Anticipatory Grief: I Lost My Husband And Our Future Together

Thanks to Erica Finamore

An unexpected brain tumor

One night, a few months after I married my college friend, we ended up in the emergency room. My husband, Jon, a neurologist at NYU, had some memory problems and position headaches (his head hurt when he lay down or leaned forward). As a doctor, he knew these could be signs of something more serious.

I thought we were both just being overly cautious going to Mount Sinai Hospital that night, but that turned out not to be the case.

After doing an MRI, they found a mass in Jon’s brain that we would soon discover was glioblastoma: an aggressive, incurable brain tumor with a life expectancy of 12 to 15 months. We were both just 28 and Jon was perfectly fine a few weeks earlier. Suddenly, on February 25, 2018, everything changed.

Over the next 26 months, I watched our lives slip away, slowly at first and then much faster. 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 made a sharp turn in the spring and died on April 17, 2020, at the age of 30. Every time I have to say or write that sentence, a shock goes through my system. It just feels like it can’t really be my life.

A hard look 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 dealing with. I was scared.

But eventually I gave in and explored the nonsense of it – I’d like to pretend I’m one of those people who takes it day-to-day, but I’m not. I needed to know what we were looking at and what to expect.

(Learn what anticipatory grief is.)

I learned early in Jon’s illness that everything I thought my life would become and everywhere I thought it would go was disappearing. If Jon left soon, I wouldn’t grow old with him.

Every stunningly happy, deeply meaningful, and life-changing moment we could ever share would be before we turned 30. He lived longer than expected, but not nearly long enough.

Constantly grieving for a piece of him

Usually when you go through a big loss you are surrounded by family and friends and distractions. I know everyone wanted to be there for me, but the circumstances (Covid-19) made that impossible.

So last April I found myself a 30-year-old widow, thrown back into this strange alternate universe without Jon and without the typical frenzy of visitors. And honestly, without a whole lot of people, I could relate – because how many 30-year-old widows do you know?

(Here’s what you need to know about disenfranchised grief.)

I didn’t lose Jon overnight. I lost him again and again in small ways as the disease progressed. I lost him when he couldn’t text anymore, and more from him when he couldn’t walk or talk.

The disease carved him in a way that it felt like I was constantly grieving a piece of Jon. Looking back, I know this slow goodbye made the last goodbye a little less shocking for me, but I would never wish such a slow, heartbreaking loss on anyone.

Going through anticipatory grief and loss

When you or a family member is sick, people will casually say things like, “Don’t read” When breath becomes air” (a book about a neurosurgeon who dies of lung cancer), which makes you want to read that book right away.

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 bereavement. I read books from doctors who treated cancer and I read biographies of cancer. My little brother looked at my reading list for 2019 and just said “holy sh*t.”

I wanted to find out how other people had lived with this — which doctors they’d seen and what their symptoms were. I wanted to know if there was a rock I had left undisturbed, but I also wanted to know how people coped emotionally. I couldn’t stand the anticipation of the crash.

I studied these books as if they would help me prepare. Because you can somehow prepare for most things in life, and your achievements are a direct result of that willingness. Perhaps these books would tell me how bad I would feel soon, but also how to avoid being so.

I thought if I experienced these similar tragedies with these characters on a superficial level, it would soften the impact for when it was my time. I would already know so I wouldn’t fall so hard. My anticipatory grief was an imaginary homemade pillow.

It wasn’t the worst plan. I do feel that those books made me realize some things earlier and therefore start to mourn earlier. I took stock of every little thing I was losing, everything I was going to miss. This may not have been everyone’s strategy, but it had to be mine.

It would have been too hard to mourn everything I’d lost at once. 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 differs from anticipatory grief.)

Guilt and questioning as part of grieving

While Jon was here, I felt so overwhelmingly guilty that I couldn’t save him. And as I say this, I know full well that logically I couldn’t have done that. But sometimes I still let myself go down that road, wondering if there’s something I’ve missed.

When Jon first passed away, I was so overcome with grief and pondering that I had to write a list to myself every day of all the things I had done well. I would list things like our vacations after the diagnosis, getting him into clinical trials, and telling him I loved him often.

I recently spoke with a friend whose grandmother had lost her husband, his grandfather, when they were 92, and in some ways she still blamed herself.

In this girl gang of widows (which I made up in my mind) this is our signature, our tell. We will always wonder. Our guilt and doubts are just as much a part of our grief as the grief or painful disappointment.

It’s human nature to want to believe that we can fix anything, and it’s perhaps the hardest life lesson to discover that some things are just too broken. And that those things will break you too.

(Here are some grief quotes that can help after a loss.)

Growing away, growing differently than before

On my 31st birthday, a few months after Jon died, I realized that even though I was always two months younger than Jon, I would always be older now. He would forever be that man whose life was tragically cut short when he was 30, and as time went on for me, he would remain the same. It is both the greatest curse and the most special about time.

He will always be 30, and as the years go by I will (God willing) grow older, become different, grow away from the person he knew and loved. Getting through the first months without him was hard, but that realization was much harder.

(Here are 10 helpful things to say to someone who is grieving.)

A mix of sadness, happiness and sadness

Grief is strange because it is all encompassing and yet not in every second. There are some days (most days) when I feel happy and sad in the same breath.

Before Jon got sick, I had the impression that you could only feel one thing deeply at a time, but that’s not the case. That’s what makes people so resilient, even when it feels unnatural. There is a part of us that wants to feel everything. And I feel it all.

I find myself grateful, more than ever, for the things I do have. I’m incredibly grateful for every minute I have, because I know this is the time Jon should have had too, and it’s time I now live 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 to his friends and his family (forever my family too) because he would have wanted to.

I try to live each day knowing that he always wanted the very best for me – that he wanted me to be happy. And when it feels unthinkable that I could feel that way, I try a little harder because I know that if he could see me, that’s what he’d want.

Moving forward

I remember how strong Jon was, and I take a hit and remember that I can be strong too.

In the Memoirs of Glennon Doyle untamed she writes, “We can do difficult things.” Almost all things in life are difficult in some way, but she’s right: we can do them all because we have to.

The basis of grief is just trying to move forward and pick up the pieces – it’s doing the next good thing over and over until we gradually bring ourselves back together.

I’ll never be the same when Jon’s gone, and I 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 that the best parts of myself are coming back. And in all this swirling sadness, I’m thankful—for Jon and for every moment we had together—the happy, the sad, and all those who magically, tragically were both.

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