For the holidays, Pat and Ivy have co-blogged about words that are particularly used this time of year. These words are often redefined by our community because our everyday life requires new definitions. But that does not mean that we must be denied any of the joy of the holiday season.

Happiness and Joy

by, Pat Furlong


These two words fall together in so many ways over the holidays. We say them. We express them to those who share our lives. We see them everywhere, on cards, emails, in movies, on TV and sometimes if you’re lucky, they are accompanied by an embrace or the touch of a hand. Happiness and Joy, decorations for our life, like they are tied together with a ribbon in one neat little package. But the words are separate and distinct, different meanings and different feelings. 


The Greek word for Happiness is Makarios, long ago used to describe the rich as seemingly free from normal cares of everyday life or to describe an individual who experienced good fortune or good health. Happiness is attached to external events and often couched in circumstances. Happiness is that first cup of coffee in the morning. Happiness is fitting into your ‘skinny’ jeans. Happiness can be attached to an email, a smile, a new friend, or a tender touch.  Social networking sites are a great place to learn about happiness, the small pieces of a day that make you smile and lift your spirits


But Joy is something more. The Greek word for Joy is Chairo, sometimes described as the ‘good mood of the soul’. I love that idea actually. Joy is something that touches us deeply, intimately. Joy is deeper, more intense than Happiness. Adela Rogers St. Johns says “Joy seems to be a step beyond happiness. Happiness is an atmosphere you can live in sometimes when you are lucky. Joy is a light that fills you with hope and faith and love.” And Elizabeth Kubler-Ross believes “People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their beauty is revealed only if there is a light from within.” Joy is that light from within, that intense connection to something meaningful, something bigger than yourself; our interconnections grounded in love and compassion. Joy is an umbrella covering gratitude, hope, vulnerability, and uncertainty. It can be thorny, sharp, and sometimes even painful. Joy is to love someone fiercely, to believe in something with your whole heart, to fully engage in a life that doesn’t come with guarantees. My son Chris developed his own definition. “The meaning of life is a life of meaning.” Joy. The good mood of the soul.


Tis the season, the world seems alive with twinkle lights. Brene Brown, PhD, talks about twinkle lights and suggests, “Twinkle lights are the perfect metaphor for joy. Joy is not a constant. It comes to us in moments –often ordinary moments. Sometimes we miss out on the bursts of joy because we are too busy chasing extraordinary moments. Other times we’re so afraid of the dark that we don’t let ourselves enjoy the light. A joyful life is made up of joyful moments, gracefully strung together by trust, gratitude, inspiration, and faith.”

Duchenne has changed our lives forever, but it cannot steal our Happiness and Joy. These are ours, our very own twinkle lights to make the world look brighter, prettier, warmer, better. Happiness and Joy. Ordinary moments, precious memories are what life is about. Daily doses of joy.


This holiday season, I wish you Happiness and Joy. Happy times and memories to put in the ‘remember forever’ compartment of your heart. And Joy to let your unique light shine through – for the world to see the good mood of your soul.


We can never go back and make details of our lives pretty. All we can do is move forward to make the WHOLE beautiful. (adapted from the words of Terri St. Cloud,

Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.


Faith, Hope, and Charity

by, Ivy Scherbarth


I was quoted back to myself the other day by someone who was hurt by something I said. I did not have any intention of being hurtful, but I can see how my words conveyed the wrong message. I said that I did not hold any hope that a cure for Duchenne would come in time for my son.


Ah, hope, one of the tricky virtues, a word with terrible poignancy to my ears. I have issues with hope. Hope has such severe consequences for getting it wrong. The failure of hope is despair.


I'm much more comfortable with duty. Duty is certainly one of the trickier virtues but it doesn't have the same sting of failure as the others. Duty, by its very nature as a fuzzy, varying concept comes with a little extra padding. A person who fails in her duty may be excused almost no matter what the consequences of her actions. She did what she thought was right at the time. She tried.


It is my belief that words convey multiple layers of meaning, regardless of their context. The word hope thus conveys the presence of anxiety and fear. If I hold onto a specific yet vast hope, like the hope that a silver bullet will save my son, if I spend each day thinking and wishing and living for and in expectation of an imminent cure, I am not living in the present. If I am hanging onto that one hope, I am holding my breath. However, if I banish the hope of a cure for my son, I can also remove the anxiety, the terror attendant upon the potential failure of such a hope. I can relax, and breathe, and tell myself that the cure for my son is not actually something that I need to focus on. Living with one foot in some imagined future is a losing proposition for me, a way of wasting my limited energy and distracting me from the important business of living my everyday life right now. Abandoning this specific hope does not mean that I am hopeless. On the contrary, I believe that it makes me fearless.


Of course I wish for a cure for my son. I wish that it could be so easy. I wish that someone could wave a magic wand and solve all of the problems of this world. But whether a cure comes in time for my particular son or for the next generation down the line, there is absolutely nothing that can excuse me of the duty of living my life to the very fullest right now with my current resources and abilities. You get what you get and you don't throw a fit, you just deal with it. No matter what happens in the future, I am here right now and I am me. If I don't make myself the best, happiest, kindest, funnest, most flamboyantly dramatically intense me I can be right now, I have wasted my opportunity to really live this life.


I do have hopes. Lots of them. But I prefer to allow them a short leash. I hope that my son likes the present I've picked out for him. I hope that my daughter enjoys her day at school. I hope that my husband feels satisfied with the work he's done this week. I hope that I don't burn the dinner again. Like goals, I want my hopes to be achievable.


Perhaps it is wrong for me to think this way. Perhaps it is just another expression of my lifelong habit of avoiding trying at something when I think the consequences of failure might be too much for me to bear. But, funny enough, I've become accustomed to my bad habits. Why risk a failure of hope if I can cope in some other way? What if I can be confident instead?


Another of the tricky virtues is faith. Faith is different from either hope or belief. After all, we know that beliefs change and are thrown out over time. We know belief in impossible things happens all the time and not just before breakfast in Wonderland. Think of a flat earth or an irreducible atom. Faith, on the other hand, means knowing, being absolutely certain without the possibility of failure. I have faith that a cure for Duchenne is coming. I just can't live my life sitting around and waiting for it to happen, always being disappointed that another day has gone by without the miracle occurring yet. I have faith that my contribution, however tiny, to the cause of making that cure happen someday, is unique and irreplaceable. I know that I have a duty to be part of the fight to manifest the medicine that we all wish for so much.


Doing my part, here and now, regardless of my fluctuating moods and feelings, regardless of my quirks or coping mechanisms, is where charity comes in. We have so many options when it comes to charity. Which charity should I choose? Do I give them time or money? Do I give five dollars to a dozen charities or do I give five hundred to just one? These are personal choices. I completely agree with the principle of the ONE Voice program: we're all on the same team when it comes to ending Duchenne. That said, I have to put in my figurative two cents as well as the many literal cents I give here, to Parent Project Muscular Dystrophy. I believe in the power of the midsize organization with a very focused goal. PPMD is all about Duchenne (and Becker) Muscular Dystrophy. They are not so big that they cast too wide a net, with important but small fish slipping through the holes. They are not so tiny that they are essentially raising money for just one piece of the DBMD picture.


If I'm preaching to the choir here, please be patient with me. It is neither the first nor the last time. We believe in Faith, Hope and Charity when it comes to Duchenne, no matter what our religious or spiritual upbringing. We have faith that a cure is coming. We hope that it is coming soon. We give to charity to make it happen. Amen.


Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.

Pat Furlong, Founding President, CEO
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Comment by Danielle Bath on December 8, 2011 at 3:27pm

I swoon at your words.

Comment by Andrea Cleary on December 8, 2011 at 12:56pm

Thank you Ivy for expressing how I feel here, for all to read. Often I feel folks think I am heartless, or hopeless to talk in such a manner. I have a heart, it's just broken in pieces.

I recently said something very similar to my therapist about hanging our hopes on a star (on a real treatment, on a cure), while missing what is in front of us right now, in the moment. It is a falling star, this race against the clock. I want my son's life to have meaning and purpose, whether medical miracles happen in time for him or not.

Peace to alll.


Comment by Brian Denger on December 8, 2011 at 12:19pm

Ivy, your description of Hope appeals to the pragmatist in me.  My sons were diagnosed during the black and white era of DMD research and I've watch the transformation that includes the many hues we see today, yet still cannot hold.  I remain involved, reading research abstracts, offering my opinion to families, physicians and researchers based on our experiences and by attending meetings and conference as well as advocating on behalf of my sons and every other person living with DMD.  That is one side of my life.  The other side is not letting time pass by while I fret over what might be and rob my sons of their chance to live.  My wife Alice and I have high expectations for our sons, none of which involves self pity.  Matthew and Patrick rise to the occasion and aren't idly letting the days pass.  They are involved in school and other activities in the community.  For me, it has always been about balance.  One side of my life in balance with and for the other. 

I too reserve hope for more practical uses.  I hope it won't rain tomorrow when I bike to work.  I hope Alice will not put peas in whatever she is making for dinner.  In the world of DMD I prefer to know.  I know research will lead to better treatments and I know time isn't always our friend.  I don't believe there are flaws thinking this way.  In fact, I believe it strengthens my resolve basing my opinion on fact rather than intuition. 

When I was in elementary school kids were fond of asking others to hold out both hands.  They'd say "You wish in your left hand and I'll spit in your right.  Which will fill first?"  No one spit in my hand, but I got their point.  Tangible evidence is important to me.  So is living today for today.  John Lennon is quoted saying "Life is what happens while you are busy making other plans."  I think there is room for both sides in measured doses. My mother frequently said "live and learn".  I prefer "learn and live". 


Comment by Donna Taylor on December 7, 2011 at 8:28pm

Pat and Ivy-- thank you for taking the time to write these beautiful, inspiring words. Very, very well done.

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