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 Jennifer Shumsky on May 19, 2009 at 7:07pm
"So if being resilient means recovering to the point of what they were than I'm non-resilient also. No one can bounce back from a trauma in their lives to be what they once were. They may survive but lives are forever changed and as you said Pat it's not by choice. We were all forced into it and would never wish this on anyone."

I have to say that although I would never wish this on anyone, and I wish DMD didn't exsist, I don't think I would want to go back to the way my life once was. I know this DMD life is giving me so much pain and will continue to do so, but the gifts it has given me are pretty large also. I appreciate so much in my life now, I enjoy every second with my children. I don't sweat the small stuff the way I used to. We live life more now than we used to, I can't say before the diagnosis I would be as happy in my life as I am now. It was the unfortunate STOP sign from God that I needed to slow down and be thankful for what I was given.
I'm not sure if that would be defined as resilient, but it's my way of taking my lemons and making lemon drops!
Comment by carrie on May 19, 2009 at 6:40pm
The ability to turn adversity into strength. I guess that's the cow manure idea again. Easier said than done.
Comment by cheryl cliff on May 19, 2009 at 5:04pm
Ummm, that is to say (since I realized I wasn't very clear with my last sentence) nobody should ever NEED to become so resilient they tolerate DMD in their lives, especially children.
Comment by cheryl cliff on May 19, 2009 at 12:32pm
I think of resilience as the expansion and contraction of the human spirit. The ability to take on pain or carry a heavy load and still show compassion for others. It's not the practice of a neutral observer. Our suffering is huge but we get up every morning to start another day and smile as we watch our sons. We see their resilience and manage to carve out a little more for ourselves.

Resilience is required, no training or choice involved.
Nobody should ever come to be this resilient, especially children.
Comment by Jacobs Mommom on May 19, 2009 at 11:58am
Marilyn, I reallly really like your answer. Amen to that!
Comment by Marilyn on May 19, 2009 at 11:52am
I believe resilience is, you spring back from something bad that happens to you. In our case as parent's and grandparent's and children with DMD/BMD, there is nothing to spring back to. We can try to be strong, and have hope, but that's not what I call resilience, I think you can be resilient when the worst if over, when DMD/BMD is cured, then we can be resilient.
Comment by Janine on May 19, 2009 at 10:12am
I guess it all depends on what you feel the definition of resilient is. Early on after my son was diagnosed one of the comments I heard many times was "I could never handle something like that". This would always make me angry, the comment made it sound like I had a choice in the matter. I would wake up each morning and get out of the bed the same way and take care of my family the same way because there was no choice. I did not feel resilient in fact the only thing I felt early on was pain. Pain so intense that when I would drive down the road in my car alone at 55 mph I would have fleeting thoughts "gee if I just swerved quickly into that tree all of this pain would be gone, and it wouldn't hurt anymore". Does the fact that I'm still here mean I'm resilient?

Instead of a quick end to my pain I elected to focus my energies at the time on something positive. I organized and fund raised for several years and raised enough money to build a Boundless Playground in my area. Had I known when I started the project how long it would have taken I may never have started but we got it done. Does refocusing my pain into creating something positive make me resilient?

My pain, anger, and sorrow is still here, while not as intense as it was early on it will follow me the rest of my life. But I have managed to go on in this life that was forever altered on a beautiful sunny day in May of 2000. I will continue to go on and manage to find joy whenever I can in spite of it all. For that I feel resilient.
Comment by JUAN PEDRO ARBULU on May 18, 2009 at 10:10pm
As I grow up with my son I learn much with him but mostly from him, it´s sometimes very difficult to overcome to some situations, but trust me when you have learned of people and situations through your life,it becomes easier to keep on, it´s like solving one thing at a time but at the same time you realize you are doing many things...and life gets you through.
When I say life I am really thinking about God, in my case spirituality is the strongest of your list Pat, from reading your post I can see many other important ones, I will make my second "finding positive means in the trauma"...I know everything me and my son are going through makes us stronger for future situations and makes him specially able to solve his problems and help others through his life...that gives me peace of mind.
That makes us survivors...never victims.
JP.
Comment by Jacobs Mommom on May 18, 2009 at 7:00pm
If there's one person on this website who says they are resilient I won't believe them. Maybe there are moments when we feel strong and resilient but it doesn't last. So if being resilient means recovering to the point of what they were than I'm non-resilient also. No one can bounce back from a trauma in their lives to be what they once were. They may survive but lives are forever changed and as you said Pat it's not by choice. We were all forced into it and would never wish this on anyone.

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