This Is How I’m Grieving for My Husband—and a Future Without Him
Updated: Jun. 25, 2021
When my husband, 30, passed away from a brain tumor, I had to say goodbye to our future. Here's how I cope with anticipatory grief and loss.
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An unexpected brain tumor
One night, a few months after I had married my college sweetheart, we ended up in the emergency room. My husband, Jon, a neurology resident at NYU, was having some memory issues and positional headaches (his head hurt when he lay down or leaned forward). As a doctor, he knew that these could be signs of something more serious.
I thought we were both just being overly cautious by going to Mount Sinai Hospital that night, but it turns out we weren’t.
After doing an MRI, they found a mass in Jon’s brain that we would soon find out was glioblastoma: an aggressive, incurable brain tumor with a life expectancy of 12 to 15 months. We were both just 28, and Jon had been totally fine a few weeks earlier. Suddenly, on February 25, 2018, everything changed.
Over the next 26 months, I watched as our life slipped away, first slowly then much quicker. Jon had three brain surgeries, participated in two clinical trials, and had a variety of other treatments in the form of chemotherapy, radiation, immunotherapy, you name it.
He took a sharp turn in the spring and passed away on April 17, 2020, at the age of 30. Every time I have to say or write that sentence it sends shock waves through my system. It just feels like it can’t really be my life.
A harsh glimpse into the future
For a long time after Jon was diagnosed, I tried not to research glioblastoma. I wasn’t ready to know exactly what we were facing. I was scared.
But, eventually, I caved and researched the crap out of it—I’d like to pretend I’m one of those “take it one day at a time” people but, I’m not. I needed to know what we were looking at and what I could expect.
(Learn what anticipatory grief is.)
I figured out early on in Jon’s illness that everything I thought my life was going to be and everywhere I thought it was going were disappearing. If Jon would be gone soon, I wouldn’t be growing old with him.
Every stunningly happy, deeply meaningful, and life-altering moment we’d ever share would be before we turned 30. He lived longer than anticipated, but not nearly long enough.
Constantly grieving a piece of him
Most of the time, when you’re going through a great loss, you’re surrounded by family and friends and distractions. I know everyone wanted to be there for me, but the circumstances (Covid-19) made it impossible.
So last April I found myself a 30-year-old widow, thrown back into this weird alternate universe without Jon and without the typical frenzy of visitors. And honestly, without a whole lot of people, I could relate to—because how many 30-year-old widows do you know?
(Here’s what to know about disenfranchised grief.)
I didn’t lose Jon all at once. I lost him over and over again in small ways as the disease progressed. I lost him when he stopped being able to text, and then more of him when he couldn’t walk or couldn’t speak.
The disease chiseled away at him in a way that made it feel like I was constantly grieving a piece of Jon. Looking back, I know that this slow goodbye made the final goodbye a little less shocking for me, but I would never wish that kind of slow, heart-wrenching loss on anyone.
Going through anticipatory grief and loss
When you or a family member are ill, people will casually say things to you like, “Don’t read When Breath Becomes Air“ (a book about a neurosurgeon who dies from lung cancer), which makes you immediately want to read that book more.
So I did, and I read every book I probably shouldn’t have: books about young people with cancer, older people with cancer, about death and widowhood and grieving. I read books by doctors who treated cancer and I read biographies of cancer. My little brother looked at my 2019 reading list and just said “holy sh*t.”
I wanted to figure out how other people had lived with this—what doctors they had seen and what their symptoms were. I wanted to know if there was some stone I’d left unturned but also, I just wanted to know how people were dealing emotionally. I couldn’t stand the anticipation of the crash.
I studied these books like they’d help me prepare. Because most things in life you can prepare for in some way, and your performance is a direct result of that readiness. Maybe these books would tell me how bad I’d soon feel but also how to avoid feeling that way.
I thought that if I experienced these similar tragedies with these characters on a surface level, it would soften the impact for when it was my time. I’d already know so I wouldn’t fall as hard. My anticipatory grief was an imaginary, self-created cushion.
It wasn’t the worst plan. I do feel like those books made me realize some things earlier and therefore start grieving them earlier. I took stock of every little thing I was losing, everything I would miss. This may not have been everyone’s strategy, but it had to be mine.
Having to grieve everything I’d lost all at once would have been too hard. How do you say goodbye to the person you love? Your best friend, your family, your past, your future, and your sense of self? You have to, but I didn’t want to do it all at once when that day came. So I started early.
(Here’s how ambiguous grief is different from anticipatory grief.)
Guilt and questioning as a part of grief
While Jon was here, I felt so overwhelmingly guilty that I wasn’t able to save him. And as I say this, I know full well that logically I couldn’t have. But, I still let myself go down that road sometimes, wondering if there’s something I missed.
When Jon first passed I was so wracked with grief and overthinking everything that I had to write a list for myself, each day, of all of the things I had done right. I’d list things like our post-diagnosis vacations, getting him into clinical trials, and telling him I loved him often.
I spoke with a friend recently whose grandmother had lost her husband, his grandfather, when they were 92, and she still, in some ways blamed herself.
In this girl gang of widows (that I’ve made up in my mind) this is our signature, our tell. We’ll always wonder. Our guilt and questioning are as much a part of our grief as the sadness or aching disappointment.
It’s in human nature to want to believe we can fix anything, and it’s possibly the hardest life lesson there is when you find out that some things are simply too broken. And that those things will break you, too.
(Here are some mourning quotes that may help after loss.)
Growing away, growing different from before
On my 31st birthday, a few months after Jon passed, I realized that despite always being two months younger than Jon, I would now always be older. He would forever be that man whose life was tragically cut short at 30, and while time marched on for me, he’d remain the same. It’s both the biggest curse and the most extraordinary thing about time.
He’ll always be 30, and as the years go on, I will (God willing) grow older, grow different, grow away from the person he knew and he loved. Getting through the first few months without him was hard, but that realization was much harder.
(Here are 10 helpful things you should say to someone who is grieving.)
A mix of grief, happiness, and sadness
Grief is strange because it’s all-encompassing and yet it isn’t in every single second. There are some days (most days) when I feel happy and sad in the same breath.
Before Jon got sick, I was under the impression that you could only feel one thing deeply at a time, but it isn’t the case. That’s what makes people so resilient, even when it feels unnatural. There’s part of all of us that wants to feel all of it. And I feel all of it.
I find myself being grateful, more than ever, for the things I do have. I feel incredibly thankful for every minute I have because I know that’s the time Jon should have had too, and it’s time I’m now living for both of us.
Every day I ask myself: “How would Jon do this, what would he want?”
On days like his birthday where it’s easy to remember him and be sad, I try to celebrate him because that’s the way he would have done it. I made a concerted effort to talk with his friends and his family (forever my family too) because it’s what he would have wanted.
I try to live each day knowing that he always wanted the absolute best for me—that he wanted me to be happy. And when it feels inconceivable that I could feel that way, I try a little harder because I know if he could see me, that’s what he would want.
Moving forward
I remember how strong Jon was, and I take a beat and remember that I can be strong too.
In Glennon Doyle’s memoir Untamed she writes: “We can do hard things.” Nearly all things in life are hard in some way or another, but she’s right—we can do them all because we have to.
At the base of grief is just trying to move forward and pick up the pieces—it’s doing the next right thing over and over until gradually we put ourselves back together.
I’ll never be the same with Jon gone, and I would never want to be. I’m just not meant to be that person anymore and that’s okay.
But every day I feel more and more like the best parts of myself are coming back. And in all of this swirling grief, I have gratitude—for Jon and for every moment we had together—the happy, sad, and all of those that were magically, tragically both.
Medically reviewed by Originally Published: April 02, 2021
