This story is part of a series: Unspoken Saga (Part-6) Unspoken Saga (Part-5) Unspoken Saga…..
Today, at a time in my life, when I look back, I remember many things I want to say! Where I start, where to end, is not precisely understandable. Yet when I think of it, I try to say it.
Surviving with someone else’s organ, I am fighting over time. Passing one day at a time is like a battle. I am not inside me, someone else whose presence I always feel. I don’t know who the person is! Hindu, Muslim, Christian, Buddhist, black or white, or any serial killer! I don’t know anything. I know, I’m living with someone’s organ.
It was an incident in February 2019. I went to Bangladesh for a week to a book fair. It was my first novel, ‘Binu’, published. For the past few years, I have been attending every book fair with my book published by Onnodhara publication. That year also I went to my birth land, and as usual, I stayed in the house of my close friend in Mirpur, Dhaka. However, the night before boarding the plane, I suddenly saw a slight rash on my body. I went to the primary physician before boarding the plane the next day. He said no problem; it’s an allergy. This is how I set off for Bangladesh. But after going to the country, the rash increased all over my body, and I started feeling a slight fever. On the same day, I saw a doctor at Burden Hospital in Dhaka. The doctor said there was an allergy problem. Then he gave me some medicine, but the treatment did not work. Fever and rash continued to increase.
On the second day of the country, I went to my father’s house in Narsingdi to take care of myself. After going there, my body started itching with fever and rash. The doctor was shown again. This time the doctor also mentioned allergy and gave two injections to my body. After taking the injection, the whole body started shaking terribly. At the same time, I was almost mad at the care of my family people. My sister-in-law set me on the roof in the midday sun. She applied neem leaves (AZADIRACHTA INDICA) and turmeric paste on my whole body and kept me in the sun for about three hours. According to her, it will reduce body rashes and itching. Meanwhile, I was looking at the building around the house if anyone saw my half-naked body covered with turmeric and neem leaves paste. It was a strange afternoon passed that day.
At the suggestion of my sister, who lives in America, my aunt tied my hands and feet with tree twig and some type of leaves to treat my body. She said it would reduce rash, fever, itching. Then she gave air to the body with the leaves of neem twig all night. After reciting prayers, she also planned to call Kabiraj, who practiced Ayurveda treatment without clinical medicine and supernatural belief! I agreed because faith will weaken at the juncture of life and death, very normal. Whether treatment was good or a fake idea, I was willing to eat cockroaches even then because my concern was to reduce the body’s pain.
It was the 19th of February, the third day in Bangladesh. The Prothom-Alo officials invited me to have lunch with them. I appeared at Prothom Alo office on time, but I still had a fever and rash. I did not let anyone understand what was going on. I got acquainted with the staff of the Prothom Alo office after lunch and visited the office. Then I went back to my relative’s house.
That night, along with fever, rash, itching, severe pain in the joints and muscles of the body started. The fever began to rise. The rash started to rise like a puff on the body. I realized something was happening in my body.
I have never felt such a feeling in my body before. The few days I was in the country, I stayed under the mosquito net day and night. I used a face mask. I don’t know with what material the covers were made of. However, I did not feel comfortable wearing the masks bought from the pharmacy. Probably because of my extended stay in a foreign country, certain things in my homeland started to look strange after a while. When I go to Bangladesh, even if I eat traditional foods, I have a stomach ache.
However, my physical condition was not expected that day. And the doctors and treatment there, did not seem appropriate to me. So I quickly changed the ticket with an extra 575 dollars fine and left the country. I came back to New York the next day.
That day was February 21. The day I was supposed to be at the book fair in Bangladesh, I moved to New York. I was admitted directly from JFK Airport to New York-Presbyterian Queens Hospital. After seven days of treatment, there was no improvement. I was sent home with 20 milligrams of prednisone. My condition was getting worse! After three days, I was admitted to North Shore Hospital on Long Island again. It is well known for being the wealthiest celebrities hospital.
I was being tested for a variety of serious illnesses, including chronic pain and bone marrow leukemia. After seventeen days in North Shore, I was diagnosed with a life-threatening autoimmune disease called ‘Adult Onset Still’s Disease.’
Adult-onset still’s disease is rare inflammatory arthritis characterized by fever, rash, and joint pain. Some people have only one episode of this disease. In many cases, the condition persists, or the condition recurs.
The effects of this inflammation destroy the joints, especially the wrist-hand joints. This disease can ruin any organ of the body at any time. The treatment of this disease includes prednisone (steroid) which helps in controlling inflammation.
But I do not know how this disease came to my body. Even doctors do not know. However, some doctors believed that my immune system was too active and clean and that I did not have the necessary bacteria in my body to fight off the other virus. And that’s why immunity has attacked its own body.
Yes. My immune system was very, very strong. I chose healthy food. Junk food was off my menu. I was a gym member at Lucille Roberts in Flushing, Queens, for nine long years. I was on an organic diet for two years, and before I was diagnosed with Still’s Disease, I was being treated in cash under the care of a holistic doctor in Westchester for my herniated disc and spinal cord pain. I had to take many supplements for treatment. I don’t know if this is also a reason to get this disease.
After seventeen days of treatment at North Shore Hospital, the fever and rash subsided completely. Then I came back home with pain in my body. I couldn’t walk because of joint pain. So, a walker had to be used. I was given 70mg of steroids daily to control my still’s disease. I continued to receive treatment every week under the supervision of a rheumatologist at the hospital. But my body swelled deadly, and my weight began to increase.
That day was June 16th, 2019. The book fair was held at the PS 69 auditorium at 77th Street and 37th Avenue in Jackson Heights, Queens. Many New York journalists, writers, columnists, poets, literary figures, and dignitaries gathered there. It was an addition to the ‘Best Bangla Book’ award published by immigrant writers. The prize money was 500. On that day, I also appeared in the traditional Bengali sari with my weakened body. I was holding my first novel, ‘Binu,’ in my hand. Everyone knew that I went to Bangladesh to unwrap the book about four months ago and fell ill. They were pleased to see me. I also felt happy to get together with them.
While I was being treated for Still’s Disease at North Shore Hospital, many writers, journalists, and editors of Prothom Alo North America came to see me. So it can be said that these people also became special people for me.
Everyone was looking at me and saying I was getting better. I thought, yes! I’m recovering. But did anyone know they would have to hear something more frightening upfront? Or something I thought to myself?
Since taking steroids for a long time was harmful to the body’s bones, the rheumatologist applied a daily injection called Anakinra (Kineret) to my body to reduce the steroid dose. The nurse came to my house and trained me on how to inject.
My doctor said that this injection has a slight chance of getting cancer, but it is very rare. I told her I was scared. Why am I taking that horrible injection?’
She said, ‘There is no other way to control your still’s disease.’
I trusted my doctor and started injecting it under my skin. After taking it every day for two weeks, my body began to feel very tired. My eyes, urine, skin of the body all turned yellow. I couldn’t eat anything. Everything I ate made me vomit. As the symptoms were not good, I went to the rheumatologist for a blood test n the third week of June 26th.
My rheumatologist is Dr. Katzap. She had her clinic in Great-neck, 865 building, Northern Boulevard.
I spent about one week with impossible fatigue. But my doctor was not giving any report. I kept calling and texting, but I was not getting any response from the doctor about the lab report.
Finally, on July 2, around 8:30 pm, my rheumatologist, Katzap, called me and told me that I had to go to North Shore Hospital emergency department immediately.
I wanted to know why? She did not elaborate. She just said, come to the emergency now.
I went to the hospital at 10 pm. They took me from the emergency department to a separate room. I had no idea what was going to happen. An IV was applied to my body, and blood was taken in a tube several times. Then I fell to sleep.
The following day was very nice. The light of the scorching sun shone through the glass fuel of the North Shore. The sky was clear. The leaves of an unnamed tree swayed in the gentle breeze outside the fireplace. Research short videos of all the famous doctors of America were playing on the giant TV screen hanging on the front wall of the bed. The nurse came and gave me breakfast. American hospital meals are not bad. Very healthy. However, I can not enjoy these foods. The smell of half-boiled fish and meat without Bengali cooking spices makes me feel discomfort.
After I finished my breakfast, a doctor’s team visited me. I was typing on my mobile to serve the latest news on the Prothom Alo North America page. Yet, I had no idea that something terrible was waiting for me upfront.
Are we ready for everything that happens in life? Or can we ignore it even if something unexpected happens? We can’t. There is so much beyond our incredible imagination.
The team of doctors wanted to know how I was feeling.
I said I was okay. One of the chief doctors came to the side of my bed and held my hand. The doctor’s hands are usually confident, but the doctor’s hand on that day was giving me discomfort. I said,
‘Is everything alright?’
He said, ‘Listen. You are an adult. I need to talk to you openly. ‘
I said again, ‘Is everything alright?’
He said, ‘I am very sorry to say, your liver is failing. You have a liver failure!’
Even at that time, I didn’t know that my liver had already lost its full function ionality.
I said, ‘What are you saying? How? My blood was also tested two weeks ago. There was no problem with the liver!’
The doctor said, ‘It probably happened in a week.’
I grabbed his hand with surprised eyes. I couldn’t breathe, but I was able to ask him, ‘will I die?’
The doctor clasped his hand tightly and said, ‘We will try our best.’