To the Woman Who Was Disgusted to Hear Me Talk About My Life as a Patient Over Dinner


I asked for Chinese food for my birthday, sesame chicken specifically. We arrived at an older restaurant with authentic Chinese decor. The tables were small and each restaurant goer sat somewhat near the individual at the residing tables. I know attending a local restaurant for one of your favorite meals may not seem like anything special, and I am sure we looked like your typical dinner date.

You sat at a table kitty corner to our small two-person setup. Your table was slipped into a corner near the wall. You didn’t know, but this dinner was not any ordinary dinner for me – this was the first birthday dinner I had had in four years. The first time in four years I have sat at a restaurant on the day of my birth and consumed a meal with family. The first time in four years I wasn’t attached to a feeding tube sending predigested nutrients directly into my abdomen through a tube.

 

As I slowly ate my chicken, I chatted with my mother over dinner. The sesame dressing was perfect, and the chicken was tender. I enjoyed every bite, making sure to savor each swallow. It was all new to me. Our conversation swirled around my growing hair, post treatment anxieties, and being reintroduced to the real world after years of chemotherapy and a bone marrow transplant.

My life, for the majority of the past five years, had been nothing but one doctor appointment after the next, one proceed, one surgery, etc. My entire existence orbited around my diagnosis by no choice of my own. Too sick to work, too sick to adventure, too sick to even eat. My mother calmed my nerves and told me I was doing wonderfully, that anxiety is normal for someone in my position.

We then moved our conversation to the excitement in my newfound ability to eat. A recent treatment had kickstarted my paralyzed digestive system enough for me to once again enjoy simple pleasures in life such as food. I expressed the deep pleasure it was to remove my last feeding tube, to be completely medical device-free after so many long years. That’s when you cut in.

“This girl over here keeps talking about her surgeries. Uh. I am trying to eat!”

I was taken aback. I froze, completely unable to hear what my mother was saying. Your words filled my mind and swept everything else away like a tidal wave. The disgust with which you said these words stung. That is my life. My whole life. You assumed I was talking about a surgery, a brief moment in time one can simply move past, but what I was talking about was my entire existence.

While most people have a plethora of topics to chat about over a meal such as work, weekend adventures and social outings – I have one. My health. My health has dictated every second of my life for the past five years, down to how I ate, how I breathed and how I spent my days. There was no in-between for me. I was forcibly stuck to oxygen tanks, feeding tubes and a central line that kept my fragile body alive.

For a brief moment I envisioned sitting at this table in a different life, one where I had other topics to choose from. I talked about my children, my long career as a teacher, the beautiful home my husband and I had purchased – but those things were only a fleeting dream. How I wished they were true. My young body, now sterile, can never have children, my career path derailed after only my first year and my medical debt has become a pool I could swim in.

I quickly snapped back to reality. I looked down at my chicken, the luster gone. “What else could I talk about?” “Should I just keep quiet?” “Maybe Netflix? Does my mom even watch Netflix?” I doubted myself briefly, thinking of topics that didn’t exist to appease you; however, disdain quickly took over the shock, and my head swam with the things I would say to you, the words I could muster to make you regret your inappropriate outburst. “I am sorry my existence is a burden to your meal,” because this is what your comment implies – even though you didn’t know it.

Instead, I took a bite of my glorious sesame chicken and remembered to be grateful for this moment. This moment where I was chewing, swallowing and digesting. No matter how badly I wanted to show you the error in your judgment, I wasn’t going to let you ruin my fist birthday meal.

I am not ashamed of the life I have survived, the five years I have conquered. That life will always be a part of who I am; the many scars will tell stories of the warrior who overcame unimaginable odds. Honestly, the fact that I am alive to disgust you over Chinese food is a downright miracle. 

As my life now moves forward and I am reintroduced to the work force, social gatherings and weekend adventures, excitement fills my mind. Someday soon I will have topics to chose from, a luxury you didn’t know eluded some.

This post originally appeared on The Tube-Fed Wife.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Ryan McVay.


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

22 People Share the Hidden Reality of Working Full-Time With Chronic Illness

When you develop chronic illness, your schedule can quickly fill up with doctor appointments, treatments and procedures. Any free time is often spent resting or staying in bed because of the pain, fatigue or other symptoms. For many, managing a chronic illness can be a full-time job in itself. But what happens if you work full-time on [...]

17 Apps That Can Make Life Easier When Brain Fog Takes Over

If you struggle with brain fog due to chronic illness or medication, it can be difficult to keep track of all your doctor appointments, medications and symptoms – not to mention all your other responsibilities, such as work, chores or taking care of your family. Staying organized and remembering everything you put on your mental [...]

How Chronic Illness Makes Me Feel Guilty in the Aftermath of Hurricane Harvey

I am safe and dry. I have access to the supplies I need. My family made it through Hurricane Harvey with minimal discomfort. I feel guilty. I feel relieved. I feel insufficient. When I first realized Hurricane Harvey was an imminent threat, my first thought was, “I hope I can still have my surgery next [...]
An older woman with a serious expression, looking into the camera.

When I Realized I Was Putting Myself Down By Minimizing My Illness

You should never speak badly about yourself. It’s easy to say, but not always easy to do. I am a 68 year old woman with chronic illness. I was brought up to help others and to care for them. I tend to try to fix things for others and to put others’ needs first. I [...]