Sometimes I think that this blog, in another five years, would be an interesting medical document, sans all my nonsensical or rant-like posts, because it documents the progress of a neurodegenerative/neurodevelopmental disease in someone who was in the prodromal stage at age 10. That’s extremely rare. When I wrote my first post, everyone thought that Grace had bipolar disorder. Grace’s psychiatrist is observing the disease progression for a certain development. Will she remain in the same spot of the schizophrenia spectrum placing her at “schizoaffective”, or will she move down as the disease progresses placing her at “schizophrenic”? Does it matter? They are both treated exactly the same in terms of drug therapy.
It matters in terms of diagnosis, and it matters in terms of progression. After Grace’s latest hospital adventure, this is what I’ve learned.
The first thing, however, I want to address is this: If you are reading this as a caregiver or someone seeking more information regarding someone who has or might have a schizophrenia spectrum disorder, then I must state the following–Learn to tolerate not knowing. It is such an uncomfortable place to be. It is stressful. It provokes profound anxiety. It can be scary. It might even cause you to question your own perceptions and sense of what is real. And I want you to know that I understand. From one caregiver to another. I know how truly hard that is. You just want an answer. “Someone please just give me a diagnosis dammit!” Yet there is none to be had. It can take two to four years to get an accurate diagnosis particularly in children and adolescents when it comes to psychotic disorders and mood disorders. Why?
There are a plethora of reasons from gender bias to over-diagnosis to physician caution to under-reporting of symptoms to poor access to good mental healthcare and early intervention to untrained medical staff to just good old-fashioned stigma–even in the medical community. Grace and I have bumped into all of it since we began our journey. Truly good physicians and truly good hospitals are actually not that easy to find. It takes tenacity and the gift of long-suffering to make your way through the labyrinth of the American healthcare system with or without health insurance because there are gatekeepers everywhere whose sole job is to deny access to much needed care–even if you have health insurance. So, it’s necessary to get comfortable in that place of uncertainty. Make friends with it. Accept it into your life. Practice saying this dialectic: “I can experience peace in this moment even though I am living with uncertainty.” Peace and uncertainty tend not to go together. That’s why the idea of being peaceful while uncertain at the same time is a dialectic (That’s a little taste of DBT).
The second thing I want to address is the truth about the brain in the context of neurology and psychiatry, and the best way I can illustrate this is with a personal story. I have epilepsy. I had seizures as a small child. I didn’t know that I was experiencing seizures, but I knew that something was happening to me on the cusp of sleep. I also knew that it was scary. I usually wet the bed during the events. I had heard the word ‘schizophrenia’ a time or two when I was very young, and I knew that ‘schizophrenia’ was a bad word. My grandfather had schizophrenia. He was in a VA hospital in California. He had been in that VA hospital for forty years. FORTY YEARS! I thought that maybe what was happening to me at night was schizophrenia, too, so I never told anyone. I didn’t want my father to put me in a hospital and leave me there. So, I would get up in the middle of the night and wash my sheets to hide it from my mother–at seven years old–and I kept my seizures a secret.
I eventually grew out of the seizures, but adolescence can activate latent epilepsy as can stress. An extraordinarily stressful event happened in my life when I was 18. I was the victim of an abduction. Abductions are rare, but they do happen. Human trafficking is a hot topic now. I had never heard of human trafficking in 1991, but it was going on even then. The man who took me was a human trafficker. I started having seizures again when I was in captivity due to the stress. In the end, that is how I escaped. I figured out that I could fake seizures, and it would freak out the man who took me. He would leave me alone in the room. That gave me time to think about how to get away because he wasn’t lording over me. My seizures saved me.
Post-captivity, however, I was a mess. It takes a long time to recover from a trauma like an abduction not to mention being in captivity, prepped for auction, and everything else that implies. I was experiencing a combination of psychogenic and complex-partial seizures quite often. The psychogenic seizures were rooted in PTSD. The complex-partial seizures were simply due to an irritated brain exacerbated by extreme stress. I ended up in the Columbia-Presbyterian Epilepsy Center in Manhattan for an extended VEEG. I hated it there. I was 19. I was tired of everyone trying to get into my head. I was tired of being labeled as “damaged”. I was tired of being “the victim” or the “girl who got away”. And, I was so tired of everyone feeling sorry for me and looking at me like I was never going to have a good life because of what I survived. I must note here that the means by which the staff at the epilepsy center tried to provoke a seizure in their patients were unethical. The psychiatrist on staff tried repeatedly to force me to relive events of my captivity against my will under coerced hypnosis. I was not a compliant patient because I did not want to relive those events.
So, I made a bad decision as 19 year-old girls often do. I faked a seizure to get out of the hospital. I felt so cloistered, trapped, and unsafe, and feeling trapped was a trigger for me. I couldn’t tolerate it. It worked. The psychiatrist at the epilepsy center told me during my discharge interview, “You know, you’re an attractive girl. That ought to be enough for you in life.” I recall wanting to slap him across the face. I had just come from an environment that had thoroughly objectified me. Being objectified again just didn’t feel good. So, I left the epilepsy center with a diagnosis of PTSD with psychogenic seizures i.e. “crazy”. The neurologist told me that I was a hysterical young woman who needed to get a hold of myself regardless of what had happened to me. So, at 19 years-old, what was my final diagnosis? Attractive but crazy. Seriously. That was the final assessment.
I felt…angry. Like everything I had just endured was my fault. How would they like to endure being trafficked and then stalked by their perpetrator after getting away? Would they enjoy living in terror and fear? Would they enjoy police interviews? Would they enjoy looking over their shoulder constantly, wondering if he was going to come back and make good on his promise to kill? I felt like I was living in a weird action movie. Bruce Willis could step out at any time and rescue me. Yeah, Bruce Willis! It was the 90s, y’all!
I compartmentalized everything and went back to college and proved everyone wrong, but I wondered all the while if I really was crazy. Every once in a while I would have a seizure, and I would believe that it was just “hysteria” like the neurologist in Manhattan told me. I would ignore it and keep going. Years later, however, when I was married and pregnant I started having seizures again, and, this time, I could not ignore it. I didn’t want to tell my OB because I was afraid that I would be called hysterical again. I also didn’t want anyone to know that I had been trafficked. I didn’t want a PTSD diagnosis to go on my medical records. PTSD is a diagnosis that can taint a doctor’s opinion. It contributes to stigma. If you show up with a headache or a pain complaint, they’ll look at your records and see that PTSD diagnosis and wonder if you’re drug seeking. A mental health diagnosis changes everything. I knew that.
The seizures worsened. I had to say something. I could fall. That could hurt the baby. I had to be honest for the sake of my unborn child. My OB listened. She was compassionate. She didn’t judge. She sent me to a neurologist. He was a crusty curmudgeon who, once again, found nothing wrong with me. I left feeling crazy. My OB listened again. She sent me to another neurologist who, according to her, was the smartest woman she had ever met. She told me that if there was anything wrong with me, then this woman would find it. Honestly, I was terrified. Her name was Jane. She told me to call her Jane. She had a resident with her during our appointment. I was trembling. She did all the neurological testing that everyone had always done. She asked me to walk across the room for her, and while I was walking I heard her say to the resident, “Did you see that?” She stopped me. “Jules, stop. Could you turn around and walk towards me again?” I did so. She said it again. “Did you see that?” I immediately felt anxious. She approached me and put her hand on my shoulder. “You have temporal lobe epilepsy.” My knees almost buckled. She helped me sit down. I started crying. “I’m not crazy?” She patted my hand. “Oh no, you are most certainly not crazy. Whoever told you that?” I just sat in her office and wept. I couldn’t stop. Years of believing that I was some hysterical girl were flowing through and out of me. I could hardly believe it. “How…how…” I snurped. “How did I know?” she asked. I nodded. Your left hand postures in a very particular way when you walk. Only people with TLE will do that. I can probably tell you exactly where the problem is in the temporal lobe as well. It’s probably idiopathic. I bet if I did an EEG we wouldn’t find anything. It’s probably structural. You’re wired funny, but you definitely have TLE.” I stared at her in disbelief. “But I’ve seen countless neurologists! No one saw this? How could they have missed it?” She winked at me and said, “They weren’t looking for it. I was. Jules, you have been sick for a long time. It’s time to get you better. We need to make sure that your brain gets better so that your pregnancy goes well.”
These experiences delineate a certain reality. The presence of a psychiatric diagnosis does not preclude the presence of a neurological diagnosis. Now, more than ever, psychiatry and neurology are almost complementary specialties because the manifestation of a psychiatric illness most often begins in the brain. As Grace’s neurologist said to me on the phone yesterday, “It’s all one brain. It’s just a question of who treats what. Is it neurological in nature or psychiatric in nature?” This was not a common view twenty years ago. Neurologists just kicked a patient to the curb who was experiencing psychogenic seizures. The problem in doing that is that psychogenic seizures are still very real to the patient and hindering their ability to live a full life and even earn a living. They still have to be treated. It’s just a matter of how. What is best for the patient?
I don’t share this story to garner sympathy or attention. I share this to make a point. Every person with a neurological diagnosis will most likely have some kind of story to tell as well. Why? Because life has a way of kicking the shit out of us. I don’t know one person who hasn’t endured abuse of some kind or faced loss that has left a scar. We will suffer in this life. That is the one thing that is guaranteed. Death, taxes, and suffering. I also don’t know one person with a psychiatric diagnosis who doesn’t suffer from at least one neurological diagnosis. What might that be? At a minimum, migraines.
PAUSE: People should not be self-medicating their migraines. If you get migraines, see your doctor for the love of baby hamsters! Do not listen to the ads that say, “When I get a migraine, I just take X brand of analgesic, and I feel better! Take X brand of OTC analgesic, and you’ll be back on your feet again, ready to put your nose to that grindstone in no time!” Why? Migraines leave white matter lesions on the brain. Yep. They do. Those white matter lesions also put you at risk for stroke later in life. Isn’t that a reassuring idea? I know I sleep better at night knowing I have small white spots all over my brain! Alas, this is something you want on your medical record, and you want to be treated by a neurologist! This is what they do–even if you only get migraines a few times a year. It does not matter. Something is wrong with your brain. Get it checked out! For your health and for your future.
PLAY: Neurology and psychiatry, however, intersect like a Venn diagram. I have heard Dr. Awesome say numerous times that some of Grace’s issues belong to neurology, and I’ve heard Dr. Fabulous say just as many times that a few of Grace’s issues probably belong to psychiatry. Both of these outstanding doctors are trying to figure out Grace’s brain. Both of them are attempting to problem-solve and decide, “Is this brain problem mine or hers?” Dr. Foxy even shrugged at me once and said, “What? It’s all brain stuff. Schizophrenia. I mean, it could be mine. It could be a neurologist’s. It’s the brain. Heck if I know…”
What I am describing here is some evolved medicine in action. When you have a neurologist and a psychiatrist talking to each other about the care of a patient, you have achieved something. And, that’s what is beginning to happen in Grace’s care.
Dr. Fabulous noted that some of Grace’s symptoms could either be:
- atypical migraine
- possible beginnings of catatonia
- or both
You can imagine that I was alarmed at the idea of catatonia in a 13 year-old girl. I remembered how I was treated when I was 19. My symptoms were dismissed as entirely psychiatric when there really was a neurological foundation. I did, in fact, have epilepsy, but the doctors were too taken aback by my shocking history. They made an assumption which was: “A survivor of human trafficking would have PTSD. Psychogenic seizures are common to PTSD ergo her presenting symptoms are nonepileptiform.” Good doctors never make assumptions.
A patient with schizophrenia can have legitimate neurological symptoms even if the presentation is complex. A patient with a complex history or even a traumatic history can present with psychogenic seizures, but that doesn’t preclude the presence of epileptiform events as well. A patient with a mental health diagnosis can present with neurological diagnoses. The presence of one does not preclude the presence of the other. Let’s make it more interesting. A patient with a complex mental health diagnosis and a traumatic history can also present with neurological symptoms. I would assert that the more complex the mental health diagnosis and personal history of the patient, the more likely the patient is to have a neurological condition. The brain is complex. Patients ought to be treated with dignity and never stigmatized or judged because they were the victim of a violent crime or originated from a highly dysfunctional or abusive family.
As I learn more, I feel as if I know less, but I do know one thing today. I once hated the memory of being trapped in that epilepsy center. I hated having the electrodes glued to my head. I hated the cameras. I hated not knowing what was wrong. I see now that it makes me the perfect mother for Grace, and there is redemption there. I know exactly what she’s going through because she, too, had to sit in a room with electrodes glued to her head while cameras filmed her. She, too, didn’t know what was wrong with her. She, too, had to sit in a room while people talked about her like she wasn’t there. And, she, too, had to listen to a doctor suggest that perhaps her presentation was entirely based in her psychiatric condition. I know how that feels. Boy, do I know how that feels. You feel like you’re crazy. You feel completely ashamed. You feel like you want to crawl into a hole and die. Truly.
So, I knew how to advocate for Grace in that moment. I knew how to suggest alternative theories. I knew how to ask better questions, and I knew what to say to Grace when she looked like she wanted to cry because I knew what I would have wanted someone to say to me had someone been there for me when I was 19:
“Doctors have to think out loud sometimes. Right now, we’re doing what Dr. House does on that show. This is called differential diagnosis. It’s a diagnosis of exclusion. Because we don’t know what is wrong, we have to find out what is not wrong. That’s why your doctor drew all that blood from you. The more information we have, the better. It’s also why we are throwing out all these ideas. I know that what you feel is real. I see that and so does your doctor. We all believe you. Never question that. This is real to you. So, it’s real to me. And, I will do everything I can to help you until you feel like yourself again and so will your doctor. That’s why she admitted you. Know that we believe you. Even if we can’t measure it or test it, we will figure out why you feel so sick, and then we will make it better.”
We are not entirely sure what is wrong with Grace, but, when Dr. Fabulous and I spoke yesterday on the phone, we reached a murky conclusion. It’s either neurological or psychiatric. Or both. And, isn’t a miracle that medicine and the attitudes therein have come so far that a neurologist can call the parent of a 13 year-old girl with a schizophrenia spectrum disorder, admit that she essentially doesn’t know, and still commit to her long-term care without blaming the patient?
I am beyond grateful on this night, the eve of Mother’s Day. There is a lot we don’t know, but I know I will sleep tonight with a heart full of love and thanksgiving.
To all of you out there who are a mother to someone be it in reality or in spirit, offering your nurturing and care, your steadfast love and patience, and your faithfulness even when you are weary and done, I wish you a Happy Mother’s Day. May you be blessed and affirmed in some way that is uniquely meaningful to you, and I hope that as you make your way with the special people in your lives, connections are made for you, too, that shed light upon the darker spaces in your memories proving to you that you didn’t occupy those places for naught. You walked that road so that you could lead someone else through the same terrain later on. That’s the wonder of redemption. You’re someone else’s mapmaker and field guide, friend and comforter, and alchemist, turning the emotional lead into experiential gold.
It’s a high calling but so worthwhile.