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Cool Stuff Friday

Friday has written more than 10,000 words on Terminal Peace so far this month.

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Health Care Costs

As the health care debate continues, I wanted to look back at the costs of treatment for my wife’s cancer, as well as what was and wasn’t covered, and how our insurance and financial situation could have so easily bankrupted us.

I started by pulling up the total medical charges she accrued from December of last year through the end of August, when she passed away. That total came to $1,888,934.72

We were fortunate to have very good health insurance coverage. Of that total, we paid $1811.24 out of pocket in co-pays. (This doesn’t count all the other expenses, like food and transportation and lodging as we went back and forth to various hospitals, and so on.)

In other words, without health insurance, we would have been on the hook for close to two million dollars of medical bills over the course of nine months.

Back in 2015, when Amy was working full time at CMH, we decided I would try to quit my day job and write full-time. She would provide the salary and benefits, while I would bring in all that shiny author coin. Only my bosses at the day job didn’t want me to go, so they worked out a quarter-time position where I’d be able to work primarily from home. It meant a small but steady paycheck, and thanks to a clause in the Affordable Care Act, I was able to continue getting our health insurance coverage through my own job.

Why is that important? Because Amy’s benefits – vision and dental – ended in February 2019, because she hadn’t been working. On account of her being hospitalized with cancer.

Let’s assume things went as we’d planned. Assume we were on her health insurance. She’d been working full time for years, doing everything “right.” But then she got sick and couldn’t work. 2-3 months later, she lost her insurance.

Looking at the total charges for March through August, we would have been on the hook for $930,076.20 in medical bills.

The alternatives would have been either COBRA coverage, or else finding a plan on the Health Insurance exchange that provided something close to what we had.

COBRA coverage for our vision and dental after we lost Amy’s insurance for those was about $150/month. That stung, but compared to the medical numbers, I’m not gonna complain too much.

Equivalent health insurance coverage for our family, either through COBRA or the exchange, would have been around $2000/month. Better than having to pay a million in medical bills out of pocket, but how many people do you know who can afford an extra $2000/month in unexpected expenses?

Keep in mind, lymphoma is one hell of a preexisting condition. Without protections for those conditions, I’d have been stuck running a million-dollar medical GoFundMe.

I saw a Facebook friend the other day talking about how much he liked and wanted to keep his private insurance. Unfortunately, as I learned this year, employer-based coverage can disappear when you need it most. What’s the point of having great health insurance that only insures you as long as you don’t get too sick?

As horrible as this year has been, we were fortunate when it came to our health insurance. Lots of people aren’t. More than half a million families in the U.S. file for bankruptcy every year because of medical bills. Then there are those who are forced to ration their medicine or forego health care altogether.

We need to do better.

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Cool Stuff Friday

Friday wants to know if this blog post can count as NaNoWriMo words.

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NaNoWriMo 2019

At the last minute — okay, technically after the last minute, since it was later in the day on November 1 — I signed up for National Novel Writing Month. I joined knowing there was pretty much 0% chance of me reaching the 50,000 word goal for November. I doubt I’ll even get close.

Which is fine, because while 50,000 words of novel would be great, that’s not my goal. I wanted to try to push myself into working more on Terminal Peace. I haven’t written at my usual pace for about a year now, and at least half of that time, I wasn’t writing at all. For the past month, I’ve been slowly getting back into the book, maybe a few hundred words a day. I figured this might help me shift into a higher gear.

It sort of worked. In the first five days of November, I did 6,474 words. I averaged more than a thousand words/day. It’s the best writing streak I’ve had since 2018.

Then, of course, I hit a point in the story where I needed to know the backstory of an entire planet, build an alien culture or two, figure out the motivations of two ambiguous villains … basically, yesterday and today were 0-wordcount days as I tried to figure out the next chunk of the book.

That’s disappointing after a good five-day streak, but I don’t want to ignore the significance of those five days. I was able to focus more, and get closer to being the working writer I was a year ago. I’m not there yet, but it’s progress. And as I noted on Facebook, Terminal Peace now includes the phrase “ranivorous cleavage,” so you know, that’s a thing.

I’m still brainstorming and making notes, but hopefully I’ll get back to producing actual words tomorrow.

Good luck to everyone taking NaNoWriMo on this year!

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Make sure your partner/beneficiary knows about any life insurance policies you might have. Likewise, make sure you know about any policies you have. (This advice comes courtesy of the small policy Amy had through her union, which I learned about more than a month after her death.)

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“What do I do with all of her belongings?” Remember there’s no rush or deadline. You don’t have to go through your loved one’s belongings in the first week, the first month, or even the first year.

I’ve been going through a little bit at a time. There are things I’m keeping, other things that go to our kids or family/friends. As for the rest, a few options…

  • ThredUp – An  online shop for secondhand women’s clothing. They mail you a postage-paid bag. You fill it with clothes in good condition and mail it back. They do the work of selling, and you get a small commission. Amy had a fair amount of new or near-new clothes and handbags that wouldn’t fit anyone we know.
  • Local Shelters – Amy had a bunch of hair-care and other products, along with things like the small bottles of baby shampoo you get at the hospital. We weren’t going to use them, so I spoke with a friend at a local domestic violence shelter and donated several boxes worth for their clients.
  • eBay – This has almost been more hassle than it’s worth, but I’ve put a few things up for sale on eBay. I don’t think I’d do it for small items, but to pick an example, Amy had all seven seasons of Gilmore Girls on DVD, new and unopened, and none of us were going to watch them.
  • Goodwill – Not my first choice, but better than just throwing things out.

This is a long, difficult process. Even when I think I’m doing okay, I’ll come across something that knocks the emotional wind out of me. This week it was the big teddy bear Amy had when she was a teenager. I had no idea she still had that tucked away in the back of the closet…

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Don’t try to tough it out and lock the pain away. We do such a lousy job teaching people, especially guys, how to cope with pain and grief and other emotions. “Don’t cry.” “Be strong.” “You’ve got to get over it.”

Screw that. It’s been just over two months, and it still hurts every day. Some days are easier than others. It’s not a straight path. It still hurts. It’s still unfair. I’m still pissed. She’s on my mind all the time, either in my thoughts or right below the surface, waiting.

Let yourself hurt. Let yourself cry. Let yourself grieve.

It’s okay to get help. In my case, it’s a support group I’ve been attending for a little over a month, and I just started going to see my therapist again.

As my support group facilitator says, the grief is going to come out. Either you accept and work to manage the grief, or else it’s going to manage you.

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It’s all right to be happy sometimes.

I have guilt about being alive and relatively healthy when Amy dealt with a lifetime of various health issues. I wish I could have taken some or all of that burden for her. But I know she loved me, and I know she’d want me to be happy.

Easier said than done.

It’s harder when it feels like there’s nothing to look forward to. Tomorrow I’ll wake up and remember once again that Amy’s gone. I’ll go through a few more of her belongings and deal with the pain and guilt of that process. I’ll make dinner and be reminded once again that she was better at it than I am, and that she should be here too. It sucks. Why would anyone want to wake up for another day of that?

So I’ve almost had to force myself to create things to look forward to. I bought Star Wars tickets for myself and my son, along with some friends, so we could see the movie together. I’ve got an appointment in a month to start on my first tattoo, which will be a tribute to Amy and our kids. I signed up to attend ConFusion in January, my first con in about a year and a half.

None of it will be right without Amy. But they’re things I know I’ll enjoy, even if that enjoyment is mixed with pain and guilt. And I know she’d want me to keep living and keep trying to find things that make me happy.

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Talk to your partner/loved ones about what you want to happen if you die. Amy was so focused on getting better that we barely talked about the worst-case scenario. Even acknowledging it out loud felt like giving up. Logically, we knew it wasn’t, but logic doesn’t always beat emotion.

But those few brief conversations we did have helped so, so much.

Sitting there in the funeral home as the funeral coordinator asks question after question – burial or cremation, what kind of ceremony, where should it be held, what kind of prayer cards do you want, what about flowers, and so on – it’s overwhelming.

I didn’t know everything she’d want, but I knew the basics. Knowing the memorial service we put together was something she would have appreciated, it helped a lot. Bringing Amy’s parents and our daughter along to the planning session (they all wanted to come) helped too – together, we knew Amy well enough to figure out the best choices for the things Amy and I hadn’t discussed.

But I wish we’d talked more. Preferably before she got sick, which would have eliminated that fear and sense of giving up…

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I’ve been forcing myself to say yes to pretty much every social-type invitation, mostly people asking if I wanted to grab lunch or dinner or whatever. I also pushed to get a few friends on board for a monthly game night, which should start in another week or so. I know I need some social interaction, to get out of the house and interact with people who care about me. Even when it would be easier to just stay home and crawl back into bed.

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Be gentle with yourself.

I had to clean out Amy’s office this week. 50+ boxes of stuff to go through. That was hard. For the rest of the day, I skipped exercise, I didn’t try to write, I pretty much just read and watched TV. I’m trying hard to be okay with that, with allowing myself to take breaks and recognizing the toll all of this takes. (Or, you know, with letting myself go weeks between blog posts, aside from the Cool Stuff Friday links.)

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All things considered, I think we’re doing all right. It’s hard – grief doesn’t have an expiration date – but we’re still living our lives each day, which is what she would want.

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Cool Stuff Friday

Friday is gonna dress up as Monday for Halloween this year.

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Widowed

Did you know Facebook doesn’t let you change your relationship status to “Widowed” until your partner’s Facebook page has been memorialized? (Unless, presumably, your partner isn’t on Facebook, or isn’t linked as your spouse.) I mean, I kind of understand why, but dang…

I’m still struggling with that label. When Amy and I got married sixteen+ years ago, that was supposed to be it. I mean, we knew one of us would go before the other, but that wasn’t supposed to be until were were both winding down.

“Til death do us part.” In my mind, that always meant death from very old age. Looking at those words now, they feel like an expiration date on a relationship that was supposed to last forever.

Intellectually, I know I’m not married anymore. Emotionally? Not only am I still wearing my wedding ring, I added Amy’s wedding band too.

Wedding bands

I know there’s no rule on how long you’re “supposed” to wear your wedding ring after you lose your spouse. Some people take it off right away. Others move it to the right hand, or wear it on a chain. I’m just not ready, and I have no idea when or if that will change.

At group last night, we had an activity about the tasks of grieving, one of which — and I’m paraphrasing — is the emotional adjustment to a new and different relationship with the dead. Amy is still a part of my life. I see her in our kids, our belongings, our friends, the photos that pop up on my screensaver. I talk to her at least a little bit every day. I hear her in my memories.

The relationship now is with those memories. More than thirty years worth of memories, good and bad. But it’s not the same. That’s one of the many things I have to come to terms with.

Sixteen years ago, neither of us really knew how to be married. We both screwed up sometimes. We had to figure it out as we went. Some things we sorted out fairly quickly. Other parts took years. There are bits I don’t think we ever fully figured out. But by the end, I think we made a pretty good couple.

I barely remember what it was like to be single. I sure as hell don’t know how to be widowed. It’s one of the many things I know I need to learn going forward.

I know my life needs to go on, in whatever shape or form it takes. I know Amy would want my life to go on. I just never imagined it would have to be in a world without her.

Fortunately, I also know I don’t have to figure it all out today.

Grief: Doing it Wrong?

For me, blogging has always been a way of sharing things I care about and connecting with folks. That encompasses everything from sexual assault issues to arguments in the SF/F community to just geeking out about whatever catches my interest in a given week.

Well, the focus of my life has been a bit different for the past ten months, and especially so since August 29. An awful lot of my time and energy is spent dealing with the aftermath of losing Amy. There’s paperwork — so much paperwork — and belongings to sort through and online accounts to clean up and close, not to mention the whole single parent thing.

And I’ve been immersing myself in that work, partly because it needs to be done, but partly because it keeps the grief from dragging me down… sometimes.

Maybe it’s my own background in psychology. Maybe it’s having spent almost 16 years married to someone with so much more experience in psychology and counseling. But I keep worrying that I’m grieving wrong.

I’ve attended three sessions at Ele’s Place, where I’m dealing with the most recent death in our group. Sometimes it’s helpful to be in a room with people who understand. Other times, someone will talk about a particular feeling — take guilt, for example — and I end up wondering why I don’t feel that too. What’s wrong with me?

I know everyone grieves differently. I know it’s ridiculous to expect my grief to follow the same paths and patterns as anyone else’s.

I also know grief is hard. I lost my wife and best friend. I lost my partner. I lost the future we expected to have together, all the hopes and dreams and plans… It’s overwhelming, and it’s tempting to lock it all away in a box and not deal with it.

I know that’s not the healthiest approach. It’s one of the reasons I wanted to start attending Ele’s Place, to force myself to face that grief, to work on figuring out how to live with it.

I keep questioning. Why haven’t I cried more? Am I just a cold, stone-hearted person? Is it because I cried so often during the nine months we were fighting cancer, and I’m just exhausted and cried-out?

I realized earlier this year that a part of me was grieving even before we knew whether Amy would survive. (And I felt guilty as hell about that, too.) In trying to understand what the hell was wrong with me, I discovered something called anticipatory grief.

Apparently what I was going through was kind of normal? But it means some of the wounds don’t feel quite so exposed. It’s been just over a month since I was able to talk to her, but it’s been almost a year since we were able to sleep together in our own bed. If grief is a path, I feel like my progress along that path skips around from one day to the next. It’s disorienting and confusing.

The biggest symptom I’m aware of is lack of sleep. I still have a really hard time getting to sleep at night. All the thoughts I’ve been too busy to deal with during the day come rushing back. I roll over and touch her pillow and remember snuggling up with her. I talk to her. I try to sleep, and after a half hour or an hour I give up and read for a bit or find something else to do. And then it’s 6:10, and the alarm is telling me it’s time to get up and get my son ready for school…

Part of me feels relieved that I’m not sleeping. It’s a reminder that I’m not stone-hearted, that I’m hurting and grieving just like I’m supposed to. But I also know it’s not healthy, and I’m trying to adjust things to help me sleep a little better.

I don’t know what I’m doing. There’s no handbook. One therapist says it’s good I’m keeping busy. Another points out that keeping busy is a way to avoid facing those hard feelings. I suspect they’re both right. Everyone grieves differently, and it’s a process that lasts years, if not an entire lifetime.

And I’m basically winging it. Trying to figure it out day by day, the best I can.

From what I’ve learned, that’s pretty much how grief works.

Four Weeks Into the New Normal

A collection of random thoughts and observations from the past four weeks…

  • We accumulate a lot of online accounts. I’ve been deleting most of my wife’s, mostly because I don’t want her personal information out there where it could be hacked or abused. Makes me realize how many places I’ve created logins for over the years…
  • I started writing a short story I’d been thinking about toward the end. It failed miserably. I think part of the problem was that I was thinking about the story when Amy was still alive. Everything now is so different … I can’t get into the right mindset.
  • So instead, I’ve started working on Terminal Peace again. Only a few days in so far, and the wordcount is pretty small, but it’s a start.
  • Amy had worked for a while at Community Mental Health, but when she checked her history, she didn’t think she had quite enough to be vested for her pension. She was so frustrated to have fallen just a few months short. But after talking to her employer and her retirement system, she had actually made it, which means her pension now comes to us. It’s not huge, but it’s a monthly check, and is one more way she’ll help take care of us for the rest of my life. I wish she’d known…
  • I do pretty well during the day, for the most part. I’ve got a lot to keep me busy, and that helps a lot. Nighttime is another matter. I’m still not sleeping well. I’m trying a few things to help, but I don’t expect this to really change for a while yet.
  • My son and I are both attending groups at Ele’s Place, for kids who’ve lost a parent (and for the surviving parent). Only two sessions so far, so it’s too soon to really say much, but I hope it’ll help us to deal with and work through the grief.
  • Finally tried to get back to karate this week, only to find class was cancelled. Dang it, I was really looking forward to punching stuff, too!
  • Being a full-time single parent is rough. But I promised Amy we’d be okay, and I’m damn well gonna do the best I can to keep that promise.
  • Looking at our financial situation, I may be able to work about half-time (20 hours/week) at the day job, which would give me time for everything I need to do at home and for my son, and maybe even a bit of writing time… Nothing’s finalized there yet, though.
  • It all still feels unreal. The idea that she’s gone, that the part of my life where we were married is over … it’s absurd. It’s not that I expect to hear her pulling into the garage after work or anything. It’s more like that Beverly Crusher quote from Star Trek: “If there’s nothing wrong with me, there must be something wrong with the universe.” I feel like something’s wrong with the universe.

Blogging hasn’t been much of a priority. I’ve had thoughts about stuff — renaming awards, fools filing DMCA notices on themselves, the good and bad of The Dark Crystal: Age of Resistance — I’ve just been using my spoons for other things. Don’t know when or if that will change. But hey, I posted something today. That’s a start, right? One more step toward the new normalcy…

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Memorial

Flowers

Thank you to everyone who attended Amy’s memorial yesterday. It was such a beautiful day, and a perfect location to remember her. I was overwhelmed by the love and support, and I think she would have approved. (Though she probably would have thumped me for a few of the pictures I had displayed…)

I’m so grateful for everyone who helped with the planning and setup and all the rest.

It wasn’t a formal service, but more of a celebration and remembrance with family and friends and food. We were in one of the park’s largest pavilion areas, and we filled it to overflowing. One more sign of just how many people loved her.

Some of us took a little time to talk about Amy, sharing stories and memories and talking about how much she meant to us. I know there were others who wanted to speak, but were hurting too much. Amy would have been the first to hug you and tell you that’s all right too.

I asked my son how he felt after he got up to talk about his mama. He said it hurt to do, but it also felt good. I thought that summed the day up beautifully. It did hurt. It still does, and it will for a long time. But it felt good to be with people who loved her, and to remember and celebrate how amazing she was.

A few people asked me to share what I said at the beginning, so I’m copying that below.

All of our love and gratitude to all of you who’ve helped us through this past year, both in person and online. Your support helped a lot. Thank you.

Read the rest of this entry »Collapse )

Memorial, Donations, Cards

Amy’s memorial/celebration of life will be Sunday, September 8 at 2 p.m. at the Overlook Pavilion in Burchfield Park. 881 Grovenburg Rd, in Holt.

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In lieu of flowers, donations can be made in Amy’s memory to Saint Vincent Catholic Charities or the Children’s Leukemia Foundation of Michigan.

Amy worked for a time at St. Vincent, which does a lot of good for children and families. And the Leukemia Foundation supports other blood cancers as well, and doesn’t limit that support to children. They helped us with copays and other expenses in recent months.

I’d also ask that, if you’re able, please consider donating blood or platelets. Chemotherapy kills cancer cells, but it also damages the bone marrow, which is where blood cells are produced. Amy required a lot of transfusions to get her through chemo. Those donations make a real difference to people fighting cancer and other diseases and injuries.

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For those who might want to send cards, they can be sent to our home address if you have it. If not, you can also use:

Hines Family
P.O. Box 521
Holt, MI  48842

(I hope you’ll understand and forgive my not posting our home address here.)

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Finally, Amy’s obituary is on the funeral home’s page.

Amy

Amy in 2016My wife Amy died yesterday, bringing an end to her nine-month fight with cancer.

There’s so much I want to say about her, and so much I’ll probably be writing in the future.

For now, know that she’s the strongest person I’ve ever known. She fought this thing so hard… Again and again, she surprised doctors and nurses with her strength and determination. That fight gave her the chance to see her son start high school, her daughter start her first real job. It gave us nine more months to be together and love each other.

She dealt with chronic pain for most of her life. Cancer and treatment made that worse. But at the end, she wasn’t hurting. She was comfortable. Her children were with her, along with me, her parents, and others who loved her.

She worked as a child and family therapist, and the tributes I’m already seeing from some of her clients and coworkers confirm what I already knew. This was her calling and her passion, second only to loving her children. She’s the most caring and empathic person I ever met. She helped and inspired so many people.

A few nights ago, we were able to transfer her to a wheelchair, and I took her for a walk outside the hospital. We got to enjoy the (sort of) fresh air, the flowers and trees around the hospital. She loved going for walks, and I’m so glad we had the chance to do one more.

Our family and a few close friends have been helping out, sharing love and support and grief, so we’re not alone. We’ve got a lot to do… it actually helps me a little to have things to do to keep myself busy for these first days.

I appreciate so much the love and understanding and support you’ve all shared through this. I hope you’ll understand if I’m a little hit-and-miss in responding to email and messages in the immediate future.

I’ve been telling my son the reason it hurts so much is because we love her so much, and as hard as that pain is, would we trade away the love and the time we had with her?

I was lucky enough to have almost sixteen years together with her as a family, and another fifteen as friends.

I’m sure I’ll share more in the days to come.

For now … I’m just so grateful for who she was and how much we shared and how much better our lives were because of her. And I miss her.

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Cool Stuff Friday

Friday was not ready for school to start back up.

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Quick Personal Update

We’re still at Henry Ford Hospital in Detroit. Amy received the first round of RICE chemotherapy about two weeks ago. It appears to have helped some against the tumors, but it also hit her pretty hard. So we’re working to get her blood counts back up and help her regain her strength so she’s able to tolerate continued treatment.

Still a long road ahead of us to get her strong and healthy enough to be able to do the CAR T-cell procedure, which is the one that holds some hope for a cure. But she’s still fighting, and the rest of us are doing what we can to help.

I honestly don’t know what else to say here. Mostly, we’re just holding course and holding on…

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Jim C. Hines
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