Our loved ones who pass on are still with us and are able to help.  During the six weeks between my husband’s diagnosis till his death, I maybe slept an hour or two at a time.  Jordon’s pain could not be kept up with and I was constantly having to change his medicine protocol so sleep really wasn’t much of an option.  Oh yes.  This is how end of days go for many of us who have loved ones pass away.  There are doctor visits and home nurses that come to see us, but its the caregivers that have full responsibility. These are the things we don’t talk about much but we need to so that others can understand why we are the way we are now just a little better.  I lost my sense of time completely during those six weeks.  It had absolutely no meaning to me and its been real tough trying to get that back even after two and a half years.  All I was focused on was the next hour of our lives- forced compartmentalization of the day for my mind.  So sleep didn’t matter anymore.  And yes, many caregivers of terminally ill people go through more than you can ever imagine.  Because unlike doctors and ministers who work with the dying, we are working with our loved ones who are dying.  Caregiving takes on a whole new meaning for those of us who go through something like this with someone we love.

For the last 2 weeks of Jordon’s life I didn’t know when I went to sleep as to whether or not he would still be alive next to me in the morning.  That experience changed me for the rest of my life.  And there are no words to describe it. BUT….Here’s my point. The days following Jordon’s passing I had an amazing peace come over me as I went to bed each night.  Somehow I would fall into a dream like sleep and not even wake up with dreams or nightmares.  Nothing. Just peace.  And to have that happen can only be explained by the comfort they can bring us afterwards.  Looking back it makes complete sense.  And to be honest, I knew it then too. Jordon was always worried about my inability to sleep.  And this was his way of caring for me.

Tonight my son had a terrible hand injury during a football game.  A heavy 200 pound offensive lineman crushed his cleat onto the top of my son’s hand leaving every coach and doctor that saw him in the ER without a doubt that he had multiple breaks. BUT… They came back into the room and told him what a tough cookie he was with big strong bones.  The X-ray showed no broken bones.  And soon after we left the hospital the swelling went waaaaay down and he felt peaceful with very little pain.

Look, I believe.  There is not room left in my mind that tells me otherwise that my husband and my son’s father is with us, watching over and protecting.  I need to remember that more often.  Thank you, Jordon.  You amazed me in your life and you continue to amaze me now.  Jackson and I love you.

 

 

 

I just want to have a little kidding time here and throw some advice back towards all the ones who feel its necessary to give those who grieve some advice with having never experienced grief before.  99% of the advice thrown our way comes from either good intent  or fear.  People try, and we really do have to at least give them some credit.  After all, we WERE them at one time.

Anyway, I want to throw some experienced advice backacha.  And not out of bitterness, but only from good intent.  I would have loved to have known then how amazing those days were when we were poor as church mice.  My husband and I started off small but mighty.  We both had real potential in the corporate world.  But early on, we decided family was what was most important.  So I quit my job in the pharmaceutical industry and stayed home to be with my young son.  We cut back and bought a little townhouse outside the city.  I shopped at Goodwill for our clothes.  We drove one car, so I took my husband back and forth to work every day so we wouldn’t have an extra car payment.  And our family trips were to see relatives and family.  These were the very best moments of our lives, me and Jordon.  We were very much in love and planning and parenting and enjoying everything that young marriage has to offer.  It was awesome.

And so was being a mother for the first time.  Oh my goodness, it was a dream.  I never thought of having children before I met my husband because I was entirely career driven.  But this man and this baby stopped me in my tracks and I finally found my calling.  My family.  I stayed with being a stay at home mom for 2 years and then finally needed to go back to work and my son needed to see someone else’s face besides mine, so I went back.

From there our careers flourished and so did my son having all the attention and love poured out to him.  We kept climbing and we finally found ourselves at the top of our games on many, many levels.  I had built a career in pharma sales and was calling on world-renown thought leaders in medicine at prestigious teaching hospitals.  (Psychiatric medicines I might add..)  And my husband was running the Canadian operations for his company from where he had started as a CAD designer at the age of 22.  So this was us.  Happy.  Healthy.  And loving our lives.

In July of 2006, Jordon called me while I was at a business meeting in Chicago to tell me he had cancer.  And thats when our reality stopped.  And another one started. For another 8 years.  Treatments and pain, worry and depression. Anticipatory Grief. And then the phone call in 2014, you have metastatic cancer, and he passed away 6 weeks later at the age of 41.

SO….my advice to all y’all who have never jumped over this fence before is to savor those moments.  It’s not about the car.  It is about who’s along for the ride. So take opportunities to make moments and experiences memorable.

Life is about learning and growing. No one is promised a perfect ride. Everyone experiences grief unless you are the first to go. . You can have it all and lose it all.  You can also lose everything and gain much too!! It is about experiences, really good ones and bad ones.

And now we are starting Grief Anonymous.  Two years later. And so much more is to come.  Just know you are not alone.  No one is going to hold back the truth here and we will be here for you when this happens to you. Oh yea….  and we even talk about the signs we receive from above. 🙂 Notice and believe.

Enough is a powerful word.  A powerfully positive way of existence. A powerful mindset to have. It signifies what we truly need to move forward from moment to moment, from hour to hour and from day to day and into the months and years ahead.  Enough edges out lack and it’s also too full for excess. Excess runs over and looses its appreciative tangible value to us.  Enough signifies balance, stability, and peace.  Enough is the place in my mind, my heart, and my environment that I seek to live out the rest of my days.  I feel truly blessed within the light of enough.

Many people live in excess following the death of a loved one.  The void can be too much to bare and the windfalls of inheritance and insurance enables some to ease their grief through material comforts and a constant need of more sets in to soothe one’s soul.  They are emotionally seeking what they lost through the comfort of a purchase.  This is how some fall out of balance with enough.  Seeking more leaves one feeling lack.  The feeling of lack that grief brings to us ushers in unease into our minds and our actions.  If you find yourself wanting more and more~ stop and ask yourself why? Are you trying to fill a grief void within yourself that just needs and craves love, connection, and emotional stability?  Do you feel empty?  Why?  Grief causes a great void in our lives, an emptiness from the physical separation of our loved one. Many people fill this void with those things that do not serve our higher good.  We take in estate monies for example and go on shopping sprees to feel better.  We buy cars and goods to fill our hearts with some semblance of momentary happiness.  Something to take away the tears for awhile. The same goes with food, alcohol, drugs, and casual sex.  Grief causes many of us to fill this emotional and physical void with these tangibles.  And for many- the more the better.  And the more and more leads to addictions, financial ruin, health issues, and even suicide.

Others find themselves in severe lack of resources due to the death of a loved one and their void is made all the more complicated due to a hightened level of lack. These people also are the ones that are in need from us, The Collective.  We will seek to find those who have their last $5 in their pockets and are homeless from grief and loss.  We will seek out those who are in danger and those who are at their emotional ends, those who have had their rights violated and trampled on.  We will support those charities and organizations who seek to directly help those persons who are in crisis due to grief and loss.

Grief Anonymous is free to join.  Free to organize.   There will never be any obligation to purchase anything through our organization.  However, once the Grief Anonymous website is up and running we will support this endeavor with books, mementos, jewelry, items for our sanctuaries, and comfort items such prayer blankets for sale that are supported by independent business owners who’ve experienced grief and have turned their careers into successful businesses and are giving back to their communities.  10% of all sales will go to support The Jordon Barker Foundation to give back directly to those who are in their most desperate times of need. Tenet #10 is Give Back and our collective contributions will go to aiding those who need it most. Directly.

Look for Grief Anonymous to be highlighting authors and other people who are using their creative talents to give back to the community of those who are grieving.  Rhonda’s own experience with complicated grief coupled with the fact that she’s worked closely with the dying and sick makes her the perfect person in my opinion that I would want to hear about on this subject.  Thank you for allowing me to showcase your hard earned work and effort to help others by giving back with your story!!  Today her book goes on sale with Kindal!  Check her book out!

Introducing, Rhonda O’Neill:

I am a Registered Nurse, who worked in the specialty of Pediatric Intensive Care for over a decade. I witnessed death on a regular basis, but did not understand the impact of death until a decade ago when I experienced the tragic deaths of my husband and son within two years of each other.

I was diagnosed with complicated grief in 2013, five years after my son died, although I had the signs of complicated grief long before I was diagnosed.

Complicated grief is a harmful form of grief in which the griever does not process the loss of their loved one in a healthy way, and they are not able to adapt to life without their loved one. The griever remains stuck in the acute stages of grief indefinitely. Unhealthy emotions and thought patterns take hold of the griever, preventing the healing process, and affecting the griever’s ability to function in everyday life.

One out of ten grievers will experience complicated grief. There are factors that are known to increase the risk for complicated grief  – multiple losses, the loss of a spouse or child,  a traumatic death, complications surrounding the way the griever found out about the death- are just a few of the circumstances that can put the mourner at high risk for complicated grief.

I have closely followed the work of Dr. Katherine Shear at the Center for Complicated Grief at Columbia University. She has pioneered work on complicated grief and has developed a 16 session treatment for cg which is twice as effective for cg as traditional grief therapy. I use my medical background to help to translate the information on complicated grief for the nonmedical griever.

Complicated grief has tremendous emotional and health implications for the griever and that is why I hope to help educate the grieving population about the risks. The griever struggling with cg is at higher risk for suicide, numerous mental and physical illnesses and early death.

I was not aware of the therapy for cg when I was struggling myself. My healing came through a search for questions on the meaning of life, death and where God was amidst all of this pain.

Through my search for answers, I eventually learned how to transform my pain through emotional and spiritual growth. I discovered that the questions I had about death ultimately lead me to deeper questions about the greater meaning of life.

I have researched the philosophy, science, metaphysics and theology of death, life, God and the universe for a decade. Each piece of truth that I uncovered helped me develop a spiritual path that allowed me to transform my grief, eventually arriving on the other side, and although I would always grieve the loss of my loved ones, I was ready to begin trying to live life again. I knew through my spiritual experiences that my loved ones were safe and happy in another spiritual realm.

My hope is that my experiences and search for answers will help to spark the flame that will light the way for someone else’s journey on the path of grief. Ultimately, we each have to find our own answers and our own path to the other side of grief. But, through joined understanding and support, I believe we can help to illuminate each other’s path.

 

 

Facebook Page : https://www.facebook.com/healingcomplicatedgrief/

Website/Blog:  www.theothersideofcomplicatedgrief.com

Huffington Post Archive Blogs: http://www.huffingtonpost.com/author/r-oneill1-133

Book, The Other Side of Complicated Grief: https://www.amazon.com/Other-Side-Complicated-Grief-Despair/dp/0997800704/ref=sr_1_1?ie=UTF8&qid=1471626717&sr=8-1&keywords=the+other+side+of+complicated+grief

 

Google Definition of Sanctuary- sanc·tu·ar·y
ˈsaNGk(t)SHəˌwerē/
noun
1.a place of refuge or safety.
“people automatically sought a sanctuary in time of trouble”
synonyms: refuge, haven, harbor, port in a storm, oasis, shelter, retreat, hideaway, hideout
2.a nature reserve.
“a bird sanctuary” synonyms: reserve, park, reservation, preserve

Tenet #2 of Grief Anonymous is about finding or creating a sanctuary for healing.  This tenet’s importance is to be understood on many different levels but here is what needs to be explained first in order to get started.

One aspect of a sanctuary is the definition itself.  “A place of refuge or safety” is the first definition.  I needed this badly when my husband first passed away. We were living in a foreign country that I loved but I was also twelve hours away from any of my own family members.  My home became my sanctuary.  And I dedicated a room to healing.  A place to put all my special things in my life that reminded me of what was important to me.  It included things of my husbands, art pieces my son made for me when he was little,  books and beautiful elemental stones, scented candles and turkish lights that when lit up caste a vibrant spray of color all around.  I needed this place to connect to the core of me and my experience, and a place to connect with my Higher Power, God.  What this power is for you is for you to say.  But for me it is God.

I think the problem with our mindset to grief is we think staying home is bad.  We attribute our long hours in our homes to becoming reclusive and wrong.   I have something to say about that.  The Native American peoples of this land learned to understand the nature of animals and they applied that knowledge to their understanding of healing, spirituality, and natural instinct for survival.  They studied the animals so that we may learn from them.  When we are feeling the need to stay home all we have to look to is the instinctual habits of those animals that hibernate.  Maybe instead of becoming reclusive and stigmatizing ourselves we need to embrace this time as a time or period of hibernation.  Of recuperation.  Of surrounding ourselves with those things that bring us peace and comfort~ a place of refuge or safety.  We have been tested and tried and stretched beyond our limits with this new emotion of grief and we need to understand it.  And creating and accepting a sanctuary in our lives turns this whole process into what it should mean and washes away the negative.

As in all things~ too much is not a good thing.  Allowing yourself to feel comfort in this and heal from it will give you what you need in the timing specific to you.  You set the season.  You set the pace.  Go cuddle up in your husband’s shirt or with your child’s favorite stuffed animal and stay there and breathe.  Smell them. You are not crazy.  You are not strange for wanting these sentimental gifts and belongings around you. You are right to reach for them for as long as you need them.

Lastly~ when you are ready, the second definition of sanctuary will allow you to approach you waking to the world differently too once you emerge from your hibernation and look up and out to what is new and different around you in the outside world.  Because grief stops time for us and everyone keeps moving on with their lives it will take you some time to catch up.  In doing so, allow yourself  then to find a natural reserve or park or path or forest or simple trail through your neighborhood.  Connect with the elementals in nature.  Breathe the air like a newly emerging person who is getting to experience life anew.  And draw from that Source from Tenet #1 to help you with this transition.  Go forth, yet stay connected.  It really is going to be okay.

 

 

Thank you, Sofia.  Thank you for sharing your authentic experience of miscarriage so that others who’ve experienced the same can know they are not alone and also so that we may gain a new insight and compassion to the reality of this experience. ~ Holly

It hurts when people forget your pain to have a child. When they ignore your struggle to just stay afloat let alone swim. It doesn’t say anything about you. It says alot about them. I keep forgetting. I take two steps forward and ten steps back.
I think infertility makes us invisible. To friends and family alike. Same behavior. Ignore the elephant in the room.
I have always put other’s feelings before my own. Even if it means I will suffer. Their happiness and comfort is priority. Don’t do or say anything that will make them uncomfortable. These things should not be talked about. Just accepted.
That means my feelings are once again put on the back burner. So while I am watching out for your feelings, who is watching out for mine?
Last few days have been trying to say the least. I have teared up over everything. I have literally been bombarded by baby news, people going on and on about their children. Completely ignoring who their audience is. So much more that I can’t even mention without losing it. Sometimes. Just sometimes it is just too much for the heart and I want to scream.
So I took out all my hospital things, my ultrasound pics, my hospital identity bands, my medicine schedules, my pics, my parking tabs, the baby clothes, baby books and all our dreams and lay down on the bed and cried my soul away.
But I was no longer on the bed. I was taken back to the hospital room squeezing Raheel’s hand so tight they are turning blue. Waiting. Waiting. Waiting. We have done little else but DAMN wait.
*for the bloodwork
*for the ultrasounds
*for the appointments
*for the medicine
*for the doctor
*for the nurse
*for the pharmacist
*for the insurance
*for the try again
*for the YES
*for the NO
*for the try again
*for the why don’t you
*for the you should have
*for the disappointment
*for the joy
*for the try again
*for the try again
*for the try again
*for GOD to smile on us
One pregnancy in particular, we will never forget.
We had gotten the good news a day before Raheel’s birthday on August 22 and we were beside ourselves with happiness! It was supposed to be an early birthday present. The best birthday present. We hugged and thanked every single person staff at the hospital!! The doctors, nurses, embryologists, secretaries! We had our miracle. We hugged the ultrasound. We hugged and cried our hearts out. Our little peanut. OURS.
It was a dream come true. Our prayers had been answered.
But it was short lived. The dream turned into a nightmare. Just under twelve weeks later our dream was shattered. It was gone.
No heartbeat. Funny thing is, I can pinpoint the exact moment my baby’s heart stopped. I knew it in my gut. There was a few drops of fresh blood and my chest felt like all the air had gone out of it. I immediately knew. I cried out to Raheel from the bathroom. He consoled me but I knew. The doctors would only confirm what the ache in my belly was telling me. We were in shock. It was the first pregnancy and everyone had been telling us how great I looked, how my skin was glowing and I felt incredible! So how could it be gone?? Why?
I told them to do the ultrasound again. I screamed my brains out. My screams must have been heard throughout the hospital. Raheel told me I told the doctor to go to hell and I wanted a second opinion. He said I slapped his hand away. He said my sobs were unbearable. They called another doctor who said the same. After that I don’t know how I ended up in the waiting room. All I recall is crying and sitting on the hospital floor telling everyone to go screw themselves.
I smile because it is expected of me.
Everytime I hug my beautiful nieces and nephews my heart feels like it will explode. Feelings of longing and emptiness that I have to surpress because it is expected of me.
I crouch on the washroom floor and hug my traitor body. I cry in the shower.
But I smile on the outside because it is expected of me.
For those of you with children and trying for more. I can understand your hopes and dreams of growing your family.
Those of you with children and don’t want more, I can understand your family is complete. You have been blessed.
Those of you that are not in a relationship, don’t have children. I hope you find what you are looking for.
Those of you that don’t want children. That is your choice. I respect it.
Please stop telling me how to feel.
Please stop telling me how not to feel.
Please stop telling me about GOD and his will.
No one is closer to GOD than the one in agony. Trust me. I call out to him with every breath. It is his people that need to do better.
Considering how mean and ignorant people have been, the reason I have not gone completely crazy is because of Raheel. Simply put, the ONLY one that has not told me how to feel. Never once. Always encouraging me to talk about my feelings, to read more about grief and healing, to reach out to other couples about it. To help others. I can talk about it all day and not once has this amazing, wonderful, loving man wavered. The love of my life ❤
So to all the people that ignore me or tell me to get past it. I am sorry YOU are uncomfortable. Please bear with me because I am still trying to come to terms with never singing a lullabye. We are still trying to glue back the pieces of our hearts.
But sometimes. Just sometimes it hurts too much.

 

My husband was sick for quite a while before his second diagnosis which was in fact a terminal diagnosis of cancer.  I knew he was sick and probably he did too.  Four months before we received the diagnosis of metastatic cancer we went on a doctor visit because he felt bad.  I taped my mouth shut and sat in the doctor’s office in protest while he convinced the doctor that he was okay while he received a diagnosis of pre-diabetes.  He was gone in four months.  I have rode waves of anger over these last two years about this that finally eased into a ripple of forgiveness and understanding.  He was worried too and had been through enough scans and surgeries for years.  He was tired of it all and wanted some normalcy and peace.  It had settled into his mind that the cancer was never coming back.  I knew different.  I am angry that we only got six weeks of time with him after that final diagnosis.  I look back and think about what we would have gained from an earlier diagnosis.  What we could have shared.  How we could have been better prepared.  The things that could have been said that weren’t.  He was too sick at that point and our days were about managing his pain and suffering, not writing love letters and taking family videos and cementing our love.  I am angry.

Many people who write to me admit this too.  They are mad that their children got addicted to drugs and died of an overdose and left them to grieve a lifetime of searing pain and regret that there might have been more that they could have done.  Parents who die who were abusive and leave their children to grieve with mixed emotions and unresolved questions of why. Wives and husbands are upset at what they found out after the fact when their spouses die~ hidden love letters, bills left unpaid, empty bottles of booze hidden in closets and under the beds, credit card statements showing up that they didn’t know about.  This is complicated grief.  When we grieve a person with unresolved issues in life.  Life is complicated.  And when life gets complicated and a loved one dies, it can leave a huge mess in that person’s wake and prolong their ability to heal.

Tonight I had a flashback to those moments.  I took my dog on a walk around our neighborhood and seemed to find myself in deep discussion with my husband.  I was telling him how I was making it on my own.  That I was pulling myself out of this. But how angry I am sometimes over what happened.  It’s the truth, irreverent as it may be.  But complicated grief is just that~ complicated.  And I know I am not alone on this from all the stories people share with me.  What happened next reminded me of why I write.  Why this all came about with Grief Anonymous. It’s the connection we still have, he and I.  I rounded my last leg of my walk and my son was playing basketball in our driveway with friends and they asked me to back the car out.  I was sad and distraught from my celestial conversation with my husband and I just went into the house and got the keys and came outside and turned on the ignition.  LOUDLY a song began to play and stopped me in my tracks.  Thank you, Jordon.  I know.  And now I remember you are still here to help.  I love you, too.

 

 

 

It makes no sense how anyone can understand an emotion that they haven’t experienced before.  And they don’t get us.  And we don’t get them as to why they don’t understand us.  Herein lies the disconnect.  Our expectations from each other are very high on both sides.  We expect them to be there for us as time goes on.  We expect them to see us through their eyes as the same people we always were, and it doesn’t work for them.  Because the truth is we are not the same and we are learning our new normal and re-defining who we are.  They see our void but they don’t feel it.  They just don’t know how to move forward and communicate with us with on the emotion of grief.  I think that is the bottom line as to why people wonder away from our lives when we are grieving the loss of a loved one.  None of this is fair and none of this seems right.

But I guess we have to see it for its truth.  There is a disconnection there that needs to reconnect in our relationships.  We need to unlearn what we have learned as a society as to how we understand dying, death, and grieving.  We have to reach across the table to help reconnect to others that do not live in or understand our world.  And we have the team advantage that they do not.  We have the knowledge and wisdom of the emotion of grief.  When we understand this, then we can reach over and be the first to offer the olive branch.  After all, we have sat in their place before, not vice-versa.   We can heal ourselves through the 10 Tenets of Grief Anonymous.  We can become a strong force for change as a group. We can find a loud enough voice to ask our medical communities, our religious and social groups, and our families and friends to understand the disconnect by educating them on what we need so that the doors of communication can open.  Most of the time I believe relationships fall away after grief simply because people don’t know what to say.  And half of what they say pisses us off! So no wonder there is a problem!!!

Western society does a terrible job of accepting grief into the mainstream of life.  It covers its eyes and ears and turns its head away.  But grief is something that is so impactful in life that it effects everyone whether they see it or not.  It is the big elephant in the room but with amazing internet capabilities we now have the ability to really find each other and network and share our true authentic experiences so that we can know we are not alone.  I am not competitive with my work in developing Grief Anonymous.  This emerging social change in the USA is too critical for that and we need all the organizations and programs and support we can get.  I am asking society to consider how important the subject of grief is for all.  All I can do is my part but I think I have a pretty good reading on the pulse of this issue and I am ready for this challenge.  I have a university education and two decades of sales and marketing experience…But to really be able to tackle these issues one must have sat on both sides of the table to truly solve these problems on a small and large scale.  I earned my degree in grief.  And my education I wish on no one.  And all I am doing is using my education to help give back what I have learned so that what was not there for me can be there for someone who might need it. Grief is something at some point we all have to learn unless we are the first to go.  And we can change the disconnect and light the way for others.

In love and light,

Holly C Barker, Founder of Grief Anonymous

 

I’m a coastal girl. I love the beach. Especially the North Carolina coast that I consider to be the most beautiful in the world. Because the coast has my heart. I vacationed there my whole life. And I honeymooned there and my son took his first steps there. Many of my most cherished memories come from there. Now the memories being made are vastly different because my husband is no longer with us.

Many of my analogies come from the North Carolina water currents, hurricanes, eyes of the storm, navigating the waters… Jumping in pools yelling, “I Catch Me!”

This is what we have to do when grief finds us and we begin to be pulled out to sea by a riptide. It’s a frightening feeling to lose sensible control of your emotions. To feel the pain of struggle against this unrelenting tide. Most swim and swim because that’s the intuitive thing to do. Fight it!  Deny it!  Push through!  But the answer is counter-intuitive. We must stop the struggle. We must accept this riptide is taking us where we are supposed to go and it will let us out at the other end. But we must let it take us so that we may know and learn and grow. To struggle is futile and exhausting. It moves faster than you can think. I know this feeling.  And when I stopped struggling and allowed it to take me is when my healing began.

I took these top two pictures during my last visit to the beach. I am practicing Tenet 8 of Grief Anonymous: Finding a creative outlet for my grief. Personal photography for my books I’m writing. Yay!  So beautiful. I couldn’t take a bad picture of the scenery even if I tried!!