Wednesday, August 30, 2017

Chinese food, specifically Sesame Chicken

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 in 4 years. The first time in 4 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 coxed 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 new found 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 please 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 back. I froze, completely unable to hear what my mother was saying. Your words filled my mind and swept everything else away like a title 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 5 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 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 quite?" "Maybe Netflix? Does my mom even watch Netflix?" I doubted myself briefly, thinking of topics that didn't exist to appease you, however; distain 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 5 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, that 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 gathers and weekend adventures, excitement fills my mind. Someday soon I will have topics to chose from, a luxury you didn't know eluded some.


I hope you enjoyed the first non-medical-update post I have written in over a year! My mind is swimming lately! I adore it. Finally after months of fog and muddle from chemo, I feel the writer in me start to bud again! Xoxoxo


  1. Hi Chanel, I completely understand how you felt after that person said that in the Restaurant. I also have been battling for my body to heal but have had no success. You & I share all of the same diagnosises except for Ehlers Danlos Syndrome (I have multiple types at once), Hoshimotos Thyroiditis & Papillary with a Follicular Varient Thyroid Cancer, Superventricular Tachycardia, a right hemisphere brain injury, Hydrocephalus, multiple neuralgias: Trigeminal, Geniculate, and Glossopharengeal, I also have Dercum’s & Lipedema Plus endometriosis, PCOS, and uterine fibroids which I finally had a hysterectomy for several years ago after most of my reproductive organs were destroyed by disease. I am a Type 2 diabetic, with sleep apnea, and I am still being evaluated for osteogenesis imperfecta as I’ve broken a bone every year for the past 10 years. Yes, I’ve been battling for my life for 10 years now. I have had too many loved ones say things like the person said to you in the Restaurant, I deal with it all the time but it never gets easier. I tend to start getting more closed in because I don’t want to be judged by others may they be people I know or don’t know. I’ve also had many medical professionals to count that have been rude to me, saying I’m seeking out drugs or that I should just toughen up! They see that I have multiple Master of Arts degrees & that I haven’t worked in 5 years. They act like because I’m educated I should be overcoming my long list of medical conditions. Well I’m now a Hospice patient and am finally having my Pain controlled and I’m able to type out my thoughts on what I’ve been through these past 10 years, I’m thinking of starting a blog to use as a place to store my memories as I write them down so I can help others not feel so alone. You have been an inspiration to me these past 5 years! I’ve been following your blog and have enjoyed reading your articles on “The Mighty” webpage. Thank you for sharing your life with us! You’ve helped me get through some tough times, because I knew I wasn’t alone, and that there were treatment options. Thank you! ❤️Rachel Principato Goodman, Jacksonville, Florida

  2. Ignorance is bliss so they say!
    I wonder if that disgusted person would cope with even half of the things you have been through? I doubt it! Fighting any disease makes you stronger, in the fight to survive you indeed become a warrior. Enjoy everything you do especially food you deserve it. You are a wonderful positive person and an inspiration to many including myself. Look forward to hearing your next update 💞 Tarra, Nottingham England.

  3. I find it breath taking how oblivious so many healthy people are to our world that could so easily become theirs too in an instant. In the brief and rare outings I can have I look enviously at people who sit around indulgently complaining about things I would kill to have. I would give anything just to be able to sit and chat with a friend at all without fainting or suffocating. It breaks my heart. Love to you, Chanel..and well done for not letting the spoilt, entitled and indulgently oblivious idiots and their comments ruin your progress😊

  4. Wow! Sounds like you handled yourself well, but I may have ruined my dinner by engaging with such rudeness. I spent a lot of the last couple months only talking about my health and finally have the good fortune to not worry so much about it. Healthy people have no perspective for this. I'm grateful that you put you and your health as priority number one so that I could share your journey in your blog and that you're feeling inspired. Thank you for sharing with all of us.

  5. Sorry you had to deal with such a thoughtless, rude person. :-( That person would do well to remember the quote (attributed to Plato, tho I'm not sure he's the true source) -- "Be kind, for everyone you meet is fighting a hard battle!" Keep fighting YOUR battle, Chanel, and please try not to let others get you down, even tho I know that's difficult sometimes.

    You are beautiful, inside and out, and you are full of love, light and life. <3 I'm not religious, so I don't pray, per se, but I am still spiritual (if that makes any sense), so I've been thinking & sending very GOOD thought your way, and will continue! *HUGS* from Shari K.W. in San Jose, California

    P.S. Happy B-Day! :)

  6. I have read your blog for several months & have followed your journey. You are an amazing person & love to hear how far you have come. When I read about what happened to you as you were enjoying your birthday meal I was disgusted. First off it was not that person's business as to what you were talking about & how dare that person say what he/she said having no idea what you have been through! You are a warrior & I know that God has awesome plans for you!!
    God Bless from Kansas!!!

  7. I found your video on youtube by happenstance and looked you up. Such an amazing story of courage and determination.

    I look at what you've endured and don't know if I could find the courage to face something like that in my own life.

    I'm so glad you chose to share your story and your unique journey.
    All the very best.

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  9. Chanel-- this brought tears to my eyes as I recently had a VERY similar experience. As I have just recovered from my disease, there's something of an identity crisis as I realize just how absent I have been from the world, how removed from those around me. Yet, as you've said, we have this glorious opportunity to be, to take part, to discover and develop new hobbies and thoughts and experiences and topics of conversation! I'm so excited for you and grateful, ever grateful, for the true gift that life is. Thanks for your perspective.