I Never Expected Apathy

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We’ve all heard of the five stages of grief – denial, anger, bargaining, depression and acceptance – originally presented to the world by Elizabeth Kubler Ross. While never meant to represent a comprehensive and linear road map of the grieving process, the stages do give those dealing with grief some manageable expectations to work with. Her book was sort of a What to Expect When You’re Expecting (a Death) type guide to what comes next. No two death experiences are the same (just like no two birth experiences are the same), but there are enough commonalities in our emotional and physical symptoms that a written guide can certainly give us a bit of a “heads-up” on what to expect.

When your spouse is given a terminal cancer diagnosis, the grieving starts long before they’re actually gone. You grieve losses both big and small from the moment you realize that you’re likely dealing with borrowed time. I grieved for our future, our big plans, and the life I thought we’d have together. I grieved the sense of security we once had; that naive belief that nothing truly awful would ever happen to us because those things only happen to other people. I grieved the loss of his quirky smile (the one that used to kind of annoy me because it made his tongue show up in every picture we took) that seemingly disappeared overnight as the tumor on his brainstem began to alter his ability to control his facial movements. There were days when I knocked out all five stages of grief before we’d even had breakfast, and then hit them all again during my afternoon walk with the dog.

I’d promise whoever may be listening that I wouldn’t ask for anything else as long as I lived, if only I could keep Travis, and then think to myself, “oh that’s what they mean by ‘bargaining’!” I’d shake and cry in the shower making a combined show of anger and depression that would have terrified the cat watching from the sink if he actually had the capacity to care about anything besides me getting out to fill his food bowl. And I’d volley between denying what was truly happening and reaching total acceptance on an almost daily basis as I watched Travis decline, and began to think that he was reaching a point where the life he was living wasn’t really a life at all.

With all of this anticipatory grief surrounding me on a daily basis I felt pretty prepared for what was to come after he was gone. But just as Mothers-to-be who read all the books often find out that they actually have no clue what they’re doing, I would quickly discover that I wasn’t as prepared for grief as I thought I would be. In the past three months while I’ve hit (and hit and hit) all of the milestones that I expected, there was one key emotion that I didn’t expect. Apathy. I never expected to be so apathetic.

I’ve always been a doer. I get an idea in my head and I run with it. When I have a goal in mind I dive into it and carefully craft a plan for executing every detail of that plan. When Travis was diagnosed with brain cancer I researched treatments, drew up calendars to keep everything on schedule, and balanced his medical needs with his quality of life needs by managing his personal bucket list. It was the challenge that I had unknowingly been preparing for my entire life, and I like to think I rose to the occasion.

The moment he died I felt as if an incredible weight had been lifted from me. Although I never felt particularly burdened by being his caregiver, the magnitude of what I was living was never lost on me. The feelings associated with carrying a person through their final days are not just emotional, but physical and the relief that came with his departure from this life was palpable. A wave of calm washed over me and in the days that followed absolutely nothing bothered me. At first it was kind of nice, I was so carefree. But in hindsight I realized that being “free of cares” is really just another way of saying that “I don’t care.” In my mind the worst thing that I could imagine had already happened, so what did I have left to care about. I was truly apathetic, and that’s just not me.

I’d like to say that I was totally stoked when I heard about the Head to the Hill event sponsored by the National Brain Tumor Society. An opportunity to advocate for a cause I believe in on Capitol Hill? Old Julie would not have given a second thought to signing up. Apathetic Julie wasn’t so sure, but she forced herself to sign up as a part of her commitment to doing things that make her uncomfortable.

So I’m here in DC, ready to advocate and hoping to find the part of myself that knows that there are still things in this world that are worth caring about. I spent the day with about 300 people from around the country who each have a personal connection to brain cancer and a story to tell. We collectively prepared ourselves to advocate on behalf of our individual states in front of our congressional representatives, and together I’m confident that we can make an impact. I’m grateful to be in the company of people who really give a damn, and desperately hoping their collective passion will rub off on me, and help me find that piece of myself once again.

She Already Knows

On my 33rd birthday I wrote an open letter to my 23 year old self discussing the crazy twists and turns my life had taken during the decade of time that had just passed. I woke up on my 35th birthday with a similar desire to write to 25 year old me, but just couldn’t bring myself to tell her what her (0ur) life looks like today. How do you tell someone who is just about to get engaged, buy a house, and land her dream job that exactly ten years from that day she’ll be single, unemployed, living in her childhood home, and checking virtually all of the boxes on the crazy cat lady score card? While I seem to be falling short on providing proper guidance to my younger self at the moment, there is no shortage of advice being sent my way. With plenty of wisdom to choose from I thought perhaps I could cobble together something for her (me) from the advice of others, but I wasn’t quite sure where to begin.

I could start with the friend of a friend who told me that she was “a mess when her husband left her” but that she “reclaimed her life” by doing all of the things she couldn’t do when they were together. Even though my husband didn’t exactly leave but rather died, I put her advice into action and tried to think of things that the confines of my marriage had prevented me from doing. All I could come up with, however, was watching movies with Ashton Kutcher in them and wearing colorful pants. Travis and I were so insanely compatible that those are literally the only two things I could think of that he despised, that I might actually like. And after perusing the Kutcher compendium on Netflix and browsing the vast world of floral leggings available in online stores, I’ve come to the conclusion that he may have actually been saving me from myself with these two very reasonable deal-breakers.

There was also the more practically focused advice from the 91 year old widow who cornered me after a church service and recommended that I invest in a life alert button since I’m “all alone now and could fall and be on the floor for days before anyone knew.” While being seen as a peer by a nonagenarian could be a shock to 25 year old me’s system, at least then she’d know that she’s not alone in all of this. My new friend had further offered to help me gain residence in her retirement community, but I had to stop short of filling out the application when she told me I wasn’t actually eligible to live there until I was 55. Perhaps someday 65 year old me will be able to reach 55 year old me and let us all know if this gels with our future plans.

Of course I also need to consider the potential impact on the cosmos if one of these letters were to somehow actually reach her (me). I’m not exactly sure how time travel works, but I’ve read enough science fiction to know that confronting one’s younger self with bad news is a recipe for disaster in the form of disrupted timelines and alternate realities. 25 year old me was a real go-getter. Who knows what calamities she’d inadvertently set off in pursuit of changing her fate. Worse yet, what moments of joy she may have caused us to miss as she sought to avoid her (our) own sorrow.

No, it’s better not to try and reach her. It’s better not to warn her of the things that lie ahead. After all, she already knows everything she needs to know to get through what’s to come. She knows she loves Travis and that being his wife is something she both wants and feels called to do. But she also knows that he’s not her better half (and she is not his). She knows that considering herself to be only a fraction of a person in need of finding her missing piece is at best a tired fairy tale, and at worst a socially imposed mandate that makes those living a life without a partner feel somehow incomplete. She absolutely loves the life they’re building together, but she knows that what makes their relationship work is that they are both entirely whole people who don’t complete, but rather compliment each other extremely well. She already knows that if she is ever without him she will miss him terribly, but that she can indeed go on without him because she’s strong and will only become stronger with the love and support he’ll provide during the years she has him by her side. 35 year old me may require constant reminders of all of this, but 25 year old me is a lot smarter than she (I) thinks (thought). She already knows.

Staring into the Sun – One Month a Widow

I’m ok. Taking it one day at a time. Some days are better than others.

If you’ve spoken to me in the past month you’ve probably heard these responses to your questions about my general health and well being. If you haven’t spoken to me please rest assured that – I’m ok, taking it one day at a time, and that some days are better than others. Also, don’t feel bad if you haven’t spoken to me because I’m not much for talking at the moment – mostly because people keep asking me how I’m doing and I’m sick of saying that I’m ok and taking it one day at a time because some days are better than others.

I’d like it if we could be as blunt with each other as Mike the Verizon guy and I were when I finally had the energy to have my husband’s line disconnected after three weeks of paying for a service that he was decidedly no longer using.

Mike: Will your husband be keeping 
the line and activating service
with us or another company?
Julie: No, he's dead. 
Mike: Ok. Understood.

But, that wouldn’t be polite. Social convention dictates how our conversation should go. You ask me how I’m doing and I respond with one of the aforementioned platitudes that falls somewhere between the oft spoke – I’m good, great or well (there’s no way you’d buy that anyways) – and saying anything that would result in you asking more questions about how I’m actually doing.

The reality is that I’m not really ok. I am taking things slowly but it’s more like one minute at a time, and although some days are indeed better than others, most days during this past month have been pretty terrible. Losing my husband was the most painful, traumatic, horrifically terrifying experience I have ever had, and being forced to rebuild my life from the scraps of what once was, just plain sucks.

With 28 months to prepare for this moment you would think I would have been more prepared, especially since a grade 4 brain cancer diagnosis does not carry with it much hope. Even with the most aggressive course of treatment available we were told to expect no more than another year together, so the fact that he lived for two years and some change was somewhat miraculous. But still, we hoped. We hoped he’d be the odd one for whom all of the treatments worked. We hoped he’d be part of the mere 10% who live 5 years past diagnosis. We hoped he’d be the one who gave others hope spending the rest of his long life inspiring them by standing up and saying “look, I made it and you can too!”

We balanced our hope with reality because we understood that the odds were not in our favor. We talked about dying and funerals, what he would want his legacy to be, and discussed me moving on without him. But we couldn’t linger in those moments for too long. We had to keep hope firmly in our sights while giving only an occasional glance to reality. Staring at reality was like staring into the sun – a blindingly painful reminder of what was to come.

A month after his death and glancing at reality is no longer an option. While hope still exists it has now been banished to the periphery, and exists in a form that no longer matches the life I once knew. Glancing at this new version of hope hurts almost as much as staring at reality. And so I find myself just constantly staring into the sun.

But… I’m ok. Taking it one day at a time. Some days are better than others.