Sunday, October 15, 2017

The inside, the outside

Right now I'm walking a tightrope between anxiety and depression.  After my 6th miscarriage, about six months ago, I was generally ok enough to function. I could get out of bed, go to work, exercise, parent, clean my house, walk the dog. I had days where I struggled and days where I struggled a lot. But mostly I was doing an adequate job of managing my emotions. I was hopeful that a referral for another reproductive endocrinologist was going to illuminate whatever hidden issue was killing all my unborn children.

The last reproductive endocrinologist I saw in Germany had told me that there wasn't anything wrong with me besides an iron deficiency (no doubt caused by blood loss) and a bit of high blood sugar. But since I was pre diabetic instead of diabetic there wasn't anything preventing me from having a live birth. I started taking medication that took care of the high blood sugar. She also said she couldn't find any evidence of the congenital uterine anomaly reported by the surgeon who performed my c-section. I was given the clear to try to get pregnant again as long as I was taking iron supplements.

That doctor ended up being so, so wrong. That fetus died. It was number five. My next doctor was American and she performed a test which confirmed a congenital uterine anomaly was present, but she told me this anomaly would not interfere with a future pregnancy. I was once again given the green light to get pregnant again. That fetus died. It was number six.

A familiar pattern had emerged. I would go to a doctor telling them I thought something was wrong and they would tell me everything was fine. They all said I was young and healthy and could carry a fetus to term. Then I would have a miscarriage. This has happened over and over and over. So many times. So many dead. So many appointments and questions and a great deal of frustration and suffering on my part. But these doctors are all I have. They're my only hope so I have no option but to trust them. Even though they are always wrong.

Hope has kept me going through years of loss and unspeakable grief. I thought if I just tried hard enough, if I was willing to suffer enough, fight enough, persist enough, someday I was going to have another baby. I was willing to makes whatever sacrifices were required. I loved each and every unborn spark of human life. From the poppy seed I lost at five weeks to the tiny perfectly formed male fetus I lost at ten weeks. I can feel their terrible absence through each breath of the day. Having a carried one baby already, it was impossible for me to diminish the gravity of what was gone. Everyday I can feel the missing pieces pulling at my heart and mind.

The second reproductive endocrinologist was American. He enlightened me to the inconclusiveness of previously done tests which had confirmed a congenital uterine anomaly. He believed that was the issue and that it could be corrected with surgery. Having been mislead by so many doctors and having had so many contradictory diagnosis in the past, I was skeptical. But I went for an MRI because I was still willing to do anything.

When the MRI results came back positive and I was told I needed surgery and that this surgery was the final answer. I was still skeptical but I was also elated. I finally had a diagnosis and a treatment. This is where things started to go downhill. The reproductive endocrinologist wouldn't perform the operation for some very convoluted insurance reasons. My medical group referred me to another doctor who couldn't operated either. Suddenly I was trapped in a hellish cycle of possibly having a treatment but not able to find any doctor who could operate that was covered by my insurance. Months went by.

When I finally found a surgeon who could help me she requested to see all the original test results and declared all the test inconclusive. Surgery might be an answer or it might not. They wouldn't know until they actually did the operation. Having found a doctor, now all I needed was a referral from the medical group. This seems like a simple thing, but as weeks past I was issued three different referrals. All were rejected because they were incorrect or incomplete. I spent hours on the phone with the health insurance, medical group and doctors trying to understand what was happening to me. The hope that had sustained me throughout the last years started to die. And it's death had terrible consequences.

Suddenly I went from an organized, energetic, type A personality to something completely unlike myself. I had nightmares. I was constantly anxious. I was paranoid and wrestled with my rage. I was impulsive and reckless. I couldn't tell if my feelings were real or if they were a product of the onslaught of hopelessness and fear. All I could think about was the still unbeating heart of fetus number six. That black and white ultrasound was seared behind my eyes. I kept hearing my ob/gyn at the time telling me everything was fine and then the cold shock of seeing that terrible still image and the awful knowing that she was wrong. I felt like I was falling, completely out of control. I was dissociated from everything.

To make things worse, many of my coworkers were welcoming new babies into their lives. While I love children and especially love babies, I couldn't stand the sight of real baby. Seeing one of my co workers new infants sent me into a strange state. I hid in a conference room while I alternatively fought not to cry and fought not to be sick. My emotional distress had become so big it was manifest physically. My heart raced and I would be covered in a cold sweat. I couldn't go to work but I couldn't stay home with my crazy brain. Conversations with medical staff sometimes left me speechless. I couldn't talk because I was too afraid to open my mouth. I thought I was might scream or start to wail. I wasn't a real person.

 It was during the worst of this time that I became estranged from my mom and my therapist who'd helped me through my grief went on an indefinite leave. I started to pull away from people who made comments that minimized my experience. It seemed to me that no one understood the magnitude of what was happening to me. I was swept up in a river and there wasn't anything to hold onto.

I couldn't understand why my medical group wouldn't issue an acceptable referral. I tried to understand why people wouldn't help me and I couldn't. I'd already been through so much. Why wouldn't they give me the key that would allow me to finally have a living child? I was shut down. It started to feed into my paranoia. I didn't trust anyone. My mind would hatch conspiracies that I knew probably weren't true but I couldn't stop thinking about them. I started to have recurring thoughts that people were against me, that people were trying to destroy me. When the anxiety got to be too bad I found a doctor and asked to be prescribed a short term anti anxiety medication to tide me over until the issues with the medical group were worked out. I thought that would fix the issue.

The only thing that is worse than anxiety is depression. As bad as anxiety made me feel, it never drained me of life like depression. I was suddenly irritable and miserable. I could sit and stare at a wall for a hours with no desire to move. I started to have suicidal thoughts, which is ridiculous because I love my life and love myself. I could no longer stand to be. I wanted to wink out like a star. My normal coping mechanisms for dealing with feeling down couldn't touch this blackness. I couldn't go for a run if I couldn't even move from the spot I where I was rooted. The anti anxiety meds were making things worse. I stopped taking them, but I didn't feel any better.

Something terrible had happened to me and it was getting worse. I wasn't concerned with having a baby, suddenly I was worried about surviving life. It felt like I would have a heart attack or jump off a bridge. My mental health had finally fallen apart. And I still don't know what's wrong with me. Tomorrow might be better, or it might not. But in true form, I continue on with the outward appearance that there isn't anything to see here at all. You'd never know from the outside what a mess is on the inside.

Friday, October 6, 2017

The dream

Imagine you are on a plane. You want to go home but the plane crashes. This is a shocking and traumatic event, but you make it out alive in relative good health. People try to support you as best they can. Everyone is sorry you were in plane a crash. When you think you are ready, you get on another plane because you still want to go home. The air carrier says planes almost never crash twice and three times is unheard of. But this plane you are on crashes too. Again, you make it out alive. Everyone reassures you the plane won't crash again. The airline insists they have done extra safety checks the plane checks out. They say the plane is safe.  Then the next planes crashes, and the next and the next. Each plane crash leaves you changed. You keep making it out alive but now you have some physical injuries too. Once you think you might die.

You start to develop anxiety about planes and airports. You wonder if something is wrong with you. Maybe you're cursed. Maybe god is punishing you. How could someone possibly be in so many plane crashes? This is proof of your own worthlessness. Maybe you don't deserve to go home. You feel that something is wrong but everyone is telling you that planes are safe. Other people get on planes and fly home all the time. You can't understand why the planes have crashed. No one has an answer.

You decide to call customer service but every representative gives you a different reason and none of them agree. Someone tells you one plane had a bad engine. Another person tells you that the planes never crashed at all. You can't sleep, you can't eat or some days you eat too much and sleep too much. Sometimes you say things you shouldn't. You can no longer relate to the people around you because they haven't been in plane crashes. Even if they have been in a plane crash it was only one and then they were able to fly home. Some people can't get on planes at all. You think maybe they will understand you but not being able to get on a plane is completely different from being in a plane crash. You are entirely alone. You feel like an alien.

One day someone is complaining about standing in line and you want to scream at him because it's just a line and what does a line matter when planes are crashing around you all the time? You feel like everyone around you is blind. That they are caught up in meaningless worries about nothing while you are drowning in fear. You are desperate to go home. You don't want to be on a plane but you don't have any choice. Your plane crashes again. You think you can't endure anything else but somehow you have survived.

At the airport someone tells you there is hope. You can take a bus to another airport where the planes don't crash. You are filled with relief and joy. You try to buy a bus ticket. Everything is finally turning around. But when the ticket agent sees your passport they stop being polite. They say there is nothing wrong with your passport but you have to buy the ticket elsewhere. You go to another ticket counter but they won't sell you a bus ticket either. You start to feel afraid. You go to another counter and they apologize and say they can sell the bus ticket. You buy the ticket and feel happy and safe.

When you try to get on the bus the driver says you have the wrong ticket. You can't believe it. It's like being in a plane crash all over again. Suddenly you can can't speak. Your heart is racing and you are shaking. You go back to the ticket counter and buy a ticket but this one is wrong too. You start to feel like this was nothing but false hope. You will never go home. You will be stuck in transport hubs for the rest of your life, watching other people going home but never able to go home yourself. No one will sell you the correct ticket. You start to feel like people are in collusion to keep you from going home. You start to feel crazy. You know something is wrong but everyone you speak says things are fine. You feel like people are lying to you but you don't trust yourself anymore. Now you are paranoid.  The world feels like it will devour you at any moment. It's like being torn apart by hungry dogs.

You've been in so many plane crash and sold so many bus tickets everyone is bored with you. People you trusted betray your trust. You blame yourself. They don't want to hear you talking about wanting to go home. They find you depressing. People start to distance themselves from you. They're not sure if they're sorry for you anymore. Maybe there is something wrong with you. Normal people aren't in that many planes crashes. They're happy and you are bringing them down. You have to pretend like the plane crashes didn't happen but you think people can still tell there is something wrong with you. Sometimes you get very angry that everyone wants to pretend plane crashes don't happen. You feel like they're saying you aren't real, that they are denying your humanity. You lash out at them and they move away even further. You can't understand how so many bad things could have happened. Your life feels like a nightmare.

You stop feeling anything. It's like you are a phoenix raising from the ashes. You are different now and you can never back to the way you were. You have endured so much fear and anger and sadness that now you are invincible. No degradation, dehumanization or humiliation can knock you down. You aren't the same person you used to be. It's like you were walking about blind and now you see. You don't care about the same things other people care about. You've been stripped down to base survival instinct.

And your one remaining drive is to make it home alive.

That's what it's like.

Monday, July 3, 2017

In the desert

Life starts with a heartbeat. On an ultrasound it always makes me think of a tiny flame flickering in the wind. Beating to stay alive, beating against the chaos of the universe. Hundreds of thousands of cells, splitting and multiplying and growing despite the odds. Life is sacred, life is a rebellion, life is a resistance against death. Death is the natural state of all matter, the end of all things. An end that cannot be escaped. I will die, you will die, all will die.

Children are our immortality.

But only if they live.

In my mind I can see a picture of a still heart. A heart no longer beating, no bigger than the glistening jewel of a pomegranate seed. Rendered in fuzzy black and white. The end of a story that had hardly begun. The end of a future I visualized only in my head. A baby boy who would come to me a few weeks before Thanksgiving. A perfect human just like ones I bore before. To experience lends to imagination. I know the feel of soft skin and a tiny body held in my arms. The sweet breath of a sleeping infant. The feeling of falling my chest, the hormonal love and swelling joy of a real living baby. I know perfectly the extent of my loss. That dizzying happiness has slipped away silently, leaving me with something worse than nothing, it's left me with a dead fetus encased in my womb. A burden like stone to be carried until it can be released with great pain and confusion. Doctors, a hospital, a surgery with anesthesia so when I wake up I remember nothing. The sweet relief of a process of healing after death. Now an uphill journey back to normal life can begin.

My body is in chaos. I was pregnant, now I'm not. The shock of the hormone drop is like hitting a wall, like falling from a tall building. A sickening plummet and a hard impact. I am physically sick. I am unwell. I can barely stand it. Grief wraps around my throat and strangles my every breath. But I walk, I talk, I smile. I get up and make breakfast for my family. I hold the hands of my children. I go to work. I pay the bills and walk the dog. I am like the living dead. In shock I feel nothing but can sense a tidal wave of emotion waiting to break over and drench everything with sorrow, fear and loathing. I was going to be a mother to a son that will never be born. The knowledge is a sliver that pierces my heart, hot and searing, a new reality that I must wrestle into submission. This is my life now.

I am ruthlessly determined. I am a problem solver, a goal orientated, relentless pursuer of achievement. In this desert of grief there are no enemies to vanquish. No monsters to subjugate. No problems to overcome. There is no there there. Everything is normal. My test results yield nothing. There are no answers to give, so nothing is given. No plans of action besides hope for the best. Insidious, to hope against the terrible odds. To expect different results, a deviation from a path worn deep. In my utter helplessness to change my course a deep rage blooms and grows. Bright and big, like a poisonous flower. My anger is impotent. It is directionless, turning this way and that, seeking a target. I am careful that I don't explode and send shrapnel in every direction.

I have no power. Six miscarriages in a row and I lack the ability to protect my unborn children from the nameless thief that steals their lives. I cannot wrench a new soul into the world with the force of my will. My prayers to a faceless god are unanswered. There is nothing to do and nowhere to turn. I hate, a great lake of bitterness that wells up from my heart and floods my chest. This desert is dark and cold. I am the bestial creature eating my own heart.

There, encased in my own darkness like a chrysalis, I can make a choice. I can chose to be free, to be happy. I can chose laughter. My life is still a good life, a life worth living. I have more than I lost. I can take care of myself. I can release my grief in the wind and breath easy. Now I know a secret, that grief like death is inescapable. You cannot live life without loss and within this natural order is still joy. An overwhelming joy to be alive, to be sacred. I can cry, I can light my candles and embrace my sadness but I'm still fiercely happy and ever so thankful that I have the power to turn my hatred inside out. To shake it off like an old skin.

I love and because I love I cannot lose a life without pain. The stronger my love, the more powerful my grief. And this love is a beautiful thing which I give to all of my children, both living and dead. I love you and you are worth it. So with this I can go in peace. I am invincible in love, powerful in love. My love is a gift and I give it freely.

The choice gives me back my agency. I chose to love and to never give up.

But this is only the shock. I can feel the darkness behind me, it's coming but it's not here yet. And when it comes, no will can keep me from being lost. 

Monday, October 24, 2016

The naked, bestial creature

I have a picture of my face that I really like. It's the picture I use for my work email, my official online presence, my public profiles. I like this picture because I look truly, truly happy. I am joyful and glowing and five weeks pregnant. This picture was taken a couple days before miscarriage number four. Which wasn't even a proper miscarriage and doesn't 'count' medically because I only had a positive pregnancy test and not an ultrasound confirmation of pregnancy. Chemical pregnancies are very early miscarriages which happen in the first four to five weeks of pregnancy and are very common. My unprofessional Google research tells me that as many as half of pregnancies can end before the first week. 

Sometimes I am confused when I speak with doctors. Have I had three miscarriages or five? What about the miscarriage at six weeks? Too late and painful to be considered a chemical pregnancy, too early to matter much at all medically. To me, the chemical pregnancies count. All of my pregnancies count. The two miscarriages I had at 7 and 11 weeks respectively count more because I saw an ultrasound of the embryo. The last one counts the most because it could have killed me. I saw the heartbeat, a tiny flickering like a little flame, beating cells that legitimatized my state of being and provided a solid medical diagnosis. Sometimes I remember that frantic little beat, trying to stay alive against the odds. My last discharge papers from the hospital read: You have had a miscarriage. Diagnosis: embryonic demise. Translation: 'There is no heartbeat'.

In the last 12 months I have been pregnant as many weeks as I was not. But my quest for a baby has certainly left me without a child. Each loss is different. I have found that a simple and common human affliction can strip me of dignity, leave me confused and disoriented, and push my resources beyond the threshold with which I can effectively cope. I am no longer myself, I am a version of myself in a state of repeated pregnancy loss. The symptoms have been referred pain, headaches, nausea, and emotional unpredictability. I did not cry at the hospital. I did not cry when I got home from the hospital or in the days that followed. But things which make me happy, like spending time with my two beautiful nieces, can days later leave me awash with sadness and rage in the most inappropriate venue at the worst time.

I expected the fifth would be like the first, a huge crushing wave of tears but that flood never comes. I stopped crying after the second. Because I got tougher. I am now a new, shiny hard surface which does not crack or break. All the excess weight has fallen off my body. I'm still soft, but I'm almost a stranger to myself. Whose thinner arms are these? Certainly I am a little bit dissociated from myself. Being destroyed has made me nearly indestructible. This new perspective on life has left me a vast capacity for empathy and a greater understand of the human condition. But I cannot talk about my fifth miscarriage without also talking about the abortion which followed number five (having seen two of the three embryos I lost, I can't think of them as true babies, they were at most strange tiny little spheres of potential human beings that I counted one by one). 

My abortion was the worst part of my fifth miscarriage, and wrapped up in it is the state of healthcare and women's rights in my country. When I left the hospital with my miscarriage diagnosis I was in the process of losing a pregnancy. Sometimes, if one is lucky, like I was lucky with number two, a miscarriage happens all at once. If one is unlucky, as I was unlucky with number five, a miscarriage may drag on for weeks or months while a body tries to rid itself of an nonviable pregnancy. I found out that the pregnancy tissue can continue to grow even after the embryo is gone, even when the body is fighting to rid itself of this dangerous condition which can lead to infection and without proper medical treatment, even death.

Because I didn't have health insurance and wasn't willing to pay over $20,000 for a D&C in the hospital, I ended up in a desperate search for an alternative provider for women's healthcare. The ultrasound at the hospital, performed after I left work in the middle of the day and drove in a daze to the ER, cost $1,066. Over a week later, an appointment made a month prior for my 12 week checkup ended up becoming my followup appointment for my miscarriage. The doctor drew blood and strongly cautioned me against trying to wait it out. My pregnancy hormone levels were still too high, indicating a serious complication. I was already anemic and now threatened with the exorbitant costs of blood transfusions and emergency surgery if I didn't agree to a D&C that would leave me in more debt than all my student loans.

The next day, after a terse and terrible conversation with the hospital billing department I called Planned Parenthood. I've only had a few moments in my life where I felt as desperate as I did then. It was my lunch break at work and I could barely speak because my throat was so tight. Thankfully the person I spoke to was absolutely wonderful. They called the clinic and spoke with the doctor to see if they could perform a D&E in place of a D&C, they made an appointment the next day at the nearest clinic, they explained the cost ($475) and even offered me financial aid which I declined.

On the day I walked into Planned Parenthood I was physically unwell and emotionally removed. I had lost a fair amount of blood in the two weeks since a nurse practitioner had steeled herself and told me that there was no more hope. I could tell it took a toll for her to deliver that news. 'You'll be ok, you're tough. You've been through this before.' she told me. I couldn't tell if she said it for my benefit or hers or just because there was nothing else to say. My body was caught in a hellish limbo of pregnant but not pregnant. I almost cried when we drove past the protestors holding up a three foot sign with a picture of a 10 week embryo. It was a graphic depiction of everything I had lost, so many times. As I walked for the door a woman across the street yelled at me to stop and save my baby. A part of me wanted to tell her she had no empathy, no understanding and no imagination for the suffering of others. A bigger part of me couldn't even articulate the parts of rage when I looked at her. My driver tried to comfort me by telling me my 'baby' was already dead. 'That's not why I'm angry.' I said.

Inside planned parenthood I had to fill out a number of forms requesting an abortion. I had to go through counseling and education on birth control, preventing pregnancy and domestic violence. My counselor told me I was the only person to sit in her office who was actively trying to get pregnant. I was mortified when I suddenly started to cry and could not stop. During my ultrasound the young technician exclaimed 'Oh my god!' and told me I really, really needed a D&C immediately. She turned the screen towards me so I could see the gestational sac, still growing and now measuring at 12 weeks, some days. It was another affirmation that this was really happening and every step I had taken had been absolutely necessary. Without Planned Parenthood I would have been saddled with a huge debt for a procedure I could not forego or postpone. For another hour I sat with six other women in a tiny inner waiting room. Some of them were crying in the quiet way that women cry when they are trying to hide their sadness. The irony of the situation was so overwhelming I wanted it to be funny but I cried along with them instead. I couldn't stop picturing in my mind what a real newborn would have looked like, held in my arms.  

I do not judge those women, I do not think what they did was wrong. I still believe that no one should be forced to carry an unwanted pregnancy. My desire for a child has nothing to do with the decisions others make for themselves. I know firsthand how taxing and dangerous pregnancy can be. We all have desperate times, desperate situations. The last thing I said for the sake of the recorder in the operating room before the anesthesia kicked in was answering the doctor's question, 'For the record, this was a pregnancy you desired, correct?' My answer was, 'yes, very much'. The next thing I knew, two hours had passed and I was waking up in recovery. 

A friend asked me if I get excited anymore when I get pregnant and the answer is 'yes, but'. My excitement is tempered with caution. For me a positive pregnancy test means next to nothing. An ultrasound guarantees nothing. I could not have predicted that a sixty day gap in ten solid years of health insurance would have resulted as it did. I thought that pregnancy was the one. I thought that because I saw that tiny beating heart we were going to make it. Only one of us did. My perseverance, my optimism, my faith and my hope have slowly become insidious. I thought I was a force of nature that could take on anything the world brought my way. It turned out I hadn't actually considered what the worst was. This wasn't even close to the worst thing that could have happened. 

Possibly the absolutely most important thing that I can tell anyone who actually this whole story is that I am one of the lucky ones. I wake up every day thankful. To be bitter would be to take for granted the things I do have. My experience was horrific, but I am educated, employed, married, and financially stable. I have a large support network. I have good credit. I'm in my thirties, not twenties or teens. I could have afforded a D&C if I had no other choice. I was able to cover my hospital bills out of pocket. I can seek support when I need it. In less than a week I will have health insurance and I plan to never ever be without it again.

I can imagine that this situation, or any situation like it, might have been a thousand times worse if I didn't have the resources and advantages I had. I don't know why those others women were at Planned Parenthood that day, but I do know that we make the best decisions of the options available to us. I can't impress on people enough the absolute necessity for women's healthcare providers like Planned Parenthood. They save lives.

And I will leave you with that.

In the Desert 
 
In the desert
I saw a creature, naked, bestial,
Who, squatting upon the ground,
Held his heart in his hands,
And ate of it.
I said, “Is it good, friend?”
“It is bitter—bitter,” he answered;

“But I like it
“Because it is bitter,
“And because it is my heart.”

-Stephen Crane