Letting Go . . . a little bit . .

Posted on May 10, 2010. Filed under: Awareness, Ehlers-danlos syndrome, Life's Lessons, Uncategorized | Tags: , , , , , , , , , , , , |

Standing shoulder to shoulder with hundreds of other parents this past Monday on what turned out to be an absolutely sticky afternoon, I waited with my son as the crowd behind us pressed in.  Sixth grade students  from all over our county had descended on a parking lot to embark on the week they’d been looking forward to all year:  The Washington Trip.

Like all the other parents, I was excited, nervous and a bit scattered from the days of preparation and packing – reminding my son over and over what to do in a dozen different situations.  He’s 12 now; and definitely has the eye-rolling, shoulder shrugging thing down pat.  He finds his own ways to show his love – but clearly . . . open affection at the parking lot that night was not one of them.

I did sneak half a hug before he climbed the stairs to board his bus, and handed off his suitcase to the men loading the compartments below the seats.  Then clutching my Little Red Binder, I turned to the chaperone who was checking students off as they boarded. She smiled as she recognized me from our meeting earlier in the week when we’d gone over his medical condition.

First I handed her the Ziploc bag with his daily medication in it – explained when it would be time for the next dose, and then – referring to the binder – told her “everything else is in here”.  The Little Red Binder I still hadn’t let go of contained 13 years worth of documentation on my son’s rare genetic condition – Vascular Ehlers-Danlos Syndrome.

Inside that binder was every letter I’ve ever received from a doctor or lab – including the one with his original diagnosis.  There are copies of emails from doctors at Johns Hopkins and the NIH; and CD’s which hold images of his entire vascular system as well as the intricate soft tissue of his recently repaired right knee.

Watching from the crowd of parents as he darted back and forth on that bus – trying to save seats for his friends– it was very easy to forget that the Little Red Binder was even necessary.  Day to day he goes through life at warp-speed; only slowing down long enough to grab a snack, get involved in one of his gadgets, or torture his sister a little.

To see him with his friends, you’d never in a million years guess what lurks within the tiniest fibers of his tissues – or, rather, what doesn’t lurk.  Collagen.  It’s the “glue” that tissue relies on to stay in tact.  The disease he inherited from his father robs his body of this critical element needed to hold itself together.  But no matter how “normal” he looks, the same activities that may be just part of “normal boyhood” can lead to  tragedy for him.

I try not to dwell on it, and most days the reality of it is so far in the back of my mind I have to remind myself  some things are too risky for him.  But – risks aside – I wanted him to go on this trip – I wanted him to have this experience.  And for months we’ve been focused on is how much fun it would be.

However, that Monday night, standing in the warm, muggy air, reality was impossible to ignore as I looked at the chaperone waiting to take the binder from me.  I was surprised by how much I didn’t want to let go of it.  And when I finally did the old, familiar Cold ran through me; taking up residence somewhere between my heart and my stomach.

Denial is a funny thing  I suppose.  Looking back on it now, as long as I was the one holding the binder, I was still in control.  But letting go of it . . . putting that control in someone else’s hands . . . meant it was real.  No matter what he looks like on the outside – this is all real.   The whole experience drove home another reality for me:  I don’t have much time left as “the one” who makes the decisions.

He saw me lingering in the parking lot and gave me one of those “Geez mom, you’re embarrassing me” looks and as I turned to leave, it was clear to me that he really is going to grow up and I really won’t be able to monitor and watch over him like I do now.

A very dear friend of mine who passed away earlier this year from the same disease offered me his advice several years ago on what he felt was the best way to approach raising my son with this unpredictable disease.  Being an active guy himself who’d just come through some major health crises, he told me the hardest thing I’ve ever had to hear on this subject:

“Debbie, you’re going to have to learn that this is HIS disease – not yours. It’s his body and he will have to learn his own limits.  All you can do is offer him guidelines, but in the end – it’s up to him to limit himself.”

I still bristle at the advice – not as much as I used to though.  But, like everything else Glenn ever told me on this subject, it’s turning out to be completely right.

I’m trying, Glenn – I really am trying.

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The Other Side of the Nightmare

Posted on March 18, 2010. Filed under: Ehlers-danlos syndrome, Life's Lessons, Treatment, Uncategorized | Tags: , , , , , |

Twelve months ago I was forced to face an idea that terrified me.  Our local orthopaedic surgeon who was treating my son for the ACL tear in his right knee was telling me – in front of my son no less – that surgery was the only way to stop the worsening damage, keep my son out of pain, and keep him out of a wheelchair in adulthood.  He may as well have loaded a pistol, cocked it, and pointed it at my son’s head.  That was the feeling – that was the terror I felt all the way to my toes. 

“Surely he’s not serious”, I thought to myself, trying to maintain my composure.  “He doesn’t understand . . . . surgery could kill my son . . . he’s supposed to know that”. 

The dialogue in my head was  nearly audible; like trying to carry on a conversation with a radio blaring right beside me.  All my sirens, all my warning bells, red flags, you name it – were on high alert and that whole “fight or flight” mechanism we still carry around in our DNA was in Warp-Speed-Turbo-Drive-Mama-Bear-Mode.  The doctor continued talking calmly, telling us what “bad shape” the knee was in; that the injury had  worsened and his knee would continue to deteriorate unless we fixed it. 

Surgery was the one thing I feared more than anything else for my son.  Having lost my husband eleven years earlier, the geneticist who’d guided us carefully through that awful time gave me sobering, direct instructions with regards to my son’s care once he was diagnosed with the same life-threatening disorder. 

“Never allow him to have surgery – of ANY kind – unless it is to save life or limb; surgery is every bit as life threatening for your son as it was for your husband.” 

His words have been my mantra for all these years.   I learned some terribly difficult lessons during my husband’s illness – this is one I would make sure to remember.

Having surgery is so dangerous to my son and thousands of others like him because of the disorder he inherited from his father, Vascular Ehlers-Danlos Syndrome (VEDS).  For patients with VEDS, the soft tissues of the body – the skin, ligaments, etc. – and most importantly the veins and arteries that make up the vascular system are seriously compromised and weaker than in the rest of us.  The skin may not hold sutures, the tissue could tear severely, and even minor trauma could cause rupture of vessels, arteries, or organs.  Many VEDS patients are living with serious aneurysms and dissections and are NOT having surgery because of that risk.  How could I possibly consider surgery for a knee injury?

Two months and about five specialists later, including a surgeon at Children’s Hospital in Boston at Harvard Medical School, I was getting one clear, consistent message.  If I did nothing, if he continued to live with a torn ACL and torn meniscus, the outcome would be very poor.  Most likely, more tissue would tear, he would have more pain, less mobility, and start developing arthritis as early as his late teens.  As it was then, his knee was going out on him almost daily; with torn bits of tissue getting wedged between the bones in his leg preventing him from either straightening or bending it completely.  He could be standing perfectly still, turn to go in another direction, and be on the floor in a moment with no obvious cause. 

Figuring out what to do and then doing it was one of the hardest decisions I’ve ever faced.  However, once I started to research a little, I found some groups online for families with EDS, and I reconnected with old friends whose lives are touched in one way or another with Vascular EDS.  Some are patients who live with serious complications; some have survived unbelievable surgeries – procedures that were unimaginable when my husband was alive.  Many are parents just like me; raising kids with this horrifying disease and fighting like hell to get good information and find a cure.  Some are parents who’ve already lost their kids because there wasn’t enough information, or worse, because there was no diagnosis.  And yet they fight on for the rest of us, and for our kids; they put their hearts back out there on the line and risk getting them broken all over again just to make sure we and our children have a chance.

From where I sit now, safely on the other side of that nightmare, I am filled with wonder and gratitude.   I am filled with wonder at how I even got here; how such terror and late night panic attacks actually led me to the bravest group of people I’ve ever had the good fortune to know. 

My husband, my family, and my friends all have always given me their full support; but no one understands the heart-stopping reality of this disease better than someone who’s had to bury someone they love because of it.  Or someone who lives life everyday not knowing if the pain in their side is just a pain in their side or if the aneurysm they’ve been carrying around for years finally giving way.

In twelve months’ time, I’ve learned more about the possibilities of science and of the things regular people can accomplish when completely committed to a cause and to each other.  I’ve met more people living “normal” lives with Vascular EDS than I ever dreamed.  People I have never seen face to face and whose voices I’ve never heard – have fought this battle with me – cheering me on; giving me crucial information that in some instances probably saved my son’s leg if not his life.  So much of surviving Vascular EDS depends on the patients themselves and their support of one another.  As much as medicine and science is doing to help us all, without the open, loving support I have witnessed and experienced first hand, far more people would be lost. 

Years ago, before my son’s knee got worse and I found this dilemma staring me in the face, I debated the question of how involved I wanted to be with other EDS families; whether or not it even made sense to open up myself to more hurt.  Plainly put, whether or not I could handle getting close to someone who I could lose.  Could I survive that kind of grief again?  Did I even want to try? 

What a stupid question. 

It is only through opening my heart and risking that pain that I have found comfort; that I have found solidarity and been freed from the loneliness I lived with all those years.  Yes, it scares me.  And yes, it hurts – but isn’t that the point?  Being scared and being hurt are part of life – whether disease is in your life or not.  Being alone doesn’t have to be.  Why on earth would I choose that?  My life is indescribably richer, fuller because of  people who opened their own hearts, who willingly risk getting hurt themselves. 

Without them, without their late night emails, their obscure medical articles, their understanding, their crying with me, laughing with me, setting me straight when I needed it . . . I would still be terrified and alone.  I know enough about this disorder now to understand that undoubtedly there will be times in the future that I will again be forced to face my worst fears, that I’ll experience the paralyzing terror that comes when your child is in danger.  But now I also know, when that time does come –  I’ll not be facing it alone. 

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Posted on March 3, 2010. Filed under: Healthcare Reform, Life's Lessons, Uncategorized | Tags: , |

A local Schoolyard Bully (a.k.a. Average Health Insurance Company) told a class full of terrified children that if they “know what’s good for them” – no one will tell on him when the teacher comes back.   

As it turns out, the Bully has been taking lunch money from kids and promising to “take care of them “.  Convincing the children that they need his help, the Bully has collected the quarters, nickels and dimes of the entire class since the beginning of school.  Newer students have started handing over their money without question because they believe it’s “just what you do”.    

But according to multiple sources, when the children start getting hungry, the Bully is refusing to actually pay for their food citing the “Proof of hunger pre-authorization” clause that must be filled out before any food will actually be distributed.   Several children filed an anonymous complaint with their teacher that they are having to do without their lunches, even after Bully promised them.    

While the teacher left the room to speak with the cafeteria cashier, the bully reportedly  grabbed the smallest kid in the class by the throat, causing him to choke, cough, and turn purple.  According to eye-witnesses, the Bully told the entire class that if the teacher gets involved in the lunch money dispute, they will all be turning purple.  He claimed to be “giving them warning” and showing them “what it will be like” if the teacher begins to oversee the processing of the lunch money.    

Upon the teacher’s return, 98% of the students claimed they did NOT want the teacher involved and that to their knowledge, there wasn’t even a problem.  The boy who had been allegedly choked was unable to speak but speculation is that he would have most likely agreed with the majority of the class.   

In an exclusive interview, the Bully stated that there is no reason for the teacher to “get involved” or “takeover” the lunch money collection.  “Things are just fine like they are – we don’t need a teacher keeping an eye on us”.    

When asked about the supposed strangling incident, the Bully replied that while he had no direct recollection of such an event, he would readily address any specific student complaints behind the swing set during recess.    

“Teachers need to just leave us kids alone.  Why do they have to meddle in our business?  This is private stuff and everyone thinks it’s fine.  It’s just FINE the way it is.”     

When asked if he was blaming the teacher for the purple toned discoloration of the student’s face, Bully nodded in agreement saying,   

“Well, it’s for their own good – I’m just trying to show them what it will be like if the teacher gets involved.  I figure I owe them that much.”    

The student whose neck had allegedly been strangled refused multiple requests for an interview.  His handwritten statement, scrawled out in red crayon, said only: “Things are fine – just FINE.”   

The Madness

In the last few weeks, I’ve heard some pretty interesting things that insurance companies have told their customers.  One friend called and told me they were unable to get their prescription filled, even though it had been submitted to the pharmacy with a current, signed PAPER prescription from the doctor.  The insurance company wasn’t filling it because they said it wasn’t “pre-authorized”.  That’s crazy enough on its own – but wait – it gets even better.     

The next thing the insurance rep told my friend was that this is “because of healthcare reform”, (which is fascinating to me since no legislation has actually passed, much less gone into effect).  When I mentioned that to my friend, she shared with me the insurance company’s explanation for the “logic”.     

“We’re just showing people what it will be like if it does pass.  We think people should know.”     

Wow.  I don’t know if I should feel grateful or insulted.  Wait a minute . . . . yep . . . . I’m insulted.     

Then, a week or so later, it happened to me with a written, current prescription for a medication I’ve used for years.  When I was complaining about my dilemma on Facebook (which is a perfectly rational response I think), a completely different friend told me he’d called his insurance company about a similar situation.     

Guess what he was told.  Hmmmmm.  I think I’m seeing a pattern here.  I’m no financial genius or world-class economist, but . . . I am a mom who uses the hell out of our insurance and I smell a RAT.     

I’ve worked for doctors and have helped bill insurance companies including medicare & medicaid.  I’ve worked in the HR department of an international corporation explaining medical and dental benefits to employees of all income brackets and going through open-enrollments with them.  I’ve worked for an insurance broker who helps smaller groups find affordable insurance for their employees.  I’m not exactly unexperienced.  I know the procedures, I speak the language, and unfortunately I also understand the bottom line.  Which is, not surprisingly, the actual $$BOTTOM LINE$$.     

The Method and the Motive

Fear is one of the oldest, most effective motivators known to man.  The examples of its abuses are too many to name, but I’m sure you’re already thinking of a few.  When fear is used in such a widespread way, it’s often to help one person or group get power or stay in power.  In this situation, the fear is being perpetuated by huge insurance companies who desperately want things to stay exactly the way they are.    

Any time I’m trying to figure out who’s being honest in a given situation, I try to look at what each person stands to gain or lose, and judge their honesty based on what their motivations might be.  When an insurance company tells someone the reason they can’t get their prescription filled is because of legislation that hasn’t even gone through yet and/or they’re just “showing people what it will be like” if healthcare reform happens, it doesn’t take long to come to a conclusion.  Does the Insurance company stand to gain or to lose something if reform passes?  Absolutely.  They stand to lose and lose BIG.  Do they have a motivation to keep it from passing?    

Ummm . . . . yeah.    

Why would the insurance companies say those things if they weren’t true?  Because they need to block reform.  They are doing fine the way it is. They don’t want the government (which by the way is you and me) getting involved and keeping an eye on them.  They NEED things to stay just the way they are.  They NEED us to be scared.    

Of course they’re going to blame the government; of course they’re going to tell us it’s for our own good.  After all, we matter more to them than profits, right? They’re delaying the medication our doctor wants us to take because they care so much about us.   

The week I had to go without my medicine, I spoke to the pharmacist in person about it one time.  “Why would they do something like this”, I asked.  “Why would they hold up a medication they’ve been approving for years?”  He shook his head in frustration as he rang up my stuff and said simply, “Because the insurance companies control everything.” 


The Stuff that Matters Most

There are many smart, concerned, caring people out there who aren’t happy with the current administration, many of them are close friends of mine; and I really do respect their right to disagree and voice their concerns.  But this is not a political issue.  This is a human issue.  This isn’t about Republicans, Democrats, Libertarians, Tea Parties or any other group.  This isn’t about Obama “winning” or Obama “losing”. It’s so much more important than that.     

Healthcare Reform is about cancer, heart disease, stroke, birth defects, diabetes, rare diseases, broken legs, migraines, prenatal care, accident victims, Alzheimer’s, arthritis, kidney disease, chemotherapy, radiation, back surgery, knee surgery, hip-replacement, hysterectomy, childbirth, burn victims, rich people, poor people, old people, young people, people with jobs, and people without jobs.     

It’s about people living, or people dying.  It’s about children getting care their parent’s can’t afford or going untreated.  It’s about being able to see the doctor who’s most qualified for your condition whether they are contracted with your insurance company and not going broke in the process.  It’s about getting the test or treatment your doctor wants in time for it to do some good without getting bogged down by insurance procedures.     

It’s about strangers, neighbors, friends, enemies, co-workers, children, parents, spouses . . . . real people.  If you’ve been lucky enough to not really need your insurance to come through for you yet, be thankful.  Because one day you will.  Some of us have gone through it sooner than others, and trust me, it’s a pretty harsh wake-up call.     

Cancer doesn’t care who you voted for in the last election. Diseases like Vascular EDS don’t care who your insurance company is.  The heart attack waiting for you someday doesn’t give a damn if you have an HMO, PPO, POS, or whatever.   

Guess what . . . . when something like cancer strikes you – or God forbid your children – you won’t care either.     


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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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Paper Mountains

Posted on January 30, 2010. Filed under: Life's Lessons, Research Information, Uncategorized | Tags: , , , |

Surely everyone deals with piles of paper in various corners of  their home; or, at least I like to think I’m not the only one.  It occurred to me this morning while searching for my glasses (my cat is fond of knocking them off my nightstand) and I paused to straighten a pile of papers on the floor beside my bed, that what is not so common is the fact that in this pile of childrens’ drawings, school assignments, random phone numbers, receipts, and long forgotten bills, were several pages of articles from obscure medical journals about microbiology – regenerative medicine – procollagen synthesis – aortic aneurysms, etc. 

Every morning and every night I see that stack as I step over it getting in or out of my bed, but this morning for some reason,  I saw the irony of it.  There on my hands and knees, near-sighted and vulnerable, I realized for the first time (at least consciously) how incredibly and starkly unfair it all is – and that somehow in the last 12 years it has become so commonplace to me that most mornings I never even notice them.  For a moment I was amused at the thought- then was reminded of the injustice of it all.    And then, way back against the wall I saw my glasses – good try cat, but not good enough.

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