Food for the Soul and the Body

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by Jennifer van Amerom |

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When I walk through the doors of Satay Sate, a local Indonesian restaurant, the aromas that hit me instantly remind me of my childhood. I first ventured there after my dad died, and I was brought to tears at my first bite. It was like they had stolen Dad’s recipes. While I never questioned them growing up, it was beautiful to recognize that Dad had always made authentic Indonesian dishes.

Now, every year on the anniversary of his death, I order large quantities of satay (beef skewers), nasi goreng (fried rice), and cendol (tapioca and cane sugar drink) to share with my family at his gravesite.

Food plays many roles in our lives. At its core, food is meant to nourish and fuel our bodies, but it can also be used to protect them. Food can also transport you to a time and place, as it does in my case. But when you’re living with a rare autoimmune disease like neuromyelitis, how does one know exactly what food to consume?

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Indonesian food is delicious, but it isn’t the healthiest diet. It is centered on meat — beef, chicken, pork, lamb — and eggs, which are often fried and covered in rich sauces. While there are some dishes that highlight vegetables, like gado gado, they are smothered in curries and oil and topped with fried onions.

A couple of years after my neuromyelitis optica (NMO) diagnosis, I spent time researching ways to improve my health. While there is no cure for NMO, I needed to find some way to return control back to my life. Over the last decade, I’ve attended numerous talks, watched webinars, and read books focused on food and how it can repair our bodies.

The book “The China Study,” by T. Colin Campbell and Thomas M. Campbell II, states, “It so happens that the antigens that trick our bodies into attacking our own cells may be in food.” With limited information on what causes NMO, I’ve had to assume this notion is true.

So how does someone like me, who grew up with rich, fatty foods and has struggled with limiting or giving up meat, reconcile what I need for my soul versus what I need for my body?

After every steroid infusion, I always need to lose weight. I never feel confident, and my body feels foreign with all the extra weight. This is how I discovered Harley Pasternak’s book “The Body Reset Diet,” which recommends consuming smoothies instead of meals for the first five days, and then transitioning to two smoothies for the next five days, then just one smoothie every day.

During one period of my life, I decided to become a vegetarian, but first, I wanted to know what food triggered my neuromyelitis symptoms. So I placed myself on the paleo autoimmune protocol, an elimination diet that slowly reintroduces food groups. It was during these four difficult months that I identified eggs to be the culprits of the burning sensation that is a common symptom for NMO patients. I don’t have this same reaction to farm-fresh, free-range, hormone-free eggs.

After reading “The Hormone Diet” by Natasha Turner, I tried to give up meat. My best friend is a vegetarian, so I turned to her for support, but with a 6-foot-5-inch husband and a growing child, we couldn’t consume enough beans and lentils to substitute our protein needs.

“Moderation.” That’s what my neurologist said to me when I was spiraling out of control. I came to one of my checkups armed with questions about nutrition, food choices, and suggested restrictions. After all this time of research, I felt no more the wiser.

I was also hungry.

If I were to follow the research, I was left with leafy greens and some vegetables. (It’s been suggested that not all vegetables are equal, like nightshades — peppers, potatoes, and tomatoes — which can hurt the immune system, but many studies have disputed this.)

I was overcome with a wave of relief. Living with neuromyelitis can have many limitations, and I didn’t want certain food, especially traditional cuisine, to be yet another restriction in my life. I do believe that food plays a role in my healthcare, and I’ve chosen to continue trusting my specialist and move forward in moderation. This includes alcohol, like the occasional glass of wine or apple martini. Together, my specialist and I have kept my body functioning and my soul fulfilled.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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