Cancer Care Giver’s Blues: Surviving the Doldrums
The Doldrums. It’s an area of the ocean around the equator, feared by sailors because there is little to no surface wind. Sailing ships can be stranded there for weeks. With nowhere to go, and nothing to do, the Doldrums is a place sailors “survive.”
Over the last several weeks, I’ve felt like one of those gust-less sailors. Going nowhere. Not lost. Just stuck and not knowing what to do about it.
I realized that I gave everything I could give over those four months, and I took next to nothing for myself along the way. Then everyone moved on. I felt left-back, with no hope of wind to come to fill my sails.
Serving as my wife Alicia’s caregiver the previous four months was a whirlwind. As she coped with the ravaging effects of a disease killing her body, and then the poison she took to kill the disease, I kept the plates spinning. Work, kids, meals, spin, spin. Cleaning, medication distribution, doctor coordination, and trying to be a half-assed dad and husband, spin, spin.
It was hard. I slept little. I rarely left our home. I managed most things. I felt everything. And I owned it.
Never have I felt like my life had such a clear purpose than in those four months spinning plates and loving my team. I’ve told Alicia that as difficult and heartbreaking as the experience was, I’d never trade it in for anything. I wouldn’t wish it away, and I’m definitely not resentful. In fact, I’m the opposite. I’m grateful.
I’m grateful that I could love so complete and that I could reach past any limit I thought I had to do more. I did just that, more. No matter what it was, it was more. Because that’s what was needed.
But now, the Doldrums.
We were lucky. After a harrowing battle with septic shock, Alicia has made a strong, steady recovery. As we “Cancer Club” people say, all of her numbers are in the “normal” range.
As Alicia’s health rebounded, life very suddenly turned back to normal. The girls demanded their mom back. Work demanded her back. And after off-loading a ton of work on my business partner, who asked no questions and shouldered the extra load, it was time for me to return to a full plate of client work for my business.
Just like that, the crisis was over, and with it, my purpose gone.
Maybe a comparison is being a soldier in battle. The war ends. The fighting stops. The world moves on. The soldier? Well, we don’t really have a use for him anymore, do we?
With no wind at my sails, I could see more clearly. Dishes stacked up in the sink and on the counter. Trash begged to go to its large, wheeled home outside, and empty cardboard boxes as far as the eye could see screamed, “fold me.” And where was my wine glass? Empty. Fitting.
The piled plates and semi-empty, towering to-go containers mock me as I walk by. Every day.
As I juggled bags of trash and dirty dishes while trying to toggle my phone’s mute button on and off so I could stay on my conference calls, I felt emptier and emptier. I took it personally. Why isn’t anyone helping me, I thought? Don’t they care?
I realized that I gave everything I could give over those four months, and I took next to nothing for myself along the way. Then everyone moved on. I felt left-back, with no hope of wind to come to fill my sails.
What do you do with this problem?
I’m not mad at my wife. She’s caring for kids who went months with only glimpses of their mom, teenage angst and related challenges don’t go on pause because you get cancer, and you still have to pay the bills. For Alicia, she now grapples with the fact that her best-case scenario is she’s in remission for several years. But it will come back. Hairy Cell Leukemia (HCL) always comes back. It’s incurable.
I’m not a complainer, but I’ve spent many days over the last few weeks feeling alone, feeling quasi-invisible, feeling like no one could know why I felt this way, and feeling that if someone asks me to do something else for them, I’ll lose my shit on them. Asker beware.
I recently told a friend of mine who asked how I was doing this, “I’m not really OK. I struggle. Every day. Most days, I try to be OK. Some days, I try really hard. And some days, I don’t try at all. It’s just too much work.”
I often wonder if this is how many other caretakers feel. You don’t have a problem with the behind-the-scenes role because you know your mission and value. But now? Trust me. There’s no cavalry coming to help you limp off the battlefield and nurse you to health.
I haven’t given up. I’m a professional. I get up in the morning to go to work; I still cook dinner for my family, and I still love my wife and kids the best way I can. But I’m stuck. I feel like an empty reflection of the man who took on this responsibility with such gusto in October. I am no longer me. And I don’t think I will ever be that Dustin again.
Read a self-help book, and the author will tell you to take care of yourself. I have two words and seven letters for that guy. Previously, it would have been unfathomable for me to need anything from anyone. I hate it. But that’s where I find myself. Needing more from the people in my life than I know how to ask for and needing probably more than they can give me.
After all this, I have zero advice to offer anyone. I know what I know. I know that as I’m stranded in the Doldrums, I’ll take the opportunity to really listen to myself. I know that if no wind comes along, I’ll plunge my arms and legs into the sea and paddle my ass out of here.
Why? Because that’s what my kids need. That’s what Alicia needs. But most importantly, that’s what I need.
This article originally appeared in The Good Men Project.
Read more of the series “Confessions of a Cancer Caregiver” by clicking below:
https://medium.com/hello-love/finding-cancers-hidden-gifts-f4586651b5da
