The honeymoon is over; the love is not
Passing through the phases of dying are a reminder that no matter how the body deteriorates, we are still fully loved.
By Lisa Calderone-Stewart
I was diagnosed with cancer in 2009, and given a life expectancy of six months.
During the past two years, I have sometimes described the “honeymoon” phase of cancer.
The “honeymoon” is when things are still fairly normal--relatively little pain, some manageable fatigue, and a fair bit of independence. Everyone is attentive to your needs, bending over backwards to assist with every little thing. So many gatherings with family and friends, with laughter, the sharing of stories, and easy affection. Everyone saying how marvelous you are, how talented and brilliant! Who wouldn’t love such an endless party?
Basically, it’s the “economics of dying” Your perceived supply goes down, so your perceived demand goes up!
I often thought, “So far, this cancer gig isn’t too bad!” In fact, I had so much fun celebrating with the people I love that I kept telling them my “dying thing” has been the best part of my whole “living thing”!
Well, the honeymoon is over.
Don’t get me wrong. People are still attentive and I am still being treated like royalty, but I have entered the “middle” phase of cancer.
(I hope you realize that I am making up these phases.)
I am less independent and my constant low-level pain keeps me uncomfortable all the time. The middle phase is when you haven’t yet begun to suffer the worst pain or the most devastating loss of body functions or the will to live another day. However, you are obviously declining.
The middle phase is when you are still “winning.” You’re still able to keep a couple of steps ahead. The cancer hasn’t beaten you yet, but it’s close enough that you can smell it coming. You hear its footsteps and can see it in your rearview mirror, along with the warning that objects are closer than they appear. Pretty soon, you are going to feel its hot breath at the back of your neck.
And that next phase is not going to be easy, or fun, or romantic, or noble. It will be downright ugly. In fact, I have named it the “ugly” phase.
It could be horribly unpleasant at best and downright hellish at worst. I have already begun to imagine all the smelly stuff I can look forward to as my body deteriorates--things to embarrass me, test my patience, and leave me feeling helpless and hopeless. I might wish for death to come quickly. All of this is normal as the cancer grows in physical size and emotional importance. Soon, it will seem to fill up my entire home.
Imagine what the ugly phase will be like for my friends and family. I don’t have a choice, but they do. They could shut it all out. They could stop visiting and calling. They could become emotionally unavailable and avoid this whole mess.
Who could blame them? The ugly phase is when you are no longer good company, and most people have stopped visiting. They don’t have much to say, and neither do you. (This is a good thing, because visits will become exhausting.)
By then, all they can do is sit quietly while you nap, and smile when you open your eyes. Sometimes they hold your hand and you remember what love feels like.
Imagine the caregivers. Usually they are close family; sometimes they include close friends. In spite of great love, I realize that it’s normal for caregivers to develop feelings of resentment and bitterness as they deal with the frustration and inconvenience. Some of them might even wish at times that I was already dead, and then feel guilty for wishing it. They might get tired of having my needs interrupt their personal lives and schedules. They could well grow weary of the “urgency” of my upcoming death. And they will not want to complain, because after all, they are the ones who get to stay alive.
But by then, I might be unable to console them, or comfort them, or say, “It’s OK for you to have those feelings. It’s normal. You’ve done so much for me, and still I require more. I’m so sorry. It wasn’t my choice. I didn’t want to become a burden. I can’t help it. But thank you, once again, for choosing to love me and take care of me. I feel so undeserving. Your love means everything to me. What would I do without you?”
I want to say it all now, because I know, eventually, when they will most need to hear it, I won’t be able to say it.
I’m sure of one more phase, the “final” phase, when you are no longer aware of your situation. You sleep most of the time, or you’re unconscious. When people do come, it looks and feels more like a wake, with people whispering to each other as you rest, eyes closed, in their midst.
The honeymoon phase, the middle phase, the ugly phase, and the final phase.
That’s how things play out. Not always, but often. Some people are lucky. They go straight from the honeymoon phase to the final phase. Most of us don’t. (Although it often happens that way in the movies.)
What is it that makes our friends and family so willing to say yes, despite the ugliness that terminal illness brings? How can they continue to love you when almost everything that made you lovable and delightful disappears?
It’s one of those great mysteries of life.
When people love us that fiercely, they are so very much like God. The less “lovable” their loved one seems, the more they resemble God in their gift of loving.
How many times have we read or heard that “God is love”?
Beloved, let us love one another, because love is from God; everyone who loves is born of God and knows God. Whoever does not love does not know God, for God is love. (I John 4:7-8)
Knowing this is nice. It’s lovely theology.
But being on the receiving end of it is simply divine.
Lisa Calderone-Stewart is the founder and was the first director of Tomorrow’s Present, a Milwaukee-based youth leadership program of The Leadership Center at Cardinal Stritch University, operating in partnership with the House of Peace, a Capuchin Franciscan ministry.
Lisa was diagnosed with terminal cancer last year. For more on her story, see "The dying wish of a youth ministry pioneer." You can also read Lisa's personal blog Dying to Know You Better, and she has a novel, Made To Write. An archive of her blog posts on USCatholic.org can be found at Final Thoughts.
Guest blog posts express the views of the author. They do not necessarily reflect the views of U.S. Catholic, its editors, or the Claretians.