Change Is Never Easy. Neither Is Saying Goodbye

I never liked change. My first taste of it was when I was five years old and my grandmother passed away. I was at a birthday party and my mother showed up early to bring me home. She wanted the family to be together. I was confused about what was happening, and sad that I'd never see my grandmother again. I hate to admit it but I wanted to stay and finish my piece of birthday cake.

Growing up I suffered through all the typical life changes. Every time they happened I felt an odd sensation tugging at my heart. I longed for things to stay the same. But of course as we mature we realize change is inevitable. It's a part of life and we have to lean into it.

And let go.

"It's the Circle of Life and it moves us all through despair and hope. Through faith and love. Till we find our place on the path unwinding In the Circle. The Circle of LIfe." ~The Circle of Life, The Lion King, music and lyrics by Elton John and Tim Rice

I have a pile of work waiting for me on my desk. My heart simply isn't ready to tackle it. It'll have to wait. Change happened again this week and I can't wrap my mind and heart around it.

Whenever we lose someone we love it's never easy to process. We don't want to let go and say a final goodbye. We don't want to take that next step of being a part of a world that's no longer brightened by their presence.

But by not doing so we dim the very presence they indelibly left on our hearts.

We lost my beloved father-in-law this week and I know if he was here he'd tell me that life is delicious, people are fascinating and to always cherish family and friends. He wouldn't want me to mourn him but to celebrate his life. That's his legacy, to live life to the fullest. That's what he did, and that's what I choose to do.

I choose to celebrate his life.

To the man who lived and breathed jazz and jazz musicians, loved the warmth and beauty of The Sunshine State and qvelled equally over honeybell oranges and Costco hotdogs I kiss you with my words.

And I want to thank you, Dad. For loving me from the first day we met. Thanks for my husband who is so much like you, and for the loving bond you two always shared. Thanks for the love and close friendship you shared with Jordan. And for the love affair you had with Mom for 64 remarkable years. From your days together at Ohio State to today, your love was, and always will be, here to stay.

I love you, Dad. You will live in my heart forever. I will turn on Coleman Hawkins' rendition of "Body and Soul" in your honor today.

When Rejection Stings What Do You Do? Change The Rules

I’ve been fortunate to have my work published on my fair share of websites. A few of them focused on my midlife journey, yet the bulk were health-related. The reason is simple: I’ve lived with Multiple Sclerosis for more than half of my life and that’s where my expertise lies.

I offer hope and inspiration to those living with a chronic illness to help them understand that they, too, can live a joyful and passionate life.

But I never want to be defined as a disabled woman. I want to be thought of as a woman who happens to have a disability. I’ll go one step further. I’d rather people see me as a resilient, intelligent, joyful, compassionate, kind, curious seeker-of-truth who happens to have a few misaligned lesions but continues to live a life of passion and purpose within her abilities.

When I began to blog in 2011 I had no intention of writing only about Multiple Sclerosis. Don’t get me wrong. I love the MS community and I dedicate my life toward helping that community. Ability despite disability. That’s my mantra.

But I’m multidimensional; there’s so much more to me than my disease.

Sometimes I don’t think people see the whole picture of who I am and what I have to offer. Maybe it’s because I’m a quiet person with a soft speaking voice. Or maybe it’s because I smile a lot whether or not I’m feeling well.

So if the loudest voice in the room seems to win then I better step up my game.

Lately I’ve been feeling the sting of rejection. Oh, sure, everyone gets rejected once in awhile, and writers must learn that rejection is part of the game. We’re not everyone’s flavor and when we’re not we pick up the pieces and move on.

But I’m talking about a different kind of rejection. Because when you write about disability or disease you’re always teetering on the precipice of having people wince at what you’re talking about or being sincerely interested in what you have to say.

We cannot publish your piece at this time. We are not interested in this subject. We are not planning on having speakers for your subject at this time. Perhaps you might find another publication, another event, another website that is more suitable for your story.

Disability is not a sexy subject. You’re not giving advice on fashion after 50, makeup tips on creating a youthful look or what to do after the kids leave the nest. You’re different and the audience knows it. And while all of these subjects are popular and add value to those in midlife they are not the complete picture of what we should be talking about.

Let’s talk facts:

According to data from the April 2014 Census Bureau there are 7.6 million baby boomers in the United States, people like me who were born between 1949 and 1964. In addition, according to the U.S. Census Bureau Survey of Income and Program Participation of 1992, an estimated 48.9 million people have a severe disability and 34.2 million have a functional limitation.

So I wonder what exactly is more suitable than talking about disability, ability and aging to a growing population that’s either disabled or aging or both? I’m asking you because I’d really like to know. Please educate me.

Talking about what it’s like to live with Multiple Sclerosis, and all the issues that follow it - diet, exercise, health insurance, support systems, financial aid, medications, medical support, a sense of community and complementary medicine - are all issues that are applicable to every disease and to the general population.

Take the word Multiple Sclerosis out of the last sentence and replace it with cancer, arthritis, heart disease or aging and every subject from diet through complementary medicine is necessary when discussing a wellness plan.

We can’t escape aging or illness. So let’s face up to it.

So please, again, tell me why disability isn’t sexy enough to matter?

I’ll tell you what I think. I think disability is largely misunderstood, and when people don’t understand something they shy away from it.

The bottom line is disability doesn’t sell copy. It doesn’t gather large audiences. It doesn’t get media attention and only garners the kind of sympathy we don’t want or need. Other than at health-related events, event planners shy away from speakers discussing disability.

But here’s what I can’t figure out. If this is all true then why are the most popular posts I’ve written for my blog and The Huffington Post about MS? One of my posts received 2.6K views in 3 days! Someone, somewhere, somehow is very interested in what I have to say about our MS community.

So what’s going on? Is disability sexy? I can only deduce the following:

There must be some interest in what we have to say about living with adversity.
There must be some interest in what it’s like for someone to live with a disability.
Communication is the answer for a clearer understanding about disability.
Aging and disability are two subjects that need to be openly discussed.

I’ve seen great changes in the past 30 years, since my diagnosis, for the disability community such as The Americans with Disabilities Act, The Fair Housing Act, Air Carrier Access Act, The Voting Accessibility for the Elderly and Handicapped Act and the Individuals with Disabilities Education Act, to name a few.

I want to continue changing the stigma attached to disability. I want to crash through that imagined glass ceiling, smashing it into smithereens, the same ceiling that others began to break through. I want to add my unique voice to the conversation so I can fly high above the shattered pieces of glass. I don’t want to stand on the sidelines anymore. I want to be put into the game.

Just watch me.

Guns, Politics And That Fake First Family: How To Create A Better World

I think we're living in Opposite World because it feels as if the world is spinning out-of control. Odd, surreal and violent events are taking place. Sometimes I pinch myself to make sure I'm not dreaming.

The scripts Rod Serling wrote for "The Twilight Zone" seem to be closer to reality. He may have been more of a genius than we knew.

Point One: When the magazine "Cosmopolitan" declared on their cover that our First Family was not the President, First Lady and First Daughters but instead were a family of overpaid reality stars whose biggest claim to fame was that their daddy helped get OJ Simpson off of two murder convictions, and are the same ones whose toned, tanned and barely covered bodies are splashed all over the media, I needed to pinch myself. G-d help us all.

Point Two: I can't phrase it better than Jon Stewart. "The world running now: Whites are black. Trump's running for President. Does gravity still work?" Luckily Trump is losing ground in the polls, but it scares the hell out of me at the number of people who support and believe that this guy can really "make America great again."

Point Three: After the recent tragedy of the Oregon shootings President Obama had to make sense (is there any?) about massive gun violence and the laws that allow them to happen. In 2015 alone there were 294 mass shootings, 45 shootings at schools, 9,956 people killed in gun incidents and 20,000 people injured in them.

"We know that other countries, in response to one mass shooting, have been able to craft laws that almost eliminate mass shootings," he said. "Friends of ours, allies of ours - Great Britain, Australia, countries like ours. So we know there are ways to prevent it." ~President Obama

In 2016 I will be voting for a candidate who wants to make changes in gun laws. Columbine. Virginia Tech. The Batman cinema screening. Historic black church killings. Newtown. WDBJ7 news team.

Enough is enough. Gun violence must end.

Point Four: We've become accustomed to the divisiveness of our country because our political parties can get nothing done in Washington, The gap grows wider between the two every day with shutdowns, putdowns and meltdowns.

The commencement speaker at my college graduation was an alum of my school. Tip O'Neill was an outspoken and influential liberal Democrat. Despite his vehement opposition to the policies of Ronald Reagan the two respected and admired one another and were "friends after 6pm", often walking across the political aisle to work together.

As Thomas P. O'Neill wrote of his father in an 2012 New York Times article after the Obama/Romney debate:

"That commitment to put country ahead of personal belief and party loyalty is what Mr. Obama, Mr. Romney and millions of Americans miss so much right now."

Indeed.

I'm no Pollyanna (mostly!) I realize there have always been problems. Our grandparents lived through World War I and the Depression, and our parents suffered through World War II and the Korean War. We were born during the Vietnam War, civil unrest and shocking assassinations. There has always been poverty, hunger, inequality, inequitable education, issues with sustainable water and sanitation. The list goes on.

I'm empowered by the recent Sustainable Development Goals of the UN. Take a look at them and tool around the UN website.

I'm not going to preach my personal views on how to solve the problems of the world. I'll leave that to the great thinkers. But as I recently heard Nicholas Kristof say in his presentation about his new book "A Path Appears: Transforming LIves, Creating Opportunities ":

"You don't need to invade a place or install a new government to help bring about a positive change."

It's the tiny ripples that can create a free-flowing river. Speak out. Volunteer. Sign a petition. Say a kind word. Open your heart to others. Donate. And read, read, read before making your own choices.

Here's to a better world for all of us.