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Letting Caregivers Actually Care

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It was the first real night of our honeymoon. Steph and I had just stepped off a water taxi onto a jetty just fifty steps away from our hotel in Venice. It was about 7 p.m., and we were excited to be in the most romantic city on earth. We were also wrecked after traveling from St. Louis to New York LaGuardia to New York JFK (by taxi) to London Heathrow to London Gatwick (by bus) to Venice (by plane) to Venice (by boat).

So as we got our bearings, I realized that we would have to walk over two sets of bridges which are nothing more than outdoor staircases that traverse these little canals. We would have to lug both large suitcases as well as both small rollers, plus two backpacks. 'No problem,' I thought stupidly.

So I attached each small roller to its corresponding life-sized replica of the state of Rhode Island, and I started heaving them up the stairs. Stephanie said, "Please let me take the rollers."

"Not, necessary my love. I've got this."

You know it's bad when an 86-year-old man stops and asks you if you need help. Stephanie was mortified. I was pouring like a Price Pfister testing facility, and my angel... the sweetest woman I'd ever met in my life... told me in no uncertain terms, "If you ever do this again, you can go..."

The next two words I can't mention here... though it would help if my manhood was a foot long and shaped like a boomerang. I learned a valuable lesson that day. I should have learned it two years prior while battling cancer.

I like to think of myself on the self-sufficient side. After I barely graduated high school, I took a year of culinary school so I could learn how to cook... figuring that if I never got married or if I ended up very far away from my dear sainted mother, I'd never starve. About this time, I also learned how to sew, change my oil, and wash my own clothes. Sure, the wrinkles made it look like I washed them in a river using a pair of rocks, but they were clean, dammit. In my mind, I was stronger than I had ever been. I was man...hear me roar. I could bring home the bacon... fry it up in a pan.

Only I wasn't strong. In fact, I was very weak. And that weakness boiled down to something very simple: I was afraid of not being good enough if I couldn't do everything myself.

I'm eleven years away from my diagnosis now, and I am blessed to say that I have been cured for a decade. But I look back at some of my foolishness and think the fact that I lived through it was a minor miracle, and that I survived in spite of myself.

When I first heard "You have cancer," like everyone, I went into panic mode. What do I do? How do I fight? I'm angry. I'm confused. I'm scared. Those who are close to you know this because they feel the exact same way. So they do what they should do: they reach out and hold you up, and at that moment, that's all you really want. They say, "We're here to help you." "We love you." "What can we do?"

And at first, it's lovely. You revert to your childhood a little bit, just wanting to be held and reassured that it's going to be alright. But then something interesting happens, especially to those of us blessed enough to have the chemotherapy or radiation actually work. When you realize that you have a good shot at survival, you attempt to get things as back to normal as they used to be. The problem is that things will never be as normal as they used to be, and as the patient, I didn't realize this.

So I used to not let anyone do anything for me. I'd be lying fetal in my bed, ravaged in the grip of the chemotherapy side effects, literally gasping for air from the pain of stomach spasms. And like the true sense of the word 'moron,' I would literally drag myself down a flight of stairs to get a small cup of apple juice to keep some form of hydration. Never mind the fact that I'd already expended the fluids and energy getting up and down the stairs that the juice would give me. So in theory, I'd probably burned a few hundred precious calories that I couldn't afford to lose in the first place.

You know that high IQ society, Mensa? I was in the middle of starting my own organization: Dense-a.

So instead of resting and conserving energy, I'd burn every ounce I had by getting my own drinks, making my own food, and driving myself everywhere. And by doing all of this, I gave myself the illusion that I was in control. Meanwhile, my family and friends, my caregivers, had a much clearer picture. They tended to know what was best for me, and when they saw me sabotaging it, they had the tendency to hold on a little tighter, because they saw what I couldn't.

But therein lies a nasty little rub. Think of every bad relationship you've ever had. What happens when you want to pull away, and your partner tries to hold on? You pull away harder. Your partner holds on tighter. And before you know it, the relationship explodes like Krypton on a Tuesday.

And it's at that point... the point of no return... the moment when it's half-past too late that you realize your caregiver, while potentially being a tick on the overbearing side, had it right all along. And it's in that moment that you pray that you didn't just permanently screw up one of the greatest gifts any of us will ever have: love.

In this two-sided affair, it's important to remember two very important things. Patients, you need to keep in mind that caregivers do not want to be where you are. Unless you are the parent of a child battling, or a spouse watching the love of your life in agony, caregivers don't want to fight this for you. They simply want to take care of you for your piece of mind, and they want to feel needed for theirs. Make no mistake: the most powerful of all relationships are the ones that are symbiotic.

And caregivers, when you see us patients at our absolute manic best, don't be afraid to pull back a tick. You letting us go through our idiot stage alone will not mean the difference between life and death. In fact, letting go of us will do more good than harm.

As Stephanie and I reached our hotel room, as I dropped our cases to the floor, I realized that my real strength did not come from physicality... it came from the love of someone who wanted to shoulder what she wanted to be her share of the burden.

It is not a strength to be self-sufficient at all times in all circumstances. The people you love are dying to be there for you, and we in turn need to reciprocate that. It's a gift that we can give, and that we owe, to the people who put everything aside just so our lives can be a little more tolerable.

Now if you'll excuse me, I have to go help Steph clean our our gutters. I get to hold the ladder steady.

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