Is This Really What I Signed Up For?

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I am a movie fanatic, so this time of year is always a fun one for me. It gives me the perfect excuse to catch up on all of the Oscar-nominated films. Don't get me wrong, I love the Super Bowl, but when it comes down to it, I live for a red carpet and an acceptance speech.

This year's crop includes "The Theory of Everything," a biopic about Stephen Hawking. I didn't know much about the film, other than it was a front-runner in several categories and that it was about the famous quantum physicist, so I walked into the theater expecting a movie about how Hawking's revelatory ideas changed the way science approached space exploration and the history of time.

Instead, to my complete surprise, it was an intimate portrayal of a marriage based on caregiving.

A short summary—no spoilers

The film begins as Hawking, still fully healthy, meets and falls in love with Jane, a feisty, beautiful woman who seems capable of tolerating the eccentric scientist's unusual personality and ideology.

Not long into their courtship, Stephen begins experiencing troubling symptoms. He is given the grim diagnosis of ALS and is told he has two years to live. Jane refuses to leave Stephen, and instead decides to make the most of the time and life with him that remains. They marry and begin a family.

I will spare many details in the interest of those who might like to see "The Theory of Everything," but Jane and Stephen ultimately divorce. After he lives well past his estimated life expectancy, the weight of Jane's role in the relationship proves too heavy to carry long-term.

Art imitates life

The film does a great job of chronicling the wear and tear on a marriage that caregiving can grind into it. How hard it is to maintain a true balance with someone for whom the most basic of needs suddenly become your responsibility to provide.

I now have experience as both the caregiver and the one needing care, and let me tell you, there is absolutely nothing sexy about vomiting, hair loss or diarrhea. Nothing.

When you are ill and unable to do the activities you envisioned being a part of your life, the dynamics of a bond will inevitably change. Naturally there are moments of resentment—on both sides.

Caring for my own husband during his cancer treatment is my sole caregiving experience. Though it was relatively brief in comparison to many in the same situation, the cumulative toll was intense.

Because I had small children, I felt both emotionally and physically exhausted. It seemed like I was always torn between tending to my kids' needs or my spouse's. And even when he didn't require something from me outright, I always lived in fear of over-taxing my husband's fragile health, so I took great pains in keeping the children occupied and quiet. Any parent of young ones knows how challenging that can be.

I also needed to be the foundation for my kids. I had to nurse the wounds the emotional shrapnel left in their tiny little hearts from the cancer bomb that detonated in our lives. I was so scared and so sad, but I could never let my children see that. I had to keep it all together for them and for my husband.

There was no time for me to take care of myself, and when I looked around at my contemporaries, I saw no one else my age going through the same ordeal. I felt boxed in, isolated and scared that the life I was living would go on indefinitely; but I was even more terrified of the alternative: If I wasn't caring for him that would mean he was gone.

I found myself thinking things like "this isn't what I signed up for," and immediately felt guilty.

But witnessing your best friend, your partner, vomit so hard and so often that every blood vessel in his eyes burst, was tough. Seeing pain pills knock him out but knowing that I wouldn't sleep, couldn't sleep, and hadn't slept in weeks, was brutal. And realizing that the tiny bit of safety I felt while he was an inpatient because nurses were in charge would vanish the minute we left and I was on my own again, was crushing. This on top of having three kids under the age of ten to nurture—I'll admit it—some days got the best of me and my resolve.

Hindsight and learning to forgive ourselves

I can look back on myself during those days and see me for who I was: A sleep deprived, terrified wife, an overwhelmed mother of three, and the heartsick other half of a best friendship I thought might literally die in front of me.

I was angry and very, very alone. I felt like my life wasn't fair, and what I was dealt wasn't what I had agreed to when I said, "I do." I now know none of that was true, but in those deep dark days, you would've had to try hard to convince me otherwise.

While watching "The Theory of Everything" I was struck by how different my situation seemed from Jane's on the surface, but how alike it was underneath.

Jane knew the life she was signing up for—she just thought that what she had signed up for was temporary. I signed up for a long life with my favorite person in the world, but it looked as if that life would end prematurely. Both scenarios are like a matrimonial bait-and-switch. Jane and I found ourselves emotionally and physically exhausted, aged and, to some extent, bitter.

I am in no way assuming that the care I provided for my husband was on par with what Jane sacrificed for Stephen. But I will say that for those of us who have truly tested the worse, poorer and sickness halves of vows that fell off our tongues so easily in our youthful moments of bliss, we simply know more.

And we won't ever look at our significant other with the same eyes we did before illness placed each of us in another category.

I have seen cancer be both galvanizing and divisive. For a relationship to survive it takes a partner who can see past the un-sexy world of symptoms and side effects and remember the person underneath. It takes someone who, even when drained and bitter, can try and dig out the better, richer and health in the situation.

Perhaps most importantly, it takes the realization that regardless of intensity, duration or recipient, the act of caregiving is impossibly challenging work. It's often lonely, unappreciated and unpaid, and it's never something that we "sign up for," and it's completely normal to feel that way.

Though I of course would, and likely will, care for my husband all over again, I can't claim it's anything I'm eager to jump into anytime soon; however, thanks to caregiving, my husband and I now share a connection more intimate than any couple could possibly feel who hasn't done it. I wouldn't trade that. But I wouldn't necessarily recommend it either. Because that kind of closeness can only come from a level of vulnerability people are forced into; no one would submit to it voluntarily.

What I will say is that if I am called to care for my husband again I am going to be kinder to myself the second time around. I won't automatically feel guilty if thoughts of bitterness or frustration seep into my brain.

Instead, I will permit myself moments to feel fatigue, anxiety and aggravation, and try hard not to apologize. Those emotions are not only understandable—they are allowed. But mostly I will be comforted in the knowledge that no one "signs up" for caregiving.

Betsy Hnath is a writer who lives with her husband, daughter, two sons and three dogs. Recently, her work has focused on her experiences as a caregiver to a husband battling stage IV melanoma, and as a patient herself with stage II breast cancer, along with the pitfalls and rewards of juggling both roles while being a mother to her young children.

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6 Comments

Bravo, Betsy. A compelling and insightful onsite onto a situation that receives too little attention.
A serious situation that receives too little attention. Bravo, Bets.
Well written and insightful. Thanks so much for sharing. I also hope it was therapeutic for you to write and others do the same.