Guest Posts

Memoirs of a Cancer Orphan

Today’s guest post is written by Lynsie Lee: 

 

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Fetal Position
by bentolman

They say you can’t help someone if they don’t want it for themselves. You can shove resources into their face, offer time, money, every ounce of yourself. But if they don’t want help, there is nothing you can do. Sadly, this is the case with my mother while she is dying from cancer.

Maybe she’s in denial. Maybe she is still trying to be the strong, independent woman that raised six children on her own. But now, when I walk into her dark, dingy apartment – the smell of old dishes and mildew filling my nostrils – I feel like maybe she just wants to die.

She has disconnected herself from us; much like when she was an alcoholic. We don’t know how to feel, what to say to her, how to help her. She has abandoned my siblings and I and it’s beginning to feel like she is already gone.

My family has always been the epitome of dysfunction. Our mother kept us from knowing relatives, so none of us have ever dealt with a death in the family. Questions, stresses and frustrations all swarm my mind when I think about when she actually does pass- not fully for the pain of the loss of my only parent, but for the realization that we will have to plan a funeral.  The dread of needing to clean up an apartment that has been hoarded in for nearly 30 years. There’s also the weight on our shoulders of what to do with our eldest sister who still lives there because of psychiatric issues that our mother chose to neglect and refused to address. My mom is choosing to let herself die and leaving us to handle all of the issues she never could.

I’m not angry with her, which I know is a stage of the grieving process. I refuse to have anger toward somebody that did what she could with what she had (mentally, emotionally and physically). I spent enough of my childhood and adolescent being mad at her, hating her, wishing she would die. But now she is dying and it kills me to think that this is what she wants.

It kills me to see her curled up in a fragile ball on a couch surrounded by boxes with all of the light bulbs in her home burnt out. It kills me that my eldest sister has to live in these conditions and see this image every hour of every day. And it kills me that my mom refuses to let us improve this.

I’ve been grieving publicly for a few weeks and while it does mean a lot to me when I receive condolences, or when others relate with their own personal losses to cancer, I still feel alone in the fact that my mom is dying in these conditions. She’s choosing to be alone in these conditions. She’s choosing to abandon her children when she is all we have ever had.

I tried expressing to her the other night that I was sad and scared and she told me to leave her alone, that she just wanted to rest. You can’t help someone who won’t accept it. My mother doesn’t want help. My mother wants to die.

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From Caleb: As a funeral director, I’ve had to learn to control my emotions.  Not because I’m a selective empathetic, but because grieving families need me to be the level head in the midst of grieving souls.  But I couldn’t control my emotions when I first read this post.  I cried.  I cried because Lynsie pulled me into her story.  I cried because I’ve served families whose loved one’s have chosen to die alone.  By their own choice.  I’ve seen the empty pain in those left behind.  The helpless pain.  The grief that has been disenfranchised by the one who has died.  When someone chooses to die along, it leaves behind a lonely grief.  An orphaned grief.

I hope this post finds its way to other “orphans” because I know it will give them a small sense of comfort, knowing that although your loved one has barred you from grieving, there’s a community of the lonely … an orphanage for the lonely grievers.

Thank you Lynsie for being willing to share.

 

What Exactly is Grief? A Guest Post

Today’s guest post comes from the innovative Jeff Staab.  Jeff was a funeral director for 20 years; and eventually translated that experience to his entrepreneurial enterprise “Cremation Solutions”.   

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What is Grief?

Grief is defined as a state of extreme sorrow, especially caused due to the loss of a loved one. Grief is also accompanied by many other emotions depending on the type of loss and the kind of emotional attachment one had with the deceased. Irrespective of the cause of death and other similar situation, the pain is much more than a person is usually able to handle. There are other situations like paralysis, Alzheimer’s’ disease or a person gone missing when feelings of loss are felt.

The term is mostly used when someone witnesses the death of a loved one but the symptoms can also be seen with the loss of a job, children growing up and leaving home, disability, moving from one city to another. I was recently served with a Divorce from my wife and trust me it feels like death! The grief can feel the same whether the death is sudden or followed by prolonged illness. It basically is a mental condition and its extent varies with every individual.

Grief is further classified into disenfranchised, traumatic and complicated grief. While traumatic grief is due to a major unexpected event like a natural calamity, attack or any other violent method. This type of grief is often accompanied with anger, hatred, fear etc. Disenfranchised grief is relatively difficult to recognize and occurs due to smaller events like disability, loss of job, chronic illness, break up or any other public event. Complicated grief is the most difficult to identify and deal with.

Is Dealing with Grief a Part of Your Profession?

Loss and death are natural and inevitable truths of human life and we do need to create businesses to deal with these situations also. There are certain professions that have to deal with death and grief on a daily basis. People working as a doctor, nurse, paramedical, in funeral or insurance industry, police force etc have to learn how to deal with the extra stress of grief and sorrow. For an empathetic person, someone else’s grief also feels like his own and at times it becomes difficult to cope with it. I feel as a funeral director that for me to do a good job it’s impossible not to absorb elements of others grief. I tend to submerge myself into the situation and try to feel myself in their shoes to truly understand the needs of those I served. I probably should have been better at the art of disassociation because at year twenty I burnt out as they say, and became depressed for the first time in my life.

Working in the funeral industry is especially tougher because the medical professionals also get the opportunity to save people’s lives but this day never comes in the life of a funeral consultant. Thank god for the families that show appreciation and thanks. This is a tough job and it is real service to be around grieving people and give them the comfort and help them go through their pain till they reach a state of acceptance. Grieving people often become cranky and sensitized, so if there is any mis-communication , it is difficult to negotiate or remain stern with such clients. However, with time, you can prepare yourself and learn to be emotionally strong during these times.

Dealing with Your Own Feelings of Loss

As a funeral director I have attended many funerals and often found it hard to hold back the tears. We need to look strong and in control right! I cry like a baby now at weddings and tell others it’s from the buildup of having to hold the tears back at all those funerals. If you have suffered a loss, you know how it feels and seeing someone else in the same state may bring back your own feelings. Do not try to bury your feelings but learn to accept them. Death of a loved one is a prominent event of life and it takes it time to heal. Just because you are a person with a positive attitude, it does not mean that death of a loved one will leave you unaffected. Accept it as an inevitable life event and let it take the time it needs to heal. With this acceptance, you can feel better during the entire grieving process.

The trick is to let go as much as possible. Keep yourself busy with the daily activities. The tasks you usually delegate, do them yourself for a while. Keeping yourself physically active will also help you feel positive again and keep your mind in balance. Do not try to forget the person magically and feel bad when his or her thought come up. If you have spent a memorable time with someone, you definitely deserve to remember it.

Slowly, learn to move on. Keep faith in the almighty and accept that some things are just meant to be. Stop questioning and that will make life a lot more easier. It is important that you let go of the possessions of your loved one. The more you cling to them, the more you will remain miserable inside. Avoid getting into the state of denial and continue living the way you did, going to the same places, doing the same activities, eating the same food as you did with your loved ones. This will only deepen the grief and make it more difficult for you to carry on.

Being Around Someone in Grief

Most of us face the situation when we need to be there for people in grief. Many of us feel awkward in such situations and do not know what to say and how to react. The most important thing is to be there for them. If you don’t know what to say just don’t say anything. It is fine to be quiet at a funeral. Do not let the situation make you feel so awkward that you avoid it. A person suffering from a loss does not want more people to leave him alone whether you are a close friend, family or a stranger.

Most cultures have a huge gathering when someone is no more. Funerals should not necessarily be private or small. Having people around definitely helps. Just let them know that you understand and you care. It is not the best time to give them spiritual knowledge of how life and death don’t matter. If you know the person, feel free to talk about him a little. Share the feeling of grief and shed a few tears if you feel like.

Not many people think about it but a helping hand with the cooking comes as a great help during time of grief. Make them some tea, bring them cooked meals, do the dishes and take the garbage out. Practical help is much better than long condolences. Accompany them for routine tasks like shopping etc and drive them to public places once in a while.

Signs of Unresolved Grief

We often think that time heals everything and simply assume that the grieving period is over for someone just because few months or years have passed. In fact, the grief does not completely go away for most people. If the grief was not completely expressed initially, it may be piling up and explode at an inappropriate time. If there has been a violent activity involved with the loss, post traumatic stress can be seen. These symptoms can be identified as loss of appetite, inability to sleep well, constant headaches and backaches. All of these are signs of accumulated stress.

This happens when the person does not feel comfortable to share or express his feelings either publicly or privately. To avoid such conditions, it is advisable to attend funerals for people you care about. When a person hears others talking about the deceased, they also express themselves even if they are afraid to. If the grief is already accumulated, there are many ways to take care of it too.

Some Activities that Help Manage Grief

There are many things that you can do to keep yourself busy. Depending on your interest, you can choose an active sport or a creative hobby to devote some of your time regularly. Indulging in such activities will bring your mind back to the present moment for a while. You will get freedom from the anxieties of the future and memories of the past. Joining a dance class is a great idea because it will keep you physically and mentally occupied. Physical activity has been scientifically proved to reduce the stress hormones in the body.

Learn to meditate. It might be difficult at first but as you continue trying, it will heal you perfectly. Do not opt for an online meditation but rather go to a class to keep you committed. You can also get a massage or a spa treatment done. You might not feel like it, but go anyway. These are subtle techniques that reach and work at a level where you cannot reach on your own. .

Sometimes in life, we face situations that we are not prepared to handle. At these times, it is out faith in God that keeps us going. It is always helpful to attend a church or get exposed to other form of spiritual knowledge based on your religion and beliefs. It is possible to live a happy and healthy life in spite of the situation you are facing. There are many people who have faced big setbacks in life and still came out strong to face the world.

Remember than every situation that comes in your life can only make you stronger. Don’t only speak it but also live by it. Be thankful for the time you got to spend with your loved one and think of people who do not even have that much. Engage in community service and your heart will mend. Do something new, visit new places, make new friends. Take your time but get back to life head on.

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Death Warmed Over: A Funeral Food Recipe

390We in the Western world consider the concept of being a little bit dead along the same lines as being a little bit pregnant: it’s simply not possible.

Many cultures would politely disagree. For some, not only are there different degrees of dead, but they also like to keep the bodies around until they concur that the person is 100% dead, or at least 100% able to proceed to the next world, wherever that may happen to be. Of course, in the interim, the almost-dead still have to eat, so people in these cultures continue to serve food to their undead relatives, usually foods that were favorites of the person when they were 100% alive. Sometimes the type and amount of food served to the formerly-vibrant family member depends on how dead – or almost-dead – he or she happens to be.

It’s possible that the practice of feasting after a funeral originated with early people who were determined to send their dead off with some nourishment for the journey. And whatever was left over, well, at least the living could eat it. Some cultures took this to extremes by placing a tube in the mouth of a corpse before burial, and snaking it out of the casket and up through six feet of compacted dirt. This was to ensure that the deceased would continue to receive nourishment during the long journey into the afterlife, or at long as somebody remembered to put food in the tube.

But a long journey for mourners attending a funeral may have also been responsible for the development of some death food customs. After all, it would take a number of days for word to travel about a deceased relative living in a distant village, and then an equal number of days to travel to view the body and visit with the mourners. If the grieving family expected others to come, they had to be prepared to feed them.

For most cultures today, sharing a meal after the funeral has become pretty standard; indeed, it’s considered rude to refuse. In any case, there’s no better way to prove you’re alive, as compared with the body in the box you’ve just said farewell to, than by eating. Actually, most people would include sex in their response, and indeed, food combined with carnal hunger can sometimes provide a double dose of post-funeral vitality, not to mention a jump in the birth rate exactly nine months later.

However, as funerals become more of a do-it-yourself proposition – not the embalming, mind you –with more people taking charge of planning their own funeral services with a mind towards turning it into a party instead of a sobfest, thanks in part to the popularity of the TV show Six Feet Under, learning about the funeral practices of other cultures can only help us put the fun into funeral.

Some people may believe it’s distasteful to spend time thinking about how death and food are so interconnected – after all, both are an essential part of life – but I’d like to think that many more are intrigued by discovering the differences, as well as the similarities. And my book Death Warmed Over: Funeral Food, Rituals, and Customs from Around the World – which I’ve recently reissued as an e-book after being out of print for years – is chock-full of both differences and similarities.

Here’s how Egypt does it:

Today, Egyptian culture is primarily Muslim, and funeral customs in the country generally follow traditional Islamic principles, including the distribution of food to area poor.

But aside from today’s Islamic rituals, Egyptian funeral food has a long and illustrious past. In fact, possibly the first time you learned that food was connected with funerals – aside from attending one of a relative – was in history class when you got to the chapter about the Egyptians and the Pyramids. Though evidence of fancy, elaborate feasts that lasted for days was uncovered by archaeologists working inside the pyramids, the common Egyptian also received a funerary feast send-off into the next world. In fact, the earliest known Egyptian funerals show proof of food offerings to the dead, both to the newly deceased and to the family’s ancestors. It seems that the living always went all out, as if to ensure a place for the deceased as well as an opportunity to get in good with the gods upstairs for when their time comes.

Everything from beer and wine, cakes, and even the intact head of a bull were used as funeral offerings in ancient Egypt. This makes sense, when you consider that in the days of ancient Egypt, each man was expected to devote one-fifth or more of the value of his estate to the cost of his funeral, which included feeding all the guests – both the living relatives and the dead ancestors.

In Ancient Egypt, chocolate was very much prized as a rare and expensive delicacy, the better to send the deceased off to the other side. Today, few mourners – in Egypt and elsewhere – would find fault with digging into a big hunk of chocolate cake at a funeral, wake or memorial.

Ancient Egyptian Chocolate Cake

1-3/4 cups unbleached flour

2 teaspoons baking powder

1 teaspoon cinnamon

1 teaspoon ground cloves

4 ounces (4 squares) semi-sweet baker’s chocolate

1/2 cup brewed coffee

1 cup sugar

2 eggs

1 teaspoon vanilla extract

1/2 cup unsalted butter (1 stick)

2 cups whipping cream

1/4 cup sugar

2 teaspoons vanilla extract

1/2 teaspoon cinnamon

Chill mixing bowl and beaters. Whip the cream until stiff, add slowly the vanilla, sugar, and cinnamon. Do not overbeat!

In a medium-sized bowl, sift together the flour, baking powder, cinnamon, and cloves. Set aside.

In a small saucepan, combine the coffee and chocolate over low heat until chocolate is melted. Set aside.

Preheat oven to 350 degrees. Using an electric mixer on low speed, cream the butter and sugar until fluffy. Add the eggs, one at a time, beating until smooth. Add the vanilla and the chocolate mixture until smooth. Add the coffee-chocolate mixture and the flour mixture, beating until smooth.

Grease and flour two 8-inch cake pans. Pour the batter into the pans. Bake in oven for 30 minutes or until a tester comes out clean. Cool in pans on rack for 15 minutes. Invert pans and cool cakes on rack completely.

While the cake is cooling, prepare the frosting. Using a chilled mixing bowl and beaters, whip the cream until stiff. Slowly add the vanilla, sugar, and cinnamon. Chill until ready.

Frost when cake is cool. Refrigerate after use.

Serves 10

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Today’s incredible guest post was brought to us by author and journalist, Lisa Rogak.  Lisa is the author of “Death Warmed Over: Funeral Food, Rituals, and Customs From Around the World.”  

She is the New York Times bestselling author of more than 40 books. Her works have been mentioned in The Wall Street Journal, Parade Magazine, USA Today, Family Circle, and hundreds of other publications, and she has appeared on Oprah. Her book Haunted Heart: The Life & Times of Stephen King was nominated for an Edgar.

You can also visit her website, www.lisarogak.com.

 

“This is How We Die”: A Morning with a Hospice Nurse

Illustration Credit: Anna and Elena Balbusso

On Tuesday morning all I knew was that I was setting up an O’Connor table at the Heartland Hospice event that we were co-hosting. I got the table cloth & brochures all set out, greeted the attendees, and sat down in the back intending to “work” on my computer when the speaker, Barbara Karnes, a hospice nurse of 32 years, began speaking.

She said, “I don’t want to pretend that this is all Truth with a Capitol T.

This is MY experience.

Dying is the hardest thing we live through.”

(and you do live through it, that is, until you die) 

That got my attention. I had the privilege of sitting for the next two hours hearing the stories and wisdom of this nurse. I typed out as much as I could of what she said, filling up 4 pages of notes and still not capturing all the information. –

Here are some of the incredible insights she gave me about death that Tuesday morning:

“We don’t die like the movies” - She mentioned scenes in movies where the dying person looks beautiful and radiant, perhaps they’re imparting some incredible words of wisdom that wrap up the whole story perfectly and then, they die . . . “This is not how people die,” she said. When people are dying of disease or  cancer, the kind of people she gets to work with on hospice. “They don’t have the energy to speak, and if they are speaking, you probably can’t hear or understand what they are saying.”

“If they are a controlling person, they will control how and when they die” - She said that protective spouses or parents want to spare their loved ones from being there when they die. They will wait until they are alone to let go. She also said that if they want you there when they are going to die, then that is what will happen.

“No one dies alone” - Barbara said that all her years of experience have convinced her that we are ushered into the “other world” by the loved ones that have gone before them. She recounted the story of a 23 year old girl she was caring for whose brother died 3 weeks before she eventually would. The family chose not to tell her about his passing but shortly afterward all she could talk about was “Jim, Jim, Jim,” her brother. Her boyfriend thought she was confused, but then she looked at him and said, “No, I know who you are, Jim is here and says he’s going to take care of me.” Barbara recounted other stories like this, I’m pretty sure there wasn’t a dry eye in that room.

“Dying is always, always sad, it will never be ok. but it doesn’t have to be BAD.” - this is how you take something scary and negative and make it into a more normal and natural process that helps neutralize the fear.

Barbara inspired me and gave me truth and honesty about an element of life most of us know very little about. She changed how I see dying. She spoke about it with so much familiarity, knowledge, comfort and gentleness that it took out so much of the frightening mystery that dying is cloaked in. It will never be ok, but it doesn’t have to be bad or frightening.

To hear Barbara’s own words about dying, click here Gone From My Sight. To obtain a copy of her book,“Gone From My Sight” please contact Becky Lomaka.

What do you think of Barbara’s premises?’

In your experience, have you seen any of these played out?

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From today’s guest writer:  Hello! My name is Molly and I am the Communications Director for O’Connor Mortuary in Orange County, California.  I had my first exposure to a mortuary as a newborn when my parents took me home to their apartment above a mortuary in downtown Long Beach. Growing up as a mortician’s daughter it’s fair to say that mortuaries have had a profound role in my life; they have shaped my perspective, grown my compassion, and become an integral part of my identity.  In 2011 I obtained my masters degree in English literature and was amazed to find a job at a mortuary that so beautifully fused my passion for writing and quality literature with my passion for those in grief. I am driven to provide bereaved people with valuable resources and to educate our community on the value of ceremony and personalization. I am proud to work for such a fine establishment that fits me so well and that gives value to what I do.

Just Keep Swimming

Today’s guest post is from Jessica Charles.  This from Jessica: I am Corporal Joshua Alexander Harton’s Big Sister. I am his sister and I protected him his whole life. That is until September 18th, 2010 when a bullet from Taliban’s rifle went through his neck, cutting his carotid artery, moving through his torso and destroying organs and finally leaving his body at the left hip and shattering his Kevlar armor. I am Josh’s sister and I need you to know that my little brother is dead and my epic life will never be the same again.

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What is living with PTSD like?

Uh, it is like….ummm well, you know.

And then people think Rambo:First Blood or some recent tragedy where a returning soldier kills his ex wife and her boyfriend.

It is NOT like that.

It is a lot like Finding Nemo, the kids’ movie where a father crosses an improbable ocean to save his son learning lessons on the way.

Try and remember the movie and I will outline it as I go. This explanation should be so simple that even civilians can follow.

The movie starts with Mommy fish and Daddy fish (Pearl and Marlin) admiring their new home and envisioning the future life of their many children. Then tragedy strikes. A big fish eats the babies and the mommy fish defends them, she also dies (And I thought Bambi was bad).

One egg survives, and Marlin (dad of the year) promises that from this moment on “Nothing will ever happen” to his baby Nemo.

Marlin has PTSD. Marlin spends the next few years (or however long it takes in fish time) protecting his son from EVERYTHING, because in truth, the world is a scary place and it will kill you. And it would seem paranoid and crazy except that Marlin is often proven right.

His son dares to leave the safety zone and is kidnapped. Marlin follows and is almost devoured by sharks, blown up, eaten by a monster fish with a flashlight, lost, shocked by jellyfish and lost again only to be eaten by a whale. Life is bad, and that is the only lesson Marlin can learn because it is the lesson he already knows.

Dory his adorably absent minded buddy doesn’t have any preconceived lessons. She “just keeps swimming”. To Marlin she is an imbecile because everywhere they turn there is obvious danger. Danger is all Marlin can see. And he isn’t wrong, but as Dory teaches him, he isn’t entirely right.

If Marlin hadn’t tried to force Dory away from the sharks, well there would have been no bloody nose to insight the hungry beasts. If Marlin hadn’t been so rude to the school of fish, he would have gotten directions earlier and more completely and would have avoided the jelly fish all together. In Marlin’s haste to protect himself from the world he makes it a more dangerous place. That is what living with PTSD is like.

I have always had PTSD. I have always lived in a world that was scary and dangerous and I have never been good at seeing the world as a place of both danger and joy. Someone once said, “The war is over.” And with the intensity of someone who feels threatened, I screamed, “No sir, it is still going on”.

It is true, I am still at war, still in war and still protecting myself from the enemy. The enemy is the world and as Marlin learns not only can you not protect yourself or your beloved child from the world, you shouldn’t because as Dory says, ” Well, you can’t never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo”.

Not much fun… yeah, fun, thriving versus surviving. Learning HOW to do that, instead of just over thinking every moment until you can plan for all foreseeable outcomes except the one where you may enjoy yourself.

So what is living with PTSD like? It is like Finding Nemo. And I hope everyone out there has a little blue buddy who can help them out, even if some days it is all you can do to just keep swimming.

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You can visit Jessica’s blog at “Always His Sister.”  And you can follow her on Twitter.

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