An Introduction of Sorts

[Steve Jones]

I really don't know what the etiquette is here, so I apologize if I don't do this well.  My wife passed on March 1rst of this year.  That loss is still really fresh, and in a way she's still here.  I haven't moved her shoes from where she used to sit.  I haven't touched anything on her night stand.  Everything on her side of the bed is still exactly the same as it was the morning I took her to the hospital for the last time.  Her things that I retrieved from her room are still where I laid them the night my son and I went to hold her hand after she had passed.

I don't know a lot about medicine, but I know some.  I know that she was talking and walking when she went in and within two days she was on a ventilator.  In another, they'd killed her.  

I carry a mountain of guilt, just as anyone carries a mountain: one heavy load at a time every day.  And like Sisyphus, it never ends, or never seems to.  So when I don't say that I "lost" her, I mean it.  I didn't lose her, I failed her.  Who cares if the body or the soul is broken?  The result remains the same.

She was too young to die in a hospital.  

I feel so worn down.  My son has autism.  He is his own challenge.  No matter what my limit is, I seem to find it every day with him. The more time I spend, the more he grows, but some days I can't even make it through the starting gate, much less perform.

For a very long time her health took priority.  All of my resources went towards that.  It was all I could do to keep up, and in the end I didn't.  My son is much the same, but I'm fighting through the overgrowth of years, chopping a path through behaviors that I only partially corrected, or didn't pay enough attention to, or financial and emotional quagmires that sop my feet and pull at me with thick, black, accusing mud, "You did this," "you weren't paying attention and this is where he ended up," "you should have done this years ago."  

Should have.  That is a dangerous phrase.  I have too many "should haves."  I am wealthy in needles that feel like bayonets.

I stumble through work.  Some days I'm okay.  Most, I am not.  I've always been predominantly alone.  Now, my presence is a burden, and I'm almost always sent to where I won't be a contagion to others.  That bareness is excruciating.  The days when my job doesn't require a lot of skill and attention are the worst.  Too much time to think.  Too much time to remember.  Too much time to accuse.  

I stopped wearing my ring.  I ordered a silicone replacement but I'm not sure if I'll ever use it.  Mine is with hers in her urn that I made.  That's where it belongs.  It was hers and she took it back the morning she died.  I just borrowed it for a while because I needed her strength.  People don't understand.  Well, they aren't people.  They're just the gallery.  They don't participate in my life, but they can judge, ridicule, act out their disgust, and prod me on the stage with gaffs.  

There is no hunt, or battering the shadows for a replacement.  The thought is physically disgusting.  In my behaviors I find flirting or coquettish behaviors repelling.  I'll take a step back or two without realizing it.  So, at least, there, my body is faithful.  I'm not a betrayer.  That alone is a comfort.  

But, with my son being as he is, I deeply understand that fear most parents have at the passing of their partner, the loss of their treasures, their good place.  Affronted by mortality, the future becomes a dragon with blood soaked claws, scorching, acrid breath that ravages one's sleep.  When you're just a man with no horse, no sword, no shield, not even a scrap of armor left, how do you slay a dragon?  Some find someone else to do it for them.  I don't.  I wait.

But waiting, my legs stinging with effort, as I sweat and strain and paw to move an inch today, is so damned hard.  I just wish it weren't so damned hard.  

If I weren't so proud I could just lay here.  But the view is terrible.  You can barely see through the trees.  Not even one star in sight.  Maybe tomorrow I'll see one.  Maybe.  There is hope.  

Today, if I hadn't rolled over onto my back, I'd be face down in the mud.  It's sticky, and it clings.  But if you don't look for the stars, you'll never see them.  And face down in the mud is one very bad way to die.  You can't see anything.  You can't breathe.  Even the effort to roll over is tricky.  You're likely to slip, get that black ick deep in your mouth so you can taste despair.  It never really goes away.  

I have to go take a bath, wash away some pain and soothe my joints.  

Thank you for reading my introduction of sorts.  By the way, I'm Steve.  I'm a dragon slayer.  Well, maybe I will be someday.  Someday.

[JES]

@Steve Jones  I am so sorry on the loss of your wife.  This kind of loss brings the strongest of us to our knees... its hard to take care of ourselves at this time...be easy on yourself with your son, you are doing the best you can right now.... I know it is very challeging in good times to have an autistic child. I hope you have family or friends to help with his care.  All of your emotions are normal for our loss... we love deep, we grieve hard.  We all seem to second guess and have regrets, want their things left the way they were and so on.  We are here to listen, we understand, we are all in different times of this grief process, we are here for each other and we care.  Thinking of you and your son.

[KarenSunshine]

Oh my Steve, I came here tonight, came back here, because I am in so much pain and it's only been 4 months (tomorrow) since my dear husband Jim died.  I came hear crying and your pain has helped me to cry not only for myself but also for you, and your son.  How can we bear so much anguish?  I am doing everything I know to do and yet I seem to be slipping backwards.  I wish there was a short cut for you, as well as for myself.  My body aches and is tortured by the profound loss and grief and, ... I lack the words. I feel for you and for all the other anguished souls that are out there now.  I wish I had words of comfort. Life goes on ...I forget just why.  Maybe tomorrow the sun will shine and I'll notice.  I hope the same for you.  Try to be gentle with yourself.  And loving.

[KayC]

13 hours ago, Steve Jones said:

I have too many "should haves.

Steve, I am very sorry for your loss, that yet another has joined our ranks that we never wanted...that another is suffering as we are.

A wise grief counselor said on her forum, "throw away the word 'should'."  We are do what we know to do, we are learning, scrambling to do the best we can in a world that throws us curves.  We don't always know the best move, but we keep doing what we can.  In the end we are no more guilty for their death than anything, we are the ones who love them, who would have done anything we could for them.  We aren't trained medically, we're at the mercy of those who have been.  When the medical practitioners fail, that is on them.  We pay them a lot of money for their knowledge.  I am so sorry you feel your wife was let down but it's on the medical field, not you.  I know, we feel we've somehow failed them, we feel we should have been able to stop what happened, but that is giving us a whole lot more power than we possess.  I think it's particularly hard on men, they seem themselves as the protectors, but even I, as my George's wife, wished I could have prevented what happened, yet in being realistic, I know with my head that I didn't do anything wrong.  Sometimes it seems something is working against us.  We have no name for that, but it is something that haunts us.

You have a full plate and are carrying quite a load.  I want you to know that those of us here wish to support you, we are rooting for you.

It's been a long time since I lost my husband, and there are some things that have helped me, I'd like to share them with you.  It's not a one size fits all but just things to consider...some might be applicable now, some way down the road, some you may not feel fits you, but if even one thing is of help to you, that's good.  I think the advice given me that helped me the most was taking one day at a time.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

• Take one day at a time.  The Bible says each day has enough trouble of it's own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
• Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
• Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
• Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255
• Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
• Try not to isolate too much.  
• There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
• Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
• Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
• In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
• Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
• Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
• Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
• Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
• Keep coming here.  We've been through it and we're all going through this together.
• Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
• Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs))) Praying for you today.

 

[Scott A]

On 5/2/2019 at 5:46 PM, Steve Jones said:

I really don't know what the etiquette is here, so I apologize if I don't do this well.  My wife passed on March 1rst of this year.  That loss is still really fresh, and in a way she's still here.  I haven't moved her shoes from where she used to sit.  I haven't touched anything on her night stand.  Everything on her side of the bed is still exactly the same as it was the morning I took her to the hospital for the last time.  Her things that I retrieved from her room are still where I laid them the night my son and I went to hold her hand after she had passed.

I don't know a lot about medicine, but I know some.  I know that she was talking and walking when she went in and within two days she was on a ventilator.  In another, they'd killed her.  

I carry a mountain of guilt, just as anyone carries a mountain: one heavy load at a time every day.  And like Sisyphus, it never ends, or never seems to.  So when I don't say that I "lost" her, I mean it.  I didn't lose her, I failed her.  Who cares if the body or the soul is broken?  The result remains the same.

She was too young to die in a hospital.  

I feel so worn down.  My son has autism.  He is his own challenge.  No matter what my limit is, I seem to find it every day with him. The more time I spend, the more he grows, but some days I can't even make it through the starting gate, much less perform.

For a very long time her health took priority.  All of my resources went towards that.  It was all I could do to keep up, and in the end I didn't.  My son is much the same, but I'm fighting through the overgrowth of years, chopping a path through behaviors that I only partially corrected, or didn't pay enough attention to, or financial and emotional quagmires that sop my feet and pull at me with thick, black, accusing mud, "You did this," "you weren't paying attention and this is where he ended up," "you should have done this years ago."  

Should have.  That is a dangerous phrase.  I have too many "should haves."  I am wealthy in needles that feel like bayonets.

I stumble through work.  Some days I'm okay.  Most, I am not.  I've always been predominantly alone.  Now, my presence is a burden, and I'm almost always sent to where I won't be a contagion to others.  That bareness is excruciating.  The days when my job doesn't require a lot of skill and attention are the worst.  Too much time to think.  Too much time to remember.  Too much time to accuse.  

I stopped wearing my ring.  I ordered a silicone replacement but I'm not sure if I'll ever use it.  Mine is with hers in her urn that I made.  That's where it belongs.  It was hers and she took it back the morning she died.  I just borrowed it for a while because I needed her strength.  People don't understand.  Well, they aren't people.  They're just the gallery.  They don't participate in my life, but they can judge, ridicule, act out their disgust, and prod me on the stage with gaffs.  

There is no hunt, or battering the shadows for a replacement.  The thought is physically disgusting.  In my behaviors I find flirting or coquettish behaviors repelling.  I'll take a step back or two without realizing it.  So, at least, there, my body is faithful.  I'm not a betrayer.  That alone is a comfort.  

But, with my son being as he is, I deeply understand that fear most parents have at the passing of their partner, the loss of their treasures, their good place.  Affronted by mortality, the future becomes a dragon with blood soaked claws, scorching, acrid breath that ravages one's sleep.  When you're just a man with no horse, no sword, no shield, not even a scrap of armor left, how do you slay a dragon?  Some find someone else to do it for them.  I don't.  I wait.

But waiting, my legs stinging with effort, as I sweat and strain and paw to move an inch today, is so damned hard.  I just wish it weren't so damned hard.  

If I weren't so proud I could just lay here.  But the view is terrible.  You can barely see through the trees.  Not even one star in sight.  Maybe tomorrow I'll see one.  Maybe.  There is hope.  

Today, if I hadn't rolled over onto my back, I'd be face down in the mud.  It's sticky, and it clings.  But if you don't look for the stars, you'll never see them.  And face down in the mud is one very bad way to die.  You can't see anything.  You can't breathe.  Even the effort to roll over is tricky.  You're likely to slip, get that black ick deep in your mouth so you can taste despair.  It never really goes away.  

I have to go take a bath, wash away some pain and soothe my joints.  

Thank you for reading my introduction of sorts.  By the way, I'm Steve.  I'm a dragon slayer.  Well, maybe I will be someday.  Someday.

I just wanted to say hi, tell you I'm so sorry for your loss and to let you know you're not alone.  Stay strong, keep hope that tomorrow will be a better day.