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Life Expands: Random Thoughts Remembering Uzma

What if Mom Were Alive

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 around. My daughter found some friends and was enjoying splashing around with them. My son 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. 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?”

My wife Uzma, – his mother and the creator of this blog, had died of metastatic breast cancer over four years before. 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 her. 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 one without them. It feels profane to even try to think about it. But life goes on, not because of one big thing, but 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 talks we had had. But as time went by, I realized 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 distant from where we begin. Without that, 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 pressing 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!”

And just like that, she lives.

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When Time Is Not On Your Side

A big part of dealing with an incurable illness is a sense of grief and an acute sense of shortened longevity.

One may argue that people die every day so no one has a guarantee in life. Fair enough!

But do you not save for retirement? Maybe not, since nothing is guaranteed, maybe spend it up, live a little? stop planning for the future?

Take each day one by one but not plan any savings.

Give up long-term dreams of travel because there is nothing certain.

Do you not think about seeing your children grow up or that is something that doesn’t matter?

Do you not dream of working and then retiring and relocating to a place of your dreams?

Do you not wish to see your kids graduate, married, and have grandkids?

Do you not want to be there when they need you as they get older?

Being there every step of the way for your spouse?

We all plan these things. That is part of life.

In that context even a 15-year survival ( the number I hear a lot) is still a huge adjustment, is it not?

I am thankful for each day, but it’s an adjustment to my new reality. A grief process, not lack of hope, not negativity.

– Uzma Yunus, Facebook post, March 17, 2016

[To read my approach to publishing her Uzma’s unpublished work and her posts on social media, read this.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

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On Thoughtful Giving For Breast Cancer

My wife Uzma died of breast cancer eight months 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 250,000 American women will be diagnosed with breast cancer in 2019, and over 40,000 will be diagnosed with MBC. 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 go on to 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 remain 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 are on a range of products. Pink banners are in a host of stores. The message everywhere is, “Do your mammograms!” There is not the same volume or intensity to the message that one in five screening mammograms are false negatives, i.e., they fail to detect 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 lymph node in her armpit.

The other message that doesn’t get highlighted during Pinktober is that almost one-third of women whose cancer is detected by mammograms will go on have stage 4 breast cancer. And that right now 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 easily available on that website.

Program Expense Distribution of Selected Breast Cancer Charities*

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. Its administrative expense, as a percentage of its budget, is the lowest of the three charities above. It spends eight cents to raise every dollar. 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 8.7% and 1.1% of expenditures at BCRF and Metavivor, respectively. Of the three organizations, as a percentage of program expenses, Komen spends the least on research. 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. Is it more important to us that all of our money goes to research? Do we want more of our hard-earned cash to go towards making more women aware of the importance of screening? Or do we prefer that more of it go to research.? Do we want it to go research focused on stage 4? Do we 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 make sure we review that information and give our money to the charities that most match our values and preferences.

 

 

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On Thoughtful Giving For Breast Cancer – 2021 Update

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.

Program Expense Distribution of Selected Breast Cancer Charities*

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.

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Remembering

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.

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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]

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Mother, Daughter And Breast Cancer

“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.]

uzma-quote-playing safe
Quote from Uzma’s Facebook post | Photo by Lauren Lulu Taylor at Unsplash
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Why We Are In Counseling

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.

[Featured Photo by Taylor Hernandez on Unsplash]

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The Day I Felt Ugly

I took a selfie the day I was feeling ugly.

Yes, I felt un-feminine and ugly that morning. I felt sad. The night before, I had shaved a handful of hair still on my scalp after two cycles of chemotherapy.

I was unsure if I would have hair again in my life given my diagnosis of stage four incurable cancer. I wondered if I would die bald, I asked if I was done with having hair forever. With those thoughts, I had grabbed my husband’s electric razor and shaved off my hair.

It needed to be done. Fall had arrived on my scalp, and I needed to accept. The next morning I looked at myself, trying to accept that I am bald once again— the second time.  I had few eyelashes. My eyebrows were just faint shadows of their former selves. My body, used to being toned and fit, was anything but. All around, I felt ugly and undesirable. I thought about the toll cancer had taken on my body and how much, bit by bit, it had stolen from me.

In my anger and rebellion, I got dressed, pulled out my makeup kit, and started to use it. I put on fake lashes, painted brows, and put on a bright lipstick. I told myself, “Even if I feel ugly, I won’t look ugly.”

An hour later, I was taking selfies all over the house.

Sometimes, it’s not easy to accept life the way it’s unfolding ahead of you, but I have found that it is necessary to stare back at it and give it a good scare. And yes, I may have felt ugly that day, but I made myself pretty. And yes, external beauty is superficial, but it does matter, or there wouldn’t be a multi-billion-dollar beauty industry.

I wanted to share this because I want you to know that I am not impermeable, There are many times when I feel very vulnerable. I just end up fighting back. I get up and try to fix the problem I face.

As the psychiatrist and author Elizabeth Kübler-Ross once said,

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and deep loving concern. Beautiful people do not just happen.”

Here is the picture from the day I felt ugly!

the-day-i-felt-ugly-1

[Commentary by Dheeraj Raina: This was Uzma’s Facebook post from July 9, 2017. Cancer does things to the body that make one feel ugly and undesirable. Uzma strongly believed that what we do with that feeling is up to us. Looking is good is not enough to feel good, but it helps. And a person’s beauty is not in the length of her hair, the shape of her nose, or the complexion of her skin. Instead, as Uzma showed us, beauty lies doing the best one can, in maintaining grace under pressure and smiling no matter what.

In this post, for the sake of clarity and readability, I have made a few changes in word selection and multiple changes in punctuation and formatting.  To read my approach to her unpublished work, read this.]

[Photo of makeup brushes by freestocks on Unsplash]

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A Reflection On July 4th

Below is the oath every naturalized citizen takes at the time of being granted citizenship.

We immigrants consciously make the decision to adopt this country as our homeland. It takes many sacrifices to do so.

This fourth, ask an immigrant what they left behind to be here and the sacrifices they made. Adopting another country is hard and we are full of gratitude for America having adopted us.

We have faith in our country and countrymen. Despite the current environment, it is a great nation. American people are full of generosity and have open hearts. We must stand together against hate and bigotry.

I hope we continue to value our diversity and morals that have guided this nation to success and enrichment.

We the people!

God Bless America!

Naturalization Oath of Allegiance to the United States of America

“I hereby declare, on oath, that I absolutely and entirely renounce and abjure all allegiance and fidelity to any foreign prince, potentate, state, or sovereignty, of whom or which I have heretofore been a subject or citizen; that I will support and defend the Constitution and laws of the United States of America against all enemies, foreign and domestic; that I will bear true faith and allegiance to the same; that I will bear arms on behalf of the United States when required by the law; that I will perform noncombatant service in the Armed Forces of the United States when required by the law; that I will perform work of national importance under civilian direction when required by the law; and that I take this obligation freely, without any mental reservation or purpose of evasion; so help me God.”

[Commentary by Dheeraj Raina: This was Uzma’s Facebook post from her last July 4th. In this post, I have only changed some punctuation and formatting for ease of reading. Otherwise, it is as she wrote it. To read my approach to her unpublished work, read this.]

Photo by Avi Werde on Unsplash