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.
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…”
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.
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:
- Depression medication
- Blood clot
- Celiac disease (several times)
- Iron deficiency anemia
- Lyme’s disease
- Crohn’s disease
- Addison’s disease
- Cushing’s disease
- Blood clot in the lung
- Multiple Sclerosis
- Heart Problems (Yeah, they ruled it out several months ago, now its back)
- Autoimmune Diseases
- The flu
- Mistreated Sleep Apnea
- Autoimmune epilepsy
- Low testosterone
- Low creatinine
- High creatinine (somehow, my urine creatinine is normal, blood is high several times in a row, then normalized)
- High inflammation
- Chronic ear infections
- 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.
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.