Author: jd80

It’s not easy going from active with caregiving for someone with a terminal illness (no expiration date)and a part-time job that provided access to the world for free or a discounted rate…to caregiving of just one son and jobless.  It’s one of the hardest transitions I have ever experienced.

It’s left me in a place of deep sorrow, feeling as if I am being extremely lazy in my grief.  Aimless in my grief.  There’s been no magic guidance that has made this new life make sense.  No Masterclass on how to navigate the loss of a plan.  No collegiate-level degree in transforming the pain of loss into the progress of hope.  If there is one, I’m so far into my grief process that I can’t see it.

It feels like I’m trapped in a horrible nightmare where progression is limited to what is available as a handout.  I need a hand up, not a hand out.  I am getting the help I need from family that remains active in our lives.  Our meaning my life and my son’s life.  What I’m hoping for is more confidence to expand my love of putting words together.  But, it feels lazy doing it the way I am doing it.  Without any education.  Without a plan or a goal.  I don’t know how to find the plan that will turn the devastation into meaning. 

Of course, it’s all up to me on whether I pursue my deepest dreams or not.  The battle for my energy has been a beast to overcome over the past year.  Yes, I am deep in the throes of life without my person as it has been almost one year since she died.  I feel lazy in my desire to honor her hard work.  I feel lazy in my desire to want to use my creativity to make a way for me and my sons.  I feel the weight of responsibility in such an overwhelming way that I end up walking in circles trying to figure out how to eke out some larger wins than just waking up daily.  

It’s become an interesting examination of Grief & Laziness because a lot of what I’m discovering in the process of processing my feelings/emotions is that I may be getting held back by fears.  Fears I’ve never addressed.  Fears I’ve been afraid to dig up for fear of getting further stuck in the emotional muck and mire of life without my person.  

There are other people out in the world that are encouraging.  There are other people out in the world who are inspiring.  Sometimes, I just want to stay in the little safety of fear and laziness.  There’s no potential for pain and suffering in the “safe” spaces of fear and laziness.  There’s no judgement or criticism when I keep my talents to myself.  

But, there’s also no opportunities when I stay small and quiet.  There’s no growth or development when I don’t use what I’ve been given to the best of my abilities.  There’s no evolution of who I am or am meant to be if I stay in the safety of fear and laziness.

Even starting this one is a challenge, because I’m afraid of what it could lead to.   Or, what it could uncover.  Grief has added a layer to the discovery of who I am now that death has made an appearance in the most important relationship of my life.  The one relationship that has done more to transform me than any other relationship.  

My remaining relationships are transforming me, but I’m frozen in fear of what could happen to them next.  What unsuspecting event will come to steal more joy?  What new routes to joy must we now explore?  Anticipatory grief and fear.  So afraid, I don’t know where to go with anything in my current adventure called life.  

What is anticipatory grief?  What is anticipatory fear?  

The idea that loss is coming.  It’s.  Always coming.  It’s been chasing me since I was four years old.  When I was first introduced to the concept of someone not being present.  Whether it be someone years my senior, or a peer, or someone even years my junior,  I’ve experienced unwanted death at every level.  And, I fear so much of what it means to the survivors.  

I’ve survived quite a bit, and in my pursuit for guidance on this whole grieving process, I was fortunate enough to come across a quote.  When asked what is the worst tragedy to grieve,  David Kessler responds with, “Yours is.”  Whatever I’ve been through is valid to grieve.  Whatever I have survived is worth my attention.  My attention to finding what it is I am afraid of.  To heal from.

The fear of acknowledging that there are things I need healing.  Once discovering the things that need healing, sharing that I need help with staying the course ahead of me to experience the release of that pressure.  So much pressure.  So much pressure unattended.  Unnecessarily overwhelming pressure.  That has caused my sight to see no further than the present unknown.  

So much unknown.

Isn’t that what fear is?  The shutdown of progress at the hesitation of what’s unknown.  With so much loss over the course of decades, at times the fear feels warranted.  Fear that prompts a building of walls for protection.  Because with each separation from the things I have appreciated deeply, has come a deep wound that I feel I must protect.  I’m tired of wounds getting reopened.  

Who wouldn’t be tired of it? 

I am afraid of wounds being inflicted.

Who wouldn’t fear that?   Who wouldn’t fear shattered hopes and dreams?  Who wouldn’t fear the loss of important people and things?  

I am afraid that if I am actually good at writing to inspire the world around me to something beyond what we are presently, that I’ll have to keep up the momentum…by myself.  I know that help is available.  But, I’m afraid of what it means for the future.  Giving all of my time and energy to something that can so easily be taken away.  Something that can be so quickly snuffed out.  

The Unknown.  

The only way to defeat the fears and laziness?  Believe that I am somebody, and what I’ve been through is worth telling the story.  So many stories that I have chosen to hide because being vulnerable in the presence of others has been terrifying. 

The anticipatory fear of “What if I fail….again?”

And so.  I sit.  And.  I write.  Hoping, like Alexander Hamilton, to write myself out of the suffering.  Write myself out of the unknown.  Write myself into a life worth living.  Write myself into a life where fear is the fuel that makes me want to work.  Write a new chapter that is the beginning of the best part of my book called Life.

In my dreams I’m fighting for a family that is no longer able to grow as it was.  What am I hoping for when “family” has defined itself a lot differently than a true one would?  Differently than I would have expected?

Writing about what’s happened seems like a waste of time, but nothing done in faith is a waste.  What do I have faith in anymore?   If I can’t trust the ones who say they love her, yet dishonor her memory by dishonoring what she was building.

Why not let them have the mess that is OS, and build faith in myself?  What did I really do when I supported my bride’s pursuit of the self made American Dream?  

I’m meant to have more questions than answers so that I will know how to protect what’s mine from vultures.  Parasites that didn’t trust in their own ability to create something lasting for themselves.

I must build trust in my skills and abilities to have my own creation that everyone’s into a provision for other likeminded creatives.  I must trust in my ability to inspire.  

I must trust in the ability to heal.  Life has hurt tremendously so far.  It’s not over either.  More laughter is on the way.  More help is on the way.  Help me be patient.  I really need help with patience.  I want so much to just be over so I can move on with my own life.  A life devoid of expectations.  A life of responsibilities I have chosen for the health and development of what I alone am responsible for/to.

A life where I can look at myself every day, and be proud of what I am about to do/have done.  What am I fighting for if not my own ability to rest in peace, and rise in power.  Power over my own day.  Doing things that bring me to life, and keep me hoping for more.  The energy I felt working for Piedmont, but under my own control.  

The Pipe Dream.  A Platform that provides for generations to build the lives they desire in their own heart.  Why can’t I be the generational anomaly that allows for wealth to come in?  It takes work.  I am a worker.  I have worked for other’s dreams.  I can work for my own. 

I will work for my own dreams to be reality.  I will empower myself to dream.  I need help to do that. 

It has to be ok that I feel overwhelmed, and express it.  Somehow.  Or else, I’ll feel eaten alive every day.  And, I’ll want to give up.  I don’t want to give up.  I do want to be useful again.  I want to produce usefulness.  Produce purpose that pays.  I want to be able to actively save towards a future worth living.  A now worth living.  A now worth dreaming. 

I am honestly scared to share myself with the world.  With even one person.  To even let the world into my thoughts is daunting.  I, for real, don’t know how I am going to let this one go for anyone to read.  But, that’s what being open to healing is all about.  Growing in being willing to be open about where I am with my struggles right now.  I won’t get better if I hide.  

I won’t get better.  If.  I.  Hide.  

I am fighting for the opportunities to not hide.  Because.  Grief is love crying out to be shared. 

How does anyone make their way through the loss of meaningful anything’s?  Remaining awake long enough to impact worlds around me?  Feeling the energy drain out as the mornings progress into afternoons…which progress into evenings on repeat.  A new cycle of living is becoming my new normal.  And, all I feel is the numbness of being forced into a new cycle of living.  

There’s no course to prepare anyone for what feels like a lobotomy, or the wiping away of a life.  But, that’s exactly what has happened.  Lives got wiped out when she died.  All I have are memories and videos of a woman who was once so full of life!  Double fisting New Year’s Eve drinks as the DJ plays “Yeah” by Usher.  A woman who would degrade her own ability to feed many with good food.  A woman who was strong in ways that I needed.

I feel as though I am good enough to get my son Jonah where he needs to go, and then either write or sleep.  What does that mean for me?  What is the point to moving forward without her?  What is the point to pursuing my passion when my passions have led to loss & grief.  It’s so hard to want to give myself to relationships knowing the impermanence of them.  Knowing that all things are so fragile is heartbreaking.  It may be my entry point into the depression portion of grieving?

In a mad dash to get some guidance on how to do life now, I have consumed so many resources on Grief & Grieving.  Some aspects agree.  Some commentaries don’t.  Who do I listen to?  Who do I ignore?  How did those “experts” become experts?  Is there a list of qualifications one must reach before they can become a talking head on the subject of navigating grief?  Why do I want to try and be one?

How long does someone have to grieve before they can become an expert on the subject of grieving well?  Why did life have to take a turn to where I would have to manage death…again…while having to navigate a life that has long since crumbled apart.  Decisions were made to remove relationships from my life because of the fallout from her death.  The pain of having to mourn someone’s seemingly untimely death as well as continue to work towards goals that now seem arbitrary is so heavy.

What is “Grieving Well” anyways?  Is it a good day when I don’t stare off into nothing wondering what the next loss will be? Or, have I done my grief justice when I cry in the most inopportune place publicly that I can find?  Maybe, it’s that I am able to get through a dinner with family?  Maybe instead of sitting like a bump on a log waiting for my time to go back to bed, I engage with others?  But, what if I don’t want to?  What if I don’t want to go anywhere because it costs money…and I don’t have access to a typical job anymore?  Single parenting is not easy!  It’s even more of a challenge when it wasn’t planned.  

Am I grieving well when I put the needs of my children above my need to feel like I’m here for more than just my kids?  Am I grieving well by writing out these thoughts for others to read?  The fear of doing so is perhaps the strongest I have ever experienced in my life.  But, this is where I am now.  Questioning the power of my purpose.  

“What is the purpose” is a question that floats in my mind often.  Is that normal for those grieving the death of someone so close?  Especially when I was her caregiver.  A role I feel like I was born to satisfy, but not the only role I was born to occupy.

So now begins the search for deeper meaning and purpose.  Something that will help me relieve the pressure of wanting to “be ok.”  I may not be “OK” for a while still…and, that has to be ok…right?  This numbness will go away….RIGHT?!

“Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity. If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path.”

Brené Brown

Pretty powerful how the first characteristic of vulnerability in Brené Brown’s definition is Love.  Because, love is the foundation of why grief is what it is in our lives.  Loss of the freedom to express love.  To share love with the ones we work with so closely on building a life worth being proud of.  I’m proud of the life I was building with my deceased partner.  The active thought about my partner that is no longer with me has left me in a state of shock, and it’s almost been a year since she died. 

I will say the love I have for her now feels like a love that was too late.  I don’t blame myself for her illness.  I don’t blame myself for how multiple myeloma attacked our lives.  I don’t blame myself for anything except how hard I was on her to want to beat the diagnosis.  I wanted her to be one of the lucky few that fought for herself to keep going…and going…and going.  

However, the disease had other plans.  Now we are in the thick of life without the womanly touch that was Julie Ann.  She was powerful in her desire to beat the disease, yet there were things in play that countered the health care of my bride.  Things I wish I knew how to speak against in love and patience instead of fear and anger. 

I desperately want greater clarity in my purpose, because at this point in my daily life I am failing to see the purpose of this level of suffering and pain.  It’s the pain of loss.  The pain that I was introduced to so many years ago at four years old.  Witnessing my grandfather’s slow deterioration due to illness.  Of course, at four years old, We aren’t prepared to have language that speaks towards death in a way that makes sense.  I just know it was a quiet time in the household.  For him, and when his wife eventually got sick and died.  

Separation of life from loved ones is not a new experience to me.  It’s just the first time it has come this close to me personally.  There are family members who have died that I didn’t get the chance to share my love with, and that is a form of grieving that is as hard as the death of my wife.  People I loved deeply because of how loving they were towards me.  People in wheel chairs that had their own life of suffering.  People too young to have died in that car crash on the expressway on their way to a high school basketball game.  Children too young to even know what they were doing in the hospital to begin with. 

This is vulnerability that starts with love for me.  The emotions and feelings I am no longer able to express to the people that are dead.  The desire to share just one more conversation with Julie Ann about…It would probably turn into an argument at some point.  But, that’s what happens when two very passionate people must work together to build lives worth sharing.  And, we wanted to share so much of our lives with the world.  We’d only just begun to come to a place where we could do so without shame or fear of judgement between each other. 

We’d simply…ran out of time.  But, love doesn’t ever run out of time.  Love is always present and available to those who are willing to feel it.  I do still struggle with wanting to be expressive socially of my love for people, but that’s due to the years of separation from people and things I love in such a powerless way.  

Dare I say, I am afraid of loving because of the other side of loving.  The loss of love.  I always wondered why in Men in Black when Tommy Lee Jones’ character was presented with the old adage, “Better to have loved and lost…”  He was pretty direct in his answer, “TRY IT!”  I felt his pain when he said it, but had no clue why?  I never had a context for what my heart and soul was feeling until now.  Now I have terminology for what I am feeling.  And, it doesn’t make the pain of feeling it any less.  If anything, it gives me a context for what I am feeling.  Although, I really wish I wasn’t feeling it.  

It’s a level of helplessness that I felt growing up.  Funny how I was loved as a child, and grieved the loss of so many things…only to come to a new precipice at 44 years old on why we grieve what we lose.  Yes, I lost a wife.  But, I lost a life I was growing with.  We had plans.  We had dreams.  I had a job I really enjoyed that provided an avenue for us to see more of the world, and see more of ourselves in relation to this world. 

The grief I experience now is the grief of the loss of lives developing.  Now, we have to develop another way because we’re going to forever be missing a member of our party.  A member that will never return.  Even if we talk about her, and commemorate her, and share stories of how she loved us or we loved her.  We are going to forever be altered in our development.

This is what Love has allowed.  A pivot in development.  One of the hardest pivots I’ve ever had to do, because I lost my dance partner.  Now, I have to find a new way of belonging.  A new place of belonging.  With new partners in developing.  No one will ever replace my original dance partner, and it’s going to have to be ok that I am in that space.  

Companionship comes with pitfalls.  Companionship comes with opportunities to heal.  Companionship is a challenge for me on most levels now because when I love, I give large amounts of myself to what I love.  I have wondered why there is such lasting fatigue with just waking up every morning.  All day long it’s as if I am barely present.  I prefer to be alone, but know having relationships is extremely beneficial for my healing.  Yet it’s such hard work to try to act like I’m not missing a HUGE piece of my life.  No one is suggesting that I do, but this type of work is extremely heavy!

One day we are here.  The next day we are gone.  The survivors have a hard road of choices to live in love and vulnerability or hide.  Some days are hidden.  Some days are exploratory.  Most days are tough.

But, Love is what helps keep us going through.  Love from the village helping to raise the children.  The child in me that has never really received the healing he has been needing for decades.  Maybe now is the time to be vulnerable with my needs for love and belonging?

Maybe Writing is a way to get out of this…But that’s all it’s good for…getting me out of the current…but why do i want to get out of the current.  “Poor people can’t see past their pain…” Thanks Dave Chappell.  Now i know what’s been holding me back.  Just being concerned with my own pain.  How good am i at writing…to move people to want to buy my words.

What more can i do to maximize my potential?  What IS my potential?  What am i supposed to be doing while I’m here other than taking care of my sons…of which one doesn’t need me much anymore except to pay for things.  If this is the pain that I can’t see past, how do i see past it to monetize my life?  Is it fair to want to monetize my life?  

I watch grown men play games professionally, and i wonder what i can be professional at that would pay me millions?  I want to be in a different place than I am.  But, i don’t know how to get there.  I haven’t known how to do much for the life of me.  A shattered femur led to a shattered life, and I’ve been wading through the pieces ever since.  Who cares though?  That’s the pain i can’t see past…the “Who Cares” pain.  There are people who care.  They won’t pay millions to know about this pain.  Who would?  Grieving deaths on top of deaths…so many things going a way that is far less than i would have hoped.  

But i haven’t had much of an anticipation for the positive.  So….how do i turn it around?  How do i get back on a trajectory that was life giving and exciting?  How do i do anything when i don’t want to do anything. 

All that’s left for me right now is watching grown men play games at a professional level.  What am i a professional at? Being Jonah’s dad.  It’s making money, but not nearly enough for us to be exploring the world like we wanted.  We….me and Julie….now there is no Julie…just what she was trying to build.  A dream that was her’s.  A dream now deferred.  Not only a dream deferred, but a life ended.  A life that wasn’t ready to be over.  Her life. Our lives.  Our son’s lives.  

In ways unexplainable right now, lives have ended with the death of my bride.  It’s not my goal to remain a “Poor Person” as Dave C. spoke about in his SNL Monologue.  This early in my new life with grief and grieving it’s very difficult to see a hopeful future.  I’m still dealing with a past that was abruptly altered over night.  I was with my bride for almost 19 years.  And in an instant, she was physically removed from my side.  In a sense, being her caregiver gave me a front row seat to her slow and agonizing deterioration.  A level of pain that made the restless leg syndrome she was battling feel like light feathers instead of raging hot needles.

What we battled together day in and night out was unfathomable had I not been there to witness it.  The form of cancer she had wasn’t removable, or able to be minimized.  And, watching her live with it, without any other type of distraction for myself, was also extremely painful.  My love for my bride was tested daily.  I didn’t always pass the tests put in front of me as I would have liked.  

I know I am not a poor person as eluded to in the monologue, but I am a deeply wounded person who is just trying to figure out how life is supposed to work without my co-pilot.  The one who would ensure we were engaged in the world outside of our house walls.  So, I watch grown men play games getting paid millions to do so.  And I wonder…is there a road for me that lets me get paid millions to do what I love doing?  But…with grieving…I struggle to know what I love doing anymore.

The spiral can go up or down in an instant.  There is hope in days because I still look forward to eating with my son.  I still look forward to the days where we will be traveling to see my oldest son play volleyball!  Or there is the dragging out of my days wondering when something will be different.  I can only listen to Elvis Presley so much in a day, but I adore Jonah enough to deal with it.  That’s all I seem to be able to just “deal with.”  

Grief and grieving is painful for sure!  It’s showing me how deeply my love for my bride went.  Perfect our relationship was not.  Littered with challenges was our day to day.  Love was what kept us together.  Hope in what we were building as two people living lives of unacknowledged loss.  So much loss between the two of us that was never addressed.  But, maybe that’ll be a topic for a later writing.

Until then, I will continue to enjoy the distraction of grown men playing games getting paid millions!

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The fears of facing the losses over a lifetime have been the driving factors in how I have grieved the most recent loss.  I’m Joseph, and I may not have a doctorate in Grief Management, or a placard on my wall acknowledging all that I have lost over the course of 44 years.  But, as was pointed out to me recently, “You may not have any of those things, but you are still very experienced in grieving.”

In the aftermath of the loss of my wife, Julie Ann, it’s been overwhelming to realize how caught up in the emptiness of what’s missing.  I lost a friend who helped me become a better man.  I lost my teammate who was on her way to building a dynasty.  My sons lost the most lovingly, nurturing woman they could have ever had as a mother (the level of nurturing evoked jealousy from me at times). 

Communities lost the tough business savvy woman who was building a company to be proud of from super humble beginnings.  Women lost a friend who was as much for the cause of the advancement of her sisters as she was about building something her family could come together over long after we both were gone.

Grieving her physical presence isn’t all that goes with the death of Julie Ann.  There are the daily deaths of remembering I am now back to growing on my own while playing provider and nurturer to our 14 year old son with Down syndrome.  Or, the remembrance of her final days in the hospital room counting down the days until she would sleep and awake no more.

There is a lot that goes into my days now that she is no longer with me, and learning that it’s all love wanting to be acknowledged is the hope light at the end of the tunnel.  Knowing that there is hope somewhere as life without her becomes my new normal can be enough to get me from sunrise to sunset.

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1. The Necessity of Personal Awareness

Reflect on how love persists after someone is gone. The love you had doesn’t disappear—it just changes.

In her book “Grief Is Love,” author Marisa Renee Lee helped me begin to define why it’s been so difficult for me this past year surviving my bride’s death by cancer.  “The depth of grief matches the depth of love for the person no longer here.” 

The love I feel for her now isn’t the same as it was when she was here, but it’s still as real.  It’s no longer a tangible experience I am able to have, but it’s still just as desirable.  We aren’t able to argue like we did, but I still have questions.  In fact, at times, the grief of all that is not with me because of her death is heavier than the last few months I had with her.  Watching as the multiple myeloma consumed her nerve endings, and her energy level.  A once vibrant business woman with the desire to build a company…a legacy deteriorated to a napping woman on the couch feeling like a huge inconvenience to me was hard to watch.  

The grieving process has included the memories of Julie Ann, waking from her naps only to say, “I’m sorry you have to wait for me.  I feel so helpless now.”  She wasn’t the only one.  

2. The Caregiver’s Breaking Heart

The quiet of the house now echoes with memories. I find myself hearing her voice in the stillness—in the deepest part of my soul.  I was her chauffeur.  I was her cook and wait staff.  I was her masseuse on the nights when the neuropathy was “excruciating.”  To hear someone you love say the pain is excruciating was one of the most difficult things I’d like to never hear again.  When I mentioned the helplessness not only being her burden, it’s in the moments where the cancer assaulting her body was too much for her.  There were nights she would pace around our pool for two or three hours because she couldn’t lay in the pain any longer.  

It was when she told me how bad multiple myeloma made her feel, that I felt my worst.  Because of her pain levels, physical intimacy was slowly removed from our lives.  And, instead of talking to her about my mental pain of illness-induced intimacy withdrawal, I resorted to methods of arousal reduction in a less than  honorable way.  The quiet times remind me of those quiet times I never had with Julie Ann.  I figured, her physical pain is far more important to resolve than any pain I could go through. 

And yet, the caregiver must give care to themselves if they wish to remain useful in any capacity.  So now, the times of quiet I experience are times of deep rest.  So deep that I find myself sleeping most of the days.

In the moments of the day where I am unable to sleep, I find my mind heavily occupied with what matters next.  Grief has given me space to reflect on who I am without her and who I am now, as a dad, as a man.  The biggest challenge is holding on to hope that something other than my children is worth waking up for.  Grief has given me a new perspective on what it means to just be.

3. The Painful Paradox of Healing

Living a life with meaning and purpose outside of the daily responsibilities of being the surviving parent to our two sons has been a great challenge.  Walking side by side with someone who was as terminally ill as Julie Ann was took a toll on me that I wasn’t even aware of while we were going through it.  I watched a woman…die.  I was with her every step of the difficult and physically painful road that was Multiple Myeloma.  I watched as the disease ate my bride from the inside of her bones out to her skin.  “If I don’t laugh, I’ll cry and no one wants to see that.”  I watched her cry, and there are days I wish she was here for me to cry with.  I wish she were here with me to watch things on tv with.  I don’t think I’d watch another documentary on death, but to have her here with me.

The type of healing I am pursuing doesn’t forget who the woman was.  It helps me bring who she was into who I am so that I can be the best me without her that I can be.  Growing in a new way that allows a new version of real me to be watered for growth.  Growth that will look for avenues to hope in a future not riddled with the darkness of active grieving.

It’s incredibly bittersweet that I now look to build a new normal with out my leading lady.  She led us in so many directions, and her leadership is deeply missed.

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“Grief is Love” and the depths of both are a blessing and a challenge.  I have loved many things very deeply.  I never thought I would be without one of those “things” so soon in my life.  I am Joseph.  I am a widower.  I am growing in hope through the losses of a lifetime. 

For anyone else walking a path of deep grief, I don’t have much to offer other than…Eyes open and looking for hope and meaning is far better than giving up.  It’s been a year almost for me on this journey of life after loss, and I can’t say that it’s gotten considerably easier with each day.  Sometimes the days feel like I’m living the same one or two on repeat.  But, to quit on the journey seems far less encouraging.  At times, writing this blog has been a challenge of my trust in hope, faith and love. 

Maybe we’ll tackle the presence of “Hope, Faith & Love” in another writing?  

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I’d love to hear your reflections on love and loss. What have you learned through your own journey of grief?

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As long as breath is still drawn, love is still experienced.  It hasn’t been easy living and loving without Julie Ann.  And, maybe it’s a part of my grief journey that I come to a place where that will just have to be ok.

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