Doctor, Doctor

21 March, 2022 | 19:48

This journal entry is harder than I thought it would be. There is a part of me that is still, frozen in place because of words, or actions. There are moments I wish I could scrub away from my memory. Some with family, some with friends, some with relatives. Doctors though, I wish I could scrub it all away.

We forget that doctors are as human as the rest of us. They are not immune to internalised prejudices, or anger or fear. They are not inviolable fortresses that hold kindness and generosity in equal measure for all. They are human, as such come with flaws. The only problem is, their flaws have monumental consequences, often not on them. This is not grey’s anatomy, the world is not half as dramatic as that, and doctors aren’t 1/4th as committed as Bailey either.

***

I had texted this yesterday to a friend, well friends, but semantics, as such, I am prone to brush details under the rug.

I keep thinking to myself that I have never been treated badly by doctors or nurses, that I have never been gaslit. And then I remember stuff.

It’s sudden, the realisation I mean. It might be when I am cutting vegetables, the sun on my face, the birds a little squeakier than normal, Daisy at my feet, which is very unusual for her. Then I am hit with a memory and I don’t know how to move, how to pick myself together. To wrap those unwhirling pieces into each other, fuse them back into the cracked mosaic.

This is much literary than what I had written, but it is the gist of it.

***

September 2019, approximately

In year 2 semester 1 (this would be in 2019, before my diagnosis), I began to notice how different my memory was. My attention span, which felt endless most days, now had bounds, very visible, very physical bounds. Everything was foggy, I was in a stupor of pain, hunger and anger. The fury was insurmountable, more so because of the murky haze.

When I had told my then doctor about this, he told me that maybe I just was a different person. That this might not be a symptom at all. It could be an indication that I was evolving.

***

December 2019.

We had visited a gastroenterologist. I was tired of my previous doctor. It felt like we were making no headway, in terms of treatment or diagnosis.

This new doctor suspected Achalasia, asked me to come in for three tests. These medical tests were scheduled on the same day. First up was Endoscopy.

I was scared, terrified. I was a different person before the symptoms. Needles didn’t bother me. They didn’t hurt, or tear away at the fundamental person I was. My hands were shakey. I don’t know when I developed this instinct, I began to flinch at everything: loud noises, touch, textural sounds, gestures, I recoiled at all of it

Shrinking back from the cannula needle was an innate impulse. It was instinct. The nurse yelled at me, multiple times. I felt small, wrong. I know I should have been braver, stronger, but I just… I was so very scared.

The nurse’s voice still rings in my ears sometimes, the shrillness of it, her unyielding stature. It was an accusation, I was an annoyance, an inconvenience.

*

I wanted to get general anaesthesia. Even the remnants of consciousness was daunting.

The medical staff had made multiple excuses. Convinced my father into local. My father, in turn, convinced me into local anaesthesia.

I remember trembling, there was no tenderness in any of them. My 17 year old self felt so alone. And then the anaesthesia hit me. But I remember stuff, vaguely. Stray conversations, voices. I remember my father being called into the procedure room, the doctor showing my father the tightness of my LES (Lower Espohageal Sphincter muscle), talking about it. It was hard for me to gather the courage to confirm it with my father, but the doctor confirmed it, later, during a conversation with us.

I remember the nurse treating me like a pathetic stray cat, she was annoyed that I didn’t wake up fast enough.

Then the esophageal spasms hit and it just… all of it became a murky haze enveloped in pain.

*

I did not believe in Allopathy medicine. I still do not. It’s also because my mom is a Homeopathy doctor. I have seen how effective and life changing the medicine can be. There are limitation to the scope of the medicines, just like allopathy.

Homeopathy is not effective with Type III Acahalasia Cardia. If it is, the effects are temporary, the disorder adapts faster than the medication’s required time for effect.

The first doctor I had gone to was a homeopathy doctor, the second one was also a homeopathy doctor. My father fought for me to go to a gastroenterologist to get a definitive diagnosis. My second homeopathy doctor was against this.

The day I came back from the hospital after the endoscopy, I had terrible ensophageal spams. It was a stabbing pain, a chocking pain, a burning pain. It was all over my chest. Squeezing, expanding. It hurt, a lot. I couldn’t think. All I could do was feel. Moving helped, I moved a lot. Digging my nails into surfaces helped me, held me back from crying. I dug my nails into the soft cushions of the sofa. Antacid was supposed to help. I took three. It became worse.

We called the doctor, he threw a tantrum, yelled at us about going to the allopath, about me getting the tests. Cut the call, refused to pick up the call for days. We went to his hometown, pacified him, and then he began to talk again.

*

Homeopathy medication isn’t entirely accessible in Singapore. It was one of the reasons why we had asked this new homeopathy doctor for a list of medicines that he foresaw me needing.

I was on Lachesis- I can never forget the name, or Lycopodium, that was the first medicine I was on -it helped, a lot, for a few weeks. Then my flare ups got progressively more aggressive. And then, the Lockdown hit.

The doctor’s want for more exotic medication (medicines that I did not have or have any way of accessing) became progressively ambitious. This is the kindest way I can put it. It was frustrating. It was three months before I gave in, didn’t care about medications.

One time a specifically horrendous flare up hit me. I went about an entire week without being able to eat and spasms, horrifying spasms. When I called for the doctor and told him so, he said, “did you know that a human being can go without food for 10 days, more if water is a part of the diet.”

I think I screamed, internally.

After this I refused treatment from the doctor. Asked my mom to prescribe me medications in the mean while.

***

March 2020

I was being suggested Traditional Chinese Medicine for my disorder by well meaning friends. It wasn’t something I was invested in. My mom found out about it, researched, found a doctor, told me to go to them. It was a one and half hour journey to get there. I went early, took a taxi. Went in, I knew it was going to be disappointing, but the way I was told that I was going to be disappointed… it still hurts.

The clinic was small, Traditional Chinese Medicine clinics always are. They took down my information. I waited, not more than 5 minutes I think. I was texting, or pretending to be on my phone. Nothing held my attention those days. It was hard to concentrate. Harder even to think.

And then I went in, the doctor looked at my reports, told me there was nothing she could do.

I just… I cried.

I walked out, slowly. I think I called my mom to yell at her, the most morbid I told you so. Tried to book a taxi, none were available. Took a bus and refused to process it for days, months even.

I still appreciate the doctor’s honesty.

***

June 2020

I gave up, came back to India for a gap year. It was perhaps the hardest choice I had to make. We found a doctor, another gastroenterologist.

By this time my views on surgery had changed. I would have given anything for a break from the pain. And I wanted a scar, something to remind me that my pain wasn’t all in my head. The world does that to you, you know. It feels like the pain is all in your head, that you are not a reliable source about your own pain.

I had the kindest anaesthesiology teams. They held my hand during the endoscopy, they were kind, understanding. This time I didn’t feel the spasms. It wasn’t as bad as the last hospital.

It was my doctor who had made the most callous statement. It was in Hindi, my translation does not hold the same impact, but it’s close enough.

“Achalasia, ah sir (my father, he did not directly address me when it came to this), you shouldn’t worry at all about it. If there is a disease that you must ask from god, it is Achalasia. It is totally curable.

I had done enough research, seen enough personal accounts, spoken to enough people who have Achalasia to known that the current treatments are effective, temporarily. Surgery was a way to manage symptoms.

It significantly decreased my pain. But it did not cure me. It has made some of my symptoms significantly worse, and some astronomically better. The first four months were the best, bar the month right after surgery. That does not mean I didn’t feel symptoms, it means that they were so minimal compared to the last three years that I just didn’t care. Please do take account of the fact that my pain threshold is not an average one.

And then I started noticing my symptoms getting worse.

The doctor sounded, and still sounds horrifyingly unsympathetic.

*

I needed to get a Lung Function test as a part of my surgery checks. It was the most horrifying experience ever.

I felt berated, demeaned, and in pain. It was the first time I was told, in glaring terms, that I was lacking because of the way my body functioned.

I wasn’t able to breathe the way he wanted me to. He told me that a 80 year old man would do better than I did on the test. That I was fucking up my test on purpose. That I wouldn’t get my surgery if I didn’t do this test “better”.

I haven’t ever felt the need to claw a medical professional’s face off as strongly as I did on that specific day.

*

After surgery, I had to get a Barium Swallow test.

While being wheeled back to my room I had noticed young doctors talking about the barium swallow test. Showing each other something captured on their phones. The doctors who were in the room had recorded it, I had seen them recording it. I though it was to show their superiors, my doctor, I thought it was for records.

It forced me to remember the first time I came to the hospital for my tests. I remember them talking in the hallways, the details were blurry. I was brain fogged, terrified, perfunctorily paying attention to the details. It took me the above thing happening for the past to be put in perspective.

I did not give my consent to be discussed in hallways. I hadn’t given my consent the first time around, I did not give my consent this time either.

***

I don’t hate all doctors, to show that I want to mention two doctors that I deeply appreciate to this day.

One is my spine specialist, second is the surgeon who did my surgery.

The surgeon did not inflate my expectations. He was mellow, honest. He set my expectations. Told me about the volatility of my condition and the disorder. The longterm outcomes (and short term, because of the type of Achalasia I have) are unpredictable because it is also dependent on my body and how it adapts.

A few months after my surgery, I began paying attention to a different set of symptoms. It’s a zap like sensation. It used to happen behind my ear before achalasia. After Achalasia , the intensity increased. After surgery the interval decreased but the intensity minimally increased. I didn’t experience it only behind my ear now. It happened all over my body. It’s like a vein set on fire with mild electricity. It lasts up to 10 seconds.

The doctor was kind, he said that he had never heard of these symptoms, but did not invalidate my experience. Did not tell me that it could not be true because it wasn’t a part of his sphere of knowledge. He said we should wait, and see how it evolves. Maybe the evolution would give more clues as to what it is, if it is connected to my scoliosis.

He also made a mildly distressed face when he got to know about my achalasia and surgery. A very mild one. A very, very small one. It still makes me laugh.

***

Good doctors do more than a physical healing. Decent doctors only do a physical healing. Bad doctors, these can be exceptional at healing, but they can cripple you, warp your fundamental understanding of the world.

Then again, this is not a binary. It is not exactly in the sphere of good or bad. It is in the sphere of humane and inhumane. Of whether they have put in the work of understanding more than their textbooks, beyond their textbooks. To understand that pain is subjective, that it is actually a pulsing, radiating, crippling feeling. That the definition is a palatable form of summarising something monumental in a person’s life into neat, clean, small words for people who do not experience the same kind of pain.

*

If you wish to continue reading about conversation in between doctors and chronically ill people, I suggest looking at @thingsdoctorssay on Instagram. They also feature posts from chronically ill people’s pages on their accounts of their encounters with doctors.