I Never Expected Apathy

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.