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The Hardest Thing About Grief

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 possessing 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 increases 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.”

Does Modern Life Cause Cancer?

Every day we hear of a friend, or a friend of a friend, or some celebrity getting cancer. We are positive that we didn’t hear about so many people getting cancer 25 years ago when we were young. Surely there must be something wrong with modern life that this disease afflicts so many of us today. Those looking to blame modernity for this usually find the culprits in pollution, plastics, and processed food. And chemicals. And don’t forget kale, or rather too little of it.

I vaguely remember a textbook of pathology that I last read in medical school saying, and I paraphrase — “the biggest risk factor for death is life.” The more years we are alive, the more likely we are to die. Life expectancy at age 75 is much lower than life expectancy at age 10. Accidents and injuries tend to get us young. But most other causes of death are likely to get the older among us. What is true of most causes of death is true of cancer too.

Highlighting the relationship between age and death is not just me being cute. It’s essential in the context of cancer. American Cancer Society tells us that 87% of all cancer cases occur in individuals 50 years or older. Why? Each day that we are alive, our DNA has a small chance of mutating. Some of those mutations cause cancer. The risk may be minuscule each day, but over time it adds up. An article from the American Journal of Preventive Medicine tells us how our risk of getting cancer increases with age.

age-link-cancer

Uzma was not one of the 87 percent. Her diagnosis and death came before she turned 50 years old. That still doesn’t change what the data tells us about the link between age and cancer for the majority of us.

As an interesting aside, the table above tells us that or risk of dying from cancer is about one in five across most age groups. But after age 60 those odds start falling. That’s because, as we get older, a greater number of chronic diseases — heart disease, kidney disease, consequences of over-consumption of food, alcohol or drugs — start competing with cancer to kill us.

The longer more of us live, more of us will get cancer. This relationship is vital to keep in mind when looking at the link between cancer and modern life. Let’s take a look at world life expectancy.

world-life-expectancy

It is only in the past 50-100 years that people started living past the age of 50 years, the cutoff after which almost 90% of all cancers are diagnosed.

So, it’s true, we are hearing of more people being diagnosed with cancer than our grandparents did. But it’s mainly because more people are living longer. Yes, there is evidence of all other sorts of risk factors. Smoking, alcohol, and obesity carry cancer risk. As do sunlight, air travel, and certain chemicals. And managing those risk factors will lower the odds of getting cancer.

But the number one risk factor for cancer is age. Is a non-modifiable risk factor — that is, we can’t do anything to stop that we age. And that simple fact leads to only one lesson — each day that we are alive, we must truly live.

Kindle Edition Of Uzma’s Book Is On Sale.

If you like ebooks, this might be the month to buy Uzma’s book when it’s deeply discounted on all Amazon sites (US and international).

If you have friends who like ebooks this might be the month to recommend it to them.

Did you know that you don’t need a Kindle device to read a Kindle book?
You can read it on the Kindle app for iPhone (or iPad) and Android.

Note however that on iPhone and iPad you can only purchase the kindle edition by going to Amazon through your browser (Safari). Once purchased, it downloads automatically to the Kindle app.

This discount only applies to the Kindle edition and is only for this month.

Help spread the word!

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Random Thoughts About Planning A Funeral

I planned my first funeral a few months ago. I am talking about my wife Uzma’s funeral. She died on January 30, 2019.

Uzma had cancer. When her doctors couldn’t stop cancer from having Uzma, they referred her to hospice. It was about 6 weeks before she died. That’s when we began funeral planning in earnest. Once her cancer came back we knew that it would take her before we could grow old together. Still, we hadn’t thought about funeral planning until Uzma’s father’s funeral. All Uzma knew before then was that she wanted Memorial Park Cemetery in Skokie to be her last resting place. It is a non-denominational cemetery. And Uzma would joke, “If I become a ghost, I want to be able to easily haunt Old Orchard Mall.” One of her favorite malls is across from that cemetery.

Funerals back home on the Indian subcontinent are usually hasty affairs. There are no funeral homes. Wakes are held in the deceased’s home. There’s no cold storage. No one embalms the body. Some families wait for key relatives to arrive from out-of-town, but most perform the last rites are performed within a day or two of death. No cold storage and no embalming dictates that timeline. Climate defines traditions.

Traditions are not immutable laws of physics. But many immigrants who have lived in the west for decades treat them as such. We don’t give much thought to the idea that though the dead are the on display, funerals are meant for the living. No matter what faith tradition the deceased belonged to, her life is over. All the good she was meant to do is done. She has earned all her promised reward, whether a place in heaven or a better next life. Her outcome won’t change whether her last rites are in one day or seven.

On the other hand, it does have a bearing on all those who loved her and are left behind. For them, the funeral is an opportunity to say their last goodbyes, to celebrate a life well-lived and to mourn the possibilities that died with their loved one. It is an important stop on their journey of grief. In today’s world, when so many who love each other tend to live so far apart, it would be better if the funeral rites were completed when everyone who wanted to be there got there.

Uzma’s father, suffering from advanced lung disease, died in January 2018. Uzma was by his side when he took his final breath. The kids and I were by her side an hour later. His was a hasty funeral. He was taken to a Muslim funeral home where the close family got to see him again before he was buried. There was no wake open to all friends and relatives. Until almost the last moment we didn’t know exactly when he would be buried. At the graveside, Uzma was shocked and distressed to see how disorganized everything seemed. A front end loader used as a crane to lower her father’s burial vault into the grave, which was then covered with large chunks of frozen ground. None of it felt right.

She would later say that it felt that in that funeral there was no respect for the dead or the living. And that’s when she decided that she would have a Muslim funeral but not in a Muslim funeral home. “I don’t want to buried in a hurry,” She said, adding, “I want everyone who wants to come to have a chance to come.” She wanted everyone to know exactly when to come to the funeral home and exactly when she would be buried.

Looking back, I think we should all plan our funerals when we are healthy. Pick the funeral home, the flowers, the casket, the agenda. The whole shebang. Once we are terminally ill, starting the planning then, whether for a funeral or estate planning, becomes too emotionally challenging — for us and our loved ones. Even beginning such discussions at that point makes it seem like giving up all hope and pulling the plug. That’s even though Uzma knew what kind of funeral she wanted, we put off planning it until December.

On the first day of hospice, she said to me, “Help me make funeral arrangments. You know what I want. Do the legwork. But I want to make the final decisions.” It’s not easy for anyone to make their own or their beloved’s funeral arrangements. Hard as beginning funeral planning is after diagnosis of a terminal illness, it is even harder when you can practically hear death’s knock on the door.

Suburban living in America means we all drive past funeral homes multiple times a year, if more frequently. But we don’t really start scoping them out or even remember their names. Not knowing which funeral home to begin with, I began the planning with the non-denominational cemetery across the street from one of her favorite malls.

Uzma was very weak by this time. Getting out of the house, getting in the car, getting out of the car, things we usually do without giving any thought, all required planning, and a great deal of help. However, she wanted to make the final decision. After I got some basic information over the phone, we drove to the cemetery. She picked the specific plot of land to hold her in perpetuity. It was next to a large weeping willow.

Learning that Uzma was a Muslim, Tom at the cemetery suggested we contact Justyne Scott at N.H. Scott & Hanekamp Funeral Home. “She works closely with an Imam and has experience doing Muslim funerals,” he explained. I called Justyne the next day. Indeed she did work closely with the Imam from a mosque in Northbrook. Fortunately, Uzma considered that mosque, affiliated with the Islamic Cultural Center of Greater Chicago in Northbrook as her home mosque. That is the mosque she most liked to visit for prayers.

Justyne met with both of us. Justyne had the best demeanor I could have hoped for in a funeral director. She always appeared professional without being stiflingly formal. Moving deliberately, she looked neither in haste nor lackadaisical. She had a calm, reassuring voice that was neither louder nor softer than necessary. No question ruffled her, no request flustered her. She gave us good advice about things we hadn’t thought about.

Justyne explained to us which arrangements such as caskets and flowers that Muslim families usually chose as well as the unique arrangements the Imam was okay with. She even up followed up with the Imam regarding questions we had. She explained how the funeral home arranged for the ritual washing of the body that Muslims do before the funeral. Uzma and I repeatedly wept through these discussions. Justyne responded in a way that a good therapist would — tissues at hand, never speaking more than necessary and never saying anything inappropriate to the moment. Uzma decided who should wash her body and which casket should hold her.

Wanting everyone who wanted to attend to have the opportunity to attend, Uzma had me ask the Imam his views on embalming. The Imam said he didn’t know but he would research and get back to me.  A few days later he told me that wish you won’t do it, but there is no scriptural prohibition against it. He added, “If you do go for embalming, I will still do my job — which is to lead the funeral prayers for your wife.” Justyne told us she would delay the embalming for as long as she could. Eventually, it was not necessary. Uzma passed away on a Wednesday night. We buried her four days later. Everyone we knew wanted to be there.

Uzma passed away late in the evening. The staff member from N.H. Scott & Hanekamp, who came to pick Uzma’s body up from our home at 2 am first met with me and explained what he would be doing. He was respectful, thoughtful, and deliberate. He also had an appearance and demeanor like Justyne’s – just right for the context and occasion. Whether it is because of the training N.H. Scott gives their staff or whether it is because they select staff who are already this way, I don’t know, but it made things bearable during such a difficult time.

On the day of the funeral, everything happened as planned. Justyne and other funeral home staff were unobtrusive but never hard to find and never unhelpful. There was a room where we had the wake, the eulogies, and prayers. And they also made another room available to us. They let us keep cookies and coffee in the is second room. The atmosphere there was less somber. It was a lifesaver, keeping our young kids and their friends from becoming disengaged.

When the Iman was ready to lead the funeral prayers, Justyne and her colleagues knew exactly where and how much space to create for the Muslim attendees to pray. They just made everything run smoothly and in a manner that would have pleased Uzma. There was nothing slapdash, hasty, or haphazard about it.

It got me thinking, what makes a good funeral home director. First and foremost, like a good therapist, she must listen and comfort well. She must be familiar with the faith traditions of her customers. As the director of the last act in which the deceased plays a part, she must make the different moving parts of a funeral work together without becoming too visible. Justyne was all that, and then some.

More than half a year has passed since Uzma is gone. I feel half-ready to make a decision that Uzma deliberately left to me — choosing her gravestone and epitaph.

There Is No Shame In Loss

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. The 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 play-dates. 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 way she died is burned in my and our kids’ memories. Whether we speak of her every day or 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 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.

 

 Why I Keep Writing

[Commentary by Dheeraj Raina: This post is published under Uzma’s byline because it’s a previously unpublished post of hers. To read my approach to her unpublished work, read this. I know Uzma wanted to write a longer post about this. She was unable to complete putting many thoughts on paper because of the unpredictable ways in which cancer and its treatment interrupted life repeatedly. She started writing for herself. Over time, she heard how much her writing helped others. After learning that she never could ignore the obligation to write for the sake of others. That’s why she felt a great emotional need to complete her book before death came.]

From my inbox :

“Hi Uzma–

I want to introduce myself as a fellow warrior. I’m a physician and saw your blog thanks to a Facebook group yesterday. I read your Carpe Diem/Crappy Diem post and I have had the exact same musings. I am (age) yrs old and was diagnosed with stage 4 breast cancer last May. Initially, I was quite ill (liver mets). I have been back to work since September (was still in my initial chemo at the time) and am back in treatment (now near weekly chemo because things got worse in January). I’m feeling pretty great, all things considered. I have a husband and a young child.

Anyway, I wanted to say hello, and to let you know that I’m here working, alongside you and fighting. And actually, I’m fighting back tears after reading your blog posts, which contain many things I have thought about for the past year. Thanks for writing and making me feel not so alone as a doc and mom.”

We became friends. She is currently in hospice and the inevitable is looming and as I grieve I hold on to her words.

Religious Platitudes For Cancer And Other Serious Illness

[Commentary by Dheeraj Raina: This was a Facebook post of Uzma’s. Read this to understand my approach to turning some of Uzma’s Facebook posts into blog posts.  I have edited this post’s formatting. Words I have added are in italics. Enjoy!]

* * *

This is what I hear over and over again.

I believe in prayers and miracles but these thoughts seem to have a pattern and classic content.

I hope for remission, I pray for recovery. But people do get better and some don’t.

Muslim platitudes for Illness:

1. When first sick

May Allah heal you, I will pray for you.

2. Illness prolonged

It’s not an illness , it’s a test. I will pray for you.

3. Still sick

Duas (prayers) change things. Keep praying.

4. Still quite sick

Shifa (healing) is in hands of Allah, keep asking.here are these things you should recite every day.

5.Still sick and worse.

Miracles happen all the time. I am praying for a miracle. Keep reciting what I sent you.

6. Patient suddenly better for one day

I told you never give up Hope , see how things change when you pray.

7. After 24 hours – Still sick, worse and may be terminal.

Death is inevitable. Whoever lives, will taste death.There is time to repent. Stay strong, keep faith .

8. Deathly ill

Now who can really interfere with Allah’s plans. He decides what is best. There is always a reason why prayers aren’t accepted. They wash away sins.

9. Died

We came from Him and shall return to Him. I will pray for the departed soul.

10. Someone else gets sick.

Rinse and repeat.

A Note About Uzma’s Previously Unpublished Posts And Select FB Posts

Uzma was an astute observer of human emotions and behavior — her own and others’. Between her diagnosis of breast cancer in 2013 and her death in 2019, Uzma wrote prolifically. Her writing was incisive, irrespective of whether she was writing to inform, persuade, amuse, or vent. She found the words to express what many of us could not. She shone a light on feelings that, but for those apt words and her willingness to say it as it is, would have remained hidden and unexamined.

As I am going through things she left us, I find writings that are clearly drafts that she meant to publish after working on them. They are in various stages of completion. I will post on this blog, under her byline, those drafts that are complete enough to hold their own. I may add commentary or other notes and adjust formatting for the sake of clarity and more comfortable reading. But I will not otherwise edit her words. I didn’t edit her words when she was alive and won’t do it when she is gone. If you do add words in the main body of her unpublished work, I will indicate clearly which words are mine.

Sometimes I come across her posts in Facebook Memories that can stand on their own as full post — some are short, and some are long. I will plan some of those selected writings into posts on this blog to have a redundant mechanism of keeping them and also so that they are easier to find than Facebook Memories. When I do this, I will make the title for the post as most of her posts on Facebook, like most of the rest of ours, don’t have titles. I will indicate the original date of the Facebook post when I add it to Uzma’s blog. I realize that many of the Facebook-to-blog posts won’t be about breast cancer, but I think you, her readers, will be okay with that.

Video Event Update

For those readers on Facebook, there will be Facebook Watch Party at 4 pm Chicago time today at the blog’s page Uzma’s Blog, Breast Cancer Experience. In a Facebook Watch Party, friends watch a recorded video together. I do a book reading and answer one question in the video. I will be there at the party to respond to other comments or questions. The video will be available both on Facebook and YouTube afterwards.