Why Am I Ecstatic About A New Unique Fictional Character?

My work as a writer and health advocate provides me with opportunities to meet fascinating people from all over the world. One way has been through a Facebook group, and its many subgroups, called The Binders (think back to Mitt Romney's "binders full of women"), a resource for "women and non-conforming writers of all backgrounds and experiences levels to connect, network, ask questions, and learn from one another."

character

The Binders is where I met Judy Mollen Walters, a published author and essayist, a fellow New Jerseyan and a lovely lady. 

character

When Judy told me about her upcoming book, A Million Ordinary Days, I was excited about its publication. When she revealed that her protagonist was a mom and career woman who struggled for independence despite a diagnosis of Multiple Sclerosis I was beyond thrilled! 

Her central character is a strong, resilient woman whose struggles mirror the strength and courage of people in the real MS community. 

This week is MS Awareness Week and to honor it and also support the publication of A Million Ordinary Days I thought I'd let Judy explain why she decided to write this intriguing story and how she chose her unique main character: 

 

My grandmother died when I was just ten and she was 64, but my memories of her are not the least bit fuzzy or grainy.  I see her clear as day in my mind.

She never spoke to me, not because she didn’t want to, or because we didn’t see each other – in fact, my family had Sunday dinner with her every week until she died – but because she couldn’t talk. Literally.

I remember the wheelchair. I remember trying to sit in the weak seat, wondering if it would collapse. I tried to make it go with my short arms and a child’s strength, but it wouldn’t.

I remember the couch she was nearly almost always laying on, especially the last few years. She was covered with a patterned blanket of muted colors that felt a little scratchy to me when I was forced to sit next to her so my mother could take a picture. She wore a white shirt.  She laughed at my father’s bad jokes but no sound came out.  She wore her jet black hair – hair that I inherited – back with a simple headband. Most likely she didn’t choose the style, but my grandfather, her caretaker, did.

She started needing to go into the hospital frequently when I was eight. For two years she was in and out of the facility, and I wasn’t quite sure why.  All I knew was that when she was in the hospital, we ate McDonald’s for dinner because my mother was with her.

She died on a cold day in January.

My grandmother had MS. She was diagnosed when my mother was 10 – the mid -1950s. It was a death sentence then, with little you could do but wait until it was over.

Fast forward many years to when I’m 33. I have two young children, 6 and 3, and I’ve been feeling really sick for a long time. Years. I’ve lost a ton of weight. Some days I can’t get off the couch. A colonoscopy reveals I have an auto immune disease, too – Crohn’s Disease. My long dead grandmother and I have more than our dark hair in common.

I’ve been battling my disease for 16 years now.  For me, it’s not necessarily a death sentence, though I could die from it, I suppose.  It’s more a disease of life – turning it upside down, limiting it, causing pain and discomfort, frustrating me.

And I know people who have MS. And it’s not necessarily a disease that will kill them, though they could die from it, I suppose.  But it’s turned their lives upside down. They may not be able to work, they may have setbacks, they might not be able to drive or sit up, even, at times. It can wholly take away from whom they feel they really are.

As an author, I wanted to explore the challenges chronic disease can bring not only to the person suffering from the disease but the family, as well. Multiple Sclerosis changed the course of my family. I think Crohn’s did, too.  So, in my new novel, A Million Ordinary Days, I decided to write about a character with MS. Allison Wheeler is feisty, she’s independent, she has a serious career, and she’s trying to raise a teenage daughter while also trying to mend a relationship with an adult daughter.  She’s an ex-wife who still cares deeply for her ex-husband. She’s discovering love again. She is just your ordinary woman, except she has MS. And MS is changing the course of her life. And also changing the course of her family. And, no matter how hard she tries, she can’t do a thing to stop it.

Judy Mollen Walters is the author of five novels about strong women and their families, with A MILLION ORDINARY DAYS, the story of a woman with MS, out now. She is also an essayist whose work has appeared on The Washington Post, The Huffington Post, and SheKnows, just to name a few. She can be reached via her web site at judymollenwalters.com.

Click here to order a copy of A Million Ordinary Days on Amazon. 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!

Six Things I Want You To Know About Multiple Sclerosis And Me

As part of my personal mission as a writer and health advocate, I try to educate others on what it’s like to live with an invisible disease.

Caring for those with invisible illness like MS

Christine Miserandino's Spoon Theory (www.butyoudontlooksick.com):
Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities as much as one would measure the proper amount of spoons needed for an event or occasion, sometimes having an abundance, other times coming up short.

Because sometimes, when people can’t see your disease, they don’t believe you have one. 

By shedding light on our everyday battles, I hope the information I provide is a catalyst for the compassion and tolerance that is necessary toward bridging an understanding gap.

Step back to make way for a better world. 

How you can help someone with MS or other chronic illnesses

1. Don’t feel sorry for us, but do us a favor by learning more about MS.  Then the next time we tell you we're tired or seem to often cancel plans, you’ll have a better understanding why. Learn more about MS here

2. We may not look sick, but our immune system tells a different story.  So the next time we need to occupy a handicapped parking spot, first ask if our placard is registered before you begin shouting at us. We truly appreciate your concern.  But we think you should treat a disabled person with the respect we deserve.

3. Practice compassion and tolerance whenever you see someone with a disability.  Our road is a daily battle of maneuvering the challenges of life.  The things able-bodied people take for granted, such as walking, talking, dressing, exercising, seeing, peeing, pooping and intimacy is considerably more difficult for people with disabilities.

4. Help us keep our self-respect intact.  Imagine falling down in front of a crowd and people begin to whisper that you look drunk.  Or you find yourself attending an event with friends but are unable to keep up with their fast pace.  We don’t enjoy burdening others with our issues. But in our silence, we’d be comforted to know that you understand why our bodies are disobeying us, and that you’ll be willing to slow your pace down to help us feel better about ourselves.

5. Be patient.  We are fearful of the next exacerbation (flare-up) that may wreak havoc on our bodies.  So if you’re trying to make plans with us, and we seem to ask a lot of questions (how long will the event be, where is the nearest parking lot, is the venue accessible) please be mindful that there’s a reason why we’re asking so many questions.  It’s not that we don’t want to see you; it’s simply that we need to take care of our MS.

6. We're often tired.  I know you are too, but I doubt it’s the same kind of fatigue. Because when we're tired, it feels almost like we have a nasty case of the flu, only 1,000 times worse. Every part of our body cries out for a nap, and no matter where we are or what we're doing, we have to find a place to rest. So please understand why we may have to leave a party early or cut our visit short.  In a perfect world we'd love to stay, but our brain is yelling at us to rest.

More MS Resources here

We'll make up for lost time the next time we get together. That's what we're telling our hearts.

Families Coping With Illness: How Our 2006 Video For A Local TV Program Is Still Relevant Today

March is Multiple Sclerosis Awareness Month, a perfect time to share a video made in 2006 to illustrate how my family was coping with my diagnosis.  I hope it will help to spread awareness about MS and disability.

In 2006 my family and I were interviewed at home for a local television program, CAUCUS: New Jersey with Steve Adubato for the segment, "Families Coping With Illness." They wanted to know the story of my MS diagnosis: how it happened, how it affected my family and how we were coping.

Multiple Sclerosis Stories

Bar Mitzvah 2006

It was three days after my son's Bar Mitzvah, and my husband and I were exhausted.  But we knew that our participation in the making of this video would be another way to educate the public not only about MS, but also how families learn to cope when one of its' members are living with a chronic illness.

March is Multiple Sclerosis Awareness Month, so I thought this was a perfect time to share this video that tells my story.

Living with MS is a story of public and private struggle

Every person with MS has their own story of public and private struggles with the disease.  It is a story unique to them, yet one with a common similarity: the hope for a cure.

Here are some stories from The National Multiple Sclerosis Society's campaign "MS Connections."  They are stories of people supporting one another, while exploring the issues that shape their world.  You can add your own story to their campaign.

Living with Multiple Sclerosis Illness

Photo Credit: National MS Society

What stories can you share about coping with a loved ones illness?

NOTE: Video provided by Caucus New Jersey, Paula M. Levine (Producer)

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The Best Gifts Are Passed Down From One Generation To The Next

Someone asked me what was the best gift I ever received. I've been stumbling over my response to this question ever since.

love and compassion

I didn’t want to answer by saying something obvious, like a happy marriage (which I never take for granted) or something tangible like a beautiful piece of jewelry.

Then it hit me.  Of course.  It was right in front of me all the time.

The best gift I ever received might sound strange to you, but its the lessons I learned about myself, and from those around me, after being diagnosed with Multiple Sclerosis.    

Being diagnosed with an incurable chronic illness is not only about the patient. It's also about those who love and care about you. The courage and love shown by family and friends while the sting of the diagnosis is fresh and raw is a true lesson.

And a gift.

My family showed courage the day of my diagnosis.  My mother had the unenviable task of telling me about my diagnosis, something no mother should ever have to do.  My brothers hugged me, and my father quietly kissed my forehead while gently stroking my hair.

My boyfriend held me close, and whispered he was with me for the long haul.

My three best friends cried and laughed with me as we listened to each other's words of wisdom.

This is how my journey began.

Family gifts

Over the years I’ve had friends drop off the radar.  Because of their ignorance and inability to understand illness, I’ve been hurt, questioned and misunderstood. This served to strengthen me, and was the catalyst in my need to educate and spread awareness about MS and that, despite having a disability, my abilities are what define me.

The gifts I received of love and understanding are the ones I've tried to pass on.

When my son was born we decided to always be truthful with him, even about my illness.  Mommy can’t run, Mommy gets tired, Mommy has good days and bad.  We also wanted him to learn the importance of a positive attitude, tolerance and being compassionate.

When my MS Center was celebrating their 10th anniversary my son was 3 years old.  A popular local newscaster was attending their celebratory event, and my son and I were going as well. While the newscaster was speaking, I noticed my sweet little boy climbing up into the lap of one of our dear friends who was severely disabled and required a wheelchair.

I smiled when I noticed the joy on the man’s face.  That tiny act from our big-hearted, innocent child stayed with me all these years later.  I knew in my heart that we had, indeed, instilled in our son the best gifts I ever received:  love, compassion and an understanding heart.

My "best gift" was being passed down from one generation to the next.

gifts of family

 

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Changing The Face Of Disability Into The Face Of Ability And How Hollywood Helped Us Change It

I have never been invisible.  Not before my diagnosis or after.  I have a voice.  I have opinions.  And these days my dance card is as full as ever.

dreams and aspirations

I want to use my voice to make a difference in the world.  I want to change the face of disability into the face of ability.

Anyone with an illness, from asthma to cancer to every ailment in between, is the same person they were before their diagnosis.  Our dreams, aspirations, hopes and ideas remain unchanged.

The only difference is how we make our dreams come true.

Having an illness doesn’t change who we are.  Seconds before our diagnosis and moments afterward only changes the physical part of us.  It will not, and should not, change the core of what makes us uniquely who we are.

Research. Learn. Rail against mediocrity in all forms, and against anyone trying to tell us that we can no longer be the person we once were.

We must now be our own best advocates, and our own best friends.

map of the world

We must trust our instincts and hold tight to our dreams, because together they will point the way toward achieving a life that still matters.  The map may look  different, but the destination is the same.

We must always remember to keep our eye on the prize.

I recently began watching the serial drama “The West Wing” that originally aired on television from 1999 – 2006.  Primarily set in the West Wing of The White House, it gives us an inside look at the day-to-day operations of the President of the United States and his senior staff.

It was the first time a main character of a popular weekly program had the same affliction I have, and the first time it was accurately portrayed.

Hollywood finally got it right.

Josiah Bartlet (played by Martin Sheen) was diagnosed with relapsing-remitting Multiple Sclerosis.  His wife, chief of staff and physician quietly managed his grueling, stressful schedule to stave off any exacerbations from his MS.

This fictional character portraying the most powerful man in the free world had a disability.  He was a brilliant, vibrant and compassionate character, and although he was fictional, an important message was conveyed to audiences about having a disability:

Living with a disability is not the sum total of who you are.  It is what you do with your abilities that define you and brings value to you and to the world. 

My road map has changed many times over the years.  I’ve been bruised, battered and kicked around by my illness.  And every time I was knocked down, I became stronger with a new resolve to do the best I can within my abilities.

Like Josiah Bartlet, I choose to bring value to myself and to the world.

I write about the roadblocks I've encountered and overcome as a way of empowering others to do the same.  Together, we will change the face of disability into the face of ability by doing what we do best - being ourselves.

We are not invisible.  We have opinions. And our dance cards will be always be filled.

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