MS advocates on achieving a fulfilling lifestyle

Since March is Multiple Sclerosis Awareness Month I thought it’d be the perfect time to ask twelve accomplished MS advocates (who I know and trust) to share their knowledge. In their own unique ways they shine a light for others to follow with the same courage and determination they’ve depended on for their own MS journey.

These advocates make it their mission to empower the community so that no one ever feels frightened or alone.

Their responses answer a single question that’s important for the newly diagnosed and anyone struggling with the disease. You’ll find powerful information in each response that you can rely on for years to come.

Please leave any comments or questions you may have and I’ll get back to you as soon as possible. Here we go!

[Oh, before you move on please click here to read why I’m thankful (yes, you read that right) for my diagnosis. It’ll lift your spirits and possibly change your perspective.] 

Advice for those newly diagnosed with MS

The question I asked each advocate: What advice would you give someone who is newly diagnosed, or is struggling with the disease, based on what you learned since your own diagnosis?

Caroline Craven

Diagnosed 2001
Learn more about Caroline on her blog The Girl with MS

Since my diagnosis in 2001, my awareness of being compassionate toward myself has increased dramatically.

In the beginning there was guilt, depression, and anger at what was happening to me. Why can’t I walk or see right now? Where is my once powerful, strong body and mind? But by learning to let go of my ego (not an easy thing to do!) and asking for help, my compassion toward my delicate new self developed.

In using these new self-care skills, I found ways to thrive in life. I still have bad days and symptoms are always peering around the corner. During those times I cradle my heart in my arms, give myself a hug, and remind myself that everything is going to be OK.

And hey, it can even become better. As we keep our awareness open, and love ourselves, remember, we’ve got this, it does not have us!

Damian Washington

Diagnosed in 2016.
Learn more about Damian on his YouTube channel “NoStressMS“

Over the years of living with MS, one of the things that I’ve found to be most helpful is possessing the ability to give yourself goals to aim at, to achieve but also embody grace when you don’t exactly hit the mark. Each day is different, especially when it comes to symptom management, learning when it’s an appropriate time to try to stretch yourself beyond your current possibilities and knowing when it’s best to ease up on the gas and try again another time has been one of the most helpful components to my wellness.

Finding the balance between the two helps keep me fired up to try to achieve more, but simultaneously lets me feel the joy in small victories and have that joy sustain my hope during times when I cannot do all that I envision.

Meredith O'Brien

Diagnosed 2014
Learn more about Meredith on her website meredithobrien.com and check out her new MS memoir “Uncomfortably Numb” available at Bookshop.org

Give yourself time to mourn this life-altering diagnosis and to adjust to the changes that accompany it. Be patient as you mentally and physically acclimate to the realities of your MS experience.

After being diagnosed, I tried to rush myself through this vital process, expecting my body to work the way it always had. When my MS symptoms prevented that from happening, I became angry with myself and wildly impatient with my body. I wasted precious energy which could have been directed toward healing.

If I was speaking with my newly-diagnosed self, this is what I would emphasize: give yourself time and be gentle with yourself at the beginning of this new chapter in your life.

Dave Bexfield

Diagnosed 2006
Learn more about Dave on his website ActiveMSers.org

Seize the day. No matter what MS throws your way, you’ll always be able to capture life’s sweet moments—those special times that overwhelm even this disease. Hold on to those—and never let them go.

And whether you are newly diagnosed or a grizzled veteran with this disease, I give all of my followers the same advice: be active, stay fit, and keep exploring!

Jennifer and Dan Digmann, a/k/a "A Couple Takes on MS"

Jennifer, diagnosed 1997 and Dan, diagnosed 2000
Learn more about Jennifer and Dan at A Couple Takes on MS

Remember to keep moving, manage your weight, connect with others to find the credible information and support you need, and never give MS more credit than it deserves.

You are the strongest in this relationship!

Tamara Sellman

Diagnosed in 2013
Learn more about Tamara at tksellman.com, and check out her newly published book Intention Tremor now available here

You will have a much better experience living with MS if you can learn to become your own best advocate. This requires finding and using specific kinds of tools for navigating the entire healthcare system (including insurance, hospital departments, specialists, and ADA protections).

You can’t do this alone. But that’s okay…reach out to others (especially other people with MS) to learn “insider” tips and finding support from MS-related organizations. They are there in abundance.

Also, don’t be afraid to ask for help and to demand answers from your healthcare providers. Seek out specialists who work with you as a team; avoid those who provide you with no options, who don’t listen to you, or who mock your efforts to self educate on the inner workings of MS. The best doctors appreciate patients who are willing to self educate because they seem them as empowered and treatable with better outcomes.

Being an empowered person with MS who practices self advocacy can make you a major force in the world! Don’t let MS stop you from being your own best self.

Teresa Wright Johnson

Diagnosed 2014
Learn more about Teresa on her website teresawrightjohnson.com

Take the time needed to process the diagnosis and learn all that you can.

Listen to your body and know you are your own best advocate.

Finally, always have hope.

Amy Gurowitz

Diagnosed 1988
Learn more about Amy on her website MS-LOL: Multiple Sclerosis a Life of Learning

I would recommend anyone who has been recently diagnosed to go slowly. When you are looking for information about MS don’t seek out too much.

Learning about this disease is so challenging because it is so variable. When you are newly diagnosed it is easy to get TMI (too much information) and feel completely overwhelmed.

We don’t need additional sources of anxiety, after all these are symptoms that may not ever affect you.

Reserve your energy, emotional and physical for more productive things.

Other people who mean well will probably say things to you that shake your ground. (They do to me even 33 years in.) Lean away from those comments and lean in to a person (or group of people) with MS who “get it” and will give you the support you need. There are many people you will meet who will be invaluable in this challenging journey.

Jodi Dwyer

Diagnosed 2008

Learn more about Jodi on her Instagram page at @thejodibean (and meet her adorable pup Finley, too!) 

I have SO much advice to give for someone who is newly diagnosed but I will try to keep it simple as to not overwhelm!

My best advice is to take things one day at a time especially because this disease can be so different everyday. Surround yourself with positivity. Stress feeds pain. The more stressed you are the worse you will feel. So surround yourself with a job that makes you happy (if you work), people who make you happy and hobbies that make you happy. I love my job and it fulfills me. I have an amazing family and friends who bring me joy. I’ve unfollowed people on social media who don’t bring me joy (the unfollow button is your friend!) I have many hobbies and when I have the energy I love doing them. From walking my dog (or cuddling my dog) to riding my bike, to binging a show on Netflix, baking, traveling and volunteering all make me happy. I know my time is valuable so I spend my time doing things I love. You should too!

Lastly, follow like-minded MS advocates/patients on Instagram and Facebook. Join MS Facebook groups that you find helpful. Read reputable blogs and websites for research and information. Make sure you have a partnership with your MS neurologist. This is key to making treatment decisions throughout your journey!

I could go on and on but those are the most important things that come to mind!

Jodi Johnson

Diagnosed 2008

Learn more about Jodi on her website, Edible Monster or on Instagram as @msjodijohnson or Facebook as Jodi Johnson

The advice I would give someone who is newly diagnosed would be to find an MS Center near them that specializes specifically in multiple sclerosis.

Of course I would reassure them that they will be able to handle anything and everything that comes their way and to never give up!

First things first though, when caring for yourself you need to find the best care and a place you are comfortable with for halting the progression of MS and being able to address your symptoms head-on as they come. A comprehensive MS center is generally proactive in symptom management as well as treatment.

Put your oxygen mask on first. Self-care in all aspects from exercise to your diet lifestyle to healthcare provide the best chance at living a full life with MS.

And always remind yourself, you can do this!

Lisa Emrich

Diagnosed 2005
Learn more about Lisa at her active Facebook page

After living with the ups and downs of chronic illness for decades, I’ve only recently learned a more important lesson.

No matter what has happened to you in the past or what you thought you could do or not do in the future, nothing is forever or unchangeable.

Each day, each week, each month, you make a gazillion choices. Make those choices with the unconditional love and support you deserve from your very first deep breath of the day to your final thoughts before sleep at night.

The post What Advice Can Twelve MS Advocates Offer Patients About Living with the Disease? (Spoiler: Plenty) appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

A few months ago my husband, son and I were asked to be part of a video series on living, and supporting those living, with MS. The theme of the initiative was:

I have MS. I have a team. I have a future. 

Here's the trailer:

https://www.youtube.com/watch?v=lfY209PUr-c

I was thrilled about this important endeavor and the three of us jumped at the chance to be part of it.

I relished the notion of using my voice on camera, something completely different than expressing my thoughts through the written word.

I sat down and wrote my script, polishing it until I felt my message was both interesting and informative. I watched my favorite TED talks for pointers on how to look on camera. I purchased a new outfit that would be comfortable and chic. And I held my breath the morning of the shoot as the makeup artist applied her palette of colors to my face.

I was told my segment should focus on the idea of "What I Wish I Knew."

What did I wish the younger ME knew after being diagnosed? What didn't I know then that I know now? What lessons did I learn along the way? What pearly words of wisdom could I pass on to help others manage their journey better than I did?

I hope you'll find time to sit back, listen to my story and tell me what you think. Go easy on me! This is my first time alone on camera....

My next blog post will be another video called "It Takes a Team" with my husband, son and me. We didn't write a script. We simply sat on a couch and spoke directly from our hearts.

You can view other videos in the MS TEAMWORKS series on the Catamount Medical Education website. Subjects include: The Roadmap to Motherhood, Integrative Medicine, I'm Getting Worse - What Does That Mean, I Wish My Healthcare Professional Knew, How I Manage My MS, and many more.

My thanks to the people at the Consortium of Multiple Sclerosis Centers, Catamount Medical Education and support from EMD Serono for this wonderful experience.

The post How My First Video "What I Wish I Knew" Will Inspire You appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

The misleading headline Meet the Cambridge Scientist on Verge of Curing Multiple Sclerosis caused some hysteria in the MS community this week. I was sent several private messages, texts and emails from people who love and care about my welfare. Their thoughtfulness touched my heart.

The story was about a Cambridge scientist who sees a solution to the disease using nanotechnology which has garnered some interest from two large pharmaceutical companies and the hope that investors will help fund the “ambitious” target date of 2020 to begin clinical trials. (If you are interested click here to see their pre-clinical trial results.)

"Cure" for MS is just click bait

A cure for multiple sclerosis from this therapy is not around the corner, if at all, yet the media decided to exploit the MS community with their headlines. This caused quite a stir for hopeful patients crossing their fingers.

Shame on the media for putting aside journalistic integrity in favor of higher viewership.

In the era of fake news and alternative facts we must be careful with our words. They matter. Headlines and books written at the expense of other’s misfortune are cruel and offensive.

It makes me crazy to read some of the empty promises lining the sponsored ads of my Facebook newsfeed. I’ve cured myself! I’m symptom free! You can beat this!  

Nope.

To get a therapy approved researchers must test them in laboratories. The most promising ones move onto clinical trials to learn more about treatment, risks and effectiveness. There are then three phases to clinical trials and in Phase 4, after the therapy is approved and made available to the public, the therapy continues to be tracked for safety, risks, benefits and optimal use. The amount of time it takes to complete a clinical trial varies. It can take from 10 - 15 years to complete the first three phases even before the therapy is licensed.

Alternative medicine and MS

Over the years I’ve been told to try bee venom, remove amalgam fillings in my mouth, use magnet therapy, go on a low-fat (and high-fat) diet, have my spine manipulated, use a large amount of supplements including minerals and coral calcium and drink aloe juice to ease the symptoms or cure myself from MS. I’ve done none of these.

Some CAM (complementary and alternative medicine) are regulated by the FDA but many are not.

Be wary. Do your research. Ask questions. Reach out to others. Talk to your doctor.

I reached out to fellow advocates who I now call friends to discuss this latest claim. I knew what I thought but wanted to hear their opinions. They didn’t disappoint.

This blog post is one girl’s opinion about the state of cures, scams and journalistic pride and integrity. If you agree or disagree I’d love to hear your constructive opinions. After all, it takes a village.

Here’s to your good health.

The post How Words Like "Cure" Can Exploit A Community appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

By the time you reach my age you've learned a lot about vulnerability and adversity. Unless you've been extraordinarily blessed there's no way to avoid them. It's no secret I was struggling with extra health issues for many months. This left me feeling a little blue and vulnerable. I was home for weeks on end, unable to drive due to MS and experiencing pain from SIBO (small intestine bacterial overgrowth.)

I cancelled countless social and work-related engagements, unable to have an active life. Like Ferris Bueller said life moves pretty fast. I miss the old me.

To make matters worse I had to cancel a networking event sponsored by my employer, Health Union. I was really looking forward to it for months. It was a chance to finally meet the people I work for and the contributors I enjoy working with.

Finding empowerment when living with MS

I was feeling pretty low when I decided to do something I often do when I need inspiration. I looked at a few TED Talks.

I was completely galvanized by Aimee Mullins, an American athlete and model, famous for her athletic achievements and born with a medical condition that resulted, at the tender age of one, in the amputation of both legs.

Aimee talked about looking at disability through a different lens than the definitions offered in dictionaries:

Credit: Webster's New World Thesaurus, 1982. Courtesy of Aimee Mullins' TED Talk "The Opportunity of Adversity"

Useless? Wrecked? Decrepit? I found myself grinding my teeth when I read this.

She explains her idea that:

"Adversity isn't something we need to get around to live our life. It's part of our life. Our responsibility is preparing for adversity and to meet it well. Adversity opens door for human potential."

I encourage everyone to watch Aimee's talk. It will empower you to think about the endless possibilities of what you can accomplish in your lifetime.

"Truthfully, the only real and consistent disability I've had to confront is the world ever thinking that I could be described by those definitions." ~Aimee Mullins

I'd love to meet Aimee and give her a great, big hug for helping me change the way I see myself.

The power of vulnerability when living with chronic illness

I also found inspiration with Brene Brown. She's absolutely brilliant and I've listened to her speak hundreds of times. Her thoughts on humanity in "The Power of Vulnerability" always resonates with me. It's about connection, heartbreak, the feeling of being excluded, shame, fear and being fully vulnerable.

These are subjects we may talk about on a therapist's couch or to our closest friends. Otherwise they're discussed in hushed tones. That's nonsense. These feelings are experienced by the majority of people. We needn't be ashamed of simply being human.

I often struggle with these emotions. It's part of the fun of living with chronic illness!

As Brene says, "We're imperfect and wired for struggle but are worthy of love and belonging."

Absolutely.

She explains:

We need the courage to be imperfect,

To have compassion and kindness for ourselves first and then to others,

To have connection as a result of authenticity,

To let go of who we think we should be, and instead, be who we are.

We need to embrace vulnerability. It is the birthplace of joy, creativity, of belonging and love.

We need to let ourselves be seen, deeply seen, vulnerably seen.

We need to love with our whole hearts, even though there's no guarantee.

Practice gratitude and joy.

Believe that we're enough.

TED Talks are amazing. They can inspire, educate, encourage and give us hope. My spirits were lifted by these two intelligent, passionate women. I hope they'll lift your spirits, too.

Thank you for allowing me the honor of sharing my journey with MS with you. I hope by breaking myself open I've helped you feel better in some small way.

The post How Adversity and Vulnerability Are Powerful Teachers appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

Fear. Illness. Disappointment. Anxiety.

The words dangle before my eyes, suspended in midair as if to taunt me. They hang in the balance as constant reminders of what is now. I close my eyes tightly, hoping the words will disappear. But when I open them they dance wildly as if to mock me for the hope that went unanswered.

I know I don’t have the corner on pain and sadness. But I’ve had more than my share, in ways I never imagined.

Offer hope instead of platitudes to those with chronic illness

People mean well when they offer trite platitudes like “When one door closes another one opens” or “We get as much as the Lord thinks we can handle” but those maxims were created by people looking for easy answers. They’ve never stopped anyone’s anxieties.

Whatever lessons I’ve learned came from the brilliance of others who offered hope and resilience through words or action.   

When I was thirteen my brother gave me the book “The Prophet” by Kahlil Gibran. I quickly devoured it. As I allowed the words to wash over me something powerful happened. My inner spirit came to life as if there was a birth. And there was. It was the beginning of my passion for philosophy and spirituality. I felt my inner spirit coming out of the darkness and into the light.  

Change your perspective, change your world

Gibran offered me a way to look at life through a different lens. Changing your perspective can change your world.

The wound is the place where the Light enters you. ~ Rumi

The words of great philosophers, poets and men and women of peace give us comfort during troubled times. Ordinary folks living their lives with integrity, dignity and compassion provide us with examples to live by.

They all give us the tools to live an honorable life in an imperfect world. Living is not determined by what life brings to us but by the attitude we bring to it.

Attitude is key to living a life of joy

At a young age I learned that my attitude would be the key to living a life of joy and passion. Little did I know how handy this would be at a seminal moment in my life when, at the tender age of twenty-eight, I was diagnosed with Multiple Sclerosis and became part of the disability community. I leaned on the philosophy of Gibran to help me face my greatest challenge.  

Buddhism helped me deal with adversity. When things fall apart, feel lucky instead of angry. Yes, lucky. By facing fear we find the courage to grow stronger. Leaning into fear is an opportunity to flourish.  

I know that facing our fears is not an easy thing to do. Sometimes the adversities we face are almost too much to bear. Life can be cruel.

When MS feels too much to bear, do this

Sometimes life hurls bushels of lemons at us and we’re unable to make lemonade. Our troubles seem too difficult to overcome and we think we’ll never recover.

Breathe. Step outside of yourself and look through a new lens. We always have two choices: feel sorry for ourselves or treat the lemons as a gift. Every challenge is either an obstacle or an opportunity to grow. The choice is ours.

My lemon is my chronic illness. It’s a battlefield, a daily war zone of fatigue, pain, weakness, anxiety and even depression.

What's your lemon?

The importance of gratitude when facing chronic illness

Every day I try to be grateful for the morning sunrise and the fact that I can get out of bed on my own. I'm grateful to be able to dress, bathe and feed myself. That I can walk and use both arms to hug my husband, son, and cats. I blessed to have work I’m passionate about and the ability to help others feel less frightened and isolated on their health journey.

And I can make my own choices.

No matter what course my disease takes in the coming years I will remain strong. I will always use my voice to make a difference in the lives of others, and let the world know that this disabled woman will always matter.

At some point in our lives we will all stand on the precipice of fear and must choose which direction we want to go. Life isn't always fair. It's not the Utopia we want it to be. So in the face of sadness and despair I hope we can remain forever strong. 

How about you?

I choose to live in gratitude, no matter what lemons are thrown my way. I count my blessings, turn toward fear and keep my head in the direction of the sun to face another challenge. Because, as my favorite quote by Rumi says:

“The wound is the place where the Light enters you.”

NOTE: This post was originally posted July 2015.

The post The Wound Is The Place Where The Light Enters You appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

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, 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.

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 would never have known the joy and unconditional love of dating someone who proposed marriage to me despite my recent diagnosis.
• I would never have felt the compassion and understanding of family and friends who loved me at my worst.
• I would have missed out on knowing extraordinary nurses who went above and beyond anything they learned in nursing school.
• I wouldn't know people in the MS community, and other health-related communities, who continue to inspire and educate me every day through their strength and courage.
• I would not have had a reason to use my love of writing to inspire, educate, and make a difference to others about living a positive life after a devastating diagnosis.
• I would not have had an opportunity to write for health-related websites and online publications that allow me to write about something I feel passionate about.
• I wouldn't know the generous and caring women in my blogging community who accept me for who I am, warts and all.
• I wouldn't have had an opportunity to quickly chant my elevator speech about ability and disability to people who've made an impact on the world. Alan and Arlene Alda, John Gray, Goldie Hawn, Mrs. Gene Kelly and Steve Wozniak, to name a few. I "name drop" because I respect and admire all of them for stepping beyond their creative work to make a difference in the lives of others.
• I wouldn't have been able to teach my son, by example, that disability doesn't mean inability, and that tolerance, compassion and understanding always matters most.

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.

The post Why I'm Thankful For My Diagnosis appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

It would be easy to write about Alan Alda by only recounting stories that everyone already knows, such as his tremendous successes in television, movies and theatre. I could also discuss his well-known talents as a gifted writer of books and screenplays, or his lifelong passion of science that led him to not only host PBS’s “Scientific American Frontiers” for 14 years but to challenge young minds and inspire the creation of The Center for Communicating Science at Stony Brook University.

But Alan Alda is much more than that, and writing about only those achievements, as incredible as they are, would be a disservice to him. He has always been like a cauldron packed tight with ingredients of passion, ideas and deep thought that would burst wide open if he couldn’t keep moving forward.

As I listened to him speaking recently at The New Jersey Speaker Series it occurred to me how Zen-like Mr. Alda is. He sees his life experiences with great clarity and, after examining them like a true scientist, he challenges and questions himself, then draws his own conclusions.

I can best illustrate the Zen of Alan Alda by using three stories from his words and life experiences.

Near-death experience changed his life: Story One

There was one night that forever changed his life, and he uses that near tragedy to contemplate how he became the man he is today.

“I’d like to tell you about a night that changed my life. I was up on top of a mountain in Chile, in an observatory because I was with astronomers doing a science show, and I got this tickle in my gut, and within a few minutes it was the worst pain I had ever felt in my life. They had a medic up there. I don’t think he’d done anything medical before. I’m all doubled up and he comes over and says, 'How are you?'

"They had an ambulance, a big old boxy thing. It looked like the ambulances we had on M*A*S*H. They slide me into the ambulance and I’m groaning and screaming and they take me for an hour and a half down this rocky mountain down to this little town to a hospital with a dimly lit ER.

"But there was this brilliant doctor there that night who was an expert in what was wrong with me. It turned out I had a bit of my intestine that lost its blood supply and if it burst a couple hours later I’d be dead. But he knew exactly what the problem was and he figured it out in a few minutes. He leaned into me to tell me they have to cut out part of the bad intestine and sew two good ends together.

"And I said, 'Oh, you’re going to do an end-to-end anastomosis?' He said, 'How do you know that?” and I said, 'Oh I did many of those on M*A*S*H.'

"And I lived.

"And when it was over I felt I’d been given a whole new life. The world was so fresh, the colors were so free, just the feeling of being alive. I wasn’t supposed to eat anything solid, and the first piece of cheese I had was the most delicious meal I’d had in my life. I was like a newborn baby tasting everything fresh.

"So I thought I don’t want this to end. I’ve met people who had near death experiences and they kept that feeling for a while but then it went away. I didn’t want it to go away. How can I make this last?

"Maybe if I think about how I got to be how I am, and who I am, and the lessons I’ve learned, maybe there’s something in that. So I started making notes about my earliest childhood memories.”

Alan Alda speaking on the life-changing power of tragedy

Life moves on after tragedy: Story Two

When Mr. Alda was seven years old he contracted polio, a horrible deadly disease and an epidemic among children at that time. He remembers his father administering painful treatments that included placing hot woolen blankets on his limbs and painful massages on his muscles.

While recovering, Robert Alda brought home a beautiful black cocker spaniel to cheer up his son. The dog was so sweet and loving that they immediately fell in love with each other. When the puppy tragically died his father, in a loving but perhaps misguided effort, had the dog stuffed for posterity so he’d “always have him.” But the dog had a “hideous expression with glass eyes that followed you wherever you walked” and after placing it next to the fireplace, “when guests entered the room they’d stop dead.”

I realized years later that this was a tremendous lesson for me. You can’t have your dog stuffed. I know that sounds trivial but it’s true. You love the dog, he goes away, and you move on. The stuffed dog is a counterfeit; a hollow imitation.”

Moving On: Story Three

Someone from the audience asked what he thought Hawkeye Pierce would be doing today. Alda answered that he never thought about it. As much as he loved the character and was proud of the part he played in creating eleven seasons of M*A*S*H, when it was over, it was over. And he moved on.

Beyond the Zen of Alan Alda is the love everyone feels for him. I have never met anyone with an unkind word about him.

Meeting a personal hero

As a devoted fan I’ve written about him before. About my schoolgirl crush that turned into deep respect for a man completely devoted to his family and friends, one who always seemed genuine and self-effacing whenever I'd hear him speak.

I was more than thrilled when my husband and I were invited to attend a post-event cocktail party to meet Alan Alda in person. I was admittedly a bit nervous. I’ve met celebrities before, but for me this was different.

I didn’t want to sound like a gushing teenager or a typical fan. I wanted him to know how important the work he is doing at Stony Book University is to the disability community and me. So I practiced my elevator speech. Several times. Okay, more than several.

When it came time for us to meet him one-on-one, my instincts were right. It was as if my husband and I were alone in the room with a dear friend. He listened intently as I thanked him not only for his funny and fascinating talk, but also for the contributions he’s making by teaching future scientists how to communicate more effectively with the public, and what that will mean to the future of medicine.

Although our conversation lasted only a few minutes it will leave an indelible impression on my heart.

Alan Alda speaking at Fairleigh Dickinson University

END NOTE: I also introduced myself to Arlene Alda, who is an accomplished musician, photographer and writer. Her latest book "Just Kids from the Bronx" is an oral history about what it was like growing up in the Bronx, a place that "bred the influencers in just about every field of endeavor today." It will be coming out March 2015. I wanted to tell Mrs. Alda how excited my Bronx born mother is about reading her upcoming book. Mrs. Alda was lovely, and it was a pleasure to briefly speak with her.

The New Jersey Speaker Series is an inaugural series of talks produced by Fairleigh Dickinson University. The impressive list of speakers are Madeleine Albright, Alan Alda, Steve Wozniak, Olympia Snowe, David Gergen, David McCullough and Dan Rather, each influential voices in our world today.

Photo Credits: Courtesy of Fairleigh Dickinson University/New Jersey Speaker Series

Other Posts You Might Enjoy:

• My Celebrity Crush: How Teen Love Evolved Into Admiration For Alphonso
• Our Collection of Broadway Playbills Tells The Story Of Our LIves
• New Jersey Speaker Series: How Madeleine Albright Made Me Laugh

The post The Zen of Alan Alda appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

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.

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.

OTHER POSTS YOU MIGHT ENJOY:

• Families Coping With Illness: How Our 2006 Video For A Local TV Program Is Still Relevant Today
• How My Laptop Can Help Me Break The Glass Ceiling Despite My Disability
• An Emmy Award Winner Conquers The Music World And His Battle Against Multiple Sclerosis

The post Six Things I Want You To Know About Multiple Sclerosis And Me appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

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.

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.

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)

Some other posts you might enjoy:

• An Emmy Award Winner Conquers The Music World And His Battle Against Multiple Sclerosis
• Summertime, Multiple Sclerosis And Learning Our Lingo
• Would I Still Be Me If I Wasn't Disabled?

The post Families Coping With Illness: How Our 2006 Video For A Local TV Program Is Still Relevant Today appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

Lately I've been thinking about this quote from the Bible:

"God only gives us what we can handle." 

While it's often said that this quote appears in the Bible, that is a fallacy. Instead, the actual verse goes like this:

"No temptation has seized you that isn't common for people. But God is faithful. He won't allow you to be tempted beyond your abilities. Instead, with the temptation, God will also supply a way out so that you will be able to endure it. "~Corinthians 10:13

SPOILER: Don't worry.  I'm not going to start preaching about religion, the existence of G-d or espouse my personal beliefs.

Life throws us curve balls

It's inevitable that life will throw us curves as we age.  If we're lucky, we live a life filled with many blessings, and the darkness of illness, financial hardships or despair rarely comes our way.

But unfortunately that is not always the case.  While it seems as if some people sail through life unscathed by darkness, others seem to have darkness dumped on them. When that happens, it feels as if a pitching machine is throwing curve balls at you while you stand still, too paralyzed to move.

"Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful." ~Buddha  

Life has been throwing me many curve balls lately, and although I try to stay strong and positive, there are times when I just give up.

I give in to sadness, and begin to feel sorry for myself. I'm only human.

I see friends traveling around the country and wish I could join them. I see healthy, vibrant people not being weighed down by the worry of illness.  I'm jealous of anyone living in a warm climate and not having to deal with this unnerving winter weather. (How many more days until spring???)

Feeling this way  won't change anything, and it's a destructive and useless way to be. But what can I do to change it?

How I focus on the positive while living (and aging) with MS

As we age, it's important for us to learn how to focus on getting through the difficulties of life as best as we can. There are a myriad of ways to do this.  Here are some I'm going to try.  How about you?

1. Do what you love.  Playing a sport, spending more time with your children, joining a gym, writing or knitting, or picking up a hobby you've put aside are some ideas.  Refocusing your attention can revitalize and refresh your mind, body and spirit.
2. Cognitive Behavioral Therapy: Replacing negative thoughts with positive ones is invaluable.  "Cognitive-behavioral therapy is based on the idea that our thoughts cause our feelings and behaviors, not external things, like people, situations, and events.  The benefit of this fact is that we can change the way we think to feel / act better even if the situation does not change." ~National Association of Cognitive Behavioral Therapists  
3. Acknowledge your blessings : Acknowledging the blessings in your life - family, friends, accomplishments at work - is a powerful tool.  Focus on them. Then let the people in your life know how much they mean to you.  You'll be surprised at how good that will make you feel.
4. Take time for yourself - Take a bubble bath and light some candles for a relaxing getaway from the world.  Get a hot stone massage.  Take a walk in the park to surround yourself with the beauty in nature.  Watch an old movie that makes you laugh.  Do something that feels good and rejuvenates you.  You deserve it.
5. Set daily goals for yourself - Use the ease of a program like Google Calendar to schedule daily personal tasks that make you happy. These personal goals will help you feel good, and are important for your well-being.
6. Don't allow any disasters to pull you down -  Remind yourself of your successes, and remember the people who love you unconditionally and support you. Life is filled with ups and downs. What's important is how you handle them.

The miracle of everyday blessings

My fabulous cousin Gabrielle always knows the right thing to say. She empowers me with her wit and wisdom, especially when she says that when we're tested in life, it only means something awesome is waiting to happen.

I think Gabrielle's advice aligns itself with the quote from the Bible that's been on my mind. I finally understand that the strength we need to endure lies within ourselves. We must believe in the miracle of every day blessings, and the knowledge that we have the power to change how we think and feel.

How do you stay positive when life gets you down? 

Other posts you might enjoy:

• Facing Life's Challenges: Finding Your Inner Strength
• What Did Paul McCartney Remind Me And What Does It Have To Do With Handling Stress?
• How A Boy, His Grandfather And A Bottle Of Port Reminded Me Of My Blessings

The post When Life Keeps Handing You Lemons: Handling The Difficulties Of Life appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

There are moments in our lives that move us.  Moments that quietly present us with a gift so magical that they weave a permanent place in our hearts.

Listening carefully and quietly, we may notice these unforgettable moments shouting as if to say, “Hey, slow down! I’m about to do something grand, so live in the NOW because you won’t want to miss this.”

Last night, I had such moments. And as they busily attached themselves to my heart, I realized they would sum up best what my past year has been about.

Blessings.

My son was born in 1992, and this month he turned 21.  At birth, my father, a wine aficionado, knew that 1992 was a great year for vintage port.  He presented us, and our infant son, with a case of it, and affixed a handmade sign to the top of the crate that looked something like this:

Dad attached this sign to the case of port, his gift to our son the year he was born

Through the years, we’ve talked of how this vintage port will taste after 21 years, how luscious its fruity flavors will feel on our tongues, and how we’d marvel at its rich and velvety texture.

Carefully decanting the port to remove any sediment

The anticipation was palpable.

The moment had finally arrived.

Last night, we dined on Chinese food at my parents' apartment. It was an intimate and informal gathering of the five of us.

For me, the show's stars were not the food or the conversation.  It was not the pleasantries exchanged, the sports scores watched, or the discussion about The Kennedy Center honorees.

As we slowly sipped our first taste of this extraordinary port, I drank in the moments that presented to me as a perfect year-end gift.

I lovingly watched these two men talk and sip, being ever so mindful to realize what was happening.

While everyone is busy publishing their year-end reviews, “best” of series, top 10 lists, what they did, and who they spoke and collaborated with in 2013, my post is very simple.

Grandfather and grandson, 2013

It’s about a boy and his grandfather and the opening of a cherished bottle of vintage port.

It’s about two of the blessings I have in my life. And their gift to me is a new patch on my heart.

What are your blessings?

The post How A Boy, His Grandfather And A Bottle Of Port Reminded Me Of My Blessings appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.

Once upon a time there was a little girl who wanted to grow up and have a family of her own.  She dreamed of meeting a knight in shining armor that would sweep her off her feet and take her away to live happily ever after.

S-c-r-a-t-c-h.

Once upon a time there was a little girl who loved to read.  She loved reading about strong-minded, resolute women who were making headlines, like Gloria Steinem and Bella Abzug.  She thought it’d be cool to someday burn her training bra.  But she was too young and naïve at the time, so she continued to dream about her knight in shining armor and having a family.  Would the knight be willing to do housework?

C-r-o-s-s-o-u-t.

Once upon a time, before MS

Once upon a time there was a little girl who wanted to live a long and happy life. She dreamed of someday marrying her Prince Charming and, together, they’d have a happy and healthy child.  She loved to write, and always enjoyed helping others in need.  She always knew that somehow she wanted to find a perfect balance between her family life and a life filled with passion.

Bingo.

But, alas, not all little girls’ dreams come true.  Life simply doesn’t work that way.  As John Lennon famously wrote, “Life is what happens when you’re busy making other plans.”

So far, my life lessons were:

• Barbie taught me what a perfect body looked like, didn’t she?
• Peter Pan taught me that dreams do come true, didn’t he?
• James Taylor taught me I’ve got a friend. Would that always be true?
• Marlo Thomas taught me “That Girl” was the personification of what every young woman could have when working in The Big City, right?

Life (and dreams) after MS

But life has a mind of its own, and sometimes we learn harsh yet valuable lessons.  John Lennon was right.  What we envision for ourselves and what life hands us are two different things.

• I was diagnosed with MS at age 26.  I was totally unprepared for that sudden bend in the road.
• I had two miscarriages, and believed I’d have to prepare for a life without children.

When I finally became blissfully pregnant for a third time, it was the charm.  Two weeks shy of nine months, I gave birth to a beautiful, healthy little boy.

Dreams do come true for those with MS: A son's blessing

My son has been a blessing to me every day of his life.

The life I envisioned for myself so long ago was finally beginning to unfold.

What my son has taught me about life

Today is my son’s 21^st birthday, and he is the whole reason I’m writing this post.  I wrote it because I want him to understand that no matter what I learned in my childhood – the joys, frustrations, loves and heartaches, mine is a different road than the one he is traveling.

He has his own journey.

I want him to know he has taught me more than anyone or anything else will.

He’s taught me, through his genteel manner and by his example, about patience, understanding and inner strength.

And he’s given me more love than I ever imagined.

The gift of unconditional love and good port

Twenty-one years ago, my father’s gift to him was a case of fine port, with instructions that the first bottle be opened on his 21^st birthday.  In the next week, I look forward to all of us being together to open the first beautiful bottle from this case (with his permission, of course!), and to toast to his happiness on his big day.

May he always be surrounded with unconditional love.  May he find his own brand of happiness, with a life filled with purpose and compassion, according to his own desires and principles, and on his own terms.

As my beloved uncle always ended his letters to me, "I hug you with my words."

Happy 21^st birthday, my dear son.

Other posts you might enjoy:

• What's So Magical About Twenty-Five Years Of Marriage? Tevye And Golde Taught Me A Lot
• My Story: Life Through A Lens Or How I Finally Made Peace With My Glasses (Includes My First VIDEO)
• Changing The Face Of Disability Into The Face Of Ability And How Hollywood Helped Us Change It

The post Life Lessons On The Occasion Of My Son's 21st Birthday: Our Journeys Are Unique To Each Of Us appeared first on An Empowered Spirit | A Life with Multiple Sclerosis.