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.
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!
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.)
“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…
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.
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.
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…
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.
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.)
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.
Friday just doesn’t seem to be up for a lot of long-form blogging lately.
- Photographer Belinda Richards makes funny noises to dogs (and other animals), photographs their expressions
- Very Important Cat Tweets
- Photographer Lassi Rautiainen documents the friendship between a wolf and a bear
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.
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.