PROLOGUE

 

 

My hospital room is pitch black. I can’t breathe. Each breath feels shorter than the last. My heart is pounding like I’ve just run a race. The harsh incline of my bed is killing my back. The cacophony of the equipment I’m plugged into is deafening.

It’s two in the morning. Time seems to stand still. How long do I really have? Is this it? Oh God, just give me one more day. Just one more blessed day.

Dawn finally breaks. She walks in with a smile. I demand to be put back on the ventilator. Her smile disappears. She reasons, but I don’t want any of it.

The doctor walks in. His mind agrees with her. His heart agrees with me. Her logic or his empathy? Does she win or do I?

The medical team charges into my room. They set up the ventilator. I’m getting what I asked for. Wait. Did I ask for too much? Will I wake up again? Will I ever breathe on my own? Will I find a donor?

I was never a gambler but what had I just bet on this time?

I sense a needle prick. I’m drifting off.

Help.

 

 

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DEATH

 

 

What happens when we take our last breath?
Where does our soul elope with that stranger called death?
Do our eyes finally shut, never to open again?
Does our mind cease to function, right there and then?

 

How is it to escape the clutches of emotion?
Is our soul a fan of silence or of commotion?
Can we still feel? – is there even a chance?
Where to next will our soul advance?

 

What if today is my turn to go away?

What if I’m not ready and I just want to stay?
What if there's so much I still want to see?
What if time could just wait for me?

 

Will there ever be a time I feel ready to go?
When the time is near, would I rather not know?
Will I sort my affairs for those I hold dear?
When death finally comes, will I go with no fear?

 

 

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ONE

 

 

“Okay, we’ve got a problem.”

 

January 01, 2018. Resolutions. It was that time of the year to make promises. Mostly unkept ones, but who cared. Everyone was a culprit, so no one was judged guilty. I too made my customary list – spend more time with the family, achieve greater success at work, pick up a sport, organize a great holiday. All the usual suspects that most people have on their list. Little did I know the reality that awaited me this year.

I turned 38 on January 11. Two cakes – one at home and one at work, a cozy candle-lit dinner with my gorgeous wife Shehna and my amazing little kids, Aayat and Azaan. I couldn’t have asked for more. Life was coasting, both at home and at work.

I had been fighting a nagging cough for a while, a few weeks perhaps. And I also felt slightly breathless and lethargic when I exerted myself. One of my best friends, Mehvish, teased me about how unfit I was when she heard me pant while climbing a single flight of stairs at work. Though I ignored it initially, I felt it was perhaps a good time to visit the doctor for a check-up as the cough just wouldn’t go away.

Shehna and I never had a specific doctor whom we considered our go-to person. Unlike our parents, who each had their family doctor – the first person they approached for anything – we typically approached specialists depending upon the situation, as and when required.

In this instance, I wasn’t sure which specialization to choose. Do I go to an ENT as my primary issue was the cough? But would that person be the right one to deal with my breathlessness, I wondered. Eventually, I decided to take a punt and visit Dr. Helen, an internal medicine specialist at our neighborhood clinic. We had never met her before.

Dr. Helen greeted us with a pleasant smile. She was of Indian origin and upon meeting her, I guessed she was from the same state in India as I was – Kerala.

“Well Doc, I’ve been having trouble with my breathing for a while. Also, for the past few weeks, I’ve had a cough which just doesn’t seem to go away.”

“Hmm. Any other issues? Body aches? Feeling lethargic? Anything of that sort?” asked Dr. Helen.

“He gets exhausted quite quickly. Like when he climbs stairs. He also falls asleep any time he sits down,” Shehna added.

“Okay, let me first listen to your breathing and heartbeat. We can then discuss next steps.”

Dr. Helen walked up to me with her stethoscope. Tall and plump, she may have looked far different from her namesake who went to Troy. But with her muscular build she could easily be mistaken as the daughter of Zeus.

“Could you please take a deep breath for me?” she said, placing her stethoscope on my back.

Epiphany: I realized, for the first time, that I couldn’t really take a deep breath. Though I was surprised, I just attributed it to my chest congestion and cough.

“Okay, Ansar, before we arrive at a diagnosis, I recommend you do a blood test and a chest x-ray. I will see you right after the x-ray session and we can have a chat.”

Fortunately, I don’t have a major problem doing blood tests, unlike some of my nearest and dearest. One of them ends up passing out each time blood is drawn from his delicate body. I completed the tests right then and waited for my turn to meet Dr. Helen again.

Sitting pensively looking at her computer where she was reviewing the x-ray images, she knowingly or unknowingly blurted out,

“This is quite a traumatic image.”

My inner voice barked: What? Who says that? What do you mean by traumatic? How bad is it? Is it really THAT bad? Is it a fixable level of bad?

Hearing her words, a barrage of thoughts triggered in my mind. I tried to second guess what the problem was. The worst disease that I knew of was cancer. Could it be that? We’ve had a lot of cases in the family.

Oh God, is this lady going to tell us more?

“So Ansar, you’ve got quite a few scars on your lungs. It’s too early to say what it could be from, but I’d recommend that you meet a pulmonologist at the earliest.”

What in the world is a pulmonologist? I guess it’s a doctor who specializes in lungs. Wasn’t there a simpler term for such doctors? Like “Lung Specialists?” Whatever.

“I know the next steps that need to be taken, but ethically I feel it’s better that a pulmonologist guides you through each step.” 

 

Thanks Doc, I don’t know if I should feel good or bad now.

I was then referred to Dr. Patel, a pulmonologist within the same clinic’s network, whom I went to meet the same day. After a long wait amid crying babies, as we sat next to a play area, we eventually made it to his office.

Dr. Patel was so tiny, I could barely see his face behind his computer screen. As obvious from his name, he was also of Indian origin, but from the northern part. Scrawny, expressionless and quite quiet, he looked abashed, like he had just come out of detention. Shehna looked at me and smiled. Later she told me that she found his face cute.

My wife – What peculiar taste in men she had! Classic example - her husband.
 

“Mr. Ansar, with the information and reports I have so far from Dr. Helen, this looks like a case of Interstitial Lung Disease, and more specifically Idiopathic Pulmonary Fibrosis,” Dr. Patel kicked off his monologue.
 

Did he just say Idiotic something something? Is that even a disease?
 

“But before we proceed, I would recommend that you do a few more tests so that we can get to the root of the problem. Unfortunately, I can’t run those tests here in the clinic. You would be better off doing them in a hospital as an inpatient.”

This time I was paying very close attention to his facial expressions to see if I could get some of my unanswered questions resolved. His face was deadpan. I wondered if he did that on purpose or if he really was that way all the time.

Imagine a life with that expressionless face. Arent there doctors to fix that? Like a Cheerologist? No, not a Chirologist. Palm reading is not what Dr. Patel needs. C’mon doctors. How did you miss this one?

He then recommended a few hospitals with pulmonologists he knew of, which I then selected from.

I could gauge how serious my condition was when I saw his reaction to my simple question:

“Doctor, in case the insurance approvals for the hospital admission and tests take time, can I go to work tomorrow?”

Dr. Patel responded, three centimeters of anxiety beginning to break through his emotion-deprived face, “My friend, please head to the hospital emergency section right now. It’s time to take care of your body. Work and everything else can wait for the time being.”

Okay, we’ve got a problem. And it doesn’t look pretty. Dear Idiotic Fibrosis, out of the 10 million residents of the United Arab Emirates, why did you choose me?

I’ve always categorized doctors into two groups – fun-cool and un-cool. Fun-cool doctors are those who are damn good at their job but are also extremely gifted in making you feel comfortable and have a good time. Un-cool doctors are also excellent at their job, but do it in a very functional and transactional manner.

You might ask how I categorize doctors who are not that good at their job. Well, let’s not call them doctors then. I come from the school of thought that if you opt to do something in life, do it well. Else find your true calling elsewhere.

So, what’s the verdict on Dr. Patel?

Un-cool. Period.

 

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Shehna and I headed to the hospital where the recommended pulmonologist was based. It’s a hospital that we were familiar with as one of Shehna’s friends worked there.

During the drive to the hospital, I had two tasks.

The first one was to inform my parents of the situation, especially as it looked like I would be admitted to the hospital that night.

The second was to google what Interstitial Lung Disease and Idiopathic Pulmonary Fibrosis were.

“Hey Mom, you have a minute?” I asked.

“Yes, is everything okay? Did you finish with the clinic?”

“I’m done with the clinic Mom, but they’ve asked me to get admitted at a hospital… need tests… found scars… need treatment.”

I was eating my words trying to speak fast so that I could finish up and get onto Google.

“Scars? What kind of scars?” Mom asked worriedly.

I was getting impatient. I didn’t know much more and I needed Google for that, which was task number two. So I wanted to rush.

I hurriedly said, “I don’t know, Mom. Will find out more. Once I know, I’ll call. Anyways, please tell Dad, I’m almost there. Need to go.”

“Okay. Okay. Fine. Call me,” Mom sounded like she was in some sort of trance.

Task one – check. I quickly proceeded to task two.

“Popu,” said Shehna using our term of endearment for each other. “I don’t think Mom would have understood much. You spoke in a very chaotic way,” Shehna said, her face expressionless.

Did she eat a pill from Dr. Patel’s clinic?

Slightly annoyed that I was being distracted from my Google search, I replied, “Popu, I explained the basics. We don’t know much now, so let’s speak to them once we find out. Doesn’t that make sense?”

Shehna nodded. She knew there was no point arguing with my stubborn self right then. I returned to my phone.

I-d-i-o-t-i-c… backspace, backspace, backspace… -p-a-t-h-i-c… I didn’t need to type anything further because the Google search bar is a great snitch. It couldn’t resist spitting out the remaining wretched terms. Before I could press enter, my phone rang. It was Dad.

Why does everyone have to distract me right now? Just give Google and me two minutes on our own.

“Ansar, what’s the issue? Mom spoke to me on the phone but I couldn’t understand clearly. What’s going on?” Dad asked sounding confused and frustrated. He was a man who always needed to be in control of the situation. Surprises, good or bad, weren’t really his thing.

Based on his tone, I figured Mom hadn’t dealt with the news well. I explained the situation to Dad and asked him to come to the hospital so that we could find out more. I then opened up my web browser to jump onto task two.

OK Google, I’m back.

After successfully negotiating the most claustrophobic underground parking in history, we both made it to the emergency section of the hospital. The team led me to a gurney and checked my vital signs. My blood pressure, which has always been normal, showed an extremely high score. Shehna was surprised to see this and her first question to me, with a very stern face was:

“Popu, what did you find on Google?”

What I read on Google was that a person who suffers from Idiotic Fibrosis typically has a lifespan of five to seven years. Five to seven years. Oh my God!

“Erm, nothing, Popu. I didn’t manage to read anything because I was speaking with Dad,” I deflected Shehna’s question. But her question did answer why my blood pressure may have soared so high.

Enter Dr. Zahid, the pulmonologist recommended by Dr. Patel. He also happened to be an Indian from Kerala, surprise surprise. A little over six-foot tall, dark and balding; he was a spitting image of one of my friends, Sreejith. While he walked towards me, it took me a moment to realize that it wasn’t him. He was very warm and friendly, speaking to me as if I’d known him for years.

Fun-cool, for a change!

Dr. Zahid looked at the x-ray and test reports and also heard me out to understand the background. He looked at my nails, my eyes, my throat and also asked whether I smoked, lived in areas affected by asbestos or coal, my family history and some very random yet sometimes funny questions.

Wait, is this an audition for The Ellen DeGeneres Show?

Dr. Zahid then asked me to undergo a CT scan. It was my first time passing through an electronic donut.

Fun I guess, but I still preferred the edible kind, glazed with white chocolate.

Shehna and I were asked to wait outside the lab for a few minutes. Dr. Zahid then came by and asked me to follow him to a nearby room. We sat down and he spoke. Slowly.

“Ansar, the scan shows that you have been affected by what is called Interstitial Lung Disease. Have you heard of this before?”

Ouch. That same bloody name.

I shook my head and maintained a poker-face saying I had no clue except for hearing similar names from Dr. Patel. Of course, I was hoping that whatever little I saw on Google earlier was not true.

Dr. Zahid continued, “Interstitial Lung Disease is a broad category that includes various lung conditions that affect the interstitium – a thin network of tissues that surrounds the lungs, which enables oxygen from the lungs to get distributed to the rest of the body. We need to do further analysis but you seem to have what we call Idiopathic Pulmonary Fibrosis, or IPF in short.”

I had to read about IMF during school and I could barely keep myself awake. But looks like IPF will now give me sleepless nights. Oh no.

“Pulmonary Fibrosis is a disease where tissues in your lungs become thick and scarred over time due to inflammation. As a result, your lungs lose the ability to expand and pass on oxygen to the rest of your body to function normally. Hence you suffer from breathlessness and general weakness. In a lot of cases, the root cause is unknown, hence the term “idiopathic.” Therefore, such cases are called Idiopathic Pulmonary Fibrosis,” Dr. Zahid concluded.

Thanks, Doc. Now who’s going to clean up this verbal vomit of medical mania that’s splattered in front of me? So gross.

“What you need to understand about the lungs - as an organ - is that once it’s affected by fibrosis, it is generally irreparable. We can only try and protect the parts that are well-functioning,” Dr. Zahid planted this nuclear bomb with an unassuming smile.

I sat still, looking at the doctor, waiting to see if he had any more bullets to pierce into my chest. I felt like I had come to the hospital to treat a gunshot wound, only to be shot at many more times.

Dr. Zahid didn’t say anything else; he just sat looking at me.

Dude, are we playing Who Blinks First now?

I decided to break the silence.

“How much of my lungs have been impacted so far, doctor?”

“We believe around 15-20 percent of both lungs are affected. This is manageable.”

Manageable? Just two minutes earlier, you said with a smile – what’s gone is gone. What are you going to manage now?

We need to ensure we use the right medication from as early as possible and we can try and control this disease from getting worse,” the doctor continued.

“Can try…” Not really confidence-boosting, Doc. But hey, beggars can’t be choosers. So, I’ll behave.

“I’d like to give you one specific piece of advice,” Dr. Zahid said after a pause. “If you have any questions, feel free to ask me or any other doctor that you are familiar with. But please, please don’t Google it. This is a very broad and relatively new area and I don’t want you to be misguided,” he pleaded.

I chuckled from within. Though I wanted to blurt it out, I managed to keep my reaction within my inner voice.

Sorry Doc, that ship has sailed!

I wonder what the folks at Google would think of Dr. Zahid’s advice. They probably wouldn’t be very flattered. But I understood him. At the end of the day, a reference book can provide you information. It can’t necessarily replace the need for a professional to apply it.

Maybe I’m being a dinosaur in the age of Artificial Intelligence?

I was then admitted to the hospital for observation and a series of tests. By then my parents and Shehna’s dad had arrived.

 

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2002: We were in Kerala for our summer break, spending most of our time meeting relatives and relatives of relatives.

Do you find that surprising? Welcome to India.

These family gatherings meant a lot to Dad and Mom. Regardless of the fact that they had lived most of their lives in the UAE, home was still Kerala and relatives were still their closest friends.

One night, we were at Mom’s ancestral house where her brothers’ families lived. After dinner, everyone casually sat around to chat. Dad was in an exceptionally funny mood that day and stole the show with his repartee. For a second during that wonderful evening, I realized we were living a magical moment. So many family members around, so much laughter, so much happiness.

Why do I sense an iceberg around the corner?

I woke up the next day listening to two distinct sounds – of birds singing passionately, trying to find a partner to mate; and of my uncle calling out repeatedly, trying to tell me we were getting late.

I had barely opened my eyes when he announced the day’s headline – Dad had to be rushed to the hospital in the early hours of the morning because he complained of chest pain. As he had a heart condition, it didn’t take me too long to guess what the situation could be. I got ready in a jiffy and headed to the hospital.

Dad was sitting in his bed, smiling, as if nothing had happened. We found out later that he had a major blockage in his arteries and needed a bypass surgery.

Sixteen years later, the tables had turned. This time I sat in a hospital bed, smiling, as my parents walked in. I tried to act as if nothing had happened.

Hey Google, will parental control block stuff from parents too?

 

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We tried to explain the situation to Dad, Mom and Shehna’s dad. How much of it did they digest then? We weren’t sure, as we didn’t know how much we had digested ourselves by then.

Over the next few days, I was treated to a countless number of needle pricks, scans and doctor visits. Luckily, there weren’t any issues with my other organs, for example, the heart, which can be susceptible to complications when there are issues affecting the lungs.

All said and done, at least my heart was in the right place. Thank God!

After four days, I was gifted with a gigantic goody bag filled with medicines that I had to have on a long-term basis and was allowed to go home. I was asked to do follow up tests and visits every fortnight to see whether the medication was curbing further progression of the disease. Dr. Zahid was upbeat and advised me to stay positive.

Statistics say that Idiopathic Pulmonary Fibrosis hits 12 among 100,000 people a year.

Damn. I should have bought a lottery ticket last month.

The fact of the matter was – I was now part of a select group of people, those living on borrowed time.

 

Would I be able to get past what I read on Google?
Would there be a light at the end of this scary tunnel?
Will I have the opportunity to make new resolutions in 2019?

 

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For more, buy "Who Took My Breath Away?" on Amazon.com

 

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