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Complex Medical Conditions Do Not Equate Mental Illness Or Neglect

For many, becoming a parent is an inherent, indescribable experience that subconsciously transforms you into a fiercely protect caregiver. When your child becomes ill, your natural inclination is to seek medical attention and abide by the doctor’s orders. However, if the illness is caused by a complex medical condition, sometimes answers are not as easy to find. There comes a point in which, after numerous attempts to find the answer, the burden of proof appears to be placed upon the families or even the patient themselves.

With the embattled medical negligence case between the Pelletier family, Boston Children’s Hospital and Massachusetts Department of Child and Family Services (DCF), it brings to light the struggles of treating a complex and poorly understood medical condition, patient and family rights, and quality of life issues. I am not a medical expert, I am not a lawyer, and I do not know the Pelletier family. I am someone who struggles with a rare medical disorder, and thirty years ago I was Justina Pelletier.

In May of 1984, after numerous hospitalizations, tests, visits with specialists and multiple incidents of respiratory arrest, local doctors in collaboration with Boston Children’s Hospital were out of answers and filed a complaint against my parents with DCF. The complaint was based on unsubstantiated claims by someone who claimed to be an “acquaintance.” There was no home visit, no interview, not even a second opinion from an unaffiliated medical expert. My parents were accused of medical negligence even though they followed the advice of the pediatrician and the hospital’s attending physician.

Reading the report, I found it not only to be inflammatory but completely devoid of any factual evidence. There was no mediation or care plan developed between the hospital and my family, only threats echoed through the Department of Children and Family Services. When my father questioned the DCF case manager on the legitimacy of the accusations, her response was that she read the report and “just knew.” While I understand the intended purpose of these investigations is for the best interests of the child, that is not what happened with my family and it doesn’t appear to be the case for the Pelletier’s.

When you look at the Justina Pelletier case, it is mind-boggling; it feels like there has to be something more to the story that’s not being told. How could a world-renowned hospital and an agency dedicating to protecting children be responsible for the implied child abuse and child neglect? If you do not have firsthand experience, it’s hard to imagine. For my family and I however, we feel overwhelming compassion after every press release for Justina Pelletier.

Luckily in my case, my parents were able to reach an outside specialist who performed an emergency bronchoscopy – a procedure Children’s Hospital was capable of but failed to do – and located the source of my life-threatening respiratory distress. A rare structural birth defect called an “innominate artery” caused my aorta to cross over my trachea, crushing it, and in conjunction with a smaller lung defect would have cost me my life had my parents not pushed for more answers. Approximately one month following the DCF investigation, surpassing typical life expectancy for the defect, I had lifesaving cardiac surgery at Massachusetts Eye and Ear Infirmary, a world-renowned teaching and surgical facilities for disorders of the head, neck and chest. Had the Department of Children and Family prevailed, it would’ve killed me.

My health struggles did not end following the surgery. After twenty years of multiple surgeries, injuries, and complications, I was diagnosed with ehlers-danlos syndrome. The genetic specialists at Brigham and Women’s Hospital of Boston compared my medical history and, combined with my clinical presentation decided that I fit the profile for the hyper mobility sub-type of Ehlers-Danlos syndrome. My defective collagen and its systemic effects validated my experiences and helped me build a care plan with my team of specialists. In doing so, it helps ensure the best quality of life possible. Justina Pelletier and all patients with complex medical problems deserve this.

“Doctor shopping” is a term thrown around when a person seeks answers from multiple providers or alternate treatment. Being proactive and locating appropriate treatment is not doctor shopping. Complex medical conditions do not equate psychological imbalance or parental medical negligence.

Now that the state of Massachusetts has been granted permanent custody of fifteen-year old Justina, the irony is inescapable. If Justina’s condition is purely psychosomatic, as suggested by Boston Children’s Hospital, and her parents are to blame? Why does she continue to deteriorate whilst presenting with tangible physical symptoms? If her parents have not been permitted contact with her, surely there has to be a more logical answer. The fact of the matter is Justina Pelletier is being punished for being ill while the witch-hunt against her family plays out on a national platform.

My hope is that Justina is as fortunate as I was and receives the medical care she so desperately needs … before it’s too late.

Have You Ever?

Have you ever gone to school early to decorate your friend’s locker for her birthday, only have the candy and supplies – the ones you saved up your babysitting money to buy – stolen by some bonehead boys and suddenly, there’s a game of Monkey in the Middle in the halls?

You’re the monkey.

Kids walk by, teachers pass, no one helps you get your stuff back. Moments before your friend arrives, a pretty, popular girl shows up to her locker across the hall and the boys give her the stuff you wanted to give your friend. Your friend finds you sitting teary-eyed in front of her locker with a few meager pieces of candy and streamer shreds to give her, and she gets upset and blames you for ruining her thirteenth birthday.

Have you ever come upon a group of kids who hush as you approach and resume whispering and giggling, pointing at you as you turn down another hallway? You swear you hear your name, so you turn around to give them a good glare you’re are met with raised eyebrows and “What are you looking at, freak?”

Have you ever been assigned to sit next to same pretty, popular girl in class who, when you have to work in pairs, hands you the assignment and instructs you to do all the work while she mocks you? She calls you poor, says you only own one pair of jeans, even though you have many pairs of jeans. When you get eczema on your face partway through the year, she and the cute boy behind you laugh about your “beard.”

Have you ever walking through the cafeteria with your best friend and had kids call out names, insults, and threats? You give them the finger and try not to cry while your best friend stays silent because she’s too afraid to trade her invisible status for yours – the target.

Have you ever been on the bus, chatting with your best friend, when the kid behind you starts making fun of you, calling you fat and stupid? This time, when your friend tells the kid to cut it out, he calls her ugly, says she has a unibrow. You’ve been mocked for years, his insults don’t bother you, but your sweet friend, she was just trying to help you – why would he go after her?

You tell the kid to cut it out. He doesn’t listen. So you punch him in the face. But you’re on the bus, which is school property. He gets is a bruised face and wounded ego while you get two weeks detention.

Have you ever been chosen to give the final book report in class; you’re super excited because it was a great book about bulimia, while everyone else gives book reports on Artemis Fowl and Twilight? You know you’ll be taunted by your classmates so you get to the front of the room, look down at your note cards, look at the class and your teacher, all waiting expectantly. The kids smirk and murmur to each other. You open your mouth but nothing comes out. You can’t speak. The whole class laughs at you but you know they would have laughed harder if you’d given your report so, at least, you escaped that.

Have you ever worn red lipstick to school because it makes your skin look dewy and your eyes look smoldery, and because it’s your birthday and you wanted to do something special? Only when your teacher makes you stand up on your chair so the class can sing happy birthday, your classmates begin to mock you. Your teacher makes no effort to stop them. You escape to the bathroom to find that red isn’t just on your lips, it’s on your underpants and dammit why today? You have to go home early because the cramps are so bad you can’t sit up straight and the red lipstick wouldn’t come all the way off and you look sort of clownish.

Have you ever been in class, minding your own business, when a girl – a friend – someone you’ve known since kindergarten calls you “goth” as if it’s a bad thing? When you point out that your blouse is bright blue with flowered embroidery, she says it doesn’t matter, you wear black every other day – besides, your skirt is navy which is basically black. The boy next to her calls you emo while the boy on your other side says you probably like death metal. You like Hannah Montana and the only reason you wear so much black is because your mom only buys you black clothes because she thinks you like them. You don’t say this, you bark a “shut up” because you’re starting to get angry and you don’t want this to escalate into a full-blown episodes. The teacher scolds you for telling your classmates to shut up and for chatting when you should’ve been working. You just grit your teeth, nod, and apologize.

Have you ever been pulled aside by a close friend to have her tell you that you’re not “cool enough” for her anymore? You two stop talking. A year later, your families got together, which was awkward at first, but then you played together – you thought you had your friend back, but when you waved to her at school, she pretended not to see you.

Have you ever had your only close male friend whom you walk with to and from the bus refuse to sit with you on the bus? He was afraid that the other boys would find out he thought you were a pretty cool person.

Have you ever had a favorite teacher who you adored and looked up to? Have you ever been put into a class with one of the biggest assholes, that teacher, the same one you thought could do no wrong puts you in a group with that jackass? When you talk to this teacher after class, explain that working with the boy causes personal conflicts, she says she can’t do anything about it – which is bullshit you choose to believe.

One day, that boy gets you all worked up, making it impossible for your group to accomplish anything because he’s making faces and interjecting rude comments whenever you suggest something for the assignment and finally, you blow up. You’ve learned that anger is a better response than sadness – tears provide the bullies with too much satisfaction. Your teacher, witness to the whole thing, comes over, and you think “thank god, she’s getting rid of him. We can finally get some work done.” But instead, she pulls you aside and tells you that your reaction was inappropriate; she expects poor behavior from him but not from you.

Like that makes any sense.

Have you ever had boys spread rumors that they were dating you because you were the “pretty pariah?” Then, kids come up to you and ask if you’re dating what’s-his-face and you say no, you’ve never spoken to him. You think they’re talking about that kid but you aren’t sure; you really don’t know him. And the kid asking you about it says that the boy has been telling everyone that you’re going out. And another kid comes up to you; he heard you broke up with what’s-his-face for so-and-so and half the grade thinks you’re dating a different short, fat kid. You think about it and you can see why they’d believe it.

These boys, were you dating, could help with your social standing, but you’re 11 and don’t have any interest in dating so you tell the kids that you’re not dating either boy and they leave you alone, now uninterested in you.

Have you ever been made to sit in art class with several of your tormentors, while they all ask you questions – why you’re so weird, why do you cut yourself, what made go goth?

You’re not even goth.

You’re so angry that you can’t form a coherent response there are a million things you could say but if you bothered, they’d turn it around on you. So you cut the construction paper roughly while they laugh at your agitation. When finally take a swing at one of them, they give you a dumb nickname – Swiper the Fox from that kids show Dora. The teacher thinks it’s cute but really, they’re mocking you.

Have you ever had a nickname that made no sense, but everyone called you that like it was a dirty word, the way your grandfather says things like “liberals” and “feminism?” So you walk down the halls and boys whistle at you like you’re an animal, while the girls hold up their hands to signal “STOP” just like in that Dora cartoon. One boy doesn’t just say the name; no, he calls out the song – “Swiper no swiping, Swiper no swiping, Swiper no swiping!” You see red and tackle him to the ground. A teacher pulls you off. You’re in trouble for being violent and he gets a warning for the bullying. You don’t know why your kind of mean is worse than his – wounds you inflict heal, but the bullying has left emotional scars that never fade.

Have you ever had a teacher call you morbid in front of the whole class because you wrote a journal entry about your cat dying? The same teacher who, just days before, said his favorite play is MacbethYou’re the morbid one? How does that work?

Have you ever come home from a day where any, all of these things happened, and you just wanted to fall into your mother’s arms and sob, but you’re in middle school now, you’re a big girl, and like Fergie said, big girls don’t cry, and besides, Mom doesn’t have time? Your little brother has another ear infection, she has to pick up your sister, the baby has been crying all day, she doesn’t know what to do so she really can’t listen to you whine about your life. She has a husband who’s never home, four young children, bills to pay, a house to keep clean, errands to run, and a dissertation to write.

Have you ever felt you were carrying the weight of the world on your shoulders, but your problems were too petty to discuss? You should suck it up and get over it; the mean things other kids say shouldn’t bother you, you’re not important enough anyway.

After all, the only person who listens is your psychiatrist, and you don’t even like him – he’s paid to listen to you, it isn’t genuine.


The worst part about watching someone make the same mistakes you did is knowing they need to make them in order to be enlightened.

I feel I am finally far enough removed from the toxicity of my previous relationship to see how unhealthy it really was.

I like to think this isn’t a reflection of my detest for him because of all he did to me, but rather a truer picture through the lens of hindsight of just how destructive he really was.

I don’t want to paint myself as a victim of abuse. The only marks he ever left on me were self inflicted, save the time he pushed me into a doorway while trying to move past my shaking frame as I tried to calm him down. He didn’t mean to. He never ever struck me, threw anything at me, or brandished a weapon.  But words can be a weapons, too. And there were a handful of times I did fear for my life.

I learned early on in our relationship that he had a temper. Throughout the years, The years brought lessons such as “When he is in Rage Mode, there is no reasoning with him” “Try not to cry, because that will only make him yell more,” and “Do not ever, EVER bring up a touchy subject while he is driving.”

I made the latter mistake multiple times before I learned. The conversations would begin innocently enough, a petty argument or a heavy topic, but before I knew it he would be driving upwards to 90 miles per hour, screaming at the top of his lungs, telling me I “wasn’t just going to cry my way out of this” if I let on to my fear. Would he snap out of it this time, or would he slam on the brakes and tell me to get out of the car, miles from home?

That’s just it though, because eventually he would snap out of it. He’d go back to being the caring man I thought I had, drying my tears, apologizing for raising his voice, making sweet gestures “just because” in the weeks following his outburst. I would honestly say that about 75% of the time, he was a really good boyfriend. Fiance. And eventually, husband.

But the other 25% was a nightmare. He was volatile, moody, and I never knew what might set him off.

I recently told a close friend of mine that once you begin trying to convince yourself that the “good outweighs the bad”, there is clearly enough “bad” in the situation to warrant a second thought. That 75% of a relationship, (some weeks 60%, some days barely ten…) was something I rationalized that I could be happy in for the rest of my life. But like most things, I couldn’t see how much that 25% was sucking the life out of me until I finally hit a point of realization after things got worse than I ever imagined. And I was too busy defending him to heed the thoughts of close friends who knew I deserved better.

Friend, I wish I could save you the heartache, the fear, the oceans of tears, but I know I can’t drag you to the point of realization. You may be making the very mistakes I did, but I know you need to see that for yourself before you’ll take action toward the life you so deserve. But your true friends, your family, we all love you. Know that. And if you, like I did, fear that being alone is a worse fate than anything he could put you through, know that it’s not–you are more alone right now with him than you probably realize. The thing about enlightenment, though, is that it rarely comes as an epiphany. You’re probably not going to suddenly wake up one morning with the determination to leave. But eventually, I hope you’ll begin to form the necessary resolve.

And when you finally leap, don’t doubt for a second that there will be people who love you waiting with open arms to break your fall.

Letter To My Parents

Dear Mommy and Daddy,

We miss you. It has been a painful few months and I still have not accepted it. I still think that this was all a big joke and you guys will drive up in the driveway all happy and we will go back to being a small dysfunctional family like we were before all of this.

I look at pictures and just cry because I see how happy you two are in them, and I force myself to believe I will never get to see you two that happy again.

I just can not live in our house anymore, or even in our town. Everyone is telling me I can not keep Mia or Dokee, that I have to sell them. You both understood my love for them and that in a time like this I need them. So, I’m leaving to go to college somewhere. I want to become a vet like you always thought I needed to be, Daddy. I can not say that I have the best grades, but I think if I clear my slate and move on, I will succeed.

I have lost so much weight and now am twenty pounds under weight. I can not sleep at night. I am so depressed and ready to just give up. I can’t do this I can’t be told at eighteen that I have to pay bills and find a way to feed Steven. I just want to get away from it and hide.

I just want to get away from people telling me I have to sign this and this. Why did you put me through this, why have you done this? Was I that horrible as a child? Was  it right to put me through this? Do you really believe I needed this?

– Sam

“Special Day”

Today was my two month anniversary. Now, you might be pretty happy for me, but let me explain how it went.

First he was gone all morning to watch his brother, ok no big deal, it is a family thing. Next, just normal talking and flirting pretty fun and I was happy to talk.

Then he got upset and started saying negative things, I honestly thought he was going to kill himself and he was swearing at me a lot. I got so upset with myself that I said “I deserve to die.” This just made it worse and he offered no support or care.

It’s like I can’t be upset. I can’t be hurt or need a minute to heal. He makes excuses as to why he is upset, or treating me poorly, or just not trying to make today special. After about 3 hours of that we talked it through and I calmed him down.

Happy fucking two months to me.