that future generations will, as it says in Isaiah, never "learn war any more."

"Nation shall not lift up sword against nation, neither shall they learn war any more." ~Isaiah 2:3-4

#1000Speak: My True Stories Of Compassion And How 1,000 Bloggers Will Change The World

Today is United Nations World Day of Social Justice, and over one thousand bloggers worldwide will join their voices to speak through their blogs about compassion. I am one of them. Let's flood the blogosphere with compassion, kindness, non-judgement and good! Please use hashtag #1000Speak to help spread the word.

My Three Stories of Compassion

The kittens and their mother were barely surviving after being left to fend for themselves on a tiny piece of cold concrete used for a "U-turn" sign on a busy highway. The dedicated rescuer cautiously approached them despite the speeding cars rushing by. She scooped them up into her loving arms, and brought them to the local shelter where eventually they were adopted.

Compassion.

The young boy was taunted relentlessly at school. The crowd of bullies never understood that what is seen with the eye is never the sum total of who a person is. Running wildly to escape the anger of the gathering mob, he could not depend on his nearsightedness to avoid the stop sign he collided with. The crowd gasped in horror, and a brave girl stepped forward to help him to his feet and walk him home. Her understanding heart taught him that not everyone is ignorant.

Compassion.

The young nurse was witness to heartbreaking stories of patients being turned away because they were unable to pay for the care they needed. She saw the look of desperation in their eyes and when it became too much she silently said to herself that enough was enough. She opened a new center, one where patients could seek treatment from qualified doctors, nurses and therapists despite their ability to pay. She changed the climate of care centers where every patient matters, and each one is treated with the dignity and respect they deserve.

Compassion.

These true stories are about people I respect and admire who not only possess compassion but use it to make a difference in the world.

In a world where violence and intolerance are on the rise, where bigotry, partisanship and anger are front page news, we need compassion now more than ever.

Compassion is defined as "sympathetic pity and concern for the sufferings or misfortunes of others" but it's so much more. It's putting yourself in someone else's shoes before passing judgement. It's putting someone else's needs ahead of your own. It's taking action to make someone else's life easier, safer or better.

I believe the world would be a better place if we all realized how interconnected we all really are. In a recent issue of Philosophy Now, Professor Michael Allen Fox wrote:

"Compassion hinges on the realization that we’re all in the same boat. We all share a common existential situation to the extent that humans (and nonhumans) are vulnerable and, at a very basic level, quest after security and an environment in which to flourish biologically and to pursue some form of fulfillment. We are therefore as much in need of compassionate treatment from others as they are from us."

It's time to join the movement!! One where kindness is the only answer. Being non-judgmental is the only behavior. And compassion is the rule.

NOTE: Many thanks to the compassionate bloggers Yvonne Spence and Lizzi Rogers who gave birth to #1000Speak. It is their vision to turn the blogosphere on its ear by jamming social media with GOOD.