Whenever someone asks me how things are with my family I sometimes find myself going into this quasi self preservation state.   It’s as though I have this bubble surrounding me and depending on how large an opening their questions create, more of my world will envelop them.   Maybe “self preservation” is an inaccurate description.  It’s more that I begin this quick assessment of the person asking to determine how much detail I want to provide beyond the cursory “We’re all doing fine”.  Actually, it’s not me or even my feelings I am trying to protect, it’s really about that other person and how much I think they should know or even more to the point, how much of my reality I believe they can handle. 

 

When I was younger I wasn’t always diplomatic. My work supervisors admonished me for speaking my mind.  Not because what I said was wrong or derogatory, but often the person to whom I was speaking was their boss and my supervisors thought my delivery was a bit blunt.  I was labeled as being “brutally honest”.  I learned, sometimes slowly, that being more sensitive to thin skinned bosses would help me avoid problems later.  This has some effect on how I react to people when talking about my family, but it goes deeper.

 

I was brought up on the principle that family members stand by one another through thick and thin, that old “blood is thicker than water” axiom.  I stopped believing some of this after my sons were diagnosed with Duchenne muscular dystrophy.  Sure, everyone says they want to help out, they will be there when we need them, but often it’s easier doing it ourselves than the trouble it takes getting someone to lend a hand.  Yes, I know, everyone is busy these days and I should understand how hard it is for them to change their plans.  And when they ask why we have to travel to clinic or when did Matthew or Patrick stop being able to do something I wince and wonder if they even hear what I’m saying.  So, if some family members don’t understand, how can friends or casual acquaintances? 

 

I learned that explaining DMD often needed to be brief.  It could take quite some time explaining the disorder, especially when adding a quick primer in genetics.   Once I discovered I was sharing more than what most people wanted to know, it helped in the evolution of my explanation.  Only the essential details are necessary.  If someone wanted to learn more I could tell them where to get more information.  It worked for me; it should be OK for those who really care. 

 

When Patrick broke his legs I went online to read how fractures are treated, considered the anesthesia risks and weighed it against the fact that people who walk are treated differently than those who have DMD.  I also read of boys with DMD who died soon after a leg fracture from related complications. Would this have been appropriate to mention when even a very close friend asked about Patrick?   Probably not, but why not?  The truth is most people want to know everything is fine.   When things are not well, weighing what to tell them becomes an issue.  This is when exercising judgment becomes necessary.

 

I guess we learn to triage what people want to know and how much we need to say.  With people I am not very close to, the benign “everything’s fine” will usually suffice.  Family and close friends who know us well or see us regularly tend to be more empathetic and can handle more detail.  There are fewer people to whom I can confide things like the boys’ loss of ability or what the future holds.  It requires balancing the depth of my response to “how is everyone?”  I also wonder what good it really does to share the details of the world in which I live with everyone.

 

There are people who don’t appreciate what families dealing with chronic illness go through and it’s foolish to think I can educate everyone.   There is a difference between “raising awareness” and overloading people with information.  The key is deciding who is ready for what.  Maybe it can be seen as downplaying disaster, but it also spares me from unnecessarily reliving some of the less pleasant aspects. 

 

Brian Denger

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Comment by Mortman on November 22, 2011 at 8:22am
Nice job putting into words what we all deal with daily. You are correct, most people struggle to hear or understand the ever present changes.
We are getting near the end of this journey.
I tend to respond to the question of "how are the boys doing" with it is getting hard. People either try to cheer me up by telling me the great things the boys are doing, or tell me they do not know how we do it. Both responses are frustrating! I do not need cheering up...I could not be any prouder of my boys, but it is so hard watching them struggle. None of us chose this path, but we will step up and take care of our sons.
Comment by Christine Piacentino on November 22, 2011 at 8:07am

Brian,  I agree.   I'm often confonted with the same feelings and analysis whenever any asks me about Jonathan. This post captured the feelings we all have as parents have when someone asks how our sons are doing.

Comment by Liisa Underwood on November 22, 2011 at 3:17am

Brian, I think I've tried to write this note 6-7 times now because I keep trying to write more than my fingers can carry.  And so I erase and now down play... We're fine. We hope, love and have as much fun as we can gather. But... we dread the DMD milestones to come. It's information overload for us. Even though we live with it 24/7, it must be overload for anyone else who tries to live in it for a moment.  Hugs!

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