Cardboard Walls

Posted on February 6, 2010. Filed under: Ehlers-danlos syndrome, Life's Lessons, Uncategorized | Tags: , , , , , , , |

A friend of mine told me once about an experience she had soon after she lost her husband.  She was at the family’s home, the day of the funeral, and was mindlessly shaking hands, nodding at people’s condolences, and smiling as best she could.  An older woman who my friend knew only remotely took her by the hand and offered to sit with her a while.  Respectfully my friend sat listening as the woman shared her thoughts on how to get through “this difficult time”

“Your husband was such a good man”, and “It’s all going to work out”, were phrases my friend had heard a million times, and she thanked the older woman for her support and encouragement.  But as the woman stood to leave, she looked at my friend with all sincerity and said, “and don’t you worry, honey; you’re still young enough – you’ll catch another man soon!”

Knowing what to say or do when someone’s world falls apart is one of the hardest things in life we face.  Watching it fall apart from the beginning is even harder.  Instinctively we are driven to help; to patch up the cracks, to stop the leaks; to try in our feeble way to keep the walls from crashing down.

Eventually we’re all confronted with a friend, family member, co-worker, or loved one who is experiencing a tragedy or loss of some sort.   It leaves us there  squirming in uncertainty while we try our best to comfort to the person we care about.  Our hearts are in the right place; we really do want to help; but our emotions, our mouths, and our good intentions very often get in the way. 

Luckily, what most of you won’t have to face, at least not early in your life, is being on the receiving end of some of those well-intended but ill-conceived efforts.  Most of you reading won’t be the person left to open and read the sympathy cards in solitude or paint on a smile so you can  greet visitors at your spouse’s funeral, or listen to reasons and explanations for why this awful thing has happened.

But for me, it’s an experience I know all too well.  I think most of my friends and many of my acquaintances know I was widowed at the age of 29 with a 9-week old son, after my husband lost his life-long battle with Ehlers-Danlos syndrome.  What I don’t always talk about however, is that eight months later my mother died unexpectedly due to an illness that came on suddenly; she was only 56 and in otherwise good health.  Six years after that, my father and his new wife were taking a day-trip with friends to one of Georgia’s coastal islands when his plane crashed about a minute after take-off.  All of this happened within eight years. If I hadn’t actually lived it, I would think it was a cheesy-movie-of-the-week script idea.  But since I have experienced all of this, I hope I can at least give a unique perspective on the process to those watching their friends go through it from the outside. 

My sister-in-law and I used to joke around and say one day we would write a book called “What Not to Say at Funerals” because over the course of Josh’s illness and in the weeks following his death, we heard some really wierd stuff.  Many things people said could easily be laughed off and dismissed as well-intended but poorly planned; but then there were some that really, truly hurt.  So in hopes of avoiding an unintentional injury to your friends, my advice can really be summed up in one simple theme:

Above all else, respect the person who is going through the illness/grieving –above your need to say something meaningful, to express your own faith, or come in and rescue them from their despair. 

Many times in our rush to ease their pain we completely miss the fact that we are, in actuality rushing to ease our own pain.  Seeing someone’s life spin so blatantly out of control can stir up our own  heart-stopping fears, causing us to then work frantically because we need to feel secure again.  No one wants to be reminded how frail life really is; no one wants to dwell on the idea that anything can happen at any time.  Many people spend lifetimes building and hiding behind all sorts of walls to weather life’s storms; and to avoid being reminded that we really have no control over much of our lives.

What can happen though, when we are put in a place to watch someone going through it, is that it pushes an internal panic button for people who’ve devoted so much time to their walls – regardless of what those walls are made of.  Whether it’s a specific religious belief,  a superstition, a concrete sense of right and wrong, a philosophical sense of reciprocity, or even fairy tales for that matter – we build those walls because we need to feel like we have some control; deep down we’re terrified of swapping places with the person we see suffering.  In our frightened state, and usually out of genuine love and concern, we sometimes attempt to pull our friends in our little fortress with us.   Like children who build houses out of cardboard boxes, in our misdirected optimism, we truly believe our shelters will survive what ever may be coming; we have it “figured out” – we just need to convince our friend or loved one.   

But trust me – for the person standing in the middle of the storm – they’ve already had their own walls stripped bare and flattened a long time ago; they have no interest in getting into another house made of cardboard.  They see up close the inescapability of the storm and what they want and need more than anything is for their friends, their families, to come stand out in the wind and the rain with them; not tell them how to make the storm go away, not tell them how the storm isn’t really coming.  But unfortunately, those friends are sometimes blinded by their own fears. 

“If only they would believe what I believe . . .”

” If only they would try this kind of treatment . . . “

“If only they would try one more doctor . . .”

“If only they would let this person pray for them . . .”

“If only their faith were stronger . . . “

. . . . . as if we knew. 

The problem is the other half of those “If only’s”.  They are usually sub-conscious and usually go something like this:

“If only they would (choose any of the above) . . . . .

          then the horrible thing won’t happen . . . .

                  then the world will make sense again . . . . .

                            then I won’t be scared anymore . . . .

                                            then I can feel safe and go back to my life.” 

The day Josh died I remember almost nothing of what people said to me.  What I do remember clearly are the faces that filled the hospital hallways, the hands that wiped my tears, the arms that tried to stop me from shaking.  I remember the friend who sat in silence with me covering me with blankets because I was unable to stay warm.  I remember the arms that held me up and walked me out of the ICU when he was rushed to surgery.  I remember the friends who came to sleep beside me so I wouldn’t have to face the nights alone. 

Comfort comes from actions; not from words.  Resist any urge to explain, encourage, or “cheer them up” in the face of life’s biggest mysteries. The best thing you can do for people is to  just be with them – wherever they are; if they cry, cry with them; when they sleep, stay near; when they rage, validate them; when they are scared . . . hold their hand.  And if your mouth opens, close it. 

Stand with them in the storm, let yourself get drenched alongside them, brace them against the wind, and most importantly, be there when its over – when its time to rebuild their lives.


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8 Responses to “Cardboard Walls”

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Wow. I remember sleeping with you one of those nights after Josh died. There was nothing i could say. It just sucked.

Excellent Debbie!
I seriously think of telling my children not to do the ‘tradtional-visitation’ thing because I know how hard that has to be. I really don’t want them to be in a position of having to just be gracious and just smile. I do know people are well-intentioned but I’ve heard this before from others.
My parents are both still living and I do not look forward to those ‘visitations’. There are some particular family members I dread ‘hearing’ from already.
I stood by my dad at his mother’s funeral and was in disbeliev that some people wait until 5 minutes before the time alotted is over and then come. I encouraged my dad to go ahead and go. He has a steel rod in his back and etc; can’t stand for long. My mom tried to block me, saying it was rude to go, but I convinced her that Dad’s health was more important and he needed to be able to get through the next day’s funeral.
Enjoying your blog.

Wow. You are amazing. That is the sum of what I have been trying so hard to express to family and friends and couldn’t find the right words without hurting their feelings. I hate the “comfort her to make us feel better” attitude. Even right down to the examples at the end. You are an amazing person and I appreciate your forwardness and willingness to say what a lot of us are to afraid to say!! =) Thanks for sharing.

I remember praying for Josh. I so wanted God to heal him. I would pray and cry for him and Melissa. That was the time Melissa had the melanoma cancer stage 4. A parent does not want to lose a child and I had fear for you, Penny, Terry & family and also for us. Who know why one child dies and one lives? I don’t know. God knows and that is ok for today. I so loved you and Josh picking up the girls so many times for Youth on Wednesday nights. You planted seed that you don’t even know. Josh still lives on in all the good he did when he was here and even after his death.
God keep you and hold you when you feel as if things are overwhelming. My thoughts and prayers are with you.

Wow Debbie! Thank you for writing that… really should publish your “ramblings”. I felt like I was reading an article from a journal on grieving. You are awesome! Even though you are miles and miles away, your words are a comfort to me. Just to know you understand and we are not alone.
Hugs, Sue

[…] • Blog: Cardboard Walls « Coming Unglued […]

Hi, just wondered if this site was still watched, I would love to share my story.

I sure hope it’s still watched! Send me an email with your story – – we’ll see about getting it out there.

Take care!

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