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!”
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.
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.
“Will you come up the stairs a step or two behind me?” Uzma asked me one day in early September 2018 as we were getting ready to go to bed. Various chemotherapy regimens had damaged her peripheral nerves. Sometimes when that happens, a person’s kinesthetic sense is lost. That is, they can’t tell where a part of their body without also looking at it. Uzma was having difficulty feeling the floor and just knowing where her foot was without looking at it. Walking steadily without support was becoming an increasing challenge.
It started out as an off-and-on problem, but for the past three or four months, it was more often on than off. “I just don’t feel safe going up by myself today,” she explained. “Of course,” I said, and walked one step behind her as she went up the stairs. The next morning I walked a step ahead of her as she came down for the day.
I didn’t know it then, but that — me climbing up the stairs one step behind Uzma, and one step ahead of her when coming down — was soon to become a daily routine. It was as if we were finally doing the phere (rounds around the fire) that we had missed when we skipped our religious wedding ceremonies. Only the fire was one lit by cancer, and it was consuming Uzma’s body. Gradually, by late October, weakness and overwhelming fatigue started to compound the balance problems. She spoke about needing a nap after a shower. Then one day, she asked, “Could you give my bottom just a little push as I go up each step?” She could walk by herself, taking support from a wall, on flat ground. But going up and down steps was another matter. I started wondering if I should look into stairlifts.
* * *
Mental health professionals will recognize “Woulda, coulda, shoulda!” as the words that haunt people whose lives are stalked by the twin demons of guilt and regret. These three words, obsessed over too much, lead a mind down the labyrinthine rabbit-hole of soul-numbing depression and anxiety. At least as it relates to Uzma and being there for her, the two demons don’t quite barge into my memories and dreams. But I do see their shadows, sometimes. Those shadows led to my posts about Costs of Cancer, and to my understanding of how and why a referral to hospice was delayed.
The differences of faith and national origin we overcame to be together made our love unusual. But none of what I am about to describe below was out of the ordinary. Hundreds of thousands of people around the world are caregivers for their loved ones with cancer. They do all that I did with Uzma, and then some. They do it without fanfare and without recognition. I need no medal either.
* * *
Once Uzma was told her cancer was stage 4, it was as if she had been thrown off the train we had been riding together. She was put on a different train from her family. It ran on a track next to ours. We kept pace together. We just knew that her track was gonna end before ours. When you are riding a train, you can’t really see where the track ends even if you know it will. Like many in our situation, despite being on separate trains, we held hands, stayed up together, spoke of our dreams and our fears. We tried to help each other as much as we could. I kept helping her with an increasing number of daily tasks of self-care as her train slowed. She kept helping me through life’s problems to the very end.
Living life fully with Uzma even knowing our journeys were separate is what saves me from the guilt that some feel after a loved one is no more. Guilt is uppercase “Woulda, Coulda, Shoulda.” We can avoid guilt by how we live and treat each other when we together. Regret is another story. It is inevitably intertwined with loss. Its focus, degree, and intensity may vary, but where there is grief, there’s regret. Once Uzma’s cancer had spread beyond the breast and its lymph nodes, her end was written. Nothing could change that fate. But I do think at times, if I had done this or done that, perhaps her final days could have been more comfortable. Regret is lowercase “woulda, coulda, shoulda.”
* * *
In August of her final year with us, Uzma confided, “I am too disabled to do anything with you or the kids. I am not sure there’s any point in continuing treatment.” She was in two minds about continuing treatment. She felt tired, exhausted. The cancer treatment toolbox is full of poison meant to burn the cells that are not sticking to the plan and are doing their own thing. Though these treatments also harm normal cells — hence the side-effects — patients willingly take them.
They take them because of hope. They think, “So what if I will have some temporary or lasting damage. If this treatment ends up working, at least I will be free of cancer. And I will be there with and for my family.” But when the errant cells turn skilled tricksters, oncologists are left playing whac-a-mole with their treatments. The patient suffers a lot of hits on her body while the mole that is cancer seems none the worse for it.
The first drug Uzma took after her cancer came back kept it at bay for nine months. After that, nothing worked for more than 3-4 months. Fantasies of N.E.D. (no evidence of disease) status became ephemeral illusions. For some people, successive treatments manage to work for several months or rarely, even a few years at a time. Uzma wasn’t so lucky. Uzma was tired of the hits her body was taking without any benefit.
When she said she was in two minds about continuing treatment, I said, “You have suffered a lot. If you stop treatment, I will support that decision. I won’t think you love our kids or me any less just because you stop treatment.” It seems like the right thing to have said at that moment.
But I think it would have been better to say, “I love you. You’ve suffered a lot. You think you have to keep going, to take that one more chance that our kids won’t grow up motherless. But you are taking a beating. It might be time to be a bit selfish and choose comfort over another treatment.” One might think, what’s the difference? The first way of saying implies that the decision to quit treatment is hers, and I am there just for support. The second way is one where I help her think and feel through this decision.
I thought of saying something like the second way, but then, despite all the love we had nurtured over the years, or maybe because of it, I bit my tongue. I thought, what if she sees that as me picking a side against hope? What if she sees that this isn’t just her husband saying this but someone who also happens to be a physician? Does the physician in him see no hope at all? Is it that bad? Am I so far gone?
* * *
The reason I feel regret but not guilt about this is that I still believe that oncologists should be responsible for bringing up hospice in a timely manner. Patients and families don’t know a lot about hospice, about it can help. They think of it as only as a death sentence. The fact is the oncologists know that the death sentence is stage 4 cancer whose odds of responding in a timely manner keep going down with each successive treatment failure. An intense cloud of emotions envelopes patients and families dealing with terminal cancer. They can’t see things as clearly as their doctors can.
Uzma made some physical therapy (PT) appointments in October, hoping that PT will help her gain her strength and balance back. However, her unrelenting cancer kept grinding her body down. The resulting weakness meant she could never keep any of those appointments. Between September and December, medicines caused bone-marrow suppression. She had to have multiple blood transfusions. Though I can tell the various ways in which both of us were clear-eyed about her prognosis, there are also ways in which we didn’t want to buy it.
* * *
Even before Uzma’s oncologist finally stopped treatment and referred her to hospice, the writing was on the wall. In early December, I started calling business outfits that installed stairlifts. Because it was the holiday season, everything took longer. Visits to take measurements took longer to schedule. Quotes took longer. Actually scheduling the installation took longer.
The emotionally toughest decision around the stairlift was whether to rent or buy. By this time, Uzma was too tired and drained all the time to participate in any household decision. To rent or buy had to be my decision alone. The total rent for about eight months was to be the same as the cost of buying outright. Was she going to live eight months? What was more important — a rational decision about money, or letting Uzma know that I thought there was still hope?
Part of me just wanted to buy. Part of me wished health insurance covered stairlifts. Then the insurance overlords would make the decision. And I would accept the decision while blaming them for limiting our choice. But stairlifts are home modifications, not medical equipment. So, no insurance company knight-in-shining armor. I decided to rent it. At least that decision made choosing the company I went with easier; of the ones I got quotes from, only one rented them. I dreaded what I would say if Uzma asked if we bought or rented the stairlift. Would I tell her the truth? She always wanted to wrestle with the truth, no matter how difficult the match. Or would I tell a white lie that would not hurt her? To this day, I feel that dread. But Uzma didn’t ask, and I didn’t tell.
The stairlift eventually came in late December. Immediately, I saw how much easier it made things for Uzma. She no longer felt nervous going up or down the stairs. To this day, I regret not having pursued the matter of the stairlift when I first thought of it in October.
* * *
Grief is a mixed bag both when death comes unexpectedly and when it is long and drawn-out. In the first kind, it’s as if a nuclear winter falls over a family. The old world goes dark in the snap of a finger. A sudden loss is incredibly tough on the grieving; it has the potential to complicate mourning with a mountain of regret.
In the gradual type of loss, death first casts a shadow on a family. The shadow gets imperceptibly longer each day. Sometimes years and months pass with barely noticeable changes. Then just towards the evening of the loved one’s life, the shadow seems to lengthen so quickly that it feels like only seconds. The evening mist that one was far in the distance is suddenly upon us. And just like that, our loved one is gone. The speed of the final stages of dying creates opportunities for regrets even in this kind of loss. The only hope is that the regrets are few and fleeting.
If you were my patient, and you were grieving, I would comfort you. Most of the time, I would know the words to say and the ones to skip. I would help you think about loss, grief, and life in a way that would spur you to action. I would help you fit your thoughts and feelings differently than when you came to me. Hopefully, this would help you live better with your grief. I would say to you, “I don’t want to make you forget about your loved one. I hope to help you live better with their memory.”
Accepting the loss of a loved one is the first task of grieving. For weeks after Uzma died, I wanted to see her when I turned around the various corners in our house. I waited to hear her voice. It still feels off not to have her next to me in the car, on a plane, on road-trips, and vacations. I am often half-lost without her as my problem-solving partner. All this still happens. But time dims its frequency and pain. Repetition is the mother of learning, they say. When reality keeps dashing the hope of a loved one’s presence, the heart eventually gets it. It accepts the permanence of loss.
Adjusting to life without the loved one — another task that every bereaved person must eventually master — is a bit harder. Accepting the reality and finality of loss does not make this easy. Uzma and I were equal partners in life. But even equal partners split the tasks of life in unequal ways. Their differing interests, skill, and circumstance decide where the line gets drawn.
Uzma worked part-time since our oldest was born. But that was outside the house. Inside, she was the engine behind our family’s social calendar, the kids’ extracurricular activities, and most of the day-to-day planning and organizing of our life. I helped with all of them, but she was the wizard who made it all work. Adjusting to life without her means figuring out how the trick works after the magician s gone. Someday I will get the whole illusion, but today isn’t that day.
A surviving parent must also adjust to life by taking on the sole responsibility of helping children grow up adequately adjusted. They must grow up reasonably content. Capable of love. Practiced at enjoying life. There’s one plus to being the only parent. One doesn’t need to check every new thing about the kids with the other parent. But there’s a significant downside. One doesn’t have anyone equally invested in the same kids with whom one can, when one wants, discuss every new thing about the kids.
It could be something as simple as figuring out the right age for each child to have her first mobile phone. One must decide upon the best way of teaching her to be on time, to be a good judge of character, to consume media critically, to manage money properly, and a million other things. Usually, parents complement each other in small and big challenges like these. Each fills the gaps in the parenting temperament and skill of the other parent. While self-aware parents are always trying to improve on this, the loss of one’s parenting partner makes all this harder. Having said all that, young kids at home do force one to move on with the first two tasks of grieving.
Failing to navigate grief properly is risky. One must give grief its due, but no more. Otherwise, one gets stuck with what counselors call “complicated grief.” Complicated grief is grief that possesses the survivor in a way that she has a hard time returning to normal life. She becomes too focused on what reminds her of the dead. Or just as obsessively tries to avoid anything that reminds her of her loss. She pines so hard for who and what she has lost that she becomes detached from the living.
She wishes she had died with the one she loved. She is consumed by sadness. Not just in the immediate aftermath of her loss, but months and years later. About seven percent of the bereaved end up with complicated grief. Though no one is immune, being a woman, being older, having a lower income, and losing a child or a spouse, especially to cancer, all these increase the risk of complicated grief.
For most of us, the passage of time makes the most of the work of grieving easier. However, there’s one part of navigating grief that seems to get harder with each passing day. It is the hardest part of grieving — keeping a connection with the dead while moving on with life. This task overlaps with everything else one does, whether adjusting to life again or accepting the finality of loss. Every social visit, road trip, vacation, everything one does to have fun, every step, and every breath to tackle life anew, risks blurring the memory of the loved one. Meeting this challenge is critical to avoiding complicated grief. This, the thing that appears to get harder with time, is the hardest thing about grieving. I hear me saying to myself, “I don’t hope to make you forget about Uzma. I hope to help you live better with her memory.”
I loved the movie O’Brother Where Art Thou. There are a couple of related scenes from that movie that came to mind recently. For those who haven’t seen the movie, it’s set in the south — Mississippi, I think — during the Great Depression. Three escaped convicts, with the authorities in hot pursuit, end up at the farm owned by a cousin of one of the three men. As they are sitting at the kitchen table eating, one of them asks his farmer cousin about where his wife is. The farmer glances at his son sitting across, then back to his cousin. He first says something to the effect that he doesn’t know. Then, in a matter-of-fact manner, he adds, “Mrs. Hogwallop up and r-u-n-n-o-f-t.” We can see that he is trying to protect his son from the devastating truth about the young one’s mother.
A couple of scenes later, when the authorities have the convicts surrounded at the farm, the young boy comes driving the family car and offers to help the convicts escape again. And he says, “Get in boys. I am gonna r-u-n-n-o-f-t!”
Suddenly the audience realizes that the kid knows more than his father thinks he knows.
I am reminded of this scene every time I am with friends and relatives who try to speak of Uzma in hushed tones when the kids are within earshot. They think they are protecting our kids by not making them think of their loss. Like the father in the movie, they are well-intentioned. But they just don’t get it.
Our children saw their mother live with cancer. They saw how she chose to live life fully despite her illness. She made many new friends in her last few years. She wrote a blog. She wrote a book. She was a model for a nationwide beauty store chain. They saw all that.
When Uzma was around, she was the one who first greeted them when they returned home from school. When she was well, it was she who took them clothes shopping. She cooked their favorite meals. She arranged their playdates. She nursed them when they were sick.
Then they saw their mother gradually become weak. She stopped doing most of the things she used to do for them. They saw her become unable to climb stairs, bathe, use the bathroom, and even get into her bed on her own. They were next to her when she breathed her last. They lay next to her for several minutes before the funeral home staff came to take her away. They felt her get cold and stiff. The saw and felt her die.
Whispers and hushed tones are for secrets, especially shameful ones. Uzma’s death is not a shameful secret that must be whispered about.
The way she lived it and the way she died is burned in my and our kids’ memories. Whether we speak of her every day or do not speak of her for months is irrelevant to us missing her. How is it possible that not speaking about her in our kids’ presence will make them feel their loss any less than her daily absence does?
There’s no shame in loss, no guilt in grief, and no embarrassment in mourning. And let’s not make our kids think so.
As we settled into our seats on the plane, Gauri said, “Our family is sitting together for the first time.”
“What do you mean?” I asked.
“I mean Mama is not with us. So no one has to sit on the seat there.” She pointed sadly across the aisle.
We were in a plane with 3 seats on each side of the aisle, heading to Boston to visit a friend. It was a trip that Uzma and I had really wanted to make last summer, but never could make it work because of cancer.
Sometimes I felt guilty saying we couldn’t visit someone because of cancer. It’s not like we didn’t travel at all during Uzma’s last year. We took a trip during the kids’ spring break. We also went to Niagara Falls on the fifth anniversary of Uzma being diagnosed with cancer.
Originally, Uzma had planned to celebrate that milestone in New York City with a couple of breast cancer survivor friends. By the time the day drew near, she knew she wasn’t really feeling well enough to coordinate anything with friends. Less than a month before the Niagara trip we had found out that yet another treatment regimen had failed her. We ended up planning that break for the falls just 3-4 days before.
This is what I remind myself when I feel guilty about not visiting people who mean a lot to us in the last few years. Cancer, it’s treatment, and side-effects of treatments kept us from making any plans with friends and relatives. It felt easier to make last minute plans by ourselves.
When traveling on a plane with 3 seats on each side of the aisle, we had seen families of four split up a couple of different ways. Either they would sit two by two, usually in back to back rows. Or they would split up across the aisle. We preferred to sit in the same row. That meant one of us — Uzma or me — sat across the aisle from the rest of the family.
Now that it is just the three of us, our amputated family sits together. How will we manage traveling on a plane with only 2 seats on each side of the aisle? Will there be an argument about who gets to sit with whom? Deciding not to worry about that now, I started thinking about life without Uzma.
This was the first trip ever without Uzma. You could tell. I thought I had managed to get us all packed and ready on time. As we settled in on the plane, it dawned on me that I hadn’t taken anything to keep the kids busy. Uzma always used to make sure they had enough activities to stay occupied — books to read, books to color, sheaves of loose paper, pencils, coloring pens, and pastels. You name it, she would pack it. There was no chance of boredom. I had packed nothing. Zilch.
Fortunately, the plane had a screen for each seat. It had a decent selection of kids’ movies. That made the 2-hour flight really fly.
The other day, about 3 weeks after we buried Uzma, I was getting a haircut at the neighborhood barber’s. The friendly guy that he is, he asks, “So, what’s new?”
Do I tell him Uzma died? Do I not? I decide not to dwell on the question too long. A pregnant pause with one’s barber at this point would be weird. In a split second, I reply, as if instinctively, “Not much. How about you?”
He starts telling me of the vacation he is planning with his family for summer. My mind wanders off.
I have forgotten how to plan vacations this far ahead. The last time we planned a vacation, staycation or even a weekend trip months ahead was a while ago; looking back at Uzma’s stage 4 cancer journey, it seems like a lifetime ago. Most of our trips in the previous few years have been last-minute adventures. If Uzma’s condition and treatment were stable close to some break coming up for the kids, we would go. “I should also start making plans now,” I tell myself, “so that once again we can start getting whatever qualifies as a bargain these days for air tickets.”
How do we decide who to tell and when to remain silent about a calamity that has befallen us? I’m not sure there are any rules for this. Will people know what to say? Will they become uncomfortable?
Will they say something irritating like, “You’ve got to be strong for the kids.”
As if I don’t know that!
Or will they say another common line, “At least she is not in pain any longer.”
}Yeah, that’s because she is dead! Is that better? I feel like asking.
But I don’t. I don’t want to make them uncomfortable. Some people will say, “I am sorry for your loss. I wish I could do something that would ease your pain. I am here for you.” When said sincerely, especially by someone who you know will check in on you soon, those sentences have an intriguing soothing power.
In the South Asian community, Uzma and I often heard of and from people who didn’t share their cancer diagnosis even with close friends. Sometimes, not even with close family members. We would often wonder what that was about. Why the stigma about something no one could accuse you of bringing upon yourself? After all, cancer is not like a mental illness whose victim can be casually and cruelly blamed for bringing suffering upon herself. It couldn’t be blamed on a lack of willpower. Uzma believed it had to do with the practice of arranged marriage in our community. If it became widely known that a parent had cancer, her son or daughter might be shunned when it’s time to search for a bride or groom. I don’t know if that is the reason, but it seems as good as any.
Uzma did not hide her suffering. She shared it. She hoped to inspire more people to share and be open about their cancer so that all could learn from each other. Sharing brought incredible emotional support from both friends, old and new. Not just to her, but also to her family. Whatever she gave of herself, she got in return many times over.
I am not sure about the term “Facebook friends.” It is often used with some disdain. But I’ve seen Uzma form meaningful emotional connections with people she has never met in person. When you do that, isn’t a Facebook friend just a real friend we haven’t yet met?
Hospice staff encouraged us to tell the kids’ schools about Mom being in hospice. We did. I also told the schools when Uzma passed away. I let the parents of the kids’ closest friends know. “Who else can we tell?” some asked. “Tell whoever you think would want to know,” I said.
I am glad I did. Many of our children’s friends came to the funeral with their families. Some of their teachers came too. Our kids felt incredibly supported. Many friends offered condolences in their own way when they went back to school. But one boy kept telling our daughter that he didn’t believe that her mother had died. That it was a lie. That little twerp, I thought. But he was the exception.
“How do you like it?” asked the barber as he handed me a mirror so I could see how he had cut my hair on the back of my head. It was fine. I paid him, tipped him, made some small talk, and left.
That evening, I resumed my train of thought, how should I have responded to that question, “What’s new?”
Obviously, a lot is new.
Uzma is not around.
I am a single parent, the only breadwinner, not just the primary one.
I am no longer one member of a team of two responsible for the physical and emotional well-being of our kids; I am the team. All family decisions, big and small — from what to cook tonight, to which dishwasher to buy to replace the one that just broke, to the kids’ education, are now mine alone.
Soon, Uzma’s name will no longer appear on various financial accounts, tax returns, and even return address labels. It won’t be on travel itineraries. Until our son grows up a bit more, I will have to get used to being the only one driving the family around, with an empty seat next to me. She won’t be there on her birthday, on Mother’s Day, on the kids’ birthdays. All that, and much more, is new.
I am glad I didn’t unload all this on the barber. If only he knew the bullet he dodged! So who should we tell, and who should we leave alone? I am sure there’s no one single approach. I could take the path of looking back at my last meeting with a person and recalling whether she asked about Uzma then. Uzma’s existence had to have mattered to them for her non-existence to matter.
Clear-cut this approach might be, but it would be antithetical to Uzma’s attitude, from which I could learn a lot. Her stance was one of openness to new emotional connections. After much reflection, I have decided that my rule of thumb will be to share my loss with anyone if the setting is conducive to active listening. A barbershop is not, so it was still okay that I replied, “Not much.”
