Respect the Experts: Part Five

The Context of Crisis

IM000161.JPGYears ago (wow I’ve been writing for a long time) I wrote this blog post that was very popular about what to say/not say do/not do when someone you love is experiencing a crisis.  It is so old it has the old title of my as-of-then unpublished book, and it was so popular my publisher had me put it in my since-published book.  I think it’s a good run-down still, but something happened this past winter that made me want to go a little deeper into this concept and the context of crisis.

I have a dear teacher who has struggled with a lung cancer diagnosis (which has blessedly improved) for several months now.  In the onset of the worst news before hope took root, I spoke with her husband and we discussed this context of grief.  It is a sort of twilight zone where everything looks like it did before, but it is not as it was before and never will be again.

It is genuinely unfair to those who have not experienced an on-going crisis to expect them to know to respond, especially since our culture seems to have shuttered the traditions and conventions that would prepare us for the reality that bad shit happens to nice people. Even those experienced in crises don’t always have the same perception or experiences.  The biggest problem arises when people impacted both directly and indirectly by a crisis don’t understand that the rules have changed.  The new rules are the context of crisis.  Trying to abide by the old rules is exactly why the phrase, “rearranging deck chairs on the Titanic” was coined. When a ship is going down, social conventions are the first things that go overboard.

It’s not just the straggling supporters who won’t seem  to let the patient sleep who don’t understand the game-changer that is crisis. Often it’s the patient himself or the mother parenting a critically ill child who is trapped in the conventions of stability and not aware of the context of their own crises.  I’m guilty of this. I actually preferred to have no one at the hospital with us when caring for Liam because I felt put upon to entertain them.  In the midst of my own crisis, it never occurred to me that not only was their entertainment not my problem, but most people were not expecting to be entertained.

Still, I couldn’t make that distinction, so I kept others at arms length because I didn’t have the strength to be nice, and I didn’t have the strength to be mean.  In the context of my crises, I only had the strength to attend to my child and it was wrong for others, including myself, to expect more from me at that time.  I didn’t do anything wrong. I responded to the crisis well, but I felt guilty.  I reject that guilt now because my actions were appropriate to the situation and my state of mind.

We don’t talk about this context of crisis or the fact that tragedies and challenges are supposed to usurp normality and social conventions.  We see things like Hurricanes Katrina and Sandy, the Aurora Theater and Sandyhook shootings, fires, floods, tornadoes and crises all around us.  We stare at our screens, memorized by the destruction.  Maybe we send money. We are moved by the enormity of the crisis, but we don’t understand the aftermath of it.  We don’t follow those refugees back into the long and painful path of rebuilding their lives from scratch.  We have no context for coping with the continuum of crisis. . . unless it happens to us.  It’s hard for friends and family to support heart families when the devastation in our lives is inside of our pregnant bellies, or inside our infants’ hearts where it cannot be seen for the killer it is.  This is true of many “invisible” diseases that are no less lethal than their more obvious counterparts.

I have a friend who I adore. Her husband suffered a terrible injury and one of her children recently suffered many serious health problems.  My friend is older than I am, but she comes to me for wisdom because I understand and respect that she is in a context of crisis with her family.  I understand and empathize with all of them, and she tells me it helps her when I can imagine and share how the other family members might feel in the crises their family faces.  I know it helps just for me to listen, because listening is the first and most valuable rule inside the context of crisis bubble.

The second most important rule is that you cannot fix the crisis.  You might ameliorate some current symptoms by listening and offering empathy.  If you know how the inner-workings of a hospital, particularly the hospital the family is dealing with, your information has far greater value than your advice.  If words and all else fail you, send a fruit basket and some pastries. But never say, “It will all be fine,” because you don’t know that, and saying it only makes you feel better while shutting down the person to whom the crisis is actually happening. You can’t fix it, but you can be a leaning post.

The third important rule in a context of crisis is to try to understand how it feels for your friends who are at the epicenter.  Surely, you feel for them, and your feeling are valid, but they are your feelings. Your feelings about someone else’s crisis  are after-shock discomforts, not epicenter destruction. Respect that those in the ground zero of a catastrophe still love you, but they don’t have the energy or ability to show it when strained by the most terrible moments of their lives.  If you can understand how limited they are in their ability to function in the regular world again, you won’t expect common courtesies like prompt responses to your invitations or smiles instead of tears. Also remember that they are raw and wounded and they may take what you intended as helpful commentary as barbed criticism.  Don’t hold that against them while they’re crawling over the shards of their former lives.

The final important rule for this context of crisis is to give your friends or family time to come to acceptance with whatever tragic circumstances have befallen them. They may put on brave or even cheerful faces to put you at ease.  Don’t accept that blindly.  Some people, like me, have no problem writing out their pain in blogs and books, but crying in front of others is something that escalates my discomfort  but does not alleviate it. I’ve looked up from a book reading to see crying faces, and though I lived it I’m not crying because I’ve disassociated in order to tell it.  Not everyone can do that.  We all have different coping mechanisms, so try to respect that and the fact that the natural response to crisis is to grieve the normalcy that was consumed by the emergency.

With the rise of medical technology, the specter of death has slowed his collection rate for both old and young, but his fingers are still in on the shoulders of children, like my son, whose lives were spared by the age in which they were born.  I have not lost my son.  If I’d lived in Victorian times, he would have died during his birth, and I would have died birthing his sister.  I am glad I don’t live in Victorian times because I’m a lady who likes to say what she thinks and whose life was saved my C-section.  I’m glad my son has a chance to survive something that was once 100% fatal in 100% of patients.  That said, I have come close to losing him on three different occasions.  We’ve spent literally months in multiple hospitals for multiple surgeries.  For the first half of Liam’s life we were living in a perpetual state of crisis.  Now we’re just on standby for the next shoe to drop.

I am always vigilant because his condition calls for such vigilance.  I am always on the edge, wondering when the next storm will come.  I’m no fool, there will be another storm; the biology of my child demands another eventual crisis.  I will always grieve the comforts of my old ignorance. Even if it was a false certainty, I once held  the common understanding that most parents possess that the future is their children’s for the taking.  Now I must accept that the future might take my child from me.  I will never stop grieving the bitter fruit I tasted at the foot of the tree of knowledge.  I’ve come to terms with this life, and I live a positive and happy life. Yet, a hole was bored in my soul where the life I thought I would have with my son was torn out and the uncertainty of his future howls like a fierce and lonely wind.  I’m sorry I can’t make it otherwise for him, for me, or for the people who feel uncomfortable with my honesty.  Yet, honesty is my compass through this difficult world, and no one should be robbed of their honesty on top of their lost expectations.

I mourn what should have been and what can never be and I fear what I might yet lose.  I am not alone. We whose children were reprieved but not redeemed from certain death are often silenced. We are in an awkward space between the blissful ignorance we lost and  the manifestation of the bereavement we fear the most.  Our lives are spent in the shadows between the good that should have been and the terror that might yet be, and we constantly seek light and happiness despite the uncertainty of our footing. We are pioneers in survival.  There is no “right” way to live here.  This is a unique landscape with a growing population of saved babies who may or may not become adults flanked by terrified families.  We don’t wear the symbolic black of mourning, we wear an ambiguous gray that is the amalgamation of fear and hope.

In a context of crisis, it’s best to acknowledged that  things have changed.  Fractures and scars will forever shape the landscape of the lives impacted.  Many of the losses wrought by the crisis will not be apparent until years and miles have passed, and the shadow of the crisis will haunt the afflicted again.  The true test of friendship is standing unflinchingly by while you watch someone you love churn in a paradox of strength and vulnerability that only a true tragedy can conjure.  Aside from the payoff of doing the right thing, when your turn comes (and we all get a turn eventually) your kindness will hopefully be remembered and the grace you show in supporting your friend(s) will manifest itself in your own life as they see you through your own difficult road.

It is ironic that as we’ve aged as a nation, advanced so much in medicine and life-saving, and are chronologically older than ever, but we’ve become so immature about serious issues like life-threatening illness.  How can we heal if we cannot grow up enough to respect the pain of others and remember with solemn dignity those we’ve lost?  So, what can we do? Go back to the beginning and read the original blog post.  It’s shorter and saltier than this post, but it still holds true.  More than that, go back two thousand years and hear the words we should all heed, “So in everything, do to others what you would have them do to you.”  It’s survived two millennium for because it’s can’t fail advice from an infallible source.

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