Disability Movie Review: Brain on Fire

Before-Watching Reflection

So, I just decided to start watching Netflix’s Brain on Fire, starring Chloe Grace Moretz. I decided a while ago that I was going to try and do movie reviews of movies about disability and try to get paid for it. But I didn’t have the energy to even start that recently because I’ve been dealing with health issues.

The movie is about a woman who gets a mysterious illness and none of the doctors can figure it out, apparently. I kind of chose that to write about for this inaugural Disability Movie Review because it’s similar to my circumstance. I just found out I had heart failure last week and am still trying to process through it and maybe this movie will help me on the way.

That, or I could watch all of the movies about heart failure people who die…or get transplants because THE MIRACLE OF SCIENCE AND PLOT!

But I don’t know how I am going to handle this. I will probably break down weeping a few times–I am manly enough to honestly and without shame admit I openly weep during movies (it is NOT pretty). During my first health bullshit (where I had iron deficiency anemia and diagnosed, then undiagnosed, with celiac disease), I remember helping out at a Christian youth camp and one of the counselors talked about the medical uncertainty he was going through and I was weeping because I knew about every single thing he was talking about.

But now, I don’t know. I will let you know once I have watched the movie whether or not I cry (spoiler: I suspect it will be a lot if this is anything like Fault in Our Stars…I’m already getting teary just thinking about Fault in Our Stars.). So, without further ado…let’s proceed! (You can take the time before the next paragraph to watch it if you like.

Watching Reflection

Brain Fog

The scenes of brain fog in the beginning are expertly done with the sound fading away and there, but almost not, and everything gets a bit fuzzy and slow. That was one of the first symptoms I had with whatever I have and I can definitely say that this a cinematically accurate representation of what brain fog is like for me.

There were times where I would have to walk two blocks on campus and it would take me an hour because my brain was so fogged up and my body would, as I called it, moving in slow motion. I could not move faster than one step at a time and no matter how much I willed it, I couldn’t walk faster.

Luckily, I found out that podcasts are a good way to distract yourself when walking, so I stopped caring as much about walking in slow motion, but it definitely still happened. It just sucked because I then had to leave to go wherever I was going even earlier because I didn’t know if I was going to be in slow motion that day.

I just find myself wondering how I did an entire year of a PhD program with brain fog that made it difficult to understand the things people were saying to me, and that’s not even mentioning the reading I had to do.

“Good News, we didn’t find anything”

Doctors, if you are reading this, not finding anything is sometimes not good news. Especially when your patients know something is wrong. Moretz lets out the patented actor’s single tear when she listens to the phone call.

I have been to 43 doctors and all of them have come back with, “Good news, we didn’t find anything.” This includes doctors from the Mayo Clinic, who then proceeded to say that I needed bariatric surgery (that they do and get paid for) to lose weight.

It is terrifying to know that 43 doctors have come up with nothing. And terrifying isn’t even a strong enough word. Imagine you know something is seriously wrong with you, but every doctor you go to leaves you with, “good news, we didn’t find anything. There’s something wrong, but we don’t know what.”

That means whatever you have is probably untreatable because 1) few people in the world have it, so not enough money has been given to research the treatment, 2) it’s a known thing, but is presenting different symptoms than regular, so there isn’t a treatment that deals with that, or 3) no doctor has ever seen it before or few doctors in the world have seen it, so it doesn’t have a treatment.

But remember, “we didn’t find anything wrong…” But honestly, there’s something they are not including there. “We didn’t find anything wrong…”

“Yet.”

My heart was supposedly fine and I was given, “Good news, everything’s fine” in January. JANU-FUCKING-ARY, and now, I have heart failure. Might have had it for a long time, I don’t know because no doctor–not even the Mayo doctors, who just told me I was fat–ever caught it. The results of my heart MRI were difficult to determine because I had so many pre ventricular contractions (PVCs), PVCs that were caught on a holter monitor a few months ago but was told, “Everything’s fine with that.” Everything was most certainly not fine.

Good news my ass. Go shove your good news where the sun don’t shine, because it sure as hell isn’t good news.

Doctors not Knowing what their Talking About

There’s a recurring doctor who keeps saying it’s one thing and when he is pressed for how it explains her symptoms, he can’t. It keeps going like this and he just acts like, “I am the doctor, I know more than you do, now be quiet and accept my diagnosis,” even though it turns out his diagnosis is so far on the wrong side that I’m surprised he even knows his ass from a hole in the ground (who knows, maybe he doesn’t.”

Now, I fully recognize that with a movie like this, the studio doesn’t want to hire the amount of doctors the character actually went to (because this is based on a real story), so this doctor is really an amalgamation of all the doctors she went to. But still, there is something rotten in the state of medicine. When doctors are given so much credibility that we don’t question what they are doing, they can do whatever they want. If the doctor thinks a person’s life is pointless and so we should “pull the plug” or stop the treatment, then too many people trust that idea. They think about it and decide, “The doctor knows best,” even though most of the time, they don’t.

They are flawed human beings just like us who know a lot about their particular field of medicine, but by the nature of being a human being, cannot know everything about medicine. New studies are coming out every single day and they can’t read them all. I fully embrace and accept that, therefore, I only trust doctors to a certain extent. I will listen to what they recommend for treatment, then find research studies to see if what they recommend actually makes scientific and medical sense, and decide accordingly.

Now, this isn’t to say that I just Google. No, I literally find ways to read and study scientific and medical journals about what they want to do. I have a degree in rhetoric and writing and for my thesis, I researched for an entire semester one single topic: Theory of Mind. I read over 55 scientific journal articles related to that topic. Now, I accept the possible argument that psychological science isn’t as robust as chemical science, but if I can understand all of the gobbldygook (because that’s what it is) of a field, then I can understand what they are talking about and make an informed decision.

Post-Watching Reflection

The movie wraps up nicely. A doctor who hadn’t been working with her–who didn’t have the presumptions her doctors did–came in and figured out what was wrong with her. And I’m glad for her, I really am.

But I can’t help but feel despair. Her story had a diagnosis. My story, after 43 doctors, hasn’t. My heart failure explains all of my symptoms, but we don’t know what is causing the heart failure. Their current hypothesis is that the pre-ventricular contractions are causing the heart failure. But what is causing them? In other words, they know I have heart failure, but they don’t know why. They don’t know how to stop it from getting worse because they don’t know what made it worse in the first place.

So, she has a diagnosis. But I don’t. I have no hope right now. A few months ago, I put it to my therapist this way: “If a person finds out they have cancer or AIDS, there are treatments for it. Those treatments don’t work 100% of the time, but they do work sometimes. They offer one thing for those patients: hope. Right now, with no idea of what is causing whatever I have, I have no diagnosis, so I have no treatment, so I have no hope. No hope that I will ever get any better.”

I want hope, but I am reminded of a quote from the movie that Richard Armitage’s character says to his ex-wife: “I just don’t want to hope again, what if he’s wrong too?” It could be my heart that’s causing everything. But what’s causing the heart problems? I’m too scared to hope that the heart failure explains everything. And, yeah, I know that we should all live in hope, but it’s really hard when doctors have thought that it was and promptly ruled out:

  1. Depression
  2. Anxiety
  3. Depression medication
  4. Blood clot
  5. Celiac disease (several times)
  6. Iron deficiency anemia
  7. Weight
  8. Lyme’s disease
  9. Crohn’s disease
  10. Addison’s disease
  11. Cushing’s disease
  12. Blood clot in the lung
  13. Cancer
  14. Multiple Sclerosis
  15. Heart Problems (Yeah, they ruled it out several months ago, now its back)
  16. Autoimmune Diseases
  17. Mononucleosis
  18. The flu
  19. Mistreated Sleep Apnea
  20. Seizures
  21. Autoimmune epilepsy
  22. Low testosterone
  23. Low creatinine
  24. High creatinine (somehow, my urine creatinine is normal, blood is high several times in a row, then normalized)
  25. High inflammation
  26. Chronic ear infections
  27. Cholesteatoma
  28. Mitochondrial Disease (they haven’t ruled it out, really, they just don’t look for it because no doctor specializes in it)

Those are all I can think of right now. Heart disease was ruled out back in January, but now I have heart failure. So, is it or isn’t it.

The movie has a happy, glorious ending where she goes back to her job and starts writing the best-selling book that this movie is based on. Yay for her. But what about me? Is that selfish? Probably, but I’m just going to be okay with being selfish in this case.

Conclusion

So, there you have it, this is sort of what my reviews will look like. A pre-write up of what I’m expecting, a during-watch write up of what I’m thinking as I watch it, and a post-write up that takes all of the during-watch parts and connects them. All while connecting with me because I am the most important person in the world, dontchaknow? (hint: I know I’m not)

Movies affect us all in unique ways and every way is important to recognize and accept. So far, I have a list of 50 movies and 9 TV shows that are all about autism, so when I have time and energy, I’m going to review.

Advertisements

One thought on “Disability Movie Review: Brain on Fire

Add yours

  1. Out of curiosity, what kind of doctors have you been to? Have you seen a functional doctor?

    About mitochondrial problems, Dr Terry Wahls talks about that but I don’t think she specializes in it. She does have a dietary protocol that she developed to reverse her MS. It was loosely based on the paleo diet she learned of from the Cleveland Clinic, as her neurologist recommended her look into it. But she came to her dietary protocol after years of worsening and experimentation, as everything her doctors did failed to show improvement (doctors, I might, add that like her work at one of the best hospitals around). Being a doctor herself ended up being helpful because, though not an expert in any of the necessary fields, she knew how to read scientific research.

    She did have another advantage as well. There was an actual diagnosis. Still, as she came to realize the diagnosis in and of itself didn’t really tell her much of anything. It was her turning to functional medicine that she began looking at disease differently, leading to the realization that diagnostic labels are misleading since they’re based on symptoms rather than causes.

    I recently picked up a book on the topic. It’s Mitochondria and the Future of Medicine. But I haven’t started reading it yet. It’s one of many books I’ve bought this past year. My own motivation is lifelong depression, another label that means little. Depression is a diagnosis given when doctors can’t explain your symptoms. Yet despite all of the diverse potential causes, there is a commonality among many depressives in their having brain inflammation. But I have no clue what is behind my own depressive symptoms and it has been severely debilitating at times, even life-threatening when it ended up with a suicide attempt.

    Depression is like feeling your brain and body has turned against you while outwardly appearing normal to the world. It’s all in your head, so seems to be the accusation. It’s even more depressing that doctors themselves have no clue. I’ve went to many doctors, therapists, and alternative healers. I’ve even been in a psychiatric ward and had all kinds of tests done on me. None of it made any difference, until I made dietary changes in going on a paleo diet. Basically, that means I cut out carbs and sugar while increasing healthy fats and nutrient-dense foods. My mood has leveled out, not that my depression has exactly disappeared, but that alone is a minor achievement after suffering for decades. I also lost 60 lbs of weight I had gained over the past decade.

    This change is hardly an inspiring story. I simply no longer have some of the severe low moods I used to have. But in eliminating food addictions and finding a healthy biological balance, I also no longer have the serotonin and dopamine boosts from junk food. Also, the established depressive habits remain, along with long term health concerns that are related. That is what depression has always been for me, looking for ways to manage it to stay one step ahead of it. So, maybe I’m a few steps ahead now. That is something.

    Here is something I wrote last month:
    https://benjamindavidsteele.wordpress.com/2018/09/06/essentialism-on-the-decline/

    “The paradigm change this signifies is that seemingly separate diseases with different diagnostic labels often have underlying commonalities. They share overlapping sets of causal and contributing factors, biological processes and symptoms. This is why simple dietary changes can have a profound effect on numerous health conditions. For some, the diseased state expresses as mood disorders and for others as autoimmune disorders and for still others something entirely else, but there are immense commonalities between them all. The differences have more to do with how dysbiosis and dysfunction happens to develop, where it takes hold in the body, and so what symptoms are experienced.

    “From a paleo diet perspective in treating both patients and her own multiple sclerosis, Terry Wahls gets at this point in a straightforward manner (p. 47): “In a very real sense, we all have the same disease because all disease begins with broken, incorrect biochemistry and disordered communication within and between our cells. […] Inside, the distinction between these autoimmune diseases is, frankly, fairly arbitrary”.”

    Anyway, I hope you find something that works for you, no matter if any doctor is ever helpful.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Create a free website or blog at WordPress.com.

Up ↑

%d bloggers like this: