Monthly Archives: June 2014

Only Ivy Leaguers Get Raped Apparently

27 Friday Jun 2014

Posted by in doctors, empathy, medicine, outrage, residency

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I was once raped by an educated man. He knew a lot about sociology, philosophy, and medicine. He was also a misogynist who harbored a secret internal hatred for women which he hid very well from all those around him. It wasn’t any more or less traumatic because he was so educated. It wasn’t any more or less shocking to me because we were both studying to be doctors at the time. It was what all trauma is: Brutal and Terrifying and Life changing. When you know you’re in a position so powerless that you might be killed, education and institutional prestige are of little concern. But in the days and months and years that follow, you cannot be truly healed until you find your voice and tell your story in whatever form it is that your story needs to be told. When our society priveleges the stories of certain survivors over others (what of men, prisoners, spousal rape survivors?) it keeps us from healing as quickly as we should. I am glad the voices of certain surivors from Ivy League schools are being heard to the extent they are (I don’t delude myself into thinking things are great for them), but we cannot ignore the voices of so many others. We have a story to tell too.

There’s been a lot of media coverage of the campus rape epidemic lately. Which is a good thing. There’s been an outcry against George Will’s op-ed piece questioning the validity of a lot of these rapes and talking about the privileges attached to being a rape survivor. Also a good thing. But if you read the majority of these articles, you’d think rape and a lack of appropriate administrative response by universities only occurred at elite schools. It wasn’t until I was about a dozen articles in that I even knew a medical school, WVSOM ( West Virginia School of Osteopathic Medicine), was one of the 55 schools under federal investigation for failing to handle reported rapes appropriately. The only reason it got a mention in the article was the fact it was a lesser known school and I got the impression that the point the writer was making was that it’s a lot more shocking that rape victims get treated badly at an Ivy League school than at one of those lesser known schools.

What’s the logic there? Do people in the Ivy League have higher moral standards than us commoners ? Is the upper class known for its devotion to women’s rights? More importantly, regardless of how surprised you are with the Ivy League’s mistreatment of sexual assualt victims (as opposed to those low brow schools where you just expect people to get raped and then harassed by the administration apparently), does that mean that the voices of the men and women at the other 45 schools don’t deserve to be heard as well? Is it any less an outrage when it happens to someone at a lowly osteopathic med school? It’s a lot of questions and I’m sure you can tell how I would answer them, but I’d really like to hear how these journalists would answer them. I know no one is truly unbiased, but can’t they at least pretend, make some kind of effort to appear to give a damn about the rest of us?

When I mentioned the news about WVSOM to some of my fellow residents, they were genuinely shocked. Not only could they not believe a medical school would treat a student who’d been raped poorly, they honest-to-goodness couldn’t fathom the idea that medical students would rape one another. They really just couldn’t comprehend the idea of one of our kind being a sexual predator. Am I the only one bothered that our culture is promoting these kinds of ideas?

It is shocking someone from the Ivy League would rape. It is shocking someone studying to become a doctor would rape. Okay, then who is it that we expect to rape? Apparently we expect uneducated people to rape. I guess the idea is that education is a humanzing process? But rape is, in essence, a very human act. One of the most human acts really. Rape is about anger and the need to control, something every level of society has demonstrated since civilization began. Is it really so difficult to think that Ivy League men, so used to privelege and control, might not have a need to control Ivy League women too? Do medical school admission commitees really get a feel for how angry an applicant is? Unless they’ve been convicted of a felony or misdemeanor, probably not. (And if you’ve ever been in an OR with an instrument-hurling surgeon, you might question if anger in and of itself is a generally discouraged trait in the world of medicine)

I don’t suppose we’ll ever be as upset with the death of innocent civilians overseas as we will be with the death of innocent civilians in America. Maybe we’ll always mourn more for caucasian, suburban school children shot than we do for african-american inner-city kids killed likewise. But, I hope for better days. And I work for better days. My name is Elizabeth Spaar and I was raped in medical school. Yes, our kind do indeed do that kind of thing. Of course, it was an osteopathic school, so maybe you’re unimpressed.

The Waiting Room at Children’s Hospital

12 Thursday Jun 2014

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I’m sitting in the Children’s Hospital waiting room. Again. I’m here with The Ax this time (usually it’s Soldier Boy). We’re here to see Endocrine because he’s not growing very well. We see the specialist and she listens to our story and tells us that little Ax’s particular eating disorder is very strange. Maybe she doesn’t use the word strange. Maybe she says unusual or uncommon or not typical or not something we see very often. The exact wording is irrelevant. What matters is that I’ve found myself in a familiar place: getting unexpected bad news from a doctor about my child.

I’d been the one to request the endocrine referral from his PCP (my attending at the outpatient clinic my residency runs). He’d been seen by various doctors for his eating issues before. He’d been small for a few years. No one really thought it necessitated a visit to endocrine. I asked for the referral feeling like I must be overreacting, but also feeling I deserved the peace of mind an uneventful trip to the specialist would bring.

Little Ax had always been the healthy Yin to Soldier Boy’s multiple diagnoses Yang. I expected doctor visits for Soldier Boy to yield worrisome news. I’d learned to brace myself for it over the years. But this news, that little Ax might have something more wrong than I’d thought, came as a blow I hadn’t prepared for. My abdominal muscles were relaxed, my jaw slack. The punch landed and I went down like I had in the early days of the Soldier Boy medical saga.

They wanted bloodwork and an X-ray of his hand to assess growth trajectory. The results would take 7-10 days. She would call me herself to discuss them. I didn’t like the idea of the doctor calling personally with the results. Calling with normal results didn’t seem like a doctorly thing to do. Normal results don’t require explanation; there are no questions to field. If she was calling, it seemed like there was no hope of a normal outcome. I did not say any of this. My mind was relatively blank as minds so often are in the presence of physicians. We should come back in three months, she said, so The Ax could be weighed and measured again and she could get a better idea of how he was growing. Any questions? No, thank you for your help. They’ll direct you to the lab when you check out. X-ray is on the second floor.

We sat in the waiting room for the lab for an hour, Ax on his computer and me on my phone, texting all the interested parties awaiting the results of his appointment like it was election night. You hear the moms discussing what diagnosis brought them there. One mom of what appears to be a six month old baby boy relates he has cystic fibrosis to another mom there with her diabetic tween daughter. The life expectancy of those diagnosed with CF had increased significantly in recent years but is still much shorter than the typical person. This always happens in the waiting room at Children’s. You always find someone with a burden greater than yours, right when your pity party is in full swing.

The interesting thing about it that I’ve found out over the years is that a lot of the families I think are worse off than mine, think the same thing about me. There’s no precise hierarchy of the lost dreams we carry for our children. Some of us go into it stronger than others; some of us surprise ourselves with the strength we develop under the tensile stress of it all; some of us, I suppose, fall apart either for a time or completely.

A woman leaves the lab with her tiny newborn baby on her shoulder, her belly still swollen from the birth that couldn’t have place more than a week ago by the look of it. I remember when I was here with Soldier Boy when he was just a few days old. It’s a bad memory. I’d like to put some beautiful spiritual spin on it, but I can’t. Watching them put the needle into your tiny newborn’s arm is just an ugly thing. Having doctors tell you there is something very wrong with your perfect little newborn is heartbreaking. It’s not a break that ever completely mends.

I go to ask why it’s taking so long for us to be called and they tell me they paged us quite a while ago. My pager didn’t go off, I tell them. They offer no apology but tell me he will be called soon. The Ax is calm as the phlebotomist draws his blood, asking her questions about the meaning of the different colored tops on the vials she uses to gather his blood. She says he reminds her of her own son. I think that it’s a nice thing to say, but it’s a thought detached from feeling. My heart is in a sad place from long ago.

We finish and head to radiology for the X-ray of his hand. I remember taking Soldier Boy there for CTs and MRIs of his brain. It doesn’t feel like a memory; it feels like I am there. Is it possible to get PTSD from having a sick kid? This feels like a flashback. I remember how stifling the crowded waiting rooms full of kids and parents felt. That “Max and Ruby” had been playing on the waiting room TV that day of the first CT. I remember looking at the cartoon bunnies and commenting to Soldier Boy’s dad that it would be funny if one bunny began humping the other as our pet bunnies at home often did in their eternal battle for dominance. We laughed. We had to.

I think of it now as I look at the Ax happily chattering to someone he’s introduced himself to in the radiology waiting room. You have to laugh, I remind myself. There are so many more happy times than struggles for my kids. So many happy times ahead for them along with the struggles. Grieving demands our attention but we must make room for laughter too. Laugh now while you bide your time in the waiting room. Tomorrow has enough worries of its own.

How Natural Childbirth Made Me a Better Special Needs Parent (and a better person in general)

04 Wednesday Jun 2014

Posted by in autism, parenting, special needs

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I decided to do natural childbirth when I was pregnant with my first child back in 2004. It seemed like a no-brainer at the time. Epidurals led to more interventions in labor including c-sections. There was research out at the time showing that the use of epidurals in combination with pitocin in labor might be triggering genes for autism in newborns. Women had been giving birth naturally for hundreds of thousands of years so surely I could too. I read up on the Bradley method and devoured all of midwife Ina May Gaskin’s books. My son’s father and I attended all the classes and developed our birth plan which we shared with our L&D nurses as soon as we arrived at the hospital.

My nurses were less than supportive, offering me an epidural every time they came in to ask me to rate my pain on a scale of zero to ten (I have since then had two more babies with absolutely wonderful nurses, so please don’t take this as a generalization). My obstetrician had instructed the nurses to start me on pitocin over the phone. He was driving home from his call shift early and decided to go with the nurse’s exam instead of coming in himself. I was already in labor but my water had broken several hours earlier and they wanted to reduce my risk of infection by getting my baby out as soon as possible.

I’d wanted to avoid pitocin but there wasn’t much I could say, especially since the ordering physician wasn’t even there. Cross that one off the birth plan. My son’s father and I decided to make the best of it. I wasn’t allowed out of bed because they said intermittent fetal monitoring wasn’t allowed since I was on pitocin (although they did allow me to do intermittent monitoring with the labor of my second child when I was using midwives, so either it was my OB’s policy or a lie of some sort). I moved position within bed as much as I could to promote my son’s descent into my pelvis. Every time I did, Nurse Ratchet would come in all in a huff and readjust my belt monitors gruffly.

And so it went. I delivered my beautiful son naturally and a bit angrily that night shortly before midnight. He came after just three rounds of pushing with the umbilical cord wrapped around his neck three times. There was an ER resident there and I think she might have been the one to actually deliver him, but I wasn’t all that concerned with the details at the time. The hands catching him counted as a detail. They laid his wet little body on my chest and I looked down at him and thought how small he was, and how much a stranger. I’d been talking to him and bonding with him so strongly over the past 9 months in my belly, and now here he was. He didn’t look like the cherubim of a baby I’d imagined him to be all those months. It was a little disorienting. Like talking to someone over email for nine months and then meeting them in person.

I quickly got over these feelings, though, and looked at what a beautiful, perfect little person my son was. We couldn’t believe how complete and detailed he was: he had little fingernails! Little eyebrows! He was so amazing. I loved him so much, in a way I’d never loved before.

We took him home shortly after. He checked out well by the pediatricians at the hospital and then by our pediatrician in the office. He was losing a bit too much weight because he didn’t breastfeed real well, but otherwise things were fine. Then came the moment that divided Before from After. The moment our lives changed forever.

It was Sunday June 13th. My baby was five days old. I was in the nursery when the phone rang. I left the baby with his dad and went to answer it. I expected it to be my mom calling to check up on us. It wasn’t. It was my son’s pediatrician. My stomach sunk. My heart began to beat a little heavier in my chest. Doctors do not call on Sunday afternoons with good news. They do not pull themselves from after-church lunches and pick-up basketball games with their teenaged sons to call and check how your newborn is doing. They only call when it’s bad.

He began asking if my baby was throwing up, had diarrhea, was overly fussy, and a whole lot of other questions. I told him no to all of them. My son was fine. Not the best nurser in the world, but fine. He told me that they’d drawn some blood at the hospital that they do on all the babies to screen for certain conditions and my son’s had shown he had something called galactosemia. Galacto-what-ia? He gave me a brief rundown. It was a metabolic disorder where eating certain things, like dairy, hurt him. I needed to stop breastfeeding immediately and put him on soy formula. But what about the benefits of breastfeeding, I asked him. He said I absolutely needed to stop feeding my son milk now. I could pump the breast milk and freeze it for now until all the confirmatory tests came back. I was to take him to see the medical genetics physician first thing in the morning. A specialist seeing us first thing in the morning on less than a day’s notice? This could not be good. This had to be very bad.

When we went to see the specialist the next day, they caught something on their exam the other doctors hadn’t. My son had a small head. It had nothing to do with the galactosemia. This was another medical problem altogether. Over the next year months he received more diagnoses. All of them seemingly unrelated. His first developmental delay manifested itself at twelve months. The autism diagnosis didn’t come until he was four. We didn’t know the extent of the visual issues (he is legally blind) for sure until he was five.

I’m not sure which of his many diagnoses was the toughest to find out about. You would think it might be the first one, or the one that would most affect his life, the most disabling one. But I think the hardest ones were the ones that came just after those first two we found out about that day at medical genetics. It seemed like every time I took him to the doctor, he got a new diagnosis. All these doctors talking about all these things wrong with my baby. Couldn’t they see he was perfect? It was an unrelenting, seemingly never ending process. It wore me down.

After the shock and the drama of the initial diagnosis came the day-to-day work of raising a special needs child. Doctor appointments, regular blood work, therapy sessions (physical therapy, occupational therapy, speech therapy, vision therapy….), IEP meetings, finding adaptive material, figuring out how to get him toys that clearly say they’re for much younger kids on the box without upsetting him. And then there’s the emotional work of coming up with new dreams, reigning in the worry of potential challenges yet to come, and accepting and embracing your unexpected life (over and over again).

I have handled these challenges with grace at times, and other times, not so much. But I have weathered the storm thus far, ten years in, and I can tell you there are certain things I went through before it all began that have helped me through the bad times and helped me to enjoy the good times even more. One of those experiences was his entry into this world pain medicine free.

One of the things I learned heading into my natural labor was to think of the contractions as ocean waves. I shouldn’t resist them, shouldn’t tense up and fight them. I should relax my body and let them wash over me. Easier said than done. I know there are those who’d disagree, but for me, contractions are damn painful. I know intellectually it’s the body’s way of opening up the cervix so your baby can come out, but it feels like I’m in a vice grip. Relaxing and accepting the worst pain of your life is not necessarily a natural response. What can make it even harder, is laboring in an environment where people are constantly offering you pain medications and telling you you’re better off with them. One analogy people offer is that if you were shot, you’d use pain medication, so why go through pain for childbirth when there are readily available pain medications? My thought on that one has always been: because getting shot and bringing a baby into the world are really just so similar? No major differences there at all.

Natural childbirth prepared me for the journey of special needs parenting in several ways. Listed in no particular order:

1.It Made Me a Little Fearless
Natural childbirth was the hardest thing I’d ever done up to that point in my life. It was physically and psychologically demanding. I was more tired than I’d ever been afterward. They say that’s why they call it labor, because it’s hard work. Corny but true. Our culture isn’t supportive of natural childbirth and an awful lot of OB’s aren’t either. Just making the decision to do it can require some fearlessness in itself. Having to stick with that decision with people resisting it while you’re laboring, being stretched to your physical and psychological limits, is pretty hardcore (I say this as a doctor whose watched laboring women do this, not as a toot-my-own-horn statement). You need to be a little fearless when you’re rasing a special needs child too. The fear of your unknown future, of doctors you must stand up to at times. You have to set the fear aside for you child, so you do.

2.It Helped Me to Learn to Accept
Coming to terms with your child having special needs is a grieving process, and one that doesn’t stop after the initial stages you go through with diagnosis pass. You continue to grieve as the years go on, with all the day-to-day challenges of each new stage of your child’s development (and your own). What is essential in this process is acceptance. You have to accept your situation before you can begin to process it and do what needs to be done to make the best life for your child and the rest of your family. Fighting it is as useless as fighting labor pains. The best thing to do is force yourself to relax and accept it. I know forcing yourself to relax sounds counter-intuitive, but faced with the pain of those contractions, I learned how to do it pretty quickly.

3.It Showed Me I Could Do Anything When it was for My Child
I remember clearly holding my week old newborn son as I sat in the nursery glider and crying, begging God not to take him from me. At that point, my son’s doctors thought he might have a chromosomal disorder but they wouldn’t say which one. I began looking up chromosomal disorders on the internet (I wasn’t a doctor yet so I took to Google) and found several of them that carried an average life expectancy of two or three years. I was terrified he might die young, so I bargained with God. If you let him live, God, I will do anything. I will walk through hell for him. I will go through the pain of childbirth for eternity, if you will just spare him. And I meant it. Since then, when I go through something difficult, something really difficult, something I feel like I simply cannot do because it seems genuinely impossible, I think of that moment. I think of that promise. It’s ten years later and he’s still here. I owe him my all, even the impossible at times. Knowing I got through something as hard as labor for him, and that I was willing to do it again, keeps me motivated.

4.It Showed Me Sometimes We Have to Fight for our Children
Special needs parenting, especially of kids with autism, involves a lot of fighting. You head into it naïve. You think everyone must want what’s right for a special needs kid. You think, even if they don’t, they’ll follow the laws set up to protect the rights of people with disabilities. You’re wrong. Very wrong. You quickly find out one of the main jobs you have as an advocate for your child is putting on your armor and going into battle for him. I once fought a certain insurance company for two years to get them to comply with the law in Pennsylvania that requires them to pay for the formula of infants with galactosemia. They had an attorney blocking me. I didn’t get them to pay for it until my attorney sister got the Governor’s office involved. The fights with the school districts are fairly universal. My son (unfortunately) has moved a lot in his ten years. He’s been in five different school districts and not-a-one gave him the accommodations he needed without me fighting them for it. Fighting the OB’s and nurses and court of public opinion in order to bring him into this world as safely as possible with a natural birth got me ready for that. I was fighting for him right from the start. Before the start really.

5. It Showed Me What Love Could DoIn the end, the most important thing I took from natural childbirth was seeing just how deep my love for my son was, even before I’d met him. It hurt, yes, but only for a time. From that hurt came the entry into the world of one of the most amazing human beings ever to live (in my opinion, anyway). We risk a lot when we decide to bring a child into this world of ours. Miscarriage, infertility, stillbirth, crash c-sections. And the risk, of course, of having a child with special needs. If we face it all with love, though, we see this is the stuff of life. We’re so afraid of pain in our society, both physical and emotional, we do desperate things to avoid it. We abort babies whose genetic testing doesn’t yield perfect results. We schedule labor inductions and pre-order our epidural to make labor convenient and pain and stress free. We wait to have children until we are in the perfect financial and professional situation. We delude ourselves into thinking we have control over things that, ultimately, we don’t. We attempt to escape this pain we fear so much, but in doing so, we become less human. We weren’t put here to live the easiest life possible. We were put here, quite simply, to love one another. When you are the parent of a special needs child, you are given the gift of being reminded of this truth on a daily basis. I got a head start when I found that love in the pains of labor.

Natural childbirth is intense and so is life, if you do it right. I have to believe an experience that half the world has been having since the beginning of time must have value to it, despite what our society says. I don’t believe we’re meant to spend our lives hiding from things that seem hard. That includes parenting special kids. And I don’t believe you’ll ever know the intensity of love and joy I have known if you don’t do the same. Don’t sell yourself short. Life is waiting for you.