What if we treated caregivers like exit row passengers?

Imagine boarding a plane and being seated in the exit row. Before takeoff, flight attendants approach, ensuring you’re both able and willing to assist in case of an emergency. It’s a small chance, but the airline takes no risks. Now, picture the world of caregiving. Unlike the occasional flight, caregivers face a high probability of […]

Friend, I See You This Thanksgiving

Dear friend whose partner left this earth this year, but whose family demands that traditions continue, Traditions like turkey and pie and smiling and getting out of bed, I see you wanting to shout, “Doesn’t ‘tradition’ mean doing things the way they’ve been done before? Well, that will be impossible. Things cannot be the same. […]

Lonely – A Caregiver’s Perspective

Lonely. On a Tuesday morning In a Zoom call for work. My mind partially here But mostly with him  At the hospital down the road. I used to be like my colleagues, Putting PowerPoints and graphs In the column of things that are important, But that was before I was a caregiver. My columns have […]

Our Bodies Are Ours…And Yet

Our bodies are ours.

And yet,

it takes fancy machines and people with extensive medical training

to tell us how we’re actually doing,

what our future holds.

Re-Learning to Talk, Swallow, and Eat

She explained that after surgery, my 37-year-old husband would need therapy to re-learn how to talk, swallow, and eat. He would no longer be able to do three of the most basic life functions – functions that connect us to each other, provide us with nourishment, keep us alive. It was then that I realized I had underestimated what was about to happen. I left that appointment and requested a leave of absence from my job, explaining that I could not possibly work if my husband could no longer eat, swallow, or talk.

Loving Someone Rare

My husband is one of the 30 million Americans living with a rare disease.

His disease, Fanconi Anemia, (FA) has no color recognizable by the general public. You can’t buy cereal or water bottles or winter hats at your local Target to support its cause. Professional athletes don’t wear colorful sneakers to raise awareness on its behalf.

Even medical professionals are often unaware of the disease, though some remember the one question on their board exams that mentioned it.

Those Who Have Gone Before

The path which these caregivers and I had shared until now has forked, them going off in a new direction while I continue on. As soon as they are gone, I miss their presence as they blaze the trail ahead of me. I’m glad to not be with them, but can’t help but strain to see what their road is like, knowing that someday my feet will join theirs on its surface.

The High Cost of Waiting

The waiting, the worrying, and the planning caused damage. Days full of anxiety and devoid of sleep and deep breaths take a toll. Even as I feel the immense relief of the news I had hoped for, my body and mind do not snap immediately back into pre-waiting mode. Instead, a hangover ensues as my body works to detox from all that I have just endured.

Hear My Prayer

He put the camera through my beloved’s nostril and the only real time information I had was the doctor’s face.

As he scoped, I watched him closely and prayed.

“Dear God, PLEASE let it be clean. Dear God, we cannot handle more cancer. Dear God, the world is already too too much. Dear God, we have already been through so much. Dear God, hear my prayer.”

One More Sunset Together

A few steps in, I could tell that Sean was struggling physically. I asked if he’d rather turn around and go home and he said, “What if I never have another chance to watch the sunset with my daughter?” and so we slowly continued on.