Why Was I Spared?

I often wonder after the brush with cancer, why I have been spared when hundreds die everyday through illness, trauma and hate.

What can one person do?

What does the life of a person mean and how it is interwoven into the threads of others? The gap it leaves behind when no more.

Where do I go from here?

As I recover, an acute sense of responsibility nudges me, “Why were you spared?”

What is it of worth that you offer today to yourself and others?

I wonder, I think…

– Uzma Yunus, Facebook post, Nov 16, 2015

[To read my approach to publishing her Uzma’s unpublished work and her posts on social medial, read this. Featured photo by Aleksandr Eremin on Unsplash]

Now I Wait…

He has spoken his final words

With grace, calm and poise

And now I wait

For his act to be followed

His shoes to be filled

Now I wait

Wait For words, may be just 140

Spoken with integrity

Just as strong

As coherent

As Presidential

Less dramatic

Less provocative

Words that build a nation

Not a wall

Words that tear the divide

Not people at all

Now I wait

For us to endure

What we have chosen

What we thought we want

For what we were told we needed

Wait for it to unfold

Layer by layer

Cautiously hopeful

But worried and fearful

Can We?

A long sigh

A deep pause

May be

Hope for Change

More grace

More kindness

More respect

I hope He can

I hope We can

I hope We can

Even if He can’t.

[Commentary by Dheeraj Raina: Uzma wrote this poem on Facebook on January 10 ,2017. It was her way of coping with the impending transition from the Obama presidency to the Trump presidency. I remember she had a lot of anxiety about what kind of president would be. As soon as Trump became president Uzma joined the ACLU — American Civil Liberties Union.

The title “Now I Wait…” is Uzma’s choice. I have not words are hers without any edits. To read my approach to her unpublished work and her writings on Facebook, read this.]

Gratitude In The Shadow Of A Momentous Loss

Cancer took my wife, Uzma this year. Many dreams died with her. Her solo aspirations and our shared ones. All went, poof! Come to think of it, these dreams died in 2017. By then, it was clear she was not going to be one of the lucky ones who get to live many years with stage 4 breast cancer. But this year, those dreams were finally laid to rest.

When some dreams die, years later, one looks back and says, “I am grateful that didn’t work out. Because of that not working out this more amazing thing, that was better for me, in the long run, worked out.” I don’t believe such a retrospective reappraisal of a loss of a loved one and shared dreams is possible. Even if it were possible, I don’t think anyone would fault me for not experiencing this form of gratitude quite yet.

I am not mad at the fates for taking Uzma away. Uzma never once asked, at least aloud, that I can recall, “Why me?” She once said, “About 150,000 people die every day around the world; what not me?” Of those 150,000, about one third die young. Just because I am not mad at destiny doesn’t mean I have to be grateful for it.

Yet, Thanksgiving is here. It is an annual reminder to exercise gratitude, one of the key acts that can help one live a better life.  So, this Thanksgiving, what do I feel grateful for?

First of all, destiny, luck, fate, I take it back. I am indeed grateful to you for having brought us — Uzma and me — together. Without you, there is no way that a person belonging to the Kashmiri Pandit community, a community ethnically cleansed out of their homeland by Pakistan-sponsored and trained terrorists, would ever have met an actual person from Pakistan. Without you, we would not have been in love. Our marriage wouldn’t be a thing. Our kids, us in the house we are in, none of this would exist. Yes, like the gods in some greek myth, you extracted a heavy price for giving us all that. But it allowed for Uzma to become part of me. For that, I am grateful.

Second, I am grateful to Uzma. I know you can no longer hear me. You loved me back. You loved me even for my quirks, not despite them. All the times we spent in each other’s arms, in moments of joy and sorrow, and moments of just being, those are all memories I am thankful for. I am grateful for the two amazing kids we have together. I am grateful for your voice in my head that will forever be there telling me things.

You used to help me appear as having a better sense of style and fashion than comes naturally to me. And how to improve a particular presentation. To take care of myself emotionally and physically. And about the importance of social niceties  — they are not there to make life difficult; they are there to help strangers become friends. Your love and voice will always be with me. For that, I am grateful.

Third, I am grateful for my amazing parents and extended family. In the 1990s, when Uzma and I met, we were still reeling from the ethnic cleansing of our community from our homeland in that same decade. Naturally, all of you had reservations about Uzma and me. Yet, not one of you rejected me. And you welcomed Uzma into the family with love. Uzma used to say, “Your family is too filmy!”

This was a reference to those idolized families depicted in many feel-good Bollywood movies. Of course, over the years, she would learn that we have our own dysfunctions and flaws like all ordinary families. However, her initial impression speaks to how welcome she felt. You were by our side when she joined us, and you with us when she left. And both times and many times in between with so much love. For that, I am grateful.

Fourth, I am grateful for those in Uzma’s extended family who accepted us together without judgment. This was as hard, if not harder, for them as it was for my family. Their religion explicitly forbade a union like ours, where each half of the couple kept their own faith. And of course, they are as affected by the geopolitics of South Asia as my family is. Yet, there were those among you who accept us and love us without judgment. When her closest family members shunned her, you are the ones who sustained her more than you can imagine. For that, I am grateful.

Fifth, I am grateful for all those friends Uzma brought into our life together. Uzma had a knack for turning strangers into friends. Recently I saw a book for sale called “Superattractor.” I don’t know what that book is about, but that title reminded me of Uzma. She was a superattactor. Students from college, coworkers, neighbors, people she met in classes she took to develop her hobbies, folks she connected with on facebook and in all other walks of life, became her friends. She was also a “superkeeper”. She kept friends for life. Many of those friends are in our lives even after Uzma is gone. If friends are family you choose, thank you for choosing us. It can’t be easy without the superattractor around. For that, I am grateful.

Sixth, I am grateful for my employer and my colleagues at work. My work-family is incredibly supportive. I never had to think twice about taking time off to be with Uzma for her planned appointments or unplanned procedures. Work is where we spend at least one-third of our life. My colleagues, work-friends and my bosses who were just there for me. There’s just no other way to describe it. For that, I am grateful.

Seventh, I am grateful for all the readers of Uzma’s blog and book who write to tell me how her book helps them cope with their own cancer journey or loss journey. It shows me why she really wanted to get the book out there. That you all take time to let me know of its impact is amazing. For that, I am grateful.

Finally, I am grateful for the United States of America. Despite all its flaws, America remains one of the best places to live in the world. It has some of the most big-hearted and open-minded people. Yes, I don’t like the current dispensation and what it stands for. But it is our political representative. But it does not represent everything that the majority of Americans are. I am thankful to those Americans. You gave me a chance to live and build a life here. Without you, Uzma and I would never have met. Without you, we would not have this best among all family celebrations — Thanksgiving, the only holiday that celebrates gratitude without any obligated religious rituals.

And while we should all be practicing gratitude year-round, Thanksgiving is this — an annual reminder to focus the mind on this essential activity.

For all of it, I am grateful.

(Featured image by j_lloa at Pixabay)

Beyond Chocolate And Roses

I vomit again. I wished it would stop but it didn’t and I knew it wouldn’t. As awful as it is to puke endlessly, it is accompanied by a temporary sense of relief, a few moments of the storm having passed. The minutes before, miserably uncomfortable and that nauseating feeling painfully clear, even through the post-chemotherapy drug fog.

And then, I retch and vomit again.

He stands there patiently. I am sitting in the bed, kids are fast asleep and its 10:30 at night.

I expect the vomiting to go on for another few hours, for that has been the routine for the last two cycles of my chemotherapy.

Usually, 2:00 am is when my stomach surrenders and my brain is knocked out by the Ativan and Benadryl, two wonderfully sedating drugs.

I throw up in a plastic green bowl that I had bought at Wal-Mart to wash produce in when we were newly married. It had been long replaced by the shiny Wolfgang PuckTM mixing bowl set. It mostly wandered now in the back of the kitchen cabinet. Today, however, it was the vomiting receptacle. I hand the bowl to him. He doesn’t make a face or pucker his nose. He now has seen my lunch twice. First time in the carryout containers, a soup and a sandwich from the Corner Bakery. I am not a big fan of cafeteria food and today just like old times, he brought me some decent non-hospital food. Yes, he is just that kind of a husband.

He hands me the glass of water which I slowly sip, swish it in my mouth and spit some more in the bowl he is holding. The rinse does nothing for the horrible sour taste in my mouth and I am too exhausted to go to the bathroom to brush my teeth. He rubs my back and proceeds to drain the rebellion from my stomach into the toilet bowl. I rest my head against the pillow and close my eyes.

I hear him flush the toilet and then water flowing from the tap. Those sounds seem awfully loud in the middle of the night as sleep and nausea battle it out between each other in my cancer ridden body. He brings the bowl back to me which has been rinsed clean.

He sits in the recliner by me and dozes off, not realizing that I am nauseated again.

It has been a long day for both of us.

Nursing me through 16 cycles of chemotherapy is not what I believe he had ever imagined doing when he married me. No one ever imagines their spouse being diagnosed with Stage 3 cancer and having to live that mutual nightmare. Being physicians, we both understood what the disease of cancer is, but we had little clue as to what actually happens when cancer knocks on your own door.

It was the summer of 2013. Our family was busy with summer routines. Kids were in camps. There were outdoor concerts and swimming pool visits followed by cook outs. Life was flowing uninterrupted as usual.

But then, one day in July that flow was diverted through to a long road of breast cancer and its treatments. The appointments, the scans, and the visits, all an anxious blur with only one clear memory “cancer”. He was there, to drive me to every appointment and second opinion, which was almost daily. He was there outside every waiting room.

I remember leaving the MRI suite in tears after my first breast MRI. I said to him as a clenched him in a hug “I am never going back in that thing again”

He said, “Okay, you won’t.”

He was there to lie to me which is what I needed to hear.

Love is reassurance at the right time in the right words.

He was there talking to doctors and asking questions. He was there when the phone started ringing off the hook as the news broke to friends and family. I cannot note and recall specifics, but remember this much that all moments when I needed him he was there.

Love is being there through stressful time with unconditional support.

Not just present but embedded with me in the trenches through every scary moment and worrying test result. Love is standing at the door of the bathroom, and then wiping my bottom, one day after childbirth. It’s being there to comfort and console and to hold.

The household was in disarray as time passed after surgery, the first phase of my treatment, and I got weaker and sicker. I had seen what happens when I am sick for two days with a cold and fever. Now it was months of treatment and disability. I worried. I worried about how much he could endure and compensate for my absence. But he slid very comfortably into the role of both mom and dad.

When does a woman ever marry a man thinking, “Will he be a good mom?”

I know that he is and had been a wonderful father but his substitute motherhood was even better. The hugs and the cuddles and nighttime baths and routines all remained uninterrupted. The children were being sheltered from the trauma.

He was there for me and them.

As strong as he was through all of it, he did fall apart once.

I did too. That one trying evening that haunts me to date.

I was going through different diagnostic scans to determine the extent of the cancer. It was confirmed to be in the breast and the lymph nodes but the workup was needed to know if was flourishing elsewhere in my body.

The day before I had had the CT scan of my abdomen.

And then, the phone rang that afternoon.

There was a “spot” on the liver. And thus, a few mm of opacity broke our spirits together. The children were in the other room and we were both sitting and holding each other and sobbing. He didn’t say anything and neither did I.

We didn’t need to.

Love can be quiet without words, when the hearts feel the story in unison.

The MRI later proved to the liver to be free of any cancer but that day remains crystallized in my memory with the heartbreak that it brought and how the two of us clung to each other trying to salvage what was dear to us.

My chemotherapy had been complicated by a severe allergy to the drug adriamycin. So it was administered extra slowly over eight hours while others get it as a fifteen-minute push in their veins. Each of the first four cycles lasted about eight hours. He would sit with me all day in the chemo suite, attending meetings over the phone and working on his laptop as I got the cancer treatment. Sometimes when I would fall asleep he would go out in the hall or in the car in the dead of the winter sit with the engine running so he wouldn’t wake me up with noise.

He was there sitting with me for all 16 cycles. He and his laptop and iPhone and work but he was there. How many days could he take off from a new job he started? A new position offered fortunately during the first month of my diagnosis. The perk was the ability to work from home and he readily quit his old position so he could be around more.

So he was there to find my socks when my feet felt cold. There to bring me my favorite lunch. There to watch kids. There to tell me jokes that he is good at memorizing and there with his loud, signature laugh.

The chemo drug Taxol, of which I received 12 cycles wasn’t kind to me either. Among many other side effects, it would make my hands itch for hours and nothing would help. I would grab a wet towel and rub my hands miserably. It was not possible to do anything or to distract myself. Then came dinner time and I was immensely hungry. I don’t remember what I ate; just that he fed me because I couldn’t myself.

He fed the two kids and his wife. All three of us. A wife with breast cancer, in chemotherapy and two kids, two and six.

He used to bring me flowers when we were first dating, write romantic cards, bring me chocolate, all of the good boyfriend things that are expected when a relationship is young.

12 years of marriage changes things. People, however, don’t change. Their expression of their affection does change. Their appreciation of affection also changes.

We changed too. He still brought me flowers, just not as often. But he never forgot my birthday or our anniversary. I always got roses on Valentine’s and a breakfast of my choice on Mother’s Day. But life was busy and romance remained overpowered by obligation and duties.

Lovers evolve with time.

We did too. Career, family, moves, launching our practice, caregiving for family, financial responsibilities were all part of that evolution.

Love grows deeper and stronger but less reactive. It is patient and quiet at times. Sometimes it’s not even noticeable but it’s there.

It can be felt in the sound of the flush as your vomitus drains through the pipes.

It’s felt in the food that is fed to you even though it was not the finest steak at the best restaurant.

It’s felt in the embrace as you scream in labor.

It’s felt in the foot massage during contractions.

It’s felt in letting you sleep in when you are tired.

Love isn’t just chocolate and roses. They just make it better. Love is keeping the promise of “in sickness and in health”.

Not everyone gets to test those vows. Life brought that question to our home. He answered it.

“I do “he said, to living with fear of his wife having stage 3 breast cancer and holding it together.

“I do “he said, to being there for five months of chemotherapy.

“I do” he said to a tired, fatigued wife.

“I do” to whatever life brings at our door.

“I do” to the possibility of being a single dad.

The vows and the promise that he honored relentlessly for the last two and half years.

That is what a perfect valentine is.

It is beyond the roses and chocolates and the fancy dinners.

I don’t know if I will get roses this year or a nicely wrapped red-colored box with ribbons or maybe a card. What I do know though is that when nausea takes over, ever again, he will be standing next to me holding a glass of water and a bowl. And I think that expression of love, gross as it sounds, is prettier than anything else that can be ever purchased.

[Featured photo by Ricardo Gomez Angel on Unsplash]