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Notes From the Genetic Underground

Earliest photo of me (mom's amniocentesis)

Earliest photo of “me” (mom’s amniocentesis)
Though we use the Western anatomical terminology and mapping, we are adding meaning to these terms through experience. When we are talking about   blood or lymph or any physical substances, we are not only talking about substances but about states of consciousness and processes inherent within them. We are relating our experiences to these maps, but the maps are not the experience.     -Bonnie Bainbridge-Cohen

 

In early April, I got some genetic testing done. I spit into a plastic container, mailed it off, and three weeks later found out that I’m 50% Ashkenazic 44% Western European mutt, and a tiny bit North African and Native American. Interesting, but not why I did it.

My doctor told me that, given my history of autoimmune diagnoses and chemical sensitivities, I probably had some genetic mutations, and it was likely that at least some of my symptoms were environmentally triggered. “200 years ago,” she said, “the levels of toxicity we have now would have been nonexistent, so most of the mutations we’re looking for wouldn’t have affected you at all. Basically, if you lived back then you’d be an Amazon.”

She smiled and recommended I do a test* to find out what sorts of nutritional and lifestyle changes I could make to address my supposed genetic predisposition.

 

Getting My Results

Genetic Testing Results

When I got to my doctor’s office, she was waiting for me with print outs of the information I’d emailed her detailing my mutations along with foods and supplements to incorporate/avoid. She came over and sat next to me so we could look at the data together while she explained it (bedside manner: A+).

“Oooh, see this?” She said, “this means you can’t break down adrenaline properly!”

“What does that mean?” I asked

“You’re gonna love this” she said, “Imagine I tell you your dog is dead.”

“Great” I said

“You feel shock and grief and have a massive rush of adrenaline. Then a minute later I say, Oh! my mistake. It wasn’t your dog that died, it was someone else’s! A person who’s breaking down adrenaline properly will recover from that quite quickly. You, on the other hand, physiologically, will still be mourning your dead dog three days later.”

I told her that sounded like me. We both chuckled.

“And guess what,” she said, “I have the same thing. People like us, we need to find ways to take a little extra care.”

“Well, what do you do about the adrenaline thing?” I asked

“I like to lie on the ground” she said

Laughter again.

“Me too,” I said

She went on to explain how my body detoxifies (doesn’t), how prone I am to inflammation (very), how liquor is likely to diminish the grey matter in my brain (!), why the way my body handles estrogen means that exposure to estrogen mimicking compounds in plastics and pesticides is more risky for me than the average Jane….

Nothing she told me was news. I already knew I was sensitive to chemicals, that my body gets easily inflamed, that I am estrogen dominant, I don’t drink. But as she went down the list of my gene mutations, tears welled up.

I saw my doctor’s expression change. She went and sat across from me so she could look me in the eye (bedside manner: A+ again). She told me that she felt emotional when she got her genetic testing done, too, and so did many of her patients. She said that when people got their results back, they often found compassion and forgiveness for themselves that they’d never had before, and it was profound. “Having this information can be very empowering,” she said. “It’s a tool to help you navigate. Remember, your genes are not your destiny.”

I thanked her with a hug, left her office, and then sobbed all the way home.

 

The Takeaway

On the surface, this test didn’t change much. Maybe I’ll take a few more supplements, avoid a couple foods and additives more diligently. But then why the deluge of tears? I know that none of my illnesses were “my fault”… right? Well, as it turns out, Shame is a sticky mistress, and unsticking is quite a process. After years spent fending off a barrage of medical skepticism, seeing my results on paper in the official language of medicine, and seeing my doctor see them, was truly a first.

This thought kept running through my head: Oh my God! Everything I’ve been through is real!!! And that surprised me quite a bit because I thought I knew that already. But I guess knowing can always goes deeper, and you don’t always know what you don’t know.

Autoimmunity is nebulous and unpredictable and it can really get to you. Illnesses change forms, differing from day to day and person to person. Symptoms are wide in scope and the language we lay over them seems to roll off like water. I’ve spent years feeling like I was tripping on smooth ground wondering how other people walked along without a hitch. Self-doubt and I have a long history together.

So, in the end, genetic testing helped me take another big step towards remembering yet again (I will forget and remember this a thousand times over) that just because my obstacles are not everyone’s obstacles, that doesn’t mean I’ve dreamt them up.

I want to be clear, I’m not saying this test is a cure-all or a surefire path to validation. I am sharing this experience because so many of us have been told by doctors that our bodies are “attacking themselves”. There is blame implied there, and that blame is placed within us; that is a heavy burden to bear. But these days, so many of our bodies are registering imbalance and toxicity in the world around us, and that means our sensitivities are an intelligence, not a failure. Knowing this and naming it has given me immense relief, and my hope is that someday soon, many more of us know this too, and can say with confidence, “my body is not attacking itself, my body is responding. My body speaks.”

 

*Genetic testing is drastically cheaper with ancestry kits like 23andme than regular genetic testing in a lab. You can upload your results onto sites like geneticgenie.com or nutrahacker.com and then take that data to somebody who can help you interpret the alphabet soup