Living with Gastroparesis: Hunger, Grief & Choosing Hope

Gastroparesis and the Emptiness of Each Day

I wrote in a post yesterday morning:

“A few days ago, my doctor asked me what I eat in a typical day, and I had no answer. I just sat there – because the answer really is, ‘Nothing.’ I am so tired of starving. I am so tired of the pain and of seeing my friends go through this. I want a normal day, just one, just a break… but it is never there. And it likely never will be again.”

That is a difficult truth to face, but one I must if I am to cope with this illness. My world is contracting, and I can choose: hold tightly to what I still have—appreciate them, spend every precious moment cherishing them—or allow the pain, loss, heartache, and grief to steal the moments that remain.

When Yesterday Creeps In

I am not normally one to dwell on how I wish things were or how they used to be. But yesterday? Yesterday was a rare exception. I am not sure what set me off. Perhaps it was a picture of my daughter and me at an event from years ago. Or maybe seeing her play basketball in our driveway, realizing she is not that same small child I once knew. I’m not certain. But something pushed me into a dark, reflective mood—and things spiraled downward from there.

I allowed myself, even if only briefly, to think of the friends I have lost, the family members who no longer call, the times I have sat alone while others gathered, the isolation of homebound life. I felt the physical pain, the sheer agony of trying to survive each day without food. I chose to feel the loss I’ve endured. I didn’t distract myself. I didn’t seek other thoughts or strategies. I abandoned all the techniques I know. Instead, I sulked, pitied myself, mourned the passing of my old life.

Diagnosis, Acceptance, and the Role of Purpose

Since the day of my diagnosis with gastroparesis, I have tried to accept and make the best of my circumstances. I am neither optimist nor pessimist—I am a realist. I believe in doing what I can with what I have. There’s no benefit in lingering over what might have been.

Over time, I have come to understand that though my life will not be what I once envisioned, it is still meaningful. I serve as an advocate and administrator in several online support groups. Helping others shifts the focus from my own suffering and gives me a sense of contribution and connection. I feel I am making a small difference—raising awareness, offering comfort. Those efforts grant me purpose. Often, that purpose is enough to carry me through the longest, darkest days.

But yesterday, I felt the weight of how small my world has become—and wondered how much more it might shrink.

Memories of a Life Outside These Walls

A photo of my daughter and me visiting the survivors of the USS Indianapolis in downtown Indianapolis flickered in my mind. That day was wonderful. I used to relish book signings, museum trips, theater shows, dining out, visiting relatives, concerts, sporting events—so many things I took for granted. I used to have a life beyond the walls of my home. Now, those days feel gone—and likely they won’t return. These days, I’m lucky just to make it to my medical appointments.

Watching my daughter make basket after basket through the window, clutching my heating pad against my stomach and abdomen, I remembered times when she was smaller, and we played “Horse.” I recalled leisurely walks through our neighborhood. I thought of the ocean—how much I loved it, how unlikely I may ever see it again. I recalled visits to the zoo, picnics by a pond, meals together. I mourn the loss not only of outings but of food itself. It’s been more than two years since I consumed anything close to a full meal, and many months since more than a few soft bites.

Family Memories, Loss, and Reflection

As I sipped my Ensure, memories of my husband and me in an ice‑cream shop surfaced—shortly before our child was born. That outing felt like the last of its kind. I thought of vacations, festivals, solo walks, anniversary dinners, holiday gatherings. I remembered the elaborate desserts I once made as I honed my baking—to find joy in creation. I recalled pushing my husband into ballroom dance classes, and the delight they eventually brought. I let myself reminisce over those moments, and grieved that I failed to see then that many of them would never return.

I suppose I held hope that one day I’d live them again. But yesterday, as I confronted the progression of this disease, I realized: that hope may not come to pass.

Home Adjustments, Precious Moments, and the Toll of Outings

We have made necessary adjustments as a family. We try to enjoy the time we have together at home. My husband attends events solo when required. We learn to cherish small moments and rely on each other. On those rare occasions we venture outward, I’m often left paying for it in pain for days afterward.

Memories flooded me yesterday. I recalled a recent conversation between my daughter and a relative:

“Today was such a good day! Mommy took me shopping and we were able to stay out a whole two hours!”

I thought of times she stood behind me, rubbing my back softly, whispering, “Are you okay, Mommy? Is this a bad day?” I heard her gentle voice comforting me: “It’s okay, Mommy. I understand. You can’t help it if you don’t feel well. Daddy will videotape it.” I recollected how she patiently explains to teachers, friends, and others that her mother has gastroparesis, meaning there are things I simply cannot do. I remembered how she’s participated enthusiastically in every “Go Green” event, and prays nightly for healing—not just for me, but for everyone in our GP community.

I considered how much this illness must weigh on her. Her fortitude is admirable—but I mourn her loss of a truly “normal” life. I thought of my husband, exhausted each night from work, yet still caring for our child, and tackling chores I once handled. I remembered him eating quietly, hiding his food perhaps so as not to worsen my pain. I replayed moments: him enduring my emotional storms, apologizing when I had no right to be angry; him holding me when I cried and pushing him away; telling me I’m beautiful even when my body shows otherwise. I felt memory of his hands on my shoulders, feet, easing me into rest despite his own fatigue. I remembered him praying beside our child in the other room—praying for my strength, healing, peace.

Fear, Uncertainty, and Choosing to Live

Yesterday, I dwelled on all we’ve lost—the abnormality, the horror, the “smallness” of my world—nearly to the point of collapsing. I tried to latch onto the good: friendships, compassion, understanding, wisdom, spiritual gifts, love. But fear lingered. What if my world shrinks further? What happens when my daughter graduates or marries and leaves? How will I bear her absence when so few treasures remain?

I’ve often wondered if I will even survive long enough to see her milestones. I rarely think about what might follow after that—but yesterday, those questions haunted me. What if my husband falls ill or leaves due to the burden? What happens if he passes away? Who will take care of us then? What if I’m left with nothing, no support, truly alone? The hypothetical darkness frightened me.

But today, I am in a different space. I know I cannot stay trapped in those thoughts. Today, I choose to refocus. I have a devoted husband; a loving, trusting child. I have compassionate friends and family. I have projects and advocacy that lend purpose. I have faith in a God who watches over me, guides me. I hold precious memories no one can take. I have a family that understands love. Most days, I cling to a dim hope for the future—not just for me, but for all who share this journey.

Today, I choose this life, whatever remains. I choose purpose, willpower, faith, and the ongoing fight. I choose to support others on this path. I choose to apply the ideas, techniques, and habits I know help me. I will embrace the good as long as I can, shrinking inward only when necessary—and never surrendering without struggle.

It has been a good life. It still is a good life—if I choose it to be.

At Ravoke, we stand with Melissa Adams VanHouten and the broader gastroparesis community. We support the ongoing efforts for awareness, advocacy, and compassionate understanding for those suffering with this cruel illness.