Johanna Benthal works on a drawing of the NYC skyline from her hospital room in July 2019. Courtesy photo

Hope is a persistent theme in my life — which is pretty funny because some people would consider my life circumstances pretty hopeless. The ongoing physical, and emotional struggles that accompany caring for a loved ones with chronic illness who battles sickness can cause one to lose hope.

But hope is much more than wishful thinking or threadbare optimism. Hope is both a noun — a feeling of expectation and desire for a certain thing to happen — and a verb — wanting or believing something to happen or be the case.

Christianity defines it as a virtue — or a disposition of moral character. Catholicism categorizes hope as a theological virtue — “the pledge of the presence and action of the Holy Spirit in the faculties of the human being” (Catechism of the Catholic Church; CCC #1813)

The Apostle Paul describes hope like this: “For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.” Romans 6:24-25).

Hope is the power that gets me up in the morning to take the next right step. Hope is the exercise I choose to makes me stronger. It’s much more than optimism because positive thinking can only get you as far as you can imagine. Hope takes one beyond imagining forming an eternal perspective and a relationship with the living God.

Many people ask me how it is possible that I can have hope in such hopeless situations? It’s true, I am a hopeful person. If I had to choose a life’s motto it would be this — “There is always hope.” But I am not naturally optimistic. In fact, I tend to to see what can go wrong in a situation when most people think everything is going to be just fine.

It’s weird — I guess I’m weird. I tend to envision the worst case scenarios and see them through the eyes of faith and think about what God could do in the situation to use it for good. Maybe it’s my Irish heritage — a combination of foreboding thought and smiling eyes that tends to be a type of idealistic realism? Or maybe I just lack the energy to be optimistic all the time so I chose somewhere in between optimism and desperation.

Either way, I choose hope — or has hope chosen me?

This summer, I have come to realize that hope chose me.

It’s been another rough summer, not unlike last summer, with many ups and downs for my daughter Johanna. We started with a serious hemorrhage in May which was compressing her brainstem, requiring emergency brain surgery. That surgery was followed by a long recovery which took a steep downward spiral when she developed an aggressive staph infection in her brain. The IV treatments went on for a month and in the midst of it was three more surgeries to disconnect the hardware and control the pressure in her brain. Four surgeries in less than three months was harder on her than me for certain, but after 21 consecutive days in the neuro ICU, I was suffering from a foggy brain and losing my ability to choose hope.

That’s when hope chose me — along with the frequent use of the f-word.

When we finally arrived home, I had some time to speak with my counselor over the phone — who is both a mental health professional and a devout Catholic woman. I shared with her my exhaustion and my newly formed propensity to swear a lot — in particular to use the f-word. She chuckled and said something about how if I wasn’t swearing after the summer we’d had, she’d be a lot more worried about my mental health.

Still, in the midst of these trying times and flying expletives, the Lord ministers to the depths of my heart and causes me to see the beauty that is around me. While my daughter’s motor and cognitive skills have declined to the point that even she recognizes more of her limitations and is a bit discouraged, her beauty shines forth even more.

Her needs cause me to be gentler and to listen harder to understand her slurred speech and to read her face for answers when she just can’t find the words. The neuro-fatigue has gripped even me as we both take more time to rest. I choose my words more carefully and say them more slowly to help increase her ability to comprehend while her hearing seems to be affected by this recent decline.

Even while the rainbow incision of staples glisten on her hairline and the blood stained sutures travel up her battle-scarred head, Jo’s eyes sparkle with a depth that pales them all. While I sometimes want to curl up in a ball and sleep the rest of summer away, Jo’s hope keeps humming in my heart.

I hear the song of hope hum when Jo’s creating art. Even while we were stuck in the hospital for weeks on end, Jo painted cityscapes of Manhattan and a beautiful interpretation of the Empire State Building. She made videos and songs that made us laugh and cry. She inspired doctors and nurses and patients recovering from brain surgeries and strokes.

Everywhere she goes, Johanna inspires hope.

As we recover at home, we are helping Jo hang her artwork in “Jo’s Cottage”— to get ready for an “artist reception” that she’s been planning for the past six months. One of my favorite pieces she’s working on right now surrounds the word “REVAMP” emboldened across a larger canvas. The word is her self-proclaimed theme which she announced to me from her hospital bed while we were making plans to return home.

It covers all the bases — from therapeutic strategies to recover motor and speech skills, art and music endeavors — and finishing Jo’s new book — to more spending more time watching the sunset at the beach. I believe “revamp” was a word inspired by Jo’s gift of hope.

Last summer, I started a perennial garden very late in the season because of extended hospital stays. But my late gardening paid off in purchasing perennials at clearance prices.

I planted to attract bees, butterflies and elusive hummingbirds.

When we came home, the garden was in full bloom and butterflies greeted us as we drove up the driveway — flocks of them surrounding the tempting flowers in the front and back yard.

They were such a reminder of hope for better days ahead.

As the poet Emily Dickinson once wrote:

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sore must be the storm –
That could abash the little Bird That kept so many warm –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.”

Her poem reminds me that hope finds me when I think I’ve lost my way.

It plays like an old familiar song in my soul, beckoning me to listen.

I agree with Dickinson that hope is the thing with feathers as the birds’ songs are also soothing to my soul. But I would include wings— butterflies, hummingbirds, bees, especially dragonflies — are all signs of hope.

I sit in my garden searching for them until i realize i just need to be still and wait.

In the quiet — hope returns.

On the buzz and flutter of wings, hope finds me.

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Eileen Benthal
Eileen is a writer, speaker and wellness coach with a bachelor’s degree in theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Email Eileen