In many ways, that sentence still feels impossible to write.
A couple of months before her death from stage 4 breast cancer, Uzma wrote and self-published her memoir, Left Boob Gone Rogue. It was her voice on the page: honest, funny, sharp, brave, and deeply human.
After she died, life changed all at once. I became a single parent to our two children, who were still very young. My job was clear, and it was not book promotion. It was raising them, loving them, and helping them find their way through a loss none of us had wanted.
So for years, while the book remained out in the world, I did very little to promote it beyond an occasional mention on social media around its publication anniversary.
But sometimes a voice waits patiently for its next opening.
Recently, I had the opportunity to speak about Uzma’s book in an interview on a small local television channel. That experience led to another opportunity: Left Boob Gone Rogue has now been accepted for display and sale at the Local Author Meet & Greet at Glenview Public Library on Tuesday, April 21, from 7:00 to 8:00 pm.
I am grateful for that. I am also grateful to Yvonne Wolf, whose encouragement helped make both opportunities possible.
Uzma is not here to sit behind a table and talk with readers herself. I will be there in her place, not as the author, but as the husband of an author whose words still matter.
The book now has 4.9 stars from 251 Amazon reviews, which tells me that even after all these years, her story continues to reach people.
If you are local, I would be honored if you stopped by.
Glenview Public Library 1930 Glenview Road, Glenview, IL 60026
Last year, a 7-minute long speech about what I learned from how Uzma lived her final took me to the semifinals of the Toastmasters World Championship of Public Speaking.
When Yvonne Wolf, a fellow Toastmaster, heard that Uzma had a book out, she wondered if I would be willing to talk about it on her Local Access TV show.
Here’s that interview, posted where it belongs – on Uzma’s blog.
Thank you, Yvonne Wolf, for this opportunity to talk about Uzma’s work and life. You and your team did an amazing job of making me comfortable. I can’t believe how fidgety my feet were in the interview despite the calm I felt. That’s totally on me.
Readers, I look forward to hearing your comments on whether I did justice to Uzma and her book, and how I could have done better…just ignore the fidgety feet.
As another anniversary of Uzma’s death rolls around, I expect to get texts and messages from people who loved her saying some variant of, “Thinking about you on this difficult day.”
That they care to remember shows me how much they still love her and miss her.
There are many in that group whom I have never met or spoken to. And I hear from most of them only at this time of the year. That they still reach out to me shows how much they care about what — and who — mattered to Uzma.
If that’s not love, I don’t know what is. And I genuinely look forward to those messages.
I have to admit, though, that Uzma’s anniversary is no longer particularly hard for us. It’s not because we love her less than the friends and family who mark this day. It’s because her absence is not something that shows up only once a year.
Early on, her loss felt like an earthquake. Some aftershocks hit us out of the blue. Others, we had time to brace for — like her anniversary, the first few years. Still, every one of them would rattle us to our cores.
Over time, Uzma’s absence stopped shaking us. Because it went from recurring tremors to being more like gravity.
Gravity is a constant. Unremarkable. Essential. We don’t wake up thinking about it, but every step we take is shaped by it.
Uzma’s absence isn’t something we visit on her anniversary. It’s a unique thread woven into the fabric of our lives. That fabric wouldn’t exist without her thread.
We don’t think about her on any particular day. And we don’t not think about her on any particular day either. It’s a strange experience — one that still leaves me at a loss for words.
And like gravity, her absence shows up in ordinary ways.
In the way we think and feel. In the way we show up for friends. In the kids’ mannerisms and interests. In how I make decisions.
In these seven years, we have made many memories without her.
Millions of mundane ones — changing interests, evolving friendships, small daily routines that quietly build new parts of a life — like an addition to a house. Think also of school events and social events. Pick-ups and drop-offs. Classes considered and chosen. New restaurants dined at, new movies seen, new music heard.
She is also missing from many striking memories. A global pandemic survived. Road trips and vacations enjoyed. Milestones crossed.
Conversations about Uzma come up unexpectedly as we make new memories. But when we remember those new memories themselves, she isn’t in the scenes. Instead, our memory of her is. She isn’t present as a character. But always present as context.
When people text or message to say they’re thinking of us today, I welcome it. I don’t experience it as reopening a wound. I experience it as a reminder of how wide Uzma’s circle still is. And how her life continues to ripple through the lives of all who loved her.
That kind of love is always worth acknowledging. And being grateful for.
The kids and I were at our local swimming pool on a hot summer day a few months ago. The scent of chlorine and sunscreen swirled in the air. My daughter Gauri found some friends and was enjoying splashing around with them. My son Shuja and I sat in the shade of a tree. We started chatting about all sorts of things. Friends, hopes, dreams, summer activities, travel plans…life. At one point, the talk turns to Uzma, his mother, my late wife, and the creator of this blog. I ask him, “When you go over to your friends’ homes and see both their parents, do you ever find yourself wishing that mom was here?”
Uzma had died of metastatic breast cancer over four years ago at that time. While I tried my best to be a good solo parent, I know it’s not the same as growing up in a two-parent home. And two-parent families are the norm among my kids’ closest friends. While my kids are not the jealous type, I have often wondered if they see the glaring difference between their friends’ families and ours and feel something missing.
He didn’t respond immediately, sitting with the question for half a minute. It felt like several minutes. The laughter and splashing of kids in the pool started sounding louder. It all quieted down again as he said, “I don’t want you to take this the wrong way. I miss Mom, but I don’t know how to answer that question.”
“I am listening.”
“So much of our life has happened without mom. It is impossible to imagine what it would be like if she were still alive. Who would I be if she had been with us these last few years? Wouldn’t it depend on whether she was sick the whole time or well?”
That would make a big difference, I thought. I recalled how our life shrank as cancer grew in Uzma’s body. We withdrew our kids from most activities outside school. We socialized less. All our trips became impromptu as we couldn’t really count on being able to stick to any plans.
“I don’t think about her day-to-day. But I often think about her when I am sad,” he continued, “So much has happened that it is even hard to imagine how our life would be if she were to suddenly come alive today and plop right back into our life.”
Life Goes On
When people die, it seems like a cliché to make the observation that ‘life goes on.’ When you’ve built a life with someone, it’s hard to imagine how life could go on without them. It feels profane to even approach that thought. But life goes on, not because of one big thing, but due to millions of little incidents, decisions, and memories.
Our kids have now lived about one-third of their lives – our son, a bit less, and our daughter, a bit more – without their mother. In these five years (over 1800 days!) we have made countless memories without Uzma. Meals, after-school activities, birthday parties, movies, vacations, game nights, conversations, holidays, walks…so many memories. So many decisions. All without Uzma.
At first, whenever faced with any decision about the kids – when they should have a smartphone, for example – I found myself thinking about what she would have said based on our talks. But as time went by, I realized that I was on my own. There were so many decisions about kids that parents don’t talk about ahead of time because we don’t assume one of us will die before facing that decision together. Often, talking aloud with each other brings us to conclusions far from where we begin. Without those talks, one has to figure things out on one’s own and process things with other trusted voices.
Life goes on…but with a twist. When grief suddenly resurfaces, it is raw and biting.
The Bouncing Ball of Grief
A few years ago, a Twitter user shared the bouncing ball analogy of grief. Imagine a box that represents our life. A ball inside that box represents grief. There’s a red button on the inside of one of the box’s walls. Whenever the grief ball touches the red button, it causes immense pain and sadness. In the immediate aftermath of a loss, that ball is enormous, occupying almost the entire box and brushing against the red button at every attempt to move.
In the original analogy, over time, the ball grows smaller. It bounces off the walls of the box of life without hitting the button as frequently as before. But when it does hit the button, the pain and sadness are just as intense as they were in the beginning.
While the analogy resonates with me, I think the ball does not change in size. It only appears smaller because the box grows with all those countless daily moments of living life. Life goes on.
Memory Is Recorded, Then Built
A friend told Uzma, in what was to be her final year, “Make videos of yourself for your kids. Leave little messages for them about your hopes and dreams. Tell them you love them.” Now and again, I wonder how our memories of her would be had she followed that advice.
With the wondrous devices that our smartphones are, it is all too easy to make such videos memorializing oneself for loved ones. Uzma could have created hundreds of videos allowing her to choose how our kids would remember her. But she never made a single one with the explicit goal of helping shape the kids’ memories.
“I want the kids to build their memory of me, not receive frozen memories as inheritance,” she said.
While our memories may begin as mental recordings, they eventually become stories. How we see ourselves and how we want to see ourselves shape the details we remember, misremember, and simply forget. The warm feeling accompanying nostalgia depends on forgetting our past’s bad and sad parts. This selective forgetting is a feature, not a bug, of our mind. As opposable thumbs make our species infinitely adaptable in the physical realm, our tendency to shape our memories makes us versatile in the emotional sphere, allowing us to live well in the present instead of dwelling in the past.
Uzma wanted our kids to be adaptable and resilient. She believed that those videos would get in the way of them being able to shape their memories of Mom. She didn’t want to be a ghostly presence telling them things from a time and emotional space that would no longer exist. And so much about our world changed since she died.
Sometimes acquaintances ask our son, “How’s chess?” He tells them he no longer plays chess. He quit not long after Uzma died. He also quit playing the trombone. But now, he runs for his school. He has board game nights with his old friends. But he has new friends whom Uzma never knew, with whom he does other things that bring him joy. He has Uzma’s knack for cutting to the chase and speaking from his heart.
Our daughter, who has Uzma’s memory for faces and love of art, picked up the trumpet after Uzma died. She, too, has new friends, with whom she has various shared interests. She sings. She plays basketball. She used to be scared of dogs. But she is now the closest to the goldendoodle we welcomed into our family just before COVID. And that dog brings so much joy to our home.
Life expands. Life goes on.
Yet, She Lives
When someone becomes part of your soul, you don’t have to miss them every day to remember them. This is even more so for kids who have lost a parent after having built memories with them. Uzma comes up in conversations in our home about all sorts of things. About foods she used to cook, things she enjoyed, the wisdom she shared, where she worked, how she lived, how she died. Once a year we go online together and make a donation in her name to the local cancer charity where she volunteered.
David Eagleman says in the book Sum: Forty Tales from the Afterlives, “There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.”
This past summer, Iqbal, a wise and affectionate friend, invited us to dinner. As we were about to leave, Iqbal, who also knew Uzma, hugged the three of us and reminded us, “You know, as long as we speak her name, Uzma lives among us. So, let’s speak her name together.” The four of us looked to the sky and roared as loudly as we could without bothering other diners at the restaurant, “Uzma! Uzma! Uzma!”
My wife Uzma died of breast cancer over two years ago. It was stage 4 breast cancer, also known as metastatic breast cancer (MBC), that took her.
According to the latest data from the American Cancer Society, over 280,000 American women will be diagnosed with breast cancer in 2021, and over 43,000 will die from it. Less than 10% of women with breast cancer have MBC at initial diagnosis, but eventually, up to a third of women with early-stage breast cancer will have MBC. 100% of deaths due to breast cancer are due to MBC. And almost all women with MBC will die of MBC.
Normally functioning cells in our body have two key features: First, they don’t keep reproducing (make copies of themselves) indefinitely. Second, they stick to their own kind. Liver cells stick to the liver. Lung cells remain in the lung. Breast cells stay in the breast. And so on.
Cancer happens when a genetic glitch in a cell removes the restraint on reproduction. One cell begins reproducing without paying any heed to the need for more clones of itself — reproducing without restriction results in the growth of a tumor. Cancer becomes stage 4 when another genetic glitch causes cancer cells to lose the stickiness to their own kind. It’s as if they have become adventurous, straying far and away from their native organs. Cells from the breast, for instance, think nothing of making a home in the liver. Cells from the kidney may decide to dwell in the lungs.
Most cancer research aims to stop cells from reproducing without limits. Relatively little goes towards preventing cells from losing their stickiness. Most stage 4 cancer patients, including MBC patients, receive one trial after another of chemotherapy drugs developed to prevent tumors from growing in size.
Less than 5% of the national research funding goes to MBC. Let that sink in. Almost one-third of women with early-stage breast cancer go on to have MBC. All breast cancer deaths are due to MBC. But less than 5% of research funding goes to figuring out how to stop cancer from spreading and from killing our mothers, daughters, sisters, and wives.
Awareness campaigns are everywhere during October — Breast Cancer Awareness Month. Pink ribbons. Pink banners. Pink everything. The message everywhere? “Do your mammograms!”
The push for mammograms never cautions that one in five screening mammograms are false negatives, i.e., they fail to detect breast cancer. Younger women and those with dense breasts are at higher risk of false-negative mammograms. Uzma was one of those women. She had several annual negative mammograms, the last one of which was about three weeks before she found a cancerous lymph node in her armpit.
The other message that isn’t highlighted during Pinktober is that almost one-third of women whose cancer is detected by mammograms will go on to have stage 4 breast cancer. And we don’t know how to stop that.
As we open our wallets this month to give to charities that fight breast cancer, let’s give some thought to whether our money flows consistent with our values and preferences. Different organizations see their missions differently and spend accordingly. Before donating, it is not a bad idea to check out an overview of the charity at Charity Navigator. I compiled the tables below from data readily available on that website.
Financial Performance Metrics of Three Breast Cancer Charities*
Metavivor
Breast Cancer
Research Foundation
(BCRF)
Komen
Charity Navigator Score
91.16
89.56
82.42
Program Expenses
96.3%
87.5%
77.4%
Administrative Expenses
3.2%
3.3%
9.9%
Fundraising Expenses
0.3%
9%
12.5%
Fundraising Efficiency
(money spent to raise each dollar)
$0.00
$0.09
$0.14
Program Expenses Growth
(year-over-year growth of amount spent on programs)
Metavivor, a relatively new charity, is not as big as the other two in the tables above. However, its program spending is growing the most rapidly. And its spending is exclusively focused on MBC. Metavivor believes that 30% of funds given to breast cancer organizations should be dedicated to MBC. Remarkably, of the three charities, it spends the least amount of money to raise more money — less than a penny to raise every dollar. BCRF, while not exclusively focused on MBC, spends 100% of its program funds on research. Metavivor and BCRF have similar administrative expenses as a percentage of their budgets. And it’s quite a bit lower than Komen. In 2017, Uzma modeled for an Ulta Beauty campaign to raise money for BCRF.
Komen, which needs no introduction, is a fundraising juggernaut. Of the three charities above, it spends the highest proportion of its budget on administration. It also spends a lot of money to raise more money — 14 cents to raise every dollar. Fundraising expenses are 12.5% of its total spending; they are 9% and 0% of expenditures at BCRF and Metavivor, respectively. As an absolute number and a percentage of its budget, Komen spends the least on research of the three organizations. Charity Navigator gives a Charity Navigator Score to all charities based on a combination of financial and accountability & transparency measures. Komen’s score is the lowest of the three charities.
Is one of these three charities more worthy of our money than the others? That’s for each of us to decide based on what is most important to us. I think of the following questions when donating to breast cancer-focused charities:
Is it more important to me that my donation goes to research?
Do I want more of my hard-earned cash to go towards making more women aware of the importance of screening?
Or do I prefer that more of it go to research?
How much of it do I want to go research focused on stage 4?
Do I care how much our cash a charity uses for administration and fundraising?
The answers to each of these questions may well be different for each of us. We don’t need to limit ourselves to the three charities in the table above. A search on Charity Navigator will reveal other charities specific to any other cause dear to any of us. All we need to do is to review that information and give our money to the charities that most match our values and preferences.
It has been just over two and a half years since Uzma died. It was twenty years ago today that we promised to be together forever.
Life doesn’t stop when some we love profoundly dies.
Other loved ones’ love needs reciprocating. The constant chorus of bills, work, and chores needs attending. Children’s camps and experiences need planning, arranging, and scheduling. Slowly but surely, life grows around grief.
Grief doesn’t diminish or vanish. It just starts to look smaller compared to the experiences added to our life since the loss. Just as building an addition to the house makes the other rooms a smaller portion of the grown house without shrinking them in reality.
We start taking doing things again for fun. We start taking vacations. And then, out of the blue, something brings the memories flooding in. It could be a visit to a beach we visited together ages ago. Or a walk past a hotel where one stayed in another life. Or a friend’s wife getting admitted to hospice. The kids’ birthdays do it. And so do anniversaries — definitely, the marriage anniversary.
Once the memories overflow the banks of the daily stuff, they take a while to recede. As they recede, we are left longing for another memory-flood.
“This will doom my daughter,” my wife Uzma said while we were waiting for the results of her breast biopsy in 2013.
As expected, the news of Uzma’s breast cancer diagnosis in 2013 brought fear, anxiety, and sadness of unprecedented proportions in our life. What will happen to me? What if the surgery doesn’t take out everything? Will chemotherapy work? How will I survive chemotherapy? How will we manage all this with our young kids? These were some of the questions I remember Uzma asking back then. Almost anyone with a heart can imagine that someone with any cancer diagnosis would ask these questions.
But worrying that early about our daughter and her risk of breast cancer is something that only mothers and those who can learn to listen to mothers can understand. This concern was a recurrent visitor to Uzma and my discussions.
She knew it was no fault of hers that she got breast cancer. When determining a woman’s breast cancer risk, doctors ask, “Do you have a first-degree relative who was ever diagnosed with breast cancer?” And our daughter’s answer will always have to be an unequivocal yes. Uzma never could get this thought out of her head.
It wasn’t something she dwelled on a lot because there was nothing she could do about it. It was the hand that fate had dealt mom and daughter.
There was also a part of Uzma that thought there was a silver lining to her diagnosis. Two of her aunts had breast cancer. But because her mother did not, this family history did not matter in determining Uzma’s risk of breast cancer. Uzma believed that had her mother also had this scourge, her own dense breasts might have led to more aggressive investigations. And it might have made the difference between being diagnosed at Stage 2 vs. Stage 3. That would have meant a difference a prognosis. Uzma believed that her cancer will give our daughter a better chance at an earlier diagnosis.
There was a third reason that Uzma learned not to dwell too much on our daughter’s risk. It was the knowledge that genes aren’t everything. Which genes influence changes in our bodies at which times in our lives are affected by various environmental factors. The the quality of our childhood, our diet, our physical activity, and stress are some of the things that are known to affect which genes get turned on and hen. While genetics has come a long way in the last couple of decades, we still don’t know how to turn on and turn off cancer genes in a way that will make a difference in people’s lives. Even though our daughter’s risk of breast cancer will always be greater than a person without a family history, as long as we help our daughter grow to be a psychologically resilient, physically active person who eats healthy, her risk could be lowered.
[A word about the featured photo: This is a print that Uzma purchased about ten years ago, and it hangs prominently in our home in a large frame. It depicts Lord Krishna and his mother, Yashoda. Yashoda was not his biological mother but raised him as her own. Hindu children grow up hearing stories of her love for Krishna, who would have been a handful for any mother due to his mischief and daredevilry. Uzma was not a Hindu, but the image touched her as something that beautifully captures the bond between mother and child. When he was about two years old, our son believed that this image was of Uzma and him. Later, when our daughter was about two years old, she thought that it was Uzma and her. They both outgrew that belief, but there’s something in this image that captures and conveys maternal affection even to a child.]
Most people are not surprised to learn that the kids and I are in counseling since their mother, my wife Uzma, died almost a year and a half ago. Some people are, however, surprised that a psychiatrist would need counseling.
Will we need counseling? I wrestled with this question for a few months before Uzma died. When Uzma’s cancer came back as stage 4, both of us knew we were unlikely to grow old together. The diagnosis of stage 4 cancer instantaneously brings the end of life in one’s field of vision. If it happens after a period of remission, one stops being a survivor and becomes an impending mortality statistic. Each passing day, each failed treatment moves death from the periphery to a more central position in one’s mind. It casts an ominous shadow on every part of one’s life.
Many of those who love a person with stage 4 cancer start experiencing elements of grief long before that person breathes her last. Beginning to mourn for a near-certain loss before the loss happens is called anticipatory grief. I am not sure that we should continue calling such sorrow “anticipatory.” Often a death from cancer — and some other debilitating chronic illnesses — is preceded by a parade of losses, some of which I wrote about in Cost Of Cancer:
…Travel to and from the clinic where the patient receives treatment adds to the burden of illness. There are lost wages – for the patient, and also for any family member(s) or friends(s) who accompany her to various treatments. Families often have to struggle to find time to plan and cook meals. They end up eating more frozen or restaurant meals, which are less healthy and more expensive than home-cooked meals. Since Stage 4 patients will be in treatment for the rest of their lives, there’s no end to all this.
Stage 4 cancer didn’t just spread through Uzma’s liver. It spread throughout her life, our life. We have supportive friends and family, but it was as if cancer threw a noose around our life and slowly but steadily kept tightening it. Our social and professional life constricted during treatment…
The longer a person lives with stage 4 cancer, the more those short-of-death losses keep piling on. I have come to believe that to some degree, what we call “anticipatory” grief, in reality, is the mourning for losses that have already begun — injuries that are warning of an even more devastating loss.
What will I learn from a counselor or therapist that I don’t already know? I asked myself this question when thinking of counseling. Indeed, I have helped bereaved individuals in my work. I probably know at least as much about overcoming loss and grief as most mental health professionals. Nevertheless, in the circumstances like these, it’s not the knowledge that is faulty, but its application. The heart makes it difficult for the head to remain objective when one has to treat oneself, or one’s loved ones. As Sir William Osler, one of the wisest physicians who ever lived said:
A physician who treats himself has a fool for a patient.
Our kids and I were about to experience two significant losses — my wife and their mother. Though some psychologists rate the death of a spouse as the most stressful event a person can experience, I find it difficult to imagine any loss harder a child losing a parent. It has the potential to permanently derail the road to the development of a stable sense of self, which is essential for both happiness and success in life.
Listen to Stephen Colbert and Anderson Cooper talk about the effect of losing their fathers at ten years old. (If you play and don’t skip ahead the video will automatically stop playing at 4:07). They describe the impact of the loss of a parent in ways similar to how I have heard patients describe it:
Transcript: :
And you’ve spoken very publicly about what you experienced as a kid. And I just, a lot of it I didn’t know. I think a lot of people don’t know. So if you don’t mind, I wanted to talk to you a little about it and sort of how it has shaped who you are now?
Your dad was killed in a plane crash. You were 10 years old along with your two brothers, Peter and Paul. And they were the closest brothers to you in age.
Stephen Colbert: Right, it goes Jimmy, Eddie, Mary, Billy and Margo, Tommy, Jay, Lulu, Paul, Peter, Steven.
Anderson Cooper: 11 are there?
Colbert: I’m the youngest of 11.
Cooper: All right. My dad died when I was 10, too. It is such a horrible age to lose a father. I can’t imagine losing both my brothers at the same time as well. For me, losing my dad then, it changed the trajectory in my life.
I’m a different person than I feel like I was meant to be. And I feel like there are times I, yes, I’m, I feel like I remember when I was 10, I felt like I marked time. To this day I mark time between while my dad was alive and after. It is like the New Year zero. It’s like when Pol Pot took over Cambodia[empahsis mine].
Colbert: Without a doubt. Without a doubt. Yes. There’s another guy. There is another Steve. There is a Steve Colbert there is that kid before my father and brothers died. And it is kind of difficult. I have fairly vivid memories from right after they died to the present. It’s continuous and contiguous you know like it is all connected. There is a big break in the cable of my memory at their death. Everything before that has an odd ghostly–
Cooper: Like shards of glass. Like flashes.
Colbert: Little bits of it and then the thing that, really like music because they died in September. They died on September 11th, 1974. The music from that summer leading up to it I will undo me in an instant.
The song of the summer was band on the run. Do not play band on the run around me. Yes. You become a different person like I was just personally shattered. And then you kind of re-form yourself in this quiet, grieving world that was created in the house.
And my mother had me to take care of, which I think was sort of a gift for her, it was a sense of purpose at that point because I was the last child. But I also had her to take care of. It became a very quiet house and very dark.
And ordinary concerns of childhood suddenly disappeared. I won’t say mature because that actually was kind of delayed by the death of my father, by restarting at 10. But I had a different point of view than the children around me[emphasis mine].
Cooper: There was a writer, Mary Gordon, who wrote about fatherless girls and I think it applies and my mom used to quote it to me all the time but I think it applies to boys as well as paraphrase. A fatherless child thinks all things possible and nothing is safe. And I never really understood when my mom would say when I was alone, young but I’ve come to understand it.
All skilled mental health professionals regularly practice managing the impact of their own emotions on their treatment relationships. That, however, does not make us superhuman. In our roles as husbands, parents, children, siblings, and friends, we remain just as capable of acting on our petty and sublime feelings as our patients. Grief can emotionally paralyze grown men and women, let alone children. Growing up motherless is not easy for kids, but what would their fate be if their father were to succumb to grief? No child can survive the emotional impact of losing their mother to cancer and their father, even if not literally, at the same time.
It was a high-probability, high-risk scenario.
That’s why I decided that we would all go to grief counseling. And that is why I only waited a couple of weeks after Uzma’s death before setting up our first appointment.
“I don’t want to say goodbye to patients,” Uzma told me one day in late March 2016. “But I feel as if I don’t have a choice,” she added.
She wasn’t thinking of retiring from medicine. It was to be more of an extended self-care break. “I will take six-to-months off. Then I will return to work.”
February had brought the terrible news that Uzma’s cancer had returned. It was now in the liver, which is never a good sign. Only half of the patients whose breast cancer spreads to the liver survive for more than three years. We both knew this. This knowledge unleashed a flood of feelings that got in the way of being the kind of psychiatrist, the kind of physician that Uzma was used to being — emotionally fully available to her patients when she was at work.
A diagnosis of cancer brings unwanted ownership of a metaphorical box or jar in one’s mind. This box is the opposite of what the mythical Greek woman Pandora unwittingly opened. Hope is outside the box. There it allows the person with cancer to willingly and smilingly take that harsh drugs that aim to kill rogue cells. The dread of cancer’s return and all the feelings linked to that dread live inside the box.
Anxiety, terror, and helplessness live inside that box. And so does the guilt of being the person who brought cancer’s burdens into the lives of loved ones. Sadness stemming from lost personal and professional dreams survives in there. When cancer is in remission, this mental box seems to get lighter and smaller. Sometimes it may be forgotten for weeks or months on end. But it stays there. The ownership of this box is not just unwanted — it is permanent.
Recurrence and the spread of cancer opened wide Uzma’s cancer-feelings box. From that day on, she felt its weight every single moment that she was awake. The now unrestrained emotions even intruded upon her sleep. Sometimes, they kept her from falling asleep. On other occasions, they injected nightmares into her mind when it was supposed to rest.
She realized that her feelings so overwhelmed her that she couldn’t give any of herself to her patients. That’s what drove her decision to take a break. She said, “If the treatment seems to work, I will return to practice in the fall. Or maybe, next year.”
Becoming a doctor takes a long time. It requires an all-consuming commitment to absorbing a considerable body of knowledge. An apprenticeship called residency follows. Depending on the specialty, the residency lasts three to more than seven years. Most doctors sacrifice the first decade of their adulthood, the prime of their youth, to the altar of medicine. During that time, they breathe, eat, drink, and live medicine or the pursuit of medicine. Most can’t find time for anything else. In the end, medicine so shapes the foundation of their adulthood that it becomes an integral part of their identity. Once a doctor, always a doctor.
Taking a break for treating patients felt like an emotional amputation to Uzma. I believe that though she did not allow herself to say it aloud then, she already knew that this was it — that this moment was to be her retirement from medicine. The cancer-feelings box was now enormous, heavy, and yawning wide. It was impossible to force it closed for long enough to relax and focus on helping patients.
Uzma began spending more time with our kids. She took writing classes and art classes. She honed her creativity in a way that linked many hearts to hers. Some of those hearts belonged in a Facebook group of physician moms that she had joined in 2014. Many belonged outside that. She practiced distancing herself from toxic people. All of this helped her cope with her heavy and open cancer-feelings box.
When the fall of 2016 came around, Uzma contemplated returning to work. But she was in two minds about it. On the one hand, she realized the work it took to manage her fears and anxieties around cancer. She didn’t think she could keep up with that work while also returning to practice. On the other hand, not returning meant giving up all hope of the amputated physician identity becoming whole again.
But she knew she could no longer give her all to patients when she was with them. She knew she would be almost continuously distracted by her own emotions when treating them. She knew they deserved better. So she sacrificed part of herself for the sake of the obligation she felt to her patients.
This month, it has been four years since Uzma quit the practice of medicine. It would take her another year and the spread of cancer to her skull before she would finally say aloud that she was retired. But four years ago, as she struggled with leaving medicine, this is what she wrote on her Facebook timeline on April 16, 2016:
Thinking about the relationship we doctors have with our patients.
They trust us, open their hearts to us, and let us into their lives. We can ask them anything and they are expected to answer. We become so important to them. They rely on us and depend on our recommendations and advice.
But then, unlike regular relationships, this intense relationship can end abruptly. There may or may not be a closure, some exchange of niceties, and perhaps a hug. And then it is over.
I have said bye to many patients over the course of my career. Each time it’s equally painful. But each one of them had left me with an insight, a lesson, a message that I keep close to my heart.
I always say, its a privilege that someone let me be a part of their pain and suffering, that they shared a slice of their heart with me and show me, what life truly is.
I would do it over and over again. Being a physician is such an honor.
Today I grieve saying bye to some of my patients, today I look forward to new beginnings.
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 yet experiencing this form of gratitude.
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; why 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 tragic ancient 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 few 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 were 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 lives 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 people from 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 to all the readers of Uzma’s blog and book who write to tell me how her book helps them cope with their cancer or loss journey. It shows me why she really wanted to get the book out there. That you all take the 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 the best among all family celebrations — Thanksgiving, the only holiday that celebrates gratitude without any obligatory religious rituals.
And while we should all practice gratitude year-round, Thanksgiving is this—an annual reminder to focus the mind on this essential activity.
