March 5, 2024

What it’s Like Being on a Medical Diet. ~ Amber Paulina Walker


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“You look so thin!” “Congratulations!”

“You look so…thin…” “I’m concerned…”

Unsolicited opinions about my body and appearance are not new, unfortunately. It has been my experience growing up as a girl and woman in America that my body and appearance are always unwittingly on display for appraisal.

I’m admittedly guilty of presuming friends wanted to lose weight and congratulating them. I’m unlearning the habit of assumption, unless you open the door to that conversation, in which case, whatever your goals may be, I support you.

Losing weight was not my personal goal.

I’m on a medical diet—The Keto or Modified Atkins Diet (MAD) for epilepsy, to be exact. It was suggested by my naturopath, and after I had initially rejected it, my epilepsy specialist neurologist recommended it when I continued to have breakthrough seizures while on anti-epileptic medication, also known as “Drug resistant epilepsy.”

Now, after almost three years on Keto while working closely with my epilepsy specialist and the nutritionist who works with her at the local office of neuroscience in Seattle WA (and who apply the same principles as and consult with a leader in the treatment of epilepsy through the Ketogenic diet, John Hopkins Hospital in Baltimore), I have achieved more seizure freedom through a combination of medication, diet, and lifestyle changes than my neurosurgeon ever projected as a possibility for me after my life-saving brain surgery, which removed a ruptured malformation in my right temporal lobe that was, and is, the source of my diagnosis with Temporal Lobe Epilepsy as well as Focal Aware, Secondary Generalized Epilepsy. 

What I’m saying is, this diet saves my life every day.

It enables me to function, not exactly as an able-bodied person can, but more so than I could before I began it.

Diet has become a dirty, stigmatized word in our culture, and in some cases, rightfully so. I, too, grew up with physically and psychologically narrow, patriarchal, capitalist beauty standards. I was there when “Heroin” addict emaciation became chic. I was told my butt was “too big” when I was 14 and decades before The Kardashians made that a look. I was envied for being “skinny” throughout my childhood and adolescence and even following the birth of my two children and subtly shamed by my teenage friends who were even skinnier!

Like I said, being a girl in America, apparently your body is everyone’s business. Literally, the multi-million dollar beauty industry depends on it. And now with the Body Positivity and Fat Acceptance movements the pendulum hath swung.

I’m not a fan of pendulums, binaries, or absolutes.

Experience has taught me that there is always a spectrum and we don’t know what we don’t know, so the stigmatizing of any and all things associated with the word “diet” I find problematic.

The Modified Atkins diet is a spin-off of the Keto diet, designed to initiate the same effect—aka Ketosis, wherein your body starts using “fat for fuel” instead of glucose, the main sugar found in your blood, which produces ketones, hence the Keto diet.

Because the Keto diet became a trendy “fad” diet in our culture, there are a lot of myths floating in the air about it, but there are a lot of myths floating around about epilepsy as well (we are not all triggered by flashing lights, there are over 40 different kinds of seizures, don’t put a spoon in our mouth to prevent us from biting off our tongue, and so on).

First off, Russell Wilder first used the ketogenic diet to treat epilepsy in 1921.

Keto was invented in the 1920s for children with drug-resistant epilepsy.

Not in the mid 2000s alongside Paleo and The Mediterranean Diet, but if you want to do Keto or Paleo or any other diet because that is how you live your best life, you are as free to practice bodily autonomy as anyone who eschews dieting all together.

I don’t agree with body shaming—be it fat shaming, skinny shaming, or diet shaming, whether you follow a vegan diet or a diet of tacos and doughnuts is your business.

Also, Keto, as any person following the ketogenic diet for epilepsy under the care of our epilepsy specialists and (there are many of us) will tell you that Keto is not a high protein diet but rather, a high healthy fat (healthy being the key word for me) moderate/adequate protein diet.

I’m a borderline vegetarian on keto/Modified Atkins. There are vegans who do keto successfully; it’s not an all-you-can-eat bacon, cheese, and mayo diet. (Sorry to break it to you.)

But I digress, diet has become a word automatically associated with disordered eating in our society.

The actual definition of diet is:

“The kinds of food that a person, animal, or community habitually eats.”

We are all on a diet, like it or not.

Humans and our fur babies and the hunting lions and grazing cows in the wild.

So put away your pitchforks and torches, though not if you’re making crème brûlée. (There are keto versions of everything.) 

Many people have suffered serious damage due to alcoholism. It’s a real disease that causes real trauma to its sufferers; that, is a fact.

It’s also a fact that not everyone sipping champagne at a wedding, ordering a margarita in Cabo, or even getting drunk on a Saturday night is an alcoholic.

Just because you suffered disordered eating doesn’t mean everyone who eats shares your condition, and I think it diminishes the devastating reality of having such a disorder by presuming that everyone who’s ever walked the face of the earth suffers from the same thing the same way.

For me, my eating has never been more ordered than when I started working with professionals on my nutrition and adopted the keto diet as my lifestyle, not as a fad, yo-yo diet.

My seizures are relatively controlled, there is no cure for epilepsy as yet, but the most anyone with epilepsy can hope to achieve with meds or surgery or diet is harm reduction. Some achieve complete seizure freedom with this diet and some, like me, gain reprieves and are able to function with less medications at lower doses therefore bypassing many unpleasant medication side effects.

As an unexpected result of keto, the symptoms of my polycystic ovary syndrome (PCOS) have also decreased, and for the first time in three decades, I have regular menstrual cycles.

I cook food from scratch now and I cook with fresh vegetables I had never heard of before. I don’t see anything wrong with going from microwave mashed potatoes or fast food to homemade squash mash and zucchini bread. It’s not only good for me, I’m contributing less to the multibillion-dollar fast food and processed food industries.

Yet, I still feel the aura of shame and social stigma about a diet that’s saving my life to the point where when I tell people I’m on keto, I add the disclaimer: (“It’s for epilepsy, my neurologist prescribed it to me, keto was created for children with epilepsy in the 1920s.” See above.)

Because I don’t want people to think I’m doing it for the male gaze because I’m most certainly not. I’m a masc-leaning, queer woman. 

And because…the patriarchy.

And because…I’m disabled and my diet is one of my medications. It’s not a theory up for debate; the proof is in the sugar-free pudding. I have a documented decrease in tonic clonic/Grand Mal seizures and seizure-related injuries since I’ve been on the diet.

I want my loved ones to know how serious this is, there are no cheat days, and I’m not being rude when I turn down your empanadas nor am I being high maintenance when my restaurant orders are meticulous, and no, I’m not suffering from Anorexia, which is as serious as epilepsy in its own right—but with a different course of treatment.

But what if I wanted to be on keto just because it made me feel better?

I could exercise my bodily autonomy and do that too.

It is important to note that with any untypical diet, it is even more important to be sure you are getting all of your vital vitamins and nutrients.

I know for a fact I get my labs done more than most of my friends, every three months, like clockwork I get my lipids, vitamin levels, medication levels, ketone levels, and platelets checked.

My doctors monitor my weight, which is in the average BMI range for my height and activity level.

I’m at a far greater risk of dying or being severely injured from uncontrolled seizures, which I have suffered from than I am from an eating disorder I’ve never had.

There are times when I bristle at comments on my weight, whether they express admiration or pity. One reason being, I’m not wearing a sign that says “evaluate my body” while carrying a comment box.

And two because people rarely ask when the last time I had a tonic clonic seizure was (I still experience focal aware seizures daily but less so than I did pre keto) or ask me general questions about what living with epilepsy is like, nor do they greet me with, “Wow, you look really good when you’re not convulsing on the ground and chewing on your tongue! Great job!”

Keto helps me neurologically; my brain is not running on glucose; abstaining from caffeine and alcohol also helps me neurologically but people have less opinions about that these days.

If someone wants to give up coffee or nicotine or alcohol, there is less of a phobic energy around it then if someone chooses to give up say, carbs and sugar, even though the effects can be equally toxic if abused.

Keto also greatly helps me psychologically by giving me a way I can be proactive about managing a neurological condition that is defined by its unpredictability and, left uncontrolled, can be fatal.

Being prescribed pill after pill and hoping for the best while doctors tried to guess the winning combination was disempowering. Changing my diet was something I could do to empower myself and an added layer of protection against seizures, which are so debilitating, painful, and risk laden that I do everything in my power to reduce the potentially catastrophic effects, including but not limited to: listening to Mozart at 5:30 every morning, monitoring my sleep, working with a team consisting of Neurologists, Mental Health Professionals and Doctors of all stripes. Physical Therapy, acupuncture, psychiatry, Transcendental Meditation, Catholic Confession, Buddhist Chanting, support groups, EMDR, tapping, cupping, floatation tanks, if it could maybe help and I could afford it, I’ve tried it. Some of those things stuck and some didn’t. Keto doesn’t work for everyone with epilepsy. Surgery doesn’t either, and just because someone swears by a particular medication or cannabis doesn’t mean it will work for everyone.

Keto works for me; it has proven itself with measurable results and I’m happier. Giving up hot pockets and eating an avocado, blackberry, walnut, and feta salad is a small price to pay for seizure freedom.

But what if I didn’t have epilepsy and I wanted to forego hot pockets in favor or a salad?

That’s okay too.

And vice versa.

Just like we shouldn’t shove our religious agendas or patriarchal beauty standards on anyone, neither should we force our dietary preferences on anyone else, be it a preference for pasta or monitoring your carb intake.

Diet is not a word or practice to fear.

Shame is, no matter what size it comes in.


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