As much as I’d dreaded and delayed transplant — believing it might kill me more quickly than the disease itself — once at the hospital, I basked in my status as a patient. In the hospital, with the exception of bathing and eating, I had very little to do. Food service workers prepared my food, delivered it to me and took my dishes away. Housekeeping staff cleaned my room daily, wiping down surfaces, emptying the trash, and dry-mopping the floor. Visitors brought me books and movies and food. Whenever a discomfort surfaced, I pressed a button and a nurse came…

On transplant day, I couldn’t help but feel excited. I’d released myself from worrying anymore about the transplant. It would either work or it wouldn’t and I had no real control over the outcome. My internal peace, however, was not shared by my family. They smiled for the camera, but fretted when unwatched. Anxiety and tension showed in their facial muscles — the clench of their jaw and furrow of their brow. They were, like me, eager for this day, which was such a long time in coming. The space was almost electric with anticipation, and some emotions I didn’t…

It’s a heavy thing, knowing your life will be abbreviated. Cut short due to a rare, genetic defect. Clearly, none can truly know when their body will yield to outside forces, but possibility and probability aren’t the same thing. Forces greater than entropy bear on me. Destructive forces that flow through the very marrow of my bones.

The impact of these forces has been vast. Profound loss, death and decay, that stripped me of parent, identity and ability. …

Mom checked on Roger around eight that evening and emerged anxiously from the room. She went to her purse and started rooting through it, looking for her wallet and the number to Roger’s oncologist. On the phone, Mom reported to the doctor that his temperature had risen and he couldn’t take a deep breath. The doctor, who’d guided Roger’s lung cancer treatment for the past several months, informed Mom that Roger needed immediate medical attention. Roger’s worsening cough and escalating fever indicated the situation was urgent and he needed to either check himself into a hospital in Chicago or drive…

It was here. The day I dreaded more than any other day of the year. The day my sixth-grade, all-girls gym class ran the timed mile. I feared the day with a distain most children reserve for the dentist or vaccinations. I’d take needles any day over running.

The morning air was cool on my skin as I walked with my class the few blocks from Holy Trinity Middle School to Johnson Field, where the high schoolers played football. If not for the despised task before me, I might have thought the day beautiful. The air was fresh and still…

I recall a doctor asking me the names of my chemo drugs

And, puzzled, staring blankly back at her.

Chemo drugs?

Oh yeah, that was me.

Was that me?

That I who skip along gaily through life,

Pink-cheeked and toned,

once skirted

the fringes

of existence.

“No, sorry I don’t recall. Is it important?”

Shaking her head, “Not really, it’s the past.

You can’t go back.

Yet today owes everything to yesterday.

The product of choice and action.

Memories have power.

Does the future, which calls?

I’ll maybe go there someday,

When tomorrow comes.

Time now for present presence



To be.

Despite having a progressive disease that is actively working to destroy my body, I am an overall healthy person. I exercise, eat well, don’t smoke and recently stopped drinking. I’m a few pounds more than my ideal, but hey, I’m only human. At the moment, all my systems are holding up well against the rare disorder I was born with.

As I want my systems to stay this way, I recently was forced to reconsider my feelings on mask wearing following the spread of a virulent virus that most assuredly would devastate my fragile biome if given the chance.


I lost myself in the pandemic, knocked down by sea change started by a tiny virus. The familiar, the normal, was washed away by waves of fear and confusion. The wilding chaos swallowed up the path that had moved me purposefully through life and suddenly there was no way forward. I was not prepared for this.

The ways in which my being most happily manifests itself in the world — meaningful work, community engagement, churchgoing, volunteering — disappeared. The unbinding of the interconnecting aspects of my life happened so rapidly, I wasn’t immediately aware of the repercussions. But without the…

Robin Huiras

Spirited warrior fighting the good fight since 1977.

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