His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. They were dull … dead.
I loathed myself for letting my first cat be put to sleep without me by her side. I swore I’d be there for my second when he passed less than a year later. I swore I’d look him in the eye, even if it meant nothing to him. And so I did.
The odd thing was that he wasn’t afraid. He was calm. He’d spent a good life of hunting, cuddling, and lounging. He knew his place in nature’s cycle. I didn’t understand that. Not then.
But my time came.
Sepsis destroyed me. As my soul ripped loose from my bones, I gasped to my girlfriend that I loved her but I would soon need to die. Then I pissed the bed. I realized that dying isn’t romantic like in the movies. I stank from rolling around in a soiled, sweaty bed, and my voice was hoarse from begging for an end.
While death isn’t romantic, it can be peaceful. In my time, I’ve known many who have passed — they’re either ready or they’re not. I wasn’t yet ready. I was ugly and bitter in my death, outraged by the unfairness of this world.
Somehow, I survived.
The paradox of death is that it teaches you how to live. The tragedy of death is not everyone gets a chance to apply what they’ve learned.
I woke up in an unfamiliar world. All details seemed illuminated and emotions felt overwhelmingly potent. I cried a lot more, hugged a lot more, prayed a lot more, loved a lot more.
Former priorities fell away; ambition, money, and comfort lost their gleam. Each day during recovery, I composed an obituary in my head: “Boy dies of cystic fibrosis. He had caustic humor, good grades, and a decent savings account.” I craved depth and vowed to thrive with passion and weave a legacy of compassion.
Did my old friend know I’m sorry for calling him fat in fifth grade? Did my sister know I look up to her? Did my parents know I regret every single time I lashed out at them? Did everyone know that I mostly only pretended to love, yet always yearned to learn its power?
I lay in my soiled bed and tried recalling instances in which I’d helped people out of love rather than for the potential of a self-serving debt. I sobbed at the realization that I’d lost myself long, long ago. In prayer, I begged for redemption, for help with becoming the Brad I was designed to be.
It’s been 47 months since that prayer. I’m nowhere close to perfect, but I’m far from who I was. Today, my joy comes from expressions of vulnerability, wide smiles and belly laughs, the bonds forged through struggle, the light in people’s eyes, the warmth of another body, the tears poured in prayers, the little acts of love and the big acts of love, the feet that tap along to music, the winding conversations over meals, the exhilaration of adventure, the richness of sharing nature and sunsets with strangers.
I am ready to die, when that time comes again, though I’d love to learn even more about life with a third pass. Death is liberating, driving me to be fully present and live intentionally for the things that truly matter.
Like my old cat, I know my place in nature’s cycle. Mine is to love and be loved in return. Maybe that seems sappy to those who haven’t yet died. But one day you’ll understand, too.
On a Brooklyn neighborhood forum, funeral director Amy Cunningham put out the call. Could anyone contribute items, like flowers, to an upcoming funeral? An elderly woman had died of coronavirus in a nursing home and had no family in the area. Florists in New York are closed, so one resident contributed lilacs from her backyard, the Associated Pressreported. Another embroidered “Mom” on some fabric that would be placed on the casket, with the deceased woman’s family watching via livestream.
More than 16,000 people have died of Covid-19 in New York City, the epicenter of the outbreak in the U.S. Just as hospitals have struggled to keep up with the influx of sick people, the city has also struggled to accommodate all of the dead. The state has relaxed environmental regulations to allow crematoriums to operate around the clock, and the city has dispatched a fleet of mobile morgues. Burials on Hart Island, New York’s mass grave for bodies that aren’t claimed, or whose family cannot afford a funeral, have increased five-fold.
Funeral directors like Cunningham have been forced to adapt ceremonies and services around the contagious disease. Cunningham, the founder of Fitting Tribute Funeral Services, specializes in environmentally friendly burials. She and I talked about how funerals have changed in New York.
This conversation has been shortened and edited for clarity.
How is your work different since the coronavirus outbreak started in New York?
Well, my firm specialized in earth friendly burials, home funerals, and witnessed cremation services, and none of those services are currently possible in exactly the same way I was delivering them. Because of the novel coronavirus, families are saying goodbye—on a good day—with nursing assistants holding the cell phone to the ear of the dying person in a hospital that the family hasn’t even been able to enter.
I’ve got four caskets in my living room right now. That’s a little unusual.
The funerals I’m managing now involve the transporting of the deceased person in a white plastic body pouch to protect the funeral home personnel from any risk of the virus passing to them in the hours after death. That bag isn’t coming off at the funeral home. While it’s believed that the coronavirus expires within the body at the time of a death, there is said to be some risk to individuals in the hours immediately afterwards, perhaps because the lungs of the dead person still hold a bit of air, and as we move them they actually can exhale a little bit after death. Plastic body bags are a fact of life for now, but they are upsetting to me. They’re hardly eco-friendly, not remotely green. I’ve got folks looking into how we could develop something just as sturdy and kinder to the planet.
Another thing that’s different is that previously, if a death occurred on a Tuesday I could arrange for a burial or cremation two days, three days later, sometimes even the next day if the paperwork went smoothly. Because of the sheer number of dead that we’re managing, cremations are now being scheduled at the end of May.
Are there any basic things you need in order to provide your services that are either hard to get ahold of or that you’re running out of?
It seems likely that there will be a casket shortage eventually. I’ve personally solved that issue by bringing caskets into my living room at home. I live in a two-story limestone row house and I’ve got four caskets in my living room right now. I went ahead and had the casket company deliver them, and had my son and husband carry them in so that at least I’d have some caskets that were clean and ready to move when I needed them. That’s a little unusual.
Have there been an influx of families that are in need of death care services but can’t afford them? If so, what are their options?
Yes, I’m hearing from people who need a funeral, and are disappointed that the wait time for an affordable cremation is so long. Some have lost their jobs, have no money, and need to plan a funeral with a burial now that might cost $1500 to $6000. It’s pretty devastating. There was a time when the deaths were occurring so quickly that some funeral homes weren’t able to manage the sheer volume of the work and were referring people out to other firms. Those firms were helping us New York City funeral directors cremate the dead by taking them to other states. There’s so many deceased people, our crematories are overwhelmed. So, there are people driving deceased folk up to Pennsylvania, New Jersey, other areas where the crematories are a little less overwhelmed.
In the coming month, that’s going to ease up. Today in New York as you’re interviewing me, I’m not hearing the same sirens out in the streets that I was two weeks ago. So it could be correct that, as Governor Cuomo says, we’re leveling this off. But people out of work are still struggling and starting GoFundMe pages to help them with the cost of the funeral.
I will say this, however: I’m really impressed with the local funeral directors that are reducing their prices for families in that situation. How can you charge them the full rate? It just can’t happen. So, we’re offering people our services at a reduction.
What does your typical day look like right now?
The heavy lifting and placing in the casket is done by amazing folks I employ to help me at the funeral home. My day is mostly on the telephone with grieving families, trying to schedule and arrange these burials and cremations in a timely way. I’m spending a fair amount of my time explaining to families why only 10 family members can come to the cemetery. We’re trying to educate folks about the possibilities and Zoom memorials and new ways to grieve remotely so that we can have some sort of commemoration of the life as we manage the very very basic down-to-earth matter of a simple disposition right now.
What has been your advice to people who have lost family or friends to coronavirus? Either practical advice, or different advice you’re giving on how to grieve?
I had already been thinking that we place too much emphasis on the hour-long funeral service. Saying farewell to someone is really the task of a lifetime, and something that you do most intensely over the period of the first full year. So I’ve been coaching families to see that, yes, we’ve lost the gathering we’re most familiar with, but you will be able to find a way to mourn, and find community, and relate to your other family members in a way that will be new but restorative in surprising ways.
When I do have a casket in my car headed for a burial, we’ve been replacing traditional chapel gatherings with doing these outdoor block parades. I drive the car with the casket in it onto the actual block where the deceased person lived, and people can acknowledge the death as a neighborhood. I had one death caused by a heart attack. We have to remember that other sorts of deaths still occur in the age of the novel coronavirus. I drove to the man’s block, opened the car, and allowed people to approach the car while maintaining a safe distance from each other. They placed flowers in the car, and then the immediate family drove to the cemetery and stood at the lovely graveside service 6 to 10 feet apart. Good funeral, lots of love expressed.
I know you specialize in sustainable, or greener burials. Are you still able to do those kind services?
Yes. My real contribution as a funeral director in this moment is personally driving people upstate to eco-friendly cemeteries that will just bury simple caskets in the earth. The only problem is that there is this plastic body bag inside there that I never used to have to use. Most of the eco-friendly cemeteries are saying, “well, God, what can we do, we know it’s a crisis in our country, and a time of considerable suffering.” So, they may take that plastic bag for the short term as we work it out. In other words, the green burials I’m managing are just a bit less green than they used to be but we’re doing the best we can.
Do you think the pandemic will lead to any lasting changes in the funeral industry?
I hesitate before mentioning this because it doesn’t feel like a great time to criticize the conventional funeral industry. The men who have been in the business 40 years and were nearing retirement have flung themselves into this crisis and been so courageous.
However, maybe when we catch our breath, we’ll evaluate where we’re headed as an industry and how we might provide better services to more people, and take the drive to profit from the funeral out altogether by looking at cooperative funeral home structure, which is operating very successfully in the state of Washington.
In the old days prior to the Civil War, before the American funeral industry was formed, communities took care of their own. And it feels to me like we could attend to that kind of care again and find ways to make deaths less of a medical event, and more of a community-based experience. So, as I work hard and admire the conventional guys I know and work around, I’m at the same time thinking, “Gee, there must be a better way to give funeral services to people at an affordable rate, and in a loving way.”
Even before I uttered a word, my son knew something was off.
My flustered movements alerted him to a shift in equilibrium in the house. The statewide coronavirus shutdown had just been announced, and as I struggled to wrap my head around the profound adjustments I needed to make, the fear of a grave illness was rivaled by an entirely different threat: How would I explain the crisis to my profoundly autistic 19-year-old son?
Zack’s language and comprehension are truncated; he has no conspicuous understanding of global adversity, personal sacrifice or collective safety.
The stakes of being truthful were greater than you might imagine. I’ve gone to extraordinary lengths to ensure that Zack fully participates in his community, even forcing him to remain at indoor venues he feared such as movie theaters, restaurants and airplanes. My “inclusion by fire” methods feel vindicated by the fact that Zack regularly navigates the world with competence and zeal.
But there is one dire exception — his absolute intolerance of unexpected closures. Zack has no interest in the reason: All venues should be open according to his schedule. Delivering news of a sudden closure — of a splash park shut due to lightning, a movie sold out — is perilous. In seconds, Zack lashes out in frustration. Sometimes I absorb the blows and hold my ground to enforce upon him the reality that disappointment is a part of life; more often I scramble for alternatives to distract him.
And now I couldn’t. For a young man whose life quite literally revolves around predictable schedules and recreation, virtually everything he depended upon had been eviscerated overnight.
In March, I sat Zack down and explained: “Zack, I need you to listen to me, something very scary is happening. You know how awful it feels to be sick? Well, a sickness is spreading across the whole world, and our job is to help keep people safe. So for now, school is — closed. Movies are closed. Indoor pools are ….”
I braced for impact, but instead Zack studiously began echoing the refrain of “closed.” I was astonished. In the weeks that followed, Zack’s ability to adapt to his constricted life far exceeded my expectations and reinforced my decision to tell him the truth.
Except I had not told him the whole truth. Zack had no notion that, as he rode his bike carefree against the wind, people were dying. Zack had no concept of death. Because I hadn’t summoned the courage to explain it to him.
I’ve always considered my most important job to be arming Zack with the knowledge and experience to function as competently as possible in the world, especially after my husband and I are gone. But I have not prepared him for the fact that we will be gone. As I listened to stories of beloved mothers and fathers dying, I was gripped with heartbreak and fear — would I further postpone and hope neither of us got sick?
That felt immoral. It was time.
“Zack, I need to tell you something serious,” I began. “Many people are getting sick, and some of the people who go into the hospital to get help will not get better. They will die from this sickness.” Zack is a literal thinker who deals in absolutes and concrete visuals, not abstractions. So in response to his quizzical stare, I turned on the TV to still frames I had taped of body bags being moved into a truck.
“Zack, these bodies are ….”
“Sleeping?” he asserted, tentatively.
“Broken?” he then offered, borrowing a concept he applies to objects that I’ve reassured him would soon “be fixed.” Dreading his response, I answered, “No, they are not asleep or broken, they are dead. They will not wake up. They were too sick to be fixed. They are ….”
“Closed,” he whispered gravely.
A huge exhale escaped me. “Yes, Zack, they are closed,” I said, explaining through tears that this happens to every person at some point, that their life comes to an end. And how, even when people die, as hard as it is, the rest of us have to keep living without them.
Zack became still. His countenance darkened as he processed my words — and then suddenly he lashed out. But the target was the TV, with its cruel, wintry images of death, as Zack smashed his fists into the screen and even his own head. The universe was once again disordered and the outcome unacceptable to him. I interrupted the exertion not to comfort Zack but to redirect his blows toward a wall sturdy enough to absorb them. He was incredibly infuriated, which felt entirely appropriate. More essentially, with each strike I was certain the excruciating lesson was being slowly, agonizingly absorbed.
So far, Zack has not openly made the intellectual leap that this state of permanence, which is “closing” the lives of so many right now, will one day end mine and my husband’s. That he will one day lose us, but must persist. Now is not the time to make that linkage, but it will come. Engraved into his consciousness of how the world operates is a new notion that while some closures are temporary and fixable, others are unchangeable. For now, that is enough.
A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions.
“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says principal investigator Maureen E. Lyon, Ph.D., a Children’s National Hospital clinical psychologist.
“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr. Lyon. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other.”
While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care – and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions.
The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions.
The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families’ did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices.
The findings from the study can be found here in the article “Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.”
Palliative, or end of life care can help people with terminal conditions, such as cancer, live as well as possible for as long as possible – and allow them to die with dignity. But end of life care is not a straightforward process. And for patients from the LGBT community, the process presents a whole host of barriers that they and their families may face.
Not only do many people from the LGBT community face difficulties accessing high-quality end-of-life care, they also may face issues with their care. This may sometimes be because of ignorance and prejudice against them during pre-hospital admission. It may also be due to poor communication between patients and care providers about treatment plans, judgement by staff about a patient’s family or relationships, and a failure to properly support the spiritual needs of the patient.
Many have also experienced victimisation, discrimination and personal hardship as a result of their sexual identity throughout their life, and may feel that telling a healthcare professional about their sexual identity would change their interactions or quality of treatment.
Staff may also be unaware of an LGBT patient’s particular needs or how to meet them. For example, patients who have undergone gender reassignment may have been married previously in their former gender. They might have children and grandchildren. Dealing with current partners, spouses, former spouses and children during end of life care takes particular skills, which requires specialist training. As many in palliative care want to be surrounded by loved ones, healthcare workers need to be trained to deal with these types of situations.
Many LGBT people may also hide their relationships, meaning that healthcare workers may exclude key individuals from their loved one’s end of life care. Other factors that can impact end of life care include whether an LGBT person lives alone, if they’re socially isolated, and if they face barriers to services or lack consultation. Ageism, and past negative experiences relating to their sexual orientation or gender identity, might also impact the care they receive.
Bereaved LGBT partners and spouses have also been found to experience less support during the death of their loved one. They complained of being shut out of the care process and ignored.
Healthcare professionals also aren’t typically trained to address the specific needs of the LGBT community when it comes to end-of-life care. These needs will include the need for confidentiality and communication from healthcare providers that is sensitive to their sexuality and preferences. Many LGBT people may also feel too vulnerable to disclose their sexual identity while receiving this type of care, which may make their final months lonely.
Room for improvement
Research shows that LGBT people already have lower health outcomes, partly because of ignorance of LGBT issues among healthcare practitioners. For example, they may not receive routine cancer screenings, and may not be able to access adequate healthcare services.
But many of the shortfalls faced by the LGBT community during palliative care are prohibited and protected by the Human Rights Act 1998. Article three states that no one shall be subject to torture or to inhuman or degrading treatment or punishment, while article eight protects a person’s right to privacy, respect for their sexual identity and the right to control information about their private life.
The issues addressed in articles three and eight have been interpreted by the courts as including how a person plans their end of life care. This means there could potentially be legal redress for any person who feels that their wishes and feelings relating to end of life care aren’t being taken into account by the healthcare workers looking after them.
There are two particular aspects of good end of life care that many LGBT people find are most important to them. First, they want their care to focus on their individual needs. Second, they want their partner to be accepted.
Currently, there are recommendations in place for caring for those from the LGBT community in palliative care. In order to ensure that LGBT people receive the best end of life care going forward, it will be important for healthcare workers to have better training.
Better training will ensure they can communicate properly with LGBT people about their needs and understand their situation. Training will need to include understanding equality, diversity and confidentiality, as well as understanding the unique issues LGBT people face and how this impacts end of life care. Staff or other residents should also report any discrimination to prevent it from continuing in the future.
Today, Mary and I volunteered at the St. Vincent de Paul Food Pantry. I looked forward to getting out of the house and doing more than take a walk. Mary sewed face masks for us and we got gloves to wear when we arrived. Four National Guardsmen were helping. I felt good that I could pitch in and help. Looking at my coworkers wearing face masks and gloves felt a little surreal. I felt grateful for the service of the four Guardsmen wearing protective gear and doing the most dangerous task of loading food boxes into cars.
I can’t believe I just wrote that. Who would have thought loading a car with a box of food is dangerous, even life-threatening? As someone wrote, it feels like we’ve all entered a Stephen King novel. Is this the future? Face Masks? Social Distancing? Gloves? Troops loading cars with food?
1. We feel on edge and are not sure why — hypervigilance; we scan the news regularly.
2. We feel angry and out of control — working at home is not fun anymore, and our favorite brand of mac and cheese hasn’t been available for weeks.
3. We focus on the worst-case scenario — ruminating about an apocalyptic version of the future.
4. We feel exhausted — our worry and stress hormone, cortisol, floods our body and zaps our energy. We read posts about how productive and creative everyone else is, and we find it hard to do anything more than read a novel.
5. We avoid telling anyone how we are feeling. “I am having an awful day today.”
No wonder we have these feelings. We are experiencing a lot of loss. Dr. Doreen Dodgen-Magee identifies loss we experience in her article: Necessary Self Care During COVID: Working through Loss. We’ve lost some financial security, the ability to buy what we want, the opportunity to travel and meet with people. And we’ve lost the feeling that we are in total control of our lives.
Some Things We Can Do.
i. Connect with someone even if we don’t feel like it. Social distancing does not mean cutting off communications.
ii. Name what we are feeling and tell someone about it. “I’m not doing so well today.”
iii. Stay fed, hydrated, rested, and get exercise. Make this a priority.
iv. Try doing something a little creative. Write a poem. Draw a flower. Take some pictures. Start a scrapbook. Learn to knit. Check out YouTube for countless creative ideas.
Step Back a Moment in Compassion.
This is a tough time, and our reactions and the reactions of our family, friends, and neighbors will be different and changing. Instead of lashing out in judgment, try stepping back in compassion. We have some challenging weeks ahead, maybe longer. Instead of looking to a time when it will be over, focus on what is happening right now.
So much is out of our control. Let’s look for what we can control in the here and now.