Five Women Who Keep Me #strongerthanMS

World MS Day is May 27 and The MS International Federation is asking people worldwide to celebrate their thoughts about “breaking down the barriers to access” and sharing what makes them #strongerthanMS.

#strongerthanMS

I’ve thought a lot about this and came up with two conclusions:

I thought it’d be appropriate to celebrate World MS Day by introducing you to five special women in my MS community. They hold a special place in my heart and have helped me stay #strongerthanMS.

(NOTE: It’d be impossible to write about all of the people who have made me #strongerthanMS for the last 28 years. I wish I could thank every single one of them.)

June Halper - I’ve known June since I was first diagnosed. She was my first nurse and taught me not only about MS but also that a diagnosis is only a small part of who I am. There isn’t enough room on my blog to list all of June’s incredible accomplishments. Many years ago I remember her saying, “I won’t rest until they find a cure for MS.” She truly meant it. #strongerthanMS

World MS Day will take place on May 27, 2015 throughout the world – a bit redundant but true.  Actually, the world of MS occurs every day in the lives of all those affected by MS: those carrying the diagnosis, their family, friends, and social circle. Today MS implies hope, empowerment, and new possibilities due to changes brought about by research into the cause, treatment and future cure of the disease.  The world of MS has expanded for the professional community as we have resources and tools for caring, sharing, education, and wellness.  So here’s a toast to those who came before us who provided us with these tools; and a toast to the future full of possibilities for a cure, full remission, and reversal of the disease.” ~June Halper, APN-C, Chief Executive Officer of Consortium of Multiple Sclerosis Centers, Executive Director or International Organization of Multiple Sclerosis Nurses, MSNICB

Lisa Emrich – I met Lisa (check out her blog Brass and Ivory) on LinkedIn when she recommended me for my first paid writing job. We finally met in person in 2011 and I became enamored with her gentle and caring ways. I have a lot of respect for Lisa and her vision of creating a much-needed directory called Carnival of MS Bloggers, a site that showcases the growing number of MS blogs now available. I am honored to call Lisa my dear friend.

#smarterthanMS

Barriers are not always physical, financial, or social; sometimes they can be emotional. I am thankful for the love and assistance from family members, and my therapist, for helping me to bring light into the darkest corners of my inner self so that beauty, love, and life can be freely shared." ~Lisa Emrich, Multiple Sclerosis Patient Advocate, iConquerMS.org, HealthCentral.com, MultipleSclerosis.net, RheumatoidArthritis.net

Tresa Miller – I first met the hysterically funny and deeply passionate Tresa when we were peer advocates for a pharmaceutical company. We struck an immediate bond after she called me “Cat” and her “Yankee friend.” I guess if you’re from Indiana my Jersey "accent" seems kind of funny! She’s a force to be reckoned with and has an innate ability to make everyone feel renewed and energized despite MS. She’s truly one special lady.

#strongerthanMS

The Tri-State Multiple Sclerosis Association in Evansville, Indiana was my go-to resource both at diagnosis and through the 19 years with this disease. They assigned me a mentor at diagnosis and I really don’t think anything has ever been more appreciated. To get the opportunity to speak with someone that was not only in my shoes but also in my head as well was invaluable. She lifted me up, gave me practical advice and hope. Physicians give you clinical advice, but your own advocate gave me the truth. As a result, I live a beautiful life and am reminded as I talk to newly diagnosed patients to count my blessings every day. If I’m walking in a straight line and have my eyesight, I can do anything!” ~Tresa Miller, Owner of Grateful Threads Fabric

Dorothea “Dottie” Pfohl – I met Dottie while working at IOMSN (International Organization of Multiple Sclerosis Nurses). A dedicated nurse, Dottie is a ball of energy with a heart of gold who deeply cares about patient care. Recently retired, I have no doubt Dottie’s golden heart will continue to reach patients in many meaningful and caring ways.

#strongerthanMS

Dottie with her beloved grandchildren

Thinking about barriers and accessibility my first thought was of nephew Peter Fischer who, despite severe limitations became an architect and started a business and advocacy career around accessibility. I also reflected on the personal and realized that this year I stumbled across the barrier of retirement from my role in the MS Center and what that step would mean. Going forward I sensed a shift from what I do to who I am. The barrier of what I accomplish crossed I can focus less on what I have done or will do to being who I am now. It's not just endless vacation but it is a little victory and like folks who live with MS it is one I claim with pride. Every barrier broached is a finish line.” ~ Dorothea "Dottie" Cassidy Pfohl, RN, BS, MSCN, University of Pennsylvania Department of Neurology (retired)

Christie Germans – Christie is a powerhouse despite having MS. Her energetic spirit is palpable whether I’m reading her posts or speaking to her online. On her award-winning blog, The Lesion Journals, she introduces herself as “a number crunching photographer who loves riding my bike really, really fast!” Christie is the embodiment of joy, laughter and hope, and I look forward to meeting her in person later this month.#strongerthanMS

There are many people and groups who make a difference in my life with MS that it is impossible to list them all but here are some on my list: Kate Milliken, via the really cool Moodifier, for helping me stay true with my emotions. The initiative iConquerMS for empowering me to fuel MS research with my health data. The Multiplesclerosis.net blog for keeping the MS stories real and honest. This MS Life for creating a compassionate support program. Race to Erase MS for funding millions of dollars for MS research, and even Phil from the Amazing Race who motivates me to ride my bicycle. These are some of my heroes who have helped me grow to become #strongerthanMS. Most of all, though, are my fellow MSers who remind me each day to live everyday as full as possible.”

I want to thank June, Lisa, Tresa, Dottie and Christie for being such strong, vital and empowering women. The positive impact you have on the MS community helps us all feel #strongerthanMS.

About World MS Day (from worldmsday.org): "World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by Multiple Sclerosis. World MS Day is the only global awareness raising campaign for MS. Every year, the MS movement comes together to provide the public with information about MS and to raise awareness on how it affects the lives of more than 2.3 million people around the world."

Book Review: Arlene Alda's "Just Kids From The Bronx" (Includes Interview)

I introduced myself to Arlene Alda at a recent event I attended that featured her husband as guest speaker. I was interested in her and her upcoming book, "Just Kids from the Bronx: An Oral History: Telling It the Way It Was."

Arlene Alda

Abe Rosenthal. Carl Reiner. Martin Bregman. Leon Fleisher. Lawrence Saper. Mary Higgins Clark. Jules Feiffer. David Yarnell. Milton Glaser. Mildred S. Dresselhaus. Regis Philbin. George Shapiro and Howard West. Mark Cash. Arlene Alda. Michael Brescia. Emanuel Azenberg. Avery Corman. I.C. Rapoport. Colin Powell. Lloyd Ultan. Dion DiMucci. Barbara Nessim.

I was nervous. I guess partly because I've long admired Mrs.Alda for her many accomplishments. She received the prestigious Fulbright Scholarship and realized her dream of becoming a professional clarinetist. She played in the Houston Symphony with Leopold Stokowski, raised three daughters and changed career paths by becoming an award-winning photographer and author.

So I was thrilled to have a chance meet her, if only for a few short moments.

To her I was a complete stranger, so I didn't know what to expect as I tapped her on her shoulder. She couldn't have been nicer, and I immediately felt at ease.

She listened with keen interest as I recited the elevator speech I'd been practicing all day, the one about my mother who was about her age and was also born in the Bronx. I told her that as a child I was more interested in hearing stories from my father about his escape from Germany than I was hearing my mother recite stories about being born in the Bronx.

Arlene Alda

Mrs. Alda's book will change all of that, Mom!

Her book of childhood recollections, including her own ("We lived in a one-bedroom, one-bathroom apartment. Mother, father, older sister, older brother, the mutt fox terrier Spotty, and me") collectively constructs a loving portrait of a borough, despite its difficulties, that bred countless residents who not only contributed to society in extraordinary ways, but who also felt a common love for their beloved Bronx.

Al Pacino. Robert F. Levine. Suzanne Braun Levine. Steve Janowitz. Margaret M. O'Brien, S.C. Joyce Hansen. Robert Klein. Julian Schlossberg. Anonymous. Rick Meyerowitz. Joel Arthur Rosenthal. Millard S. Drexler. Andy Rosenzweig. Kenneth. S. Davidson. Daniel Libeskind. Valerie Simpson. Arthur Klein. Dava Sobel. Robert F.X. Sillerman. Maira Kalman.  

Every vignette is a true gem, bringing us back to our own childhood when we'd sit on our front stoop to listen to our grandmother's childhood stories. These stories are truly American, and because the Bronx gave birth to so many creative influencers, by the end of the book you'll wish you were born there too:

Abe Rosenthal (Former Executive Editor of the New York Times) recalls his parents as "pioneers" who moved from the tenements in the Lower East Side of Manhattan to Decatur Avenue in the Bronx.

Funnyman Carl Reiner recalls his love of comedy being sparked by a family of funny people who accepted humor as an important force in life.

Boyhood friends George Shapiro and Howard West (agents, producers and personal managers) recall suffering along with the underdogs, the Brooklyn Dodgers, until the color barrier was broken by the great Jackie Robinson.

Melvin Glober (Grandmaster Melle Mel, award-winning rap artist) who narrowly escaped being on the wrong side of the law because he listened to his sage mother, his strict teacher and his own inner intelligence.

Sam Goodman. Chazz Palminteri. Daniel Hauben. Louise Sedotto. Steve Jordan. Neil deGrasse Tyson. Michael R. Kay. Melvin Glover. Jaime Rodriguez Jr. Luis A. Ubinas. Bobby Bonilla. Sotero Ortiz, Wilfredo Feliciano and Hector Nazario (members of Tats Cru). Majorca Carter. Carlos J. Serrano. Renee Hernandez. Ruben Diaz Jr. Jemina R. Bernard. Amar Ramasar. Gabrielle Salvatto. Erik Zeidler.

This book was an enjoyable read and I'd highly recommend it to every reader. It's not only a portrait of America, but it illustrates that if you hold on tight to your dreams you can make anything happen.

After reading "Just Kids from the Bronx" I had a few questions I wanted to ask Mrs. Alda. She graciously agreed to answer them:

CC: The impressive array of people who grew up in the Bronx leads me to believe there are many more stories that need to be told. Did you have to turn anyone away who wanted to be included in your book? Were there stories you wanted to acquire but were unable to?

AA: There are definitely many more stories to be told. This is just the tip of the iceberg. The interviewing for the book started in such a random fashion. I initially had no idea as to who should or would be in "Just Kids From the Bronx." I started by talking with the CEO of J.Crew, Millard (Mickey) Drexler, who grew up in the same building as I did in the Allerton Avenue section of the Bronx. Going back to our apartment building, the Mayflower, with Mickey was the starting point for my wanting to collect stories from other accomplished Bronxites. I started slowly and cautiously by interviewing and talking with other people I knew who were Bronxites of some prominence. After just a few interviews, I realized I was painting myself into a comfortable corner. Who were the people I didn’t know? And who were the younger people who grew up  in the Bronx…what were their stories? How were the changes in the Bronx over the years reflected in the lives of those who grew up decades after I did? Once I started those explorations, I was on my way to covering ground that rounded out a compelling story of decades of growing up in the Bronx, with all the changes those decades implied.

Most people didn’t know that I was working on "Just Kids From the Bronx," so the issue of turning people away was hardly a major one. I don’t think people were knocking on my door to be in the book. I had to go out and look for them.

A few of the prominent people I would love to have interviewed were Justice Sonia Sotomayor, Edgar Doctorow and Kerry Washington, but those interviews didn’t happen. A loss on all counts.

CC: As a busy wife, mother, grandmother, and someone who has always followed her passions, is there any advice you'd give to women on maintaining a sense of balance in their lives?

AA: From my own perspective as that of a married woman with children, I think it took me years to find my equilibrium. I was not a good juggler, so when my kids were little I spent their early years putting my own profession on the back burner. I didn’t know how to apportion time to them and a budding actor/husband and also to me. What I found out over the years is one simple truth. You can’t have everything all at once, but if you can get your priorities in order, you can have a good shot at "doing your own thing" in due time. You have to be lucky, though. Having a good supportive spouse helps a lot! The old cliche also  applies: Patience is a virtue.  There are never any guarantees for success, but maybe a warranty that lasts a few years? That’s not bad either.

CC: Many of my readers are midlife bloggers/writers. Can you offer any writing tips?

AA: I’m not sure I have writing tips, having  come to writing as a third career choice. (Music, photography and then writing.) But here goes anyway. Writing is a process. Writing is a skill. Writing is an art. It can come from your head and/or your heart. Write every day, even if it’s a sentence or a paragraph. One thought leads to another. Whenever I write anything, and that includes this email, I let it sit for awhile, and then I edit like crazy, but I don’t edit while I'm in the throes of getting it out. I let it sit. Editing comes later. A question I always ask myself when writing is, ”Why am I telling you this?”and “Am I telling it in the best way possible?”  If you can honestly answer those questions to your own satisfaction, then that’s a great start. There’s the old Shakespeare character of Polonius in Hamlet, who, in giving advice to his son, says, “...and to thine own self be true.” Even though Polonius is often described as a foolish old man, his advice seems pretty good to me.

That seems pretty good to us, too, Mrs. Alda. Thank you for taking the time to answer my questions.

Arlene Alda's book "Just Kids from the Bronx" will be on sale beginning March 3. You can order your copy here. All author proceeds will go to several children's organizations located in the Bronx.

NOTE: I received a free copy of "Just Kids from the Bronx" from Henry Holt and Company. All opinions, as always, are solely my own.

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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