Young Caregivers: What We Talk About When We Talk About Entitlement

by Paul Hile

Each year, millions of men and women get life-altering news. We sit. We wait. We wonder: Why us? Why me?

Each year, millions of men and women get life-altering news. We sit. We wait. We wonder: Why us? Why me?

When my mother was diagnosed with brain cancer, I sat alone in a family room at the hospital and wondered aloud why this was happening to my family.

Why my mother? Why my family? Inevitably, I asked: Why me?

The same thing happened when my wife was diagnosed with a rare autoimmune disorder while we were still dating. My young, athletic girlfriend became a dependent, tired woman who was forced to spend too many days on her family’s couch. I asked: Why her? Why did this happen to us? Why me?

Where do these questions come from? I mean, I must have heard someone else raise them. Maybe my folks said these things when my brother was diagnosed with Type 1 Diabetes. Or maybe I heard it on the television, or in a book. I’ve been thinking a lot about that lately, especially as my wife’s health begins to mend and we’re afforded the time to look back and reflect on the last four years. Throughout her diagnosis and treatment, our family was struggling and, to be frank, angry.

Why were we angry? Well, yes, we were angry because she was now living with a terrible burden, one that was difficult to watch, let alone live with. But the honest to God truth was that she had this burden—whether we liked it or not. My mother had brain cancer. There was nothing we could do to change those realities.

It’s funny—I don’t ever remember being promised good health. I don’t remember ever being told that in my life. Neither does my wife, nor my mother. And that’s because we’ve never been given that promise.

So this question—Why me?—is really a matter of entitlement, right? I feel entitled to good health. I feel entitled to a life without struggle, without pain, without hardship because—well, it’s me. I shouldn’t have to deal with this. My wife shouldn’t have to deal with this. My mother and my family shouldn’t have to deal with this.

Next time you find yourself shouting—This wasn’t supposed to happen!—dare to ask: Says who?

And the answer is: No one. This is dangerous territory. For me, once I moved beyond—Why me?—I was left with just pain, with having to watch the women I love most struggle and suffer and carry a burden I cannot remove, no matter how hard I try. And believe me, I try.

That question—Why me?—let me put off the gravity of each situation. By focusing on the seeming injustice of the news, I was ignoring the reality. I was living somewhere between what once was—and what was to come. That felt more comfortable than asking: What’s next? I was delaying grief, which, in turn, delayed my ability to help my wife and mother.

Here’s the other danger: If I let myself remain there—sitting, wondering over our woes—then the next steps fall to someone else. I can so easily let someone else deal with it all. My wife and I should not have to deal with this, not now, not ever—so someone else should. Of course, I don’t believe that in my heart—but that’s the temptation of remaining lost in: Why me?

When I take my blinders off, when I open my eyes—I realize that we are not alone.

Think about this when you’re sitting in a hospital waiting room paralyzed by the news you’ve just received. There are hundreds—often thousands—of people dealing with the effects of cancer in that hospital alone. Look out the window: Millions of men and women are struggling out there.

The honest question is: Why shouldn’t we be part of the struggle with illness? My wife and mother aren’t entitled to good health. No one is.

I’ve been working on accepting that lately. I’ve been working on acknowledging the fact that my life is my life: My mother is a cancer thriver and deals with life-changing effects from a devastating treatment. My wife has a disorder in which some days really, truly suck. That is my life, and I have to learn to be okay with that.

In the end, here’s what matters: How we live and what we do with our time here on earth. In a world without sickness, my wife and I would still have sought a life of love and happiness, filled with friends and family, good coffee and service to others. The same is still true now. We just have to clear a few more hurdles to get there. We just have to take a few more breaks to let my wife’s body heal.

But we’ll get there, and when we do, we look forward to meeting you and hearing about your life—sickness and all.

When we stop asking—Why me?—we can start to asking: What can I do? How can we live in a way that is purposeful, fulfilling—and splendid?

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Comments

  1. What a beautiful beautiful essay. And from a man so young. You hit the nail on the head, Paul. We are not entitled to good health. We can pray for it, hedge our bets through diet, exercise etc. But there are no guarantees. As with anything, the only sure thing is how we respond to a challenge. Thank you for modeling such a luminous response.

  2. What a wonderful essay!

  3. This is powerful, beautiful, and painful at the same time.

    The most powerful line for me is this one: “For me, once I moved beyond—Why me?—I was left with just pain, with having to watch the women I love most struggle and suffer and carry a burden I cannot remove, no matter how hard I try.”

    Being left with pain is what scares many of us in many situations. And yet, until we face it, we can’t, as you note, take that next step.

    Thank you for these words of insight and wisdom.

  4. Elaine Greenberg says

    Dear Paul–I know both your mother and your father–have said many prayers for your mom–I, too , am a cancer survivor–I, too, have said “what is next I need to go on with my life”–however, can’t do it everyday–I am human and there are days that are not what I would like them to be–but they are days and they must be celebrated as all other days in our lives. You are very young to have had two women whom you love to have to deal with this much illness–but age doesn’t come into the equation when dealing with health. You are a wise young man and your essay was beautifully written. Love to mom, dad, yourself and your lovely wife (though I have never met her).
    May you continue to have the strength needed to be a caregiver and the wisdom to know when to take a much needed “time-out” for your personal well being.

  5. Benjamin Pratt says

    Paul,
    Thank you for your beautiful testimony of love, courage and honesty. You have affirmed our human condition well. Excellent work.

  6. What a wonderful article! You have taken on, with bravery, that age-old question of ‘Why me?’ and answered it with great wisdom. I’ll be printing your piece and sending it along to a struggling family member, who I know will appreciate your words very much.

  7. Chantele Henry says

    Paul, I am amazed at your wisdom. It is obvious that the gift that has come from your suffering has been to gain early wisdom, resilience and discernment. It is funny that God has given you the passion and gift to write as well. These gifts in combination are invaluable and often not properly stewarded by many. Thank you for living life on purpose and blessing the lives of others who may currently be living in pain. Your words are like a personal offering and they could be priceless to those in need. Thank you for sharing.

  8. Mary Liepold says

    Wow, Paul! Splendid is the word – for your writing, for your wisdom, & I hope for your own life & your dear ones’, more days than not. How marvelous that we can create community online this way, by sharing with each other! I know many will find strength & encouragement in your words, & I hope you’ll find some extra energy too, in the responses this receives. Shine on!

  9. Kim Jacques says

    Wonderful essay, Paul! Really enjoyed reading it and I agree with your thinking. 🙂

  10. Rereading this again, four months later. Just learned yesterday that a friend died of
    a sudden heart attack. He and his wife (theirs was a beautiful mid-life romance) had been married
    for just two years. You are right, Paul. Continuing to ask “Why?” keeps us paralyzed at a time
    when what is required is to stay involved and take whatever action is needed.