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The case of my husband’s tumor and recovery

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Editors’ note: Yasser Latif Hamdani, aka YLH, is one of Pakistan’s most prolific progressive writers whose devotion to Pakistan’s founder Jinnah and his cause are well-known. One year ago, we all feared losing this outstanding voice for a pluralistic Pakistan as Yasser collapsed and later medical tests indicated that he had a tumor in his skull. In this heartfelt piece, Yasser’s wife, Aisha Sarwari – also a brilliant writer and communications professional -recalls those trying days. On Septmber 21 2017, Yasser experienced the first seizure while exercising in a gym. Aisha remembers how painful it was for her and the family to see him fight illness. Yasser is a great survivor and so is Aisha who shares this exceptional story of love, resilience and courage.


The most difficult part of loving is letting go. I met my husband, Yasser Hamdani in 1999. I was nineteen, athletic and he loved the fact that when I ran to meet him at bus stops, my hair pony flipped in the California wind where I studied as an undergrad. He’d come to visit my family and I. We’d make plans to change the world when we go back home to Pakistan. We loved everything Pakistani. This united us and kept us friends before all else.

It takes the simplest things to make promises. Promises like: in sickness and in health. All promises are fake promises. Philosophers say love is like wanting a fig in winter and summer and spring and always. That’s not how life works out for those who want figs.


The last thing he would say to me before going into a massive mouth foaming, grunting seizure is: this is something else.


People you care for are separate people from you, with separate bodies.

Had I known that Yasser and I would be working out for 45 minutes at a hotel gym in Islamabad a decade and a half later, and that my hair pony would be swinging, but only moments later he would lie on the floor exhausted. It was September 21, 2017. I looked at him on the floor of that wooden gym, cradled his head, and asked him: what’s wrong?

The last thing he would say to me before going into a massive mouth foaming, grunting seizure is: this is something else.

His eyes rolled back, gradually like a descent into a dark cave; his entire body jerked terrifyingly, his fingers turned inward. All of it just wouldn’t stop and I was sure he would not come out the other side of what happened. I made more promises to him over and over again as I screamed for someone to get an ambulance: I’m right here. I’m right here. I’m right here. But I wasn’t. I was far away, drifting on the storm of fears and childhood abandonment and its terror.

When we reached the nearest Islamabad hospital, the doctor on staff insisted that I take my husband home because the ECG turned out fine. When I described the fit to the doctor, he kept saying Yasser is ok now so no need to worry. “He probably just over-exercised.” I decided to trust my intuition and call someone who would listen.

Thankfully, my brother Arif Sarwari who is Chair of Medicine at West Virginia University Hospital picked up his phone in one ring. He advised me to first stay calm. Then he said to admit Yasser at the hospital overnight to run all necessary tests, including a CT Scan.

I told our daughters, 12 and 11 at the time, a story about work keeping us, so they wouldn’t worry. I called my Mother in Law to check on Yasser, since she is also a doctor and we did just that: run tests on Yasser. That night Yasser and I shared a private room with another old couple that was suffering. I wondered if we would both live long enough to be as old as them.

Yasser had recovered from the seizure but he was so disoriented. He felt months had passed by, instead of minutes. He repeated the same questions over and over again. His tongue was white like salt and he seemed to have aged at least half a decade in moments. As he slept that night with IV lines in his arms, I knew this was not dehydration, not exhaustion, not an outlier of some seizure in an otherwise fit man, this was what Yasser said it was – “something else.”

I knew also because since 1999, Yasser had drifted from being a genius with a positive override and a bit of obsession, to a super-genius with a negative override and massive obsessions and compulsions. The medium he thrust these obsessions on was all-public. His internet addiction, sadly, made a good fit for his control issues. Therefore, with everything he wrote and defended politically and historically was accompanied with online trolling and shaming and name-calling: narcissist, bipolar, manic, mad, insane, crazy and of course given our society’s obsession to blame women the constant messages I got were: control your husband. The shame was thrust on me, as much as it was on him. People found it hard to separate the argument from the way it was said, others found that he walked into online harassment on his own, without his opponents even trying.


When I sat there looking at him all night, I knew what he meant when he said, “this is something else.” There were parts of him that came from someplace else. Parts that were not him.


Outside the word of web, he was a lawyer who often had great court days, a biographer of Pakistan’s founding father, a writer, a fitness freak and a prolific opinion-maker. I knew him as someone who failed at perfect judgment but never at putting my kids, his mom and me, first. Even my family was part of that inner circle. And his friends from Rutgers University and mine too, who by extension of my adoration of him, stuck around and let him think they were his best friends too. It was cute. But there were also all the other rare times when all the above did not stand true. When he was angry, and rude and dismissive and he had this self-destruct mode.

I’d have to step in, be in charge, and guide him back to the true north.

When I sat there looking at him all night, I knew what he meant when he said, “this is something else.” There were parts of him that came from someplace else. Parts that were not him.

Those who knew him knew this intuitively. Even before the CT scan the next afternoon revealed that he had a 5cm tumor in his right side of the brain.

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When my older daughter found out she cried, for the first time in years, because she’s a strong one, and said: “But Baba had so many dreams.” My younger daughter just cried and cried, she was always the one who loved Baba’s snuggles and kisses.

My friend Nadia Naviwalla stood by me at the hospital as I held the CT scan up to the light and saw the dark ominous shade on the scan. My hands were shaking and so was the larger than life CT scan. She held my hands and made them steady and said: the report has a question mark after the word “mass”, so maybe it’s not a tumor, let’s wait.

I pressed Nadia’s hand back and waited for the MRI to reveal that it was indeed a tumor. Most likely an oligo-dendrioglaioma.

The next day I had a meeting with a minister for work, I showed up for the meeting looking like Ursala from The Little Mermaid, and I am glad I did. A friend also at the meeting, Munizae Jehangir suggested that we consult with Dr Ather Enam at AKU Karachi. I told her Yasser’s psychiatrist, Dr Asma Humayun also suggested the same surgeon. Almost everyone who learned of Yasser’s condition, suggested we only operate through Dr Enam, given his expertise. That there was no need to go abroad.


Those who didn’t like us, had a party, telling us everything that happened was because we sinned, or disagreed or were just bad people and therefore, we deserved it and it will end badly.


Our decision to not keep Yasser’s condition under wraps allowed for two blessings and one curse. The blessings were that the trio – Dr Athar Enam, Dr Asma Humayun and Dr Arif Sarwari gave Yasser a new life. Their involvement, sometimes though sleepless nights of crisis ensured that decisions got made on time and that corrective actions were taken over irrational emotions.

The other blessing was that we got so much strength from the constant messages of strength and prayers from family and friends and even strangers.

However, the curse was that those who didn’t like us, had a party, telling us everything that happened was because we sinned, or disagreed or were just bad people and therefore, we deserved it and it will end badly.

Finding out that your husband has a tumor changes a lot of things for you, but imaginably it’s a universe shift for the man with the tumor in his head.

Yasser never showed his fear, though. It was almost like he stared at death like it was going to happen, or not, either way, he wasn’t going to plan for either. He went on doing TV shows, writing articles, getting into Twitter spat over facts and dates and narratives.


Yasser’s Twitter bio once read Sipah-e-Jinnah. Perhaps there was one more person in addition to the three people who saved his life. Medicine is medicine: there is surgery; chemicals and psychiatry, but healing, science says comes also partly from believing in something bigger than ourselves. A cause, a fight, a fact.


Yasser had the strength perhaps of the man he emulated so much. Through his tumor days, which Dr Athar Enam said were perhaps 15 years of his life, Yasser had one single anchor in his life: Mohammad Ali Jinnah. So, whereas it was a big joke in our family that he’s obsessive about Jinnah, it was what pieced the scatter together.

Yasser’s Twitter bio once read Sipah-e-Jinnah. Perhaps there was one more person in addition to the three people who saved his life. Medicine is medicine: there is surgery; chemicals and psychiatry, but healing, science says comes also partly from believing in something bigger than ourselves. A cause, a fight, a fact.

For Yasser, only religious to the extent of being culturally Muslim, was a huge devout of the man who tried to his dying day, to make what was once India, progressive, just and kind towards minorities.

So while we waited a month for Dr Enam to return from a conference, the man with a tumor pressing against his thoughts, turned to songs of Faiz Ahmed Faiz and books and history to find himself in the face of likely death, paralysis, stroke and all the other listed complications of surgery, explained clearly by the AKU medical team on emails.

Each morning that month, when I opened my eyes, I shut them tight again and tried to tell my beating heart to hold on because the project manager that I was could not afford to off herself.

So I had about 60 or so things-to-do in a list on my project management app. This included tickets to Karachi from Islamabad, logistics, an errand boy, food for a month and other things like calling my sister, Faeza Samnakay, from Australia to drop her life and come for three weeks to take care of my kids. She had to be with them while the only three people in my daughter’s lives go away to save one of the three. It was then that I understood why one needs bigger families and bigger networks, why one needs all the help one can get, all the kindness and all the solidarity from so many people who told me their health scares. Told me to hold on. When my sister came home, I then shifted gears and flew off with Yasser and my mother in law to Karachi for the big operation to remove the tumor.

On the plane, my hair was in an unruly ugly bun. Yasser and I held hands and he said to me: promise me that if I die on the operation table, you’ll bury me in Jinnah’s city. I looked out at the clouds and looked back at him and nodded. All promises are false promises. But this one, I intended to keep. When we landed, I asked someone to get me information on graveyards and to stand by.

The day we admitted Yasser to AKU, my mother in law and Yasser and I fought with each other in the corridors of the hospital. Our stress levels were soaring and she was the most justified in acting out her fears and anger. I pulled out my peacekeeper hat, and worked it out, calmed everyone down. We settled in the private wing of AKU and ate, and hydrated and watched TV as if it served even an iota of importance. We made up. We waited for the next day.

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Before meeting Dr Athar Enam we had a list of questions, which we left till the end. Something about the way Dr Enam explained the tumor on his 3D screen in his consulting office was both humorous and made the tumor appear beatable. He gave us hope, he made jokes and he also told us the risks very clearly. He explained the pain Yasser would go through in an awake-craniotomy and he explained that he’s done these operations before and we have reason to hope for the best.


On the day of the surgery, we held each other and I asked him: give me this one day and I’ll give you a lifetime of happiness. What would we do without promises?


We had hardly any questions left. Yasser had a consult afterwards to determine if he was mentally fit to go through a gruesome 6-hour surgery of his skull opening, the tumor being resected and the skull being sealed again, all while he watched awake. When I asked Yasser if he could go through it, he said he would do anything to increase his chances of living.

On the day of the surgery, we held each other and I asked him: give me this one day and I’ll give you a lifetime of happiness. What would we do without promises?

On October 18, 2017, Yasser was rolled into his operation theatre in a very emotional state. All his strength was drained because the catheter insertion right before surgery went wrong and knocked him out with such high levels of pain that he was very unprepared for. The last thing I said to him: give me this day.

In the operating room, his anesthesiologists, particularly Dr Fauzia, spoke to him gently and calmly about the dozen or so injections in his nerves that will help numb his skull. He requested the operation team to keep him alive because it was our older daughters birthday. He said to them: if I die today, it’ll ruin her life. Please keep me alive.

He said the pain was nothing like he imagined any pain would be. Yasser was a pampered child, a pampered husband and a pampered father. He had the softest artists’ fingers.

This account of the pain he felt during the anesthesia injections was especially sad. The cutting of his dura-matter was so painful, he said, the pressure almost got him to drift away.


Yasser was rolled out of the theatre all sealed up. He was ok. He made it through the surgery. My mother in law told me beaming ear to ear. I looked at her in half disbelief, half relief and half a universe of gratitude.


My mother in law paced outside the operation room for all those hours. I sat in the private room with Nadia, unable to move. Somehow Nadia managed to distract me enough to talk about stuff we laughed about. When I waited for this day, I never thought I would actually laugh through the most anticipated moment on my life but, there I was laughing at inane stuff life is made of.

Yasser was rolled out of the theatre all sealed up. He was ok. He made it through the surgery. My mother in law told me beaming ear to ear. I looked at her in half disbelief, half relief and half a universe of gratitude.

We hugged. She said she met Dr Enam and he told her that he took it all out.

When I saw Yasser, he said: I did it for you. Then I Googled Jinnah’s picture and he said to the picture: and for you. The steroids flooding his bloodstream made him talkative and excitable. That night, he had a terrible headache. He managed to eat and drink some water.

Life from then on had Yasser in it. That is a fairy tale as real life fairy tales go. His tumor did not need chemotherapy or radiotherapy. His follow up MRI showed good progress. As did the one that we did after he returned from his 6-month Law and Human Rights fellowship at Harvard.

His post-op recovery was harder than the surgery period. Medication, pain, fatigue, lack of focus, anxiety, the inability to handle motion or light or too much sensorial stimulus persisted. Then came the anti-seizure medication withdrawal that felt like a coal walk for the entire family, because he suffered, so we suffered.

What matters is that I have my pony tail, even though much of my hair are gone thanks to stress, he has his artistic hands and we are still together, even though not all promises that were made, were kept.

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2 Comments

  1. Dr. M.Tariq September 21, 2018

    I can relate to Aisha Sarwari andLatif Hamdani’s pain and anguish because I have been going through the sickening and painful experience of seizures for the last forty years since I underwent a neurosurgery following a brain haemorrhage at a young age of twenty one. All kudos both for Latif Hamdani and his family too, because I can understand the deep anguish felt by a wife, a mother, a father, or a child witnessing their loved one going through such an experience. On top of that our society associate such labels to this malady that people try to hide this problem. However from my personal experience I can say with confidence that it is no impediment towards getting the highest educational qualifactions and a successful career, since in spite of my medical condition, I got a PhDfrom a very reputable university in U.K. and persued a successful career for thirty six years.

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  2. Raza September 21, 2018

    What a powerful piece of writing.

    Reply

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