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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 while the dead are 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 essential 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 precisely when he would be buried. At the graveside, Uzma was shocked and distressed to see how disorganized everything seemed. A front end loader was 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 our loved ones and us. 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 started 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 vehicle, 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 forever. It was next to a towering weeping willow. She had long said she wanted to be buried next to a tree

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 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, Muslim families usually choose, as well as the unique arrangements the Imam was okay with. She even 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.

Uzma wanted everyone who wanted to attend to have the opportunity to participate, so I asked the Imam for 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 he wished we wouldn’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 who wanted to be there was 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 people 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 second room. The atmosphere there was less somber. It was a lifesaver, keeping our young kids and their friends from becoming overwhelmed.

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.

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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. 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.

 

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A Note About Uzma’s Previously Unpublished Posts, Select FB Posts, And Articles Written On Other Sites

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 blog posts on other sites or Facebook post that can stand on their own.  I will copy some of those selected writings into this blog to have a redundant mechanism of keeping them and finding them. When I do this, I will make keep any title she wrote for the post. I will create titles for her untitled posts when I put them on this blog. I will indicate the original date of the piece when I add it to Uzma’s blog. Though Uzma wrote only about breast cancer and related things on this blog, some of this material from other places will be about breast cancer, but this blog will allow all of it to be saved in one place. I hope, you, her readers, will be okay with that.

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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.

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First Flight Without Uzma

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.

Not really, though.

There was a stranger across the aisle.

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Coming Soon: Video Event

Uzma had planned to do a Facebook Live event on December 9, 2018. It was to be the start of a virtual book tour. Alas, it wasn’t to be. Her gradually worsening health took a sudden and quick turn for the worse on December 4. She ran out of time.

In her honor, I plan to do what she couldn’t. But I can’t do a Facebook Live event. Not yet. Yes, I become nervous when I don’t know what I am getting myself into. Like most humans, I find being physically and emotionally there for my dying spouse less nerve-wracking than being in front of a live camera. So, I will do a recorded video and hope to upload it on April 9, four months after Uzma’s original planned date for the live event.

I will read something from Left Boob Gone Rogue: My Life With Breast Cancer. I will add some commentary. The screenshot (see below) of Uzma’s announcement about the planned December 9 event shows, she wanted to answer questions from her readers. Therefore, I intend to answer a couple of questions. But since this will be a recorded video, my request to you, her readers, is to write all the questions you would have wanted to ask her in the comments below this post. Of course, it won’t be the same as her answering them, but hopefully, it will work for you all.

 

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Alcohol & Breast Cancer – A Link Worth A Spotlight

Most of us know about the cancer-risk of cigarettes but are utterly unaware of the cancer-risk or alcohol. Our liver converts all alcohol we drink, whether beer, wine or hard liquor, to acetaldehyde. Acetaldehyde is a chemical that is a known carcinogen (cancer-causing chemical) in humans. There is no controversy about this among scientists.

How much does alcohol contribute to the incidence of cancer in our society? Drinking alcohol increases the risk of cancers of mouth, throat, larynx (voice box), esophagus (food pipe), colon, rectum, liver, and breast.

Narrowing our focus to only breast cancer — what this blog is about — reveals that every year about 15% of breast cancer cases and deaths are attributed to alcohol. That’s about 35,000 new cases of breast cancer and about 6,000 deaths. As a comparison, between 5-10% of breast cancer cases are due to BRCA mutations.

This is why this study — A comparison of gender-linked population cancer risks between alcohol and tobacco: how many cigarettes are there in a bottle of wine? — is a useful one. It quantifies a little-known risk in terms of a well-known risk.

The study concludes that one bottle of wine per week is associated with an increased absolute lifetime risk of alcohol-related cancers in women, driven by breast cancer, equivalent to the increased absolute cancer risk associated with ten cigarettes per week.

One bottle of wine per week is associated with an increased absolute lifetime risk of alcohol-related cancers in women, driven by breast cancer, equivalent to the increased absolute cancer risk associated with ten cigarettes per week.

That’s okay for wine, but what about other kinds of alcohol?

To better understand and communicate the risks of different kinds of alcohol, addiction specialists convert all alcohol to “standard drinks.” One standard drink is the amount of any drink containing 14 grams of pure alcohol. A bottle of wine has 5 standard drinks. Doing basic math, this study is telling us that in terms of cancer risk in women, driven primarily by breast cancer, 1 standard drink is the same as 2 cigarettes.

1 standard drink is the same as 12 ounces of beer, 5 ounces of wine or 1.5 ounces of hard liquor.

So, how many cigarettes did you smoke this week?

Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 183 views on Amazon, each one of them a 5-star review. Her husband, Dheeraj Raina, MD, now maintains this blog. 

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Lucky

It is impossible to avoid reflecting on my life with Uzma as I work on the book proposal for Left Boob Gone Rogue: My Life With Breast Cancer. Many years ago, my first and only proposal — not a book proposal — was when I asked Uzma to if she would marry me.

I was nervous. I couldn’t believe I was doing it. Not just popping the big question. But taking the risk to propose to a woman who was not just beautiful, smart and a go-getter, but whose national and faith background would make it an interesting journey should she say yes. Well, you’ all know what happened.

I am a complete novice about the book business and have never written a book proposal before. This should be an easier done than that long-ago proposal. Because Uzma is by my side. I am not writing this alone. The book is already done. In print. Writing the proposal is hard because it needs to include a sort of competitive analysis of other cancer memoirs. I have avoided reading cancer memoirs since Uzma got diagnosed in 2013. I felt no emotional need to read them while bearing witness to Uzma’s cancer journey.

So I finally read a couple. I was right not to read them before. Yet, strange as it feels to say this while steeped in sorrow and in a puddle of tears — I feel lucky!

Artists and poets are better at expressing emotions because they are better at listening to the emotions that we hide behind our words, faces, and body language. Uzma, an artist and a poet, from whom none of my emotions, whether good, bad, or ugly, were hidden, loved me for the rest of her life. I feel lucky!

Social media is intuitively blamed for many ills. It is blamed for increasing isolation. It takes keeping up with the Joneses to quite another level. Uzma showed me, from up close, how social media can be a force for good, helping us build new relationships and strengthen old ones. I feel lucky!

It’s not easy to be a Pakistani woman marrying an Indian man. It’s even harder to be a Muslim woman and choose an interfaith marriage. Uzma ignored the imagined boundaries of nations and faiths and loved me for the rest of her life. I feel lucky!

Living with stage 4 cancer is a nerve-wracking experience. Yet Uzma showed us how to do it with humor, grace, and gratitude. And I had a front-row seat to her show. I feel lucky!

At this moment in time, I don’t see how I will ever overcome the grief of her loss. She showed me how to love deeply, even if it hurts. Such an incredibly smart, beautiful, and loving woman accepted my proposal and chose me as the love of her life many years ago. Even in the depths of my sorrow, I feel lucky!

There are many challenges ahead. Raising resilient kids alone after such an ominous loss is the biggest one. But today, as I complete our — Uzma and mine — joint proposal and prepare to click ‘send,’ I feel lucky! And grateful. And hopeful. 

Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 181 reviews on Amazon, each one of them a 5-star review. Her husband, Dheeraj Raina, MD, now maintains this blog