I have been invited to give a keynote address on Resilience and I need your help. What is resilence. Are we resilient? And if so, what does it mean really?

In my head I remember a commercial describing a linoleum floor as ‘resilient’. The commercial depicted glass breaking on the floor and literally bouncing off. No sign of nicks, scratches. No scar. No harm done. No obvious change in the floor. It was resilient.

On the other hand, I have heard so many people describing children as ‘resilient’ , suggesting they bounce back quickly and like new. Much like the lineolum floor, children are said to show no damange, no wear and tear, no scar. I’m not sure it is true.

If resilient means no scars, no sign of trauma, I cannot speak for you, but I am certainly not resilient.
Interestingly I found a mathmetical definition of resilience. It defined Resilience as the property of a material to absorb energy when it is deformed elastically and then, upon unloading to have this energy recovered. In other words, it is the maximum energy per unit volume that can be elastically stored. It is represented by the area under the curve in the elastic region in the Stress-Strain diagram.
Modulus of Resilience, Ur, can be calculated using the following formula:

where σ is yield stress, E is Young's modulus, and ε is strain.
While I am no mathmetician, this definition suggests a certain elasticity and I’m probably stretching it a great deal, but if I take a leap and think how it might apply to people, it suggests that there is an elasticity about us, that when bombarded with pain, fear, change – we are able to recover, to restore our energy.

Another definition of resilience suggests an ability to recover from or adjust easily to misfortune or change. Adjust easily… well, I don’t think it is exactly easy, but adjust for sure and more likely because we have no choice. Studies suggest resilient children and their families had the following traits that made them different from non-resilient children and families.
• The ability to cope with stress effectively and in a healthy manner
• Having good problem-solving skills
• Seeking help
• Holding the belief that there is something one can do to manage your feelings and cope
• Having social support
• Being connected with others, such as family or friends
• Self-disclosure of the trauma to loved ones
• Spirituality
• Having an identity as a survivor as opposed to a victim
• Helping others
• Finding positive means in the trauma

If resilience means no scars, no signs of stress, no trauma; I am not resilient, not at all. I like to think of it this way: If life throws cow manure in your face, do your best to use it as fertilizer to grow something beautiful.
I would welcome your thoughts.

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Comment by PPMD on August 4, 2009 at 10:46am
We know everyone was curious to see how Pat's presentation on RESILIENCE came out, here is the presentation:

RESILIENCE.pdf
Comment by Jo-Anne on June 9, 2009 at 4:30am
Reading the above that "Studies suggest resilient children and their families had the following traits that made them different from non-resilient children and families", first thought that came to me is all the features they suggest, I found that all of the above somehow just dissolved when we found out about Kevin, when you are faced with a traumatic experience, everything changes. I agree "Hope" and "Prayers" are what we have, without Hope and Prayer, we will not survive at all.
Comment by Paul Johnson on June 8, 2009 at 1:45pm
So Pat - do we get to read a final draft of your Keynote?
Comment by Brian Denger on May 24, 2009 at 6:49am
One definition of resilience reads: "Resilience in psychology is the positive capacity of people to cope with stress and catastrophe." Unlike the definition for non-living matter that retains its original shape after being deformed, this definition leaves room for change.

When I think of resilient people those who survived the horrors of concentration camps relocated to another country and became successful in business, politics or raised a family come to mind. These same people lost family, suffered indignities and torture, yet still knew how to keep moving forward with their life. To suggest they were unchanged would be false. They provided an example of how to overcome adversity and not allow their captors to succeed in dehumanizing them.

Resilience is not the same as impervious. For families affected by chronic progressive disorders there are many similar feelings and pain. The will to not let this disorder be victorious over their lives and families motivates many to work to change things by improving treatment, seeking curative therapies and raising money and awareness. These people are not unchanged, yet they make a choice to leave the darkness that allows the disorder to control their entire life.

When I am asked by others about how I cope with my sons having DMD I tell them it is by being involved in the effort to change the face of DMD. It doesn't mean that I do not feel sadness about things or that I am unaffected by how DMD controls so much in my family's day to day activities. What it means is I have decided to try to channel my energy onto any aspect that will one day mean DMD is not a disorder that causes families so much pain. I believe this has helped shape who my sons are as well. They are involved at school, they are optimistic about the future and they don't feel sorry for themselves.

Resilience in some ways is like evolution. When change is so great in nature living things must adapt or perish they choose to change. Families living with chronic illness choose everyday to change. They help one another with fund raisers and advice. They use their stories to raise awareness and lobby for federal funding to support their cause. They go on being mom and dad. It is not easy, but we all know it is essential to survive.

Brian Denger
Comment by Gretchen on May 23, 2009 at 11:05pm
Living with Duchenne has proven to me that we can weather anything. We never "bounce back", but we survive, endure, and can still thrive. I'm blessed to have a son so insightful as Nick, who has only known this life, with this set of circumstances. I can't say I wouldn't wish it any other way, because I do have days where I resent that I don't have a perfect, healthy family....but we grow, and I believe I'm a stronger person because of this diagnosis. I'm resilient, I think, in the sense that when crises strike others, I can offer genuine empathy--even if there's no child, no neuromuscular problem---I get it. I cry a lot, but I also laugh a lot--that's resilience. I see the humor, the irony, the hilarity in situations that might have eluded me before. I see the blessings in circumstances that before I'd have seen only as miserable and unfortunate. And I see we're not alone.
Comment by Christine Piacentino on May 23, 2009 at 8:48am
What is resilence? I believe it's the ability to go on with life. Not as it once was before a Duchenne diagnosis; but to continue on to deal with Duchenne to best fit your families lifestyle and well being. Resilence and hope are two words that go hand in hand. I feel that a person can't go on and deal Duchenne without the hope that things will change and the outcome will be different. I think people who deal with it and affect change are in some fashion reslient, whereas others who just accept the diagnosis and accept it without trying to improve things are not.
Comment by Char Burke on May 23, 2009 at 12:18am
Resilence is the title of a new book by author, Elizabeth Edwards. I have not read the book but if you know about her life, it is an example of resilience. She has survived the death of her son in a tragic accident, she has had her cancer return and her life estimated as cut short. She had children at age 48 and 51. Her husband, John, admitted to an infidelity when she was ill with cancer.
What comes to mind when I think of resilience is a rebirth - the ability of over come obstacles and still grow and learn and not give into fear or to giving up. Maybe all parents of children with critical or life threatening diseases are called to be resilient for the sake of their child. The children are certainly more resilient than we parents think they are. I think resilience needs to be in our emotional tool kits to not cave into despair or depression. How will we feel looking back at the battle we fight ever day with DMD? Will we be confident that we gave our child the best we could, that we were positive and supportive of their ever changing needs, that we were resilient to giving up? I can only hope that I will be. Our son is still young at age 6 and has not yet declined much if at all. I hope I am resilient to be as positive parent as I can. To see the glass half full vs. half gone. That to me, means being open to changes and learning new ways of coping and never, ever giving up.
Char Burke
Comment by Lynn Bartels on May 22, 2009 at 3:03pm
Resilence to me is the ability to bend not break and continue to move forward. The scars are there but we resolve to not let them paralyze us. We move with the change like the willow in the breeze.
Comment by Paul Johnson on May 22, 2009 at 9:50am
Pat,
I like the equation\term modulus - because I think its true - its the degree\factor to which we recover. Nothing is truly 100% resilient, as some of the energy is lost by friction, resistence, heat etc... Rubber bands look resilient - but over time, stretch after stretch - they lose their elasticity etc... they have been transformed permanently by that energy they've continually absorbed. So as most eveyone has stated - people don't recover to the person they used to be after learning of their child's diagnosis. But it isn't that we are less, it is that we have been transformed permanently by that diagnosis. Are many of us better people because of this diagnosis, I think so - are hearts a broken - but as a people we are better - more compassionate, understanding, forgiving, enligheted.... And many of us chose to make that transformation as much a positive outcome in our lives as we possibly can... so I think that is the meaning of resiliency in our world.
Comment by Carolyn Greathouse on May 20, 2009 at 12:26pm
Resilent means to bounce back, but I believe that it is not resilent that has kept me going it is the word "HOPE". I believe that the power to turn lemons into lemonade, or finding the positive or positive lessons in a negative situation or things is what help me deal with my son having DMD.

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