I’m being followed by a Moon Shadow

Posted on February 28, 2014 by MSAA

By: Matt Cavallo

When I was diagnosed with MS in the spring of 2005, I was completely devastated. In my darkest hours, I believed that my hopes and dreams were over. I was convinced that I was going to lose my job and wouldn’t be able to pay any of my bills. I thought that Jocelyn, who was only 27 at the time, should leave me and start over with someone who didn’t have a chronic illness. I didn’t think it was fair for her to care for a sick man at such a young age. I also didn’t think that we would be able to have children. Not only was being a dad a dream of mine, but I didn’t want to deprive Jocelyn of the joys of motherhood. Or if we were able to have children, I didn’t want to be a burden on the family and have my kids growing up with a disabled father.

I stayed in this depression for months after my diagnosis. I built a wall around me and pushed everyone out to the periphery. Multiple sclerosis had changed me. The man in the mirror no longer looked like me. My spirit had been drained and replaced by a pale, sad man with raccoon eyes. Not only did I not look like myself, I wasn’t acting like myself either. I was becoming short with people and increasingly negative. Other times I would be quiet and retreat within myself. Being an extroverted conversationalist, those around me at the time couldn’t figure out why I wouldn’t carry on a simple conversation.

A lot of it had to do with how I felt the world around me perceived me. Many people who talked to me after my diagnosis weren’t sure what multiple sclerosis was and expected me to be in a wheelchair when they saw me. Others would say positive things like, “you look great” or “it could be worse”. Most compliments ended up making me feel worse and more isolated. I felt like no one, not even Jocelyn, understood me. I felt like I was alone on an island and that no one else on the planet knew what it felt like to be me.

As soon as I was able to operate a car again on my own, I drove by myself to a beach I had often frequented as a child. I needed to be there by myself, alone with my thoughts. I sat behind the wheel of my Ford Ranger in a parking space near the beach wall and looked out towards the ocean. Trying to make sense of my diagnosis, I watched the waves crash.

Between the sound of the waves, a song popped into the jukebox of my mind. It was a familiar song, one from my youth: Moon Shadow, by Cat Stevens. I started humming the lyrics to the chorus, but couldn’t remember the words. I needed to know why I was thinking about that song at that moment. I sped off toward my parent’s house and grabbed the Cat Steven’s Great Hits CD from their collection. I then got back in the truck and drove with Moon Shadow on repeat.

I listened intently to the song and concentrated on the message behind the lyrics. The lyrics spun a story of a man who lost his legs, eyes, hands and mouth. It struck me that I could lose these same functions because of MS. I realized that the initials of Moon Shadow were MS. Then it hit me: I was being followed by a Moon Shadow. A wave of emotion hit me. I was too young to be disabled. There was so much I still wanted to accomplish in life. I felt lost and scared for what my future held.

As I listened to Moon Shadow for the seventh time in a row, my panic turned to calm. Although the man in the song knew he could lose all these physical functions, he was going to be alright. That was the first time I realized I’m going to be alright too.

I was still too overwhelmed at that time to communicate my fears and feelings to others, but I did start to journal and capture my emotions on paper. Slowly over time my notebook of blue-lined paper transferred into my memoir, The Dog Story. The Dog Story gave me a voice and the confidence to help others who were living with a chronic illness and experiencing the same things that I did. I want other patients to know that they are not alone. Most importantly, I want to share a message about hope, the powers of love and finding strength in your darkest hour.

Today, I no longer feel ugly, isolated or alone. I am living a life that I never dreamed possible. Jocelyn never left me despite my attempts of pushing her away. Now, we have two beautiful boys that our world revolves around. I am the dad that I always wanted to be coaching their baseball teams and doing normal dad stuff. My career is helping other people like me and using the story that I was once ashamed to tell to inspire others that if I can do it, they can too. I still walk my dog every day, whether I feel that I am strong enough or not. And while driving during time of quiet reflection, I still find myself humming along to Moon Shadow. And I am thankful.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Did Cupid Miss? Finding True Love Wherever it Lies

Posted on February 26, 2014 by MSAA

By: Jeri Burtchell

Ah, February! The prelude to spring and the time of year when happy couples profess their love for one another on Valentine’s Day. What could be wrong with that?

Well, sometimes real life falls short of “Sleepless in Seattle”. A study published in 2010 says that folks with MS have a greater likelihood of ending up divorced than other couples. Odds are, someone with MS who is reading this spent Valentine’s Day alone. No amount of chocolate can make that pill any less bitter to swallow.

When I learned the MSAA blog theme for February would be “love”, I decided to explore the less traveled paths to the heart. Instead of romantic love, this is for all of you who are facing MS head-on and doing it solo. For everyone who thinks the groundhog predicted six more weeks of loneliness.

Everywhere you look in early February, friends are doting on their better halves in tweets and status updates. Pictures of happy couples abound. Even those with MS seem happily connected to the “best husband ever” or “the most amazing wife.” You don’t see anyone saying “I’m single, yay me! I’m doing just fine.”

But there is love beyond romance and I want to draw your eye to it. If you focus on the love that you do have, then perhaps it will ease the sting of having to say “table for one, please.”

Most of us have the love of family that surrounds us. Think about that sister or brother, mother or father, aunt or uncle who is there for you. Helping you cope, caring how you feel, sharing good times and bad. That is love.

Even if you are divorced, there’s a good chance you have kids. They love you, right? Don’t roll your eyes at me that way. Romantic love may come and go, but the bond between parent and child will last a lifetime. That is also love.

No kids, no family, no significant other? Don’t stop looking for the love that seems elusive. Just look a little closer. You may be overlooking a love right under your nose. Literally. Look down. See some little eyes in a furry face looking back up? That, my friend, is love…or it could be hunger. (Nah, it’s probably love).

The unconditional love of a pet is real and powerful. Besides love, the Centers for Disease Control says that having a pet can lower our blood pressure and triglyceride levels, plus chase away our loneliness. They also give us a reason to exercise and opportunities to socialize while we’re at it. Just ask Sheryl about her Teeny Tiny Mighty MS Mascot.

What’s that you say? You have no family, no close friends? Your kids are grown and gone? You’re allergic to pets? All hope is not lost. The camaraderie of an online community may fill the emptiness you feel. Reach out and connect. Meeting others with MS can be rewarding, reassuring and often leads to lifelong friendships. I can honestly say some of the most meaningful friendships I have now began online.

Last but not least, there’s one final love you’ve had by your side all along, although you may have never noticed. You overlooked it while you were pursuing Prince Charming or Mrs. Right. It’s the person who will be by your side through thick and thin no matter what. It’s you.

When you learn to be your own best friend you’ll never be alone. Explore hobbies that give you satisfaction. Read books, go jogging, take a bubble bath, buy yourself a little something. When you see that gorgeous sunset, your first thought won’t be “Oh, if only I had someone to share it with.” Don’t gauge the pleasure of the moment by someone else’s reaction. It’s okay to love the sunset all by yourself.

So if February isn’t your favorite month and all this lovey-dovey stuff your friends are sharing gets you down, just try to focus on all the other love that surrounds you. And cheer up! March is just around the corner and we can soon celebrate MS Awareness Month together.

My parting shot to the romance of February as it heads out the door is, “Yay me! I’m doing just fine.”

References:

http://www.ncbi.nlm.nih.gov/pubmed/20483882

http://www.cdc.gov/healthypets/health_benefits.htm

http://contributors.healthline.com/family/my-teeny-tiny-mighty-ms-mascot

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Connecting through Storytelling

Posted on February 24, 2014 by MSAA

By: Matt Cavallo

When I was first diagnosed with multiple sclerosis, I was afraid. I didn’t want anyone to know that I had this potentially disabling disease. I was afraid to tell my boss for fear of losing my job, and I was afraid to tell my friends because I didn’t want them to think of me differently. I started pushing away the few people in my life who did know what I was dealing with, because I was afraid of them seeing my condition progress. This included my wife. I was stuck in a deep depression. For all intents and purposes, my life post-diagnosis was being spent lying in my bed watching daytime reruns.

This all changed when my neurologist at the time in Boston asked me to come out and speak at a patient event. She wanted me to tell them the story that I had shared with her about how I got my dog. I was nervous. Not only had I not been telling people about my MS, but now I was going to be up on a stage talking to a big group of strangers about an intensely personal struggle that was raging inside me. That night came, and it changed my life forever.

In an instant, surrounded by a group of my peers living with multiple sclerosis, I realized that I wasn’t alone. By sharing my story that night, I felt a weight lift from me, as the people around me opened up and started sharing their story, too. I was no longer ashamed, embarrassed or depressed that I had MS and was not the man I used to be. Instead, I felt empowered and was embracing the opportunity to connect with others on the most personal of levels, united by this MS tie that binds us.

Sharing my story has opened up doors to places that I had never dreamed of before. It has taken me from coast to coast, putting me on TV, exercise DVDs, newspapers, radio shows, and even onstage in Las Vegas. Had I given up on myself back when I was diagnosed in 2005, I wouldn’t be living these dreams and ambitions that I never knew I had. While there have been many personal accomplishments since my diagnosis, it is always the personal encounters that I value the most.

This is just one example of thousands I have experienced on my journey:

At a restaurant next to the Savannah airport on one of my recent trips, I sat down next to a man who I would say was probably in his twenties. I turned and looked at him and asked, “What is good here?”

“Try the Tybee Island, and you can’t go wrong with a burger,” he replied.

I took his advice and complimented him on the local beer recommendation as we started talking. He was a pipefitter on a job assignment from South Carolina. He was missing his wife and little boy, but still had some time left on his job.

“What brings you to Savannah?” he asked.

“Storytelling,” I replied.

He was intrigued by my answer, so I explained to him that I go around to hospitals and talk to doctors, nurses, therapists, and other clinical staff about the patient experience-and that I also speak to patient and caregiver groups.

“So,” he says, “what kind of doctor are you?”

“I’m not,” I replied, “I’m a patient. I tell them the story of how I got my dog.”

He was captivated and wanted to hear the dog story. So, I told him the story of my symptoms, that I lost my ability to walk and go to the bathroom on my own, and how my diagnosis of MS led to my wife getting me a dog for my birthday, and ultimately my promise to walk him every day. I told him that it had been eight years since then, and I have still kept my promise. I could tell by the look in his eyes that he needed a story like mine on that night.

My food comes, and I order another beer. We go on to talk about the kids. He settles up his tab, shakes my hand and pats me on the back.

“It was great meeting you,” I said. He returned the sentiment.

I finish my burger and beer, then I ask the bartender for my bill. She turned and looked at me and said, “That man that just walked out paid for you and the tip.”

My jaw dropped. I wanted to thank him and say that it wasn’t necessary. I ran out to the parking lot, but he was gone. I couldn’t believe that a complete stranger, a kid in his twenties and someone who had never heard of MS, would surprise me with that selfless gesture. All I did was share my story with him.

Encounters such as this have reinforced to me the power of storytelling. Your story is your power. Many of us living with multiple sclerosis get stuck in the same depressive rut that I experienced when I was first diagnosed. When you are able to open up and share your story with others, you will realize that you are not alone. Each one of us living on this planet has some cross to bear. Ours just happens to have a name: MS. Sharing may make you vulnerable, but you’ll also find that when you open yourself up to others, you truly see the good in people. To the stranger in Savannah, thanks again for the burger and the beer. I will pay it forward.

Newly Diagnosed with Multiple Sclerosis?

Posted on February 21, 2014 by MultipleSclerosis.net

People often experience the symptoms of multiple sclerosis long before they receive a formal diagnosis. Getting the diagnosis can result in a whole host of emotions, including confusion, stress, anger, or even relief. Knowing the cause of nagging symptoms can feel like a weight off your shoulders, but learning you have MS can also be a lot to digest.

We asked the MultipleSclerosis.Net community about the tips they would share with someone who has recently been diagnosed with MS. Nearly 300 people responded with some great suggestions. Here is a summary of the recommendations:

Do your research and advocate for yourself:

Stay open to ideas outside of mainstream information, but don’t believe everything you read online
Education is one of the most powerful tools you (and your caregivers) have
Find the right doctor and communicate openly – ask lots of questions and be completely honest (even with the most embarrassing symptoms). If you’re not comfortable, find a new doctor!
Make sure your doctor is knowledgeable in treating MS
Keep all your medical records

Take care of yourself*:

It’s important to manage your overall health – physically and mentally
Eat plenty of fruits and vegetables (avoid junk food)
Find ways to stay active. Even exercises that are not too strenuous will help you stay strong and limber
Give yourself time to get the rest you need
Don’t stop taking medications just because you start feeling better
Many people find that they are extra sensitive to extreme temperatures, particularly heat. Try to get out when the weather won’t be as bothersome and keep your body temperature as regular as possible

Make sure you have a strong support system:

Finding an MS buddy an be an enormous health
Work with associations and experts that can help you through the processes
Look to religion if it’s helpful for you
Keep a network of friends and family that can help you with even the simplest tasks when you need it
Keep your stress levels in check:
Try to keep stress levels as low as possible – stress can be your worst enemy with MS
For times when stress is unavoidable, develop ways to relieve/manage stress before it takes over and affects your health (yoga, meditation, friendship, etc.)

Keep a positive attitude, even when it’s not easy:

Know your limitations but find ways to continue enjoying life
Find something to be happy about every day
Remember that having MS is the “new normal” and be kind to yourself as you adjust
Take each day at a time
Go through all the necessary emotions – be mad, sad, angry…. then move on.

What advice would you share? Are there things you wish you knew at diagnosis?
*Please consult your doctor before making any changes to your diet or exercise regimen.

Comprehensive MS Research Update Now Available from MSAA

Posted on February 19, 2014 by MSAA

The 2014 edition of MSAA’s MS Research Update is a comprehensive overview of the latest research findings on the FDA-approved disease-modifying therapies, as well as many e,perimental treatments. This update features ground-breaking studies not only with medications, but also in areas such as stem-cell research, therapies for myelin repair and protection, biomarkers, genetic studies, and more.

In addition to the e,citing research aimed at relapsing forms of MS, a number of studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, studies involving progressive MS have been highlighted.

Read MSAA’s latest MS Research Update here.

Intimacy- It’s Not Just About the Physical Relationship

Posted on February 14, 2014 by Samantha Schech

Often when one thinks about intimacy, they think of sex. Intimacy is a process that can involve sex, but does not necessarily have to. Intimacy is defined as “a close, familiar, and usually affectionate or loving personal relationship with another person or group” (www.dictionary.com).

There are various forms in which an intimate relationship can occur. One form of intimacy is intellectual intimacy where two people “exchange thoughts, share ideas and enjoy similarities and differences between their opinions.” If they can do this in an open and comfortable way, then they can become quite intimate in an intellectual way. This relationship can occur with a close co-worker or neighbor, in an on-line forum, or with a pen-pal.

A second form of intimacy is experiential intimacy. With this type of intimacy, individuals would get together to “actively involve themselves with each other.” This can differ from a friendship in that the individuals do not exchange thoughts or feelings. They are just involved in mutual activities. This relationship could occur in an aerobics class, or at a religious center, for example.

A third form of intimacy is emotional intimacy, where two individuals can “comfortably share their feelings with each other or when they empathize with the feelings of the other person, really try to understand and try to be aware of the other person’s emotional side.” This relationship typically occurs between partners, family members, or close friends. Emotional intimacy may also occur in support groups, where individuals connect on an emotional level because they share similar experiences.

Every intimate relationship does not have to include all the different aspects or types of intimacy that have been mentioned. Many intimate relationships can exist in any one of the forms mentioned, or any combination of those forms.

This Valentine’s day, be aware of yourself and your emotional needs. Start with the form of intimacy where you feel most comfortable, and reach out to someone close to you. You do not need to be in a physical relationship in order to experience intimacy.

References:

https://www.counseling.ufl.edu/cwc/types-of-intimacy.aspx

http://dictionary.reference.com/browse/Intimacy

Tips for Celebrating Valentine’s Day

Posted on February 12, 2014 by Angel Blair

The annual holiday that celebrates the expression of love with tasty treats and heartfelt greetings actually has a bit of a mysterious origin. There are different notions and theories that describe this lover’s holiday that have been depicted throughout ancient times, though its actual history is still undefined. To learn more about some of the history associated with Valentine’s Day and its legends, see http://www.history.com/topics/valentines-day/history-of-valentines-day.

No matter its origin or historical connotation, Valentine’s Day remains one of the most celebrated holidays in our history. It is the second largest card-sending holiday behind Christmas, with women purchasing the majority of the greetings sent. Candy hearts, chocolates and flowers are exchanged to signify the celebration and have been widely recognized as hallmarks of the holiday. But these gifts aren’t the only way to express your gratitude and love for another person. Spending quality time with people you love, whether it be family, friends, or a significant other, can show how much you appreciate someone.

Here are some tips on how to celebrate the upcoming holiday:

Invite a friend or family member to celebrate the day with you if you’re not romantically attached. The day is about spending time with those you care for; it doesn’t have to be exclusively for couples!
Why not stay in? You can make the day about spending time together just watching a movie or playing a game at home.
Think creatively and go homemade style for gifts! Valentine’s Day doesn’t have to break the bank, why not make something to give the person you care for?
Use the day to express to others how much they mean to you. Tell someone you love them and that you appreciate them and what they bring to your life, not just on this holiday, but all year round!

However you plan to celebrate Valentine’s Day, think of its mystery and indefinite nature, as this provides opportunity for you to find your own niche in making the day special!

Wait a second, did you get that?

Posted on February 10, 2014 by MSAA

Being able to effectively communicate with others is one of the most basic human needs and functions. Babies and young children cry or throw tantrums when they don’t get what they want or need because they haven’t discovered any better ways to express their concerns or desires. They need to be heard, but they can’t express their concerns directly so they resort to raw emotion and yelling to get their needs met.

As we grow older, we are taught that there is a time and place for everything and that generally when speaking in public (school, work, etc.), you need to do your best to control your emotions and try to calmly verbally address your needs or concerns. For example, in a business meeting while you might feel like rolling your eyes at an inane comment, or may even feel like yelling when your point hasn’t been heard or addressed after asking for the 100^th time, responding in either of those ways in a work setting is likely to get you a reprimand at best and unlikely to get you what you really wanted (for example a shorter meeting with highlighted objectives, or a specific problem or concern to be addressed).

These communication issues don’t only happen in the workplace setting as you might have times where you feel like your doctor is just not hearing what you are saying or a relative is being insensitive or un-relatable. When you end up in these frustrating situations, you might have the impulse to cry or yell, and sometimes that might supersede your public decorum, but these also may be good times to evaluate your situation and how you could better try to communicate your need.

So how do you take a step back when you need to make sure something is heard?

You may need to take five minutes before speaking to give yourself time to process a more tactful response. You might pretend you are re-explaining the situation to a totally
different person. You may also ask the other person to repeat back to you your concern in their own words, so you can make sure they “got it.”

Feeling misunderstood or like no one is listening can heighten your anxiety, stress, and frustration around a situation. Others can contribute to misunderstandings and miscommunications if they are not being active listeners and receptive participants in the conversation, but try to do your part. Try and emote effective communication. If the other party really is not listening, or you can’t overcome personal barriers, you can try to remediate the situation by going to others with your concerns (in the worst case scenario finding a new doctor or changing jobs…. although I’m told you can’t get a new family).

Can you share your tips for how to communicate better in difficult situations?

February Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on February 7, 2014 by John MSAA

MSAA is very proud to present our Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the MSAA Art Showcase submissions.

February 2014 Artist of the Month:
Lucinda Mierek – Anderson, SC

“My art has changed because of my fatigue and loss of concentration. My images used to be tight and are now loose. The content was edgier and is now more mainstream. However, my color use is getting better possibly because I’m losing my vision and am trying to compensate. I need more energy to do my art and haven’t figured out how to get it.

Even with my problems I feel fortunate. I still walk, drive, and tend to my yard.

My daughter and I still enjoy our time together. She pushes me to do more art. She seems to be my biggest fan!

‘Pretty Petals and Peaches’ is acrylic on matte board. It is very loose in comparison to the detailed older work of mine. I like the color usage of my “MS era.” I have learned to take life a little less intensely and use color more intensely. My work has changed for the better.”

MSAA’s Next Art Showcase for 2014

Thank you to all of the artists who were part of last year’s Art Showcase for artists with multiple sclerosis. The wonderful artwork and personal stories have been inspirational to many who have visited our online gallery and who have sent and received online art cards, celebrating the lives and talents of people living with MS.

MSAA will soon debut the 2014 Art Showcase in March as part of MS Awareness Month. So, get ready for some new artwork and stories to enjoy! As before, each month we will share with you an Artist of the Month with a new online card that you can send to friends and family to spread awareness of MS, while showcasing the wonderful talents displayed by artists with MS.

You still have time for one more look at last year’s collection! Then, get ready to enjoy the many new works to be featured in MSAA’s 2014 Art Showcase.

Check out the complete MSAA Art Showcase online gallery of artists with MS.

The Expression of Love

Posted on February 5, 2014 by Samantha Schech

Valentine’s Day is a day where we open our hearts and make every effort to shower people with our love. But for some, the open expression of love is a challenge. Each individual chooses to share their love in a different manner; some opt for gifts, while others may write poems to express their love.

It is important to understand the ways in which you like to receive love and it’s important to have an open conversation with your partner regarding the ways in which you like to receive love and the ways in which you show your love.

There is a book by Gary D. Chapman called The Five Love Languages. In this book, the author believes in the importance of being able to express your love in a way that is meaningful to you and in a way that your partner can understand.

Everyone expresses their emotions differently and has a different need when it comes to love. This book helps to identify yourself and your emotional need, i.e. Love Language. For example, my love language is Acts of Service; I choose to express my love through the act of doing something for someone else. If I were in a relationship with someone who needs Words of Affirmation to feel love, the relationship may be stressed because of the differences.

Understanding and knowing your Love Language provides you with a great opportunity to have an open discussion with your partner about your feelings and needs in your relationship. Take some time to discuss this with your partner and find ways to identify it in your day to day. Perhaps true acts of love are being overlooked, simply because they are not in your Love Language.

This Valentine’s Day, how will you choose to express your love?

MSAA does not endorse the purchase of any specific product(s). Rather, any brand names are mentioned solely as an informational resource.

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