Two years ago I took my first step into an experience of hope I felt certain I would never have. For decades my experience of life was from behind a curtain where what was real was surreal, and what I felt was unreal. The pain was intolerable. Suicide was a certainty. It was just a matter of time.
Two years ago, through a genomic approach to mental health treatment, we discovered I have a genetic mutation that makes me deficient of a critical metabolic enzyme— 5-MTHFR. It's not special that I have this, and it's not special that we found it. All of us have some variant of these and other mutations that affect our physical, emotional and behavioral conditions, and all of us have access to the technology to find it. We have since found a dozen more significant mutations, and simple and effective tools to support my system's deficiencies.
Two years ago, with the support of a team of practitioners and a new treatment approach, I started an ascent I thought impossible. A decade of fibromyalgia, and a lifetime of chronic depression, ptsd, anxiety, dissociation, panic, paranoia, grief, suicidal thoughts, three attempts, and cripplingly low self esteem came screeching to a grinding halt. It was finally clear to me that what I had been experiencing—all my difficulties in finding a path to lasting wellness—was not a series of character flaws at all. Nor was it a matter of will, discipline or motivation. In that moment I was able to recognize that it simply would not have mattered ow many hours I reflected on "the couch" or what medications I agreed to exposed myself to, very little of my condition would or could change until we found these basic molecular flaws that I had inherited from my parents.
Two years ago, after rapid and significant improvements began to emerge from this genomic exploration, decades of failed treatment and mistreatment collapsed on me at once. I became enraged at the implicit and explicit messages I had received while running this marathon that is the pursuit of wellness that would have had me believe it was my fault I could not get better right; messages from loved ones and strangers that would've had me believe I didn't really want to be better. I was indignant, enraged, emboldened, and instantly resolved to become my best advocate and an advocate for others. In that moment I wrote the post below, Loosening the Knot of the Motherfucker Mutation. It was the genesis of this project.
Two years ago, my interface with life was fundamentally transformed in a matter of months. What I was capable of, how I felt, and the texture of my thoughts became everything I knew they were supposed to be. The relief was incredible. It was as if 100-stone of weight was lifted from me. And when the curtain drew, I could finally see the world around me with the eyes I was meant to have. I looked back at the world I had been occupying and wept at what I saw. I saw devastation. I saw a life survived but unlived. A life filled with pain, despair, loneliness, fear. I saw I was surrounded by people like me. Closeted. Alone. I saw that we were all hiding in plain sight, and that it was killing us. I described what I saw and called it 100Stone.
I didn't know it then, but two years ago I was poised to walk out of my closet to tell my story. I thought I'd never be here, but here I stand...with you. I am not cured but I am well, and more capable of managing my health than ever. Now, two years later, I am certain of something more: there are countless numbers of us trying to find our way back from the other side. There are thousands of us needing to speak our truths, and thousands more needing to hear your voices. We come from many worlds, rich and poor, many cultures, and many ways of living, and we are all alike in our humanity, our vulnerability.
On this day of my personal anniversary, I am honored to announce that we are done building your stories of 100Stone Project. We will be breaking ground this weekend to install your stories and the stories of your loved ones into their winter landscape. I am bursting with joy.
Please come see what you've made. Bring everyone you love, and reach as far as you can so that our most vulnerable brothers and sisters might hear us. This is important.
Without you this cannot work.
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Loosening the Knot of the Motherfucker Mutation
Posted on the BookFaces 11/02/13, upon the discovery of potentially life-changing genetic results
Friends, I have the most amazing announcement to make. After weeks of an acute episode in a lifetime of chronic illness, an emotional break in my ability to cope with this hellish marathon, and an overwhelming three-week schedule of intensive therapies in search of a path to lasting wellness, on November 1st at approximately 3:15 p.m I was given test results that may very well change the path and quality of my life henceforth.
Two weeks ago my doctor ordered a genetic test looking for the MTHFR mutation (fondly called The Motherfucker)—a mutation that would affect my body's ability to metabolize folate and other B-vitamins (essential co-factors in countless cellular processes). Yesterday we discovered that I am, in fact, homozygous for this mutation. There are several variants of this mutation. In my case, I carry two copies of the allele that hinders my body's ability to make an enzyme that is key in processing these essential nutrients. As well as producing severe embryonic abnormalities (had I tried to start a family), this mutation is associated with an overwhelming volume of chronic disease states including peripheral neuropathy, cardio vascular disease, MS, RA, lupus, Crohn’s, chronic inflammation, hormonal imbalances, mood disorders, dementia, Alzheimer’s, and an inability of the body to effectively process toxins in the blood.
Now, this might not sound so amazing at this point, but there are several tiers of good news here.
1. I am finally, accurately, and conclusively diagnosed—no more mystery, and no more potpourri of nonsense conditions and misdiagnoses.
2. I am saved—it is astonishing to me that my doctor could take so many apparently disparate symptoms of mine and put his finger directly on the source after only hours of examination and discussion.
3. I am sane—this result single-handedly explains…*deep breath and streaming tears of relief*…everything.
4. I am vindicated—this is a big ole’ fuck you to every doctor and non-friend that has dismissed me as neurotic, and every unkind person who has judged my life condition.
5. I am grateful—for every moment of compassion, nurturing, love and energy my friends, acquaintances and colleagues have gifted me throughout these years.
6. I am optimistic—I am bursting with excitement for what the future might bring because there is a drug on the market that can replace what my body doesn’t make. It’s not scary, and my insurance covers it ☺ I’ll be starting it in a few weeks. I can’t wait to see what comes.
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National Suicide Lifeline: 800-273-8255
Careline Alaska: 877-266-4357
Crisis Text Line: text 741741