We met on Facebook over a job neither of us wanted

[duodave]

Love. What is love? It is this emotion that is so gratifying, so addicting, that we’re willing to risk the possibility of great pain, should it not work out. And I guess that’s why we’re all here.

 

I’ve loved a few women in my days. And unlike romantic movies or books or whatever, I’ve never experienced it exactly the same way twice. I suppose in a way I still love some of the women I’m no longer with. In their own way, I guess. But until now, I’ve never experienced the finality of my spouse departing so suddenly, so painfully. And her love I’ll never experience again. Because Erin is gone from me, from her family, from us all.

 

But I’m getting ahead of myself. I’m not writing a novel, but I’ll back up, at least.

 

When I was born in Columbus, Ohio in November of 1966, the youngest of eight kids, my parents’ doctors weren’t sure what was wrong with me. They didn’t have fancy DNA tests that would reveal I had the bone disease Osteogenesis Imperfecta. They wouldn’t know for a couple of years that I was fragile and could break just from walking across the room. I struggled with health issues all my life, but my bones strengthened enough that I to this day walk moderately normally.

 

In 2015 I was living in Columbus, doing some part time support work for a software company. I had also previously done web design, but I was somewhat removed from the field. A customer of the software company expressed she wanted her company web site updated. I could have offered to do it, but I’d done such things before and didn’t want the headache of a picky client and so on.

 

At the time I was in a Facebook group of other disabled people, a wide variety of disabilities. Nothing real specific. I put it out there that I had a potential web design client and wanted to see if someone in the group was interested in the job.

 

A girl from Indianapolis sent me a DM on Facebook inquiring about the job. I described it to her, and like me, she quickly declined the job. But we didn’t stop talking. We became fast friends. I discovered we had much in common. Like me, Erin was born with Osteogenesis Imperfecta (OI), but she was more severe, spending her days in a wheelchair. Although I was older than her (she was almost 30 at the time and I’m 20 years her senior), we liked many of the same geeky properties like Star Wars and Doctor Who. She was more into comic books, though.

 

2015 rolled into 2016, and we arranged for me to visit. I didn’t drive, so I discovered that I could take a bus from Columbus to Indianapolis for only $25. Our first visit was in October of 2016. It wasn’t long before we had other visits, and she eventually suggested I come for Christmas and spend the winter, since I otherwise would be alone in my apartment.

 

I won’t draw it out, it was in the early Spring I found myself moving to Indy. We went to conventions where we met comic book artists and sci-fi actors. We went to family events such as family reunions and weddings. We did all the things, except… we couldn’t get married.

 

Both of us, being disabled, had our own public support. And there were rules about if we got married, our support would be affected. She would lose some of her SSI, and I would lose some of my medical insurance support. So we told our families we were engaged, like permanently engaged.

 

We even moved into a condo. We found a great place that was completely accessible and would handle her electric wheelchair. He nephew moved in with us so he could ride a school bus to the local high school. It was great having him around with both of us disabled. It was almost like a family, the three of us, two cats and a dog.

 

Nothing good seems to last forever, does it? Erin had told me repeatedly that I would outlive her. I said she was being silly, I was 20 years older than her. But as time went by, her health declined. She would spend time in and out of hospitals over the next few years. And somehow, despite all that, she escaped getting COVID.

 

But in November of 2021, she took a downward turn and never fully recovered. It turned out to be a kidney infection, but it caused a seizure which in turn fractured bones all over her body. It was this that kept her in the hospital for almost a year, because she was so fragile it was difficult for the nursing staff to care for her.

 

In the end it was her reliance on pain medicine that was her downfall. She seemed to be fine one day and the very next she was gone from us. It was tragic, but at the end she was surrounded by family and friends.

 

A doctor told us that people who rely on narcotics all their lives have difficulty breathing. She was incapable of fully removing CO2 from her body. Over time, that meant it built up in her system. Occasionally this would manifest itself in confusion. They’d put a CPAP on her and it would seem to clear up. But at the end, it wasn’t enough. On November 20, just a few weeks ago, she was gone.

 

That evening I came home from the hospital. Her nephew had moved to Erin’s dad’s house a few months before, so it was just me, the cats and the dog. I was no longer holding down the fort for Erin to return from the hospital. Now the place was just mine. But everywhere I looked I would see her hearing aid batteries, her insulin pens, her electric wheelchair. Things she’d never use again.

 

I could never again watch a Marvel movie with her, or text her a funny YouTube video. I sat down at my computer and wrote the Facebook post I never expected to write. God the house is quiet.

 

I spent Thanksgiving in Ohio with family. They were great. I took the dog with me, and he had the time of his life. Has she only been gone less than two weeks?

 

Well, so, that’s my story, I guess. Just me banging around the empty house. I’m down one cat because her nephew asked if he could have one. Her family calls and texts every so often to see how I’m doing. Hanging in there, I guess. I’ve been watching “Wednesday” on Netflix and it makes me sad she never got to see it. She would have loved this show.

 

So I have I answered what love is? I don’t know. It’s wonderful. It’s addictive. It’s painful. It’s loss. I can’t imagine loving anyone the way I loved Erin. Time will tell.

[Roxeanne]

Beautiful story duodave!

As for all of us here a tender love story!

Take good care of yourself

Warm hugs Roxi

[KayC]

I echo Roxanne's sentiments!  Thank you for sharing it with us.  I am so sorry for your loss and now the missing begins, trying to figure out how to live without her...that's the truly hard part.  (((hugs)))

Grief Process

This is not a one-size-fits-all, what strikes us one day will be different a few months/years from now, so please save/print this for reference!

I want to share an article I wrote of the things I've found helpful over the years, in the hopes something will be of help to you either now or on down the road.

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 its 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 or www.crisis textline.org or US and Canada: text 741741 UK: text 85258 | Ireland: text 50808
• 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.

 

[Robert D.]

duodave

I appreciate you telling your story...about your love for your beloved Erin. Your love story is so beautiful my friend! We are all blessed to hear it. Very sorrowful of why we are meeting you....very sorry for your loss of Erin....But, glad you found us. You will make it through this...you really will. It may not seem like it now...but you will be ok. I lost my beloved JoAnn of 23 years nearly 4 months ago on Aug 11. And the Lord has blessed me so much to find these wonderful people here that understand grief and it's effects so well. You will be helped immensely through these very hard times...the hardest....but you will make it through it. I want you to know that I just prayed for you to the Lord, for peace and strength. God bless!!

Your friend in Ohio,

Robert

[Lost7]

Dear Duodave 

I am so sorry for your loss of your sweet love. It's hard I know. I lost the love of my life of 37 years almost a year ago to COVID-19. He was completely healthy and had never been to the hospital except to go and die. What caught me about your story was " time will tell" rely on the time because it will dull the edges of your pain. I will be lifting you up in prayer take care of yourself

Blessings Lost7 

[duodave]

I went to Ohio over the Thanksgiving weekend and I've been home since Monday. Seeing family was helpful. But since I've been home, the house is so quiet. Over the past year I was in autopilot - I would get up, go to the hospital, spend the day with Erin. It was, in fact, draining. But little did I know that not having that regular day-to-day would in fact, be worse. 

Now, I get up, feed the dog and the cat. Then - what? Watch TV. Check Facebook. Play a mobile game. Think about doing something productive. Don't do the thing I probably should do. Oh yeah, I guess I should eat. There is that. Why is the house so quiet? Why did I buy a computer keyboard that's so quiet? I hate the quiet now. 

I don't hear Erin watching a show on her phone. I don't hear the brakes on her wheelchair. I don't hear... oh I don't know. The quiet is the worst. Now I know how Poe felt when he wrote the tell-tale heart. 

[Ronni_W]

On 11/30/2022 at 10:30 PM, duodave said:

[...] So I have I answered what love is? [...]

No, of course you haven't...but only because "love" is different for everyone. You cannot answer it for anyone else.

But. You have answered it, for how love is for you. ❤️ 🙂 ❤️.

[foreverhis]

21 hours ago, duodave said:

The quiet is the worst.

Welcome.  I'm so sorry you lost your wonderful Erin.  It likely doesn't seem like it right now, but what a gift you gave each other.  Unconditional acceptance and love is rare, it is precious, and when we lose it, it is devastating.  Your story is very touching for all of us here.  We understand, truly.

I thought I understood the oxymoron "deafening silence," but until the day I came home from the hospital alone, forever alone, I never knew how true it is or how it would feel.  I keep the TV or music on almost all the time now, even though it's more than 4 years later.  But it's not just the silence, is it?  It's the stillness.  Where once we had a home, I now live in a house.  I am learning ways to make this place we were so proud to finally be able to buy, into a home again.  It's a slow process and many of my husband John's things are still here.  Maybe they always will be.

On 11/30/2022 at 7:30 PM, duodave said:

So I have I answered what love is?

You have, for you, which leads me to my next thought.  The members here have much in common.  We've all lost the loves of our lives.  Yet we are also unique, as our loves, lives, and stories are unique.  Because of this, our grief journeys are unique.  I often write that we walk our own paths, but on the same road together.  Some of us are further along, some like you are just starting.  Yet we recognize each other by the pain we know that cannot be expressed in the words of any language known to man.  Love is what all of mankind strives to find, but few are lucky enough to know it on the cell-deep level that we here have found.  That is indeed the risk we take, but even knowing I'd be where I am now, I would still jump in with my whole heart.  My John was worth it; he was worth everything.  It's clear your Erin was worth that risk too.

For now, while your grief and loss is so new and raw, all you can do is what you are doing.  Believe me, I know all about "I should do XYZ," but not being able to face it or, more often, simply not caring if I do it or not.  It's very common and not unexpected at all.  The cliche of "one day at a time" is a cliche because it is true.  It's important that you do focus on self care as much as you can because you have a dog and cat who are relying on you to help them through this time.  Let them help you too.  Let them love you and comfort you. 

I have found much help and comfort from the members here.  I hope being here helps you too.

[April Ballou]

@duodave I hate the silence too.  That's why I listen to music 24/7.

[KayC]

@duodave  Your post is so poignant!  Yes the quiet...