Swimming Upstream: One couple’s journey toward accepting difference


At the Feb 5, 2018 meeting of
NAMI High Country, my partner Melanie and I gave a joint presentation about our journey toward accepting difference. I was profoundly moved by how many friends turned up to support us. I was also so deeply moved by feedback we received right afterward, and wish I could have recorded it somehow to recall on dark days. The part I offered follows below.

Thank you for joining us tonight. I appreciate this opportunity to share part of our journey with you this evening. I’m going to start with a bit of my story, my partner Melanie will offer some of hers, and then we’ll open the floor for some discussion.

My name is Cath Hopkins. I have lived with disabling mental illness for 25 years now. Very recently I’ve discovered that undiagnosed Asperger’s Syndrome underlies my paradoxical quirks and gifts. I’m only beginning to see how profoundly intertwined neurodevelopmental disorders (including Autism) are with the psychological problems that easily develop while living in a neuro-majority’s world.

Very early, I realized who I was at my core was fundamentally flawed in the eyes of others. I was “too much” in “too many” ways: too shy, too restless, too anxious, too picky, definitely too sensitive, too emotional, too inquisitive, too idealistic, too intense, too much a tomboy. I came to believe I was defective. So, I learned to self-censor. It was exhausting & dispiriting, but it enabled me to fit in reasonably well, which was almost always praised and further reinforced. It became for me a camouflage of conformity I hoped would protect me.

But I was feeling even more alien by the time I was 17, when I fell in love with a 23 year-old female friend who seemed able to see beyond my protective masking efforts. That in and of itself was overwhelming and confusing in many ways. But rampant homophobia frightened me out of telling anyone. To manage my feelings I began self-medicating w alcohol. In my 1st year at college as my relationship disintegrated, I suffered deeply in silence. In my 2nd year, I began coming-out, to incredibly mixed reactions. It was painful.

In my 3rd year of college, my life was even more profoundly altered. I was in love with a classmate who killed herself. The only other time a loved one of mine had died, I was too young to really get it. The trauma of this loss shattered me. I went into full-blown Major Depression, and PTSD. I finally sought counseling. I tried to finish my degree, but after a disastrous following semester, I dropped out. Initially I declined anti-depressants, fearing taking them would confirm I was officially “mentally ill.”

When some 6 months later my symptoms were worse if anything, I took the anti-depressants but told few people. For a while they helped, but my ongoing despair accelerated nearing the one-year anniversary of the suicide. I sought out hospitalization once I too became suicidal. I felt ashamed that I couldn’t bounce back. But there I felt less alone. I learned so many others secretly felt alien and suffered deeply too.

Shortly after leaving the hospital, I sobered up through Alcoholics Anonymous, and I have remained sober for 24 years now. I also continued with counseling and anti-depressants, and I eventually also completed my BS in Biology. I established a solid career in Environmental Protection—a field I was passionate about. The stigma around mental illness continued to disturb me, so I gradually got off the antidepressants, thinking if I could do without them, that meant I was not mentally ill.

What I didn’t realize was that for me, anti-depressants played a role comparable to insulin or thyroid meds for other people. And while I did manage to function to some degree for a couple years, my untreated Depression seemed to be building strength under the surface. Once it exploded again, it was even more difficult to get controlled, and included debilitating panic attacks and agoraphobia as well.

I would awaken each morning sobbing to find myself still alive; I’d read the same sentence 10 or 12 times to decode it; tell coworkers my back hurt to justify lying catatonic under my desk during breaks & lunch; and routinely flee grocery stores after painstakingly loading my cart, then panicking in the checkout line. I lost over 30 pounds without realizing it. Mental illness had again taken me over completely.

This time lacked a discrete traumatic event as the obvious trigger. Looking back though, I was worn down by years denying my inner wisdom about how to live my life authentically, while settling for a ‘safe’ mainstream path. I had been convinced that the alternative careers or living situations speaking to my spirit were simply too risky. I didn’t know that for me, it would be conformity that was too risky.

While so many craved NYC for shopping & urban entertainment, I craved remote backpacking treks for communing with wilderness & swimming secluded streams. But the higher I rose up the ladder at work, the more I was stuck inside the office. I pinned a map of the Southern Appalachian Mtns to my cubical wall to just stare at, fantasizing about living full time in wilderness. But I was getting lots of accolades, I had a nice home and I looked so successful. I felt trapped. I stayed until it nearly killed me. I finally resigned, believing I had failed. Ironically, this freed me to try something totally new and once deemed off limits by virtue of being too risky.

After getting relatively stable again w counseling and medications, I relocated to a remote forested place in the Missouri Ozarks. I rebuilt an abandoned 400 square foot cabin with no running water on a 500-acre forested land trust. I swam and bathed with turtles and crayfish in the pristine river; wandered the woods daily with my animals; and chopped wood for heat. I developed a newfound sense of profound integrity & inner peace, living such an eco-centric and sustainable natural lifestyle.

But my deeply internalized need for external approval rose again. So I attempted to engage in part-time paid “work”. But something in my biochemistry or neurology was so out of whack by then, that I could only summon adequate social and mental energies periodically to function in ways that people expect. In between stints of socially-acceptable functioning, I would disintegrate into states near catatonia. My final employment attempt ended with another voluntary stint in a mental hospital.

I had worked enough quarters to qualify for Social Security Disability, and I finally realized that I had to try for it. I felt deep shame at not being able to earn my own living, but it clearly was no longer possible. When I finally did apply, though, I was unprepared for aspects of the application process that I found dehumanizing.

Every other application I’d ever filled out in my life required putting my best foot forward. But by definition, this required cataloging with exquisite precision each of my failures and exactly how defective I was at functioning in a mainstream world. Old records had to be dredged up, and new testimonial letters from those witnessing my struggles were strongly encouraged. While awaiting the SSDI, which would come through, I fell into severe poverty. To get by I applied for both food stamps and Medicaid, another process that also tends to be demeaning and disheartening.

To compensate, I worked hard at creating a new paradigm for my life that did not define success in mainstream ways that crush my spirit. Though stripped of status and salary, I found I felt 'wealthy' to be living in that forested sanctuary teeming with wildlife. I learned valuable homesteading skills. I was growing and canning vegetables. I delighted in how little water and electricity I used. I was living the soul-enriching life I once dreamt about from my old office cubicle. Gradually, I re-established a sense of balance. I felt a new awe, joy, and a deep appreciation for my own life.

Within two years, I was inspired to explore reconnecting with humanity. In 2008, I was most extremely fortunate to find Melanie, whom I feel privileged to call my life partner. Meanwhile my Ozarks retreat was becoming far less of a sanctuary due to conflicts between others in the Land Trust. I enjoyed being here more and more with Melanie, noticing similarities in the forests here, and hiking Appalachian Mountains instead of Ozark Hills. Conscious self-care, Melanie's kindness, and more hiking helped me transition to this populated setting around Boone. I moved full-time in 2010, and Melanie and I celebrated a Holy Union with our family and friends. My life is tremendously enriched by being with Melanie. Her unique perspective on the world always inspires me.

But living in this more conventional setting has increased my struggles w balance and self-esteem. I’m now around rivers & wildlife less, pavement & people more. Almost everyone appears more at home than I in our mainstream culture. People are busy, efficient, and productive while I require 12 hours of rest, and abundant downtime between events or engagements. I need my time in the forest the way many need TV, alcohol, or coffee. Despite my differing values, it takes conscious effort for me not to feel less-than when surrounded by so much human industry.

Nevertheless, with Melanie’s encouragement, I continue to develop a new model of life that fits for me. I also try to be mindful of how I might effect positive change. I’m not comfortable in public spheres. But several years ago I felt called to social justice advocacy. When the NC constitutional amendment was proposed banning same-sex marriage, I collaborated to advocate against it. Too many suicides are triggered when people are so diminished. I went so far as to speak out on local radio, and TV, and at both Town Hall and County Commission meetings. In the end, in 2012, a majority of North Carolinians voted to ban gay marriage.

When in 2013 a broad collection of damaging legislation steamrolled through the NC General Assembly, I was driven to get actively involved again. I was horrified by how people already marginalized for their race, gender, low income level, and lack of citizenship status were to be treated by NC government. I allowed myself to be arrested with 150 other NC folk in a Moral Monday civil disobedience event.

I was afraid, but I had come to believe that my mental health would be at greater risk if I did not take action of that magnitude. Sitting by as others got denied the Medicaid that helped save my life during my darkest days was intolerable. Legal protections for dignity and worth being stripped from those most in need was outrageous. I stood up to call for justice and compassion, in a manner unlikely to be overlooked.

Clarissa Pinkola Estes says: “One of the most calming and powerful actions you can do to intervene in a stormy world is to stand up and show your soul… Soul on deck shines like gold in dark times.”

By then, I was on a roll. My next step was to help found a local branch of the NC NAACP, which soon demanded far more of me than I’d expected. I struggled with hosting multiple meetings each week, and needing to be far too socially engaged. Within months, my well of extroverted energy dried up. I’d overextended & could not sustain it. I discovered my ability to be so engaged was akin to riding out an adrenaline rush, rather than a realization of any lasting functional transformation.

So unfortunately, I lost my equilibrium once again and sunk into another Major Depressive Episode. I resigned and withdrew in the fall of 2014. Ironically, it was in that same fall of 2014 when the federal courts overruled North Carolina's 2012 denial of same-sex marriage. Melanie and I quickly celebrated with loved ones by obtaining the official ‘legal’ union status unavailable during our 2010 Holy Union.

Despite the emotional boost at being newly acknowledged by my government as a 1st class citizen worthy of legally recognized love after more than two decades of secret or stigmatized relationships, I was struggling to bounce back from my overextending. Earlier in my life, I might have gone back to the hospital to stabilize. But my soul sensed that I needed to return to an Appalachian Trail journey I began 20 years earlier.

I was incredibly fortunate by then that my partner, our parents, my psychiatrist & therapist each understood the healing effect immersion in nature has on me. So I had each of their blessings. In Dec of 2014 we adopted Sojourner the rescue dog to join our family. Sojo & I spent 3 months training to build ourselves up for the trek. Sojo has proven herself a most exceptional hiking companion. She has a nervous temperament like mine, so we connect easily. We spent 7 months on that journey, and it was a pilgrimage that soothed my soul.

Thanks in huge part to support from Melanie & our parents, and the healing that Sojo & I both find in roaming forests, we had an absolutely amazing journey and did complete the Trail towards the end of 2015. Sojo and I continue to hike from our home most days, and Melanie joins us at every available opportunity.

I continue to seek balance and healing, swimming upstream more and more now against the neuro-majority mainstream culture that is so triggering for my neuropsychology. The lens of Asperger Syndrome (now part of Autism Spectrum Disorder in the DSM5) is now helping me sort-out aspects of my life that once seemed unrelated to each other.

The extraordinary problems I have always had with processing sensory input, my very odd sleep patterns, my intensities, extreme intelligence but impaired practical abilities; difficulty with social gatherings, time management, and communication issues; uncanny connections with animals and nonverbal humans, and extreme special interests.

Because I spent so much of my life working hard to fit in, I can generally mask most of my difficulties. So I do NOT resemble the stereotypes most people associate with Aspergers or Autism. In addition, my anxiety and depression very often co-occur with Autism Spectrum Disorders (as do other psychiatric disorders), and many times those issues are disabling enough so underlying ASD issues can go unnoticed.

I have some particular paradoxes. I tested out as having perfect hearing, but background distraction makes it absurdly hard for me to converse. Even if it is quiet, I struggle to focus once a group size exceeds three. I can connect well w people one-on-one face-to-face when energy allows. But via telephone when I cannot see peoples faces, I cannot sync up with the elementary back & forth flow or cadence that seems so natural for most people. In addition, Melanie has helped me see how much more abruptly I am inclined to sign off from my calls.

In order to prevent headaches I have to wear a ball cap even inside, yet I have to use a sun-lamp to get through the winter. I cannot read magazines but I am sought out to proofread legal documents. I have an exceptional long-term memory, but I am always forgetting the most basic things, including turning the heat on at home. I’m told this is quite unusual.

Some days, I easily create spreadsheets, install rain-gutters, even dive and catch mothers-in-law rolling down mountainsides. Other days, all I can do is get out of bed to walk with Sojo. Melanie says I’m a landscape artist with a weed-eater, but I can’t manage to chop vegetables for a salad. These paradoxes feel baffling.

I think now I’ve finally accepted that I have exceptionally limited social & executive energy. I am trying to create more realistic expectations for myself. I have learned the hard way: that mainstream culture’s standards can be counterproductive for people like me. When I have tried to force myself to be like others for the sake of conformity or seeming convenience, it has profoundly devastating repercussions that leave me with deep scars.

I need to listen and act when my intuition advises retreat and additional time immersed in nature. I think one key is in learning to see myself as ‘neutrally different’, rather than defective. At this point, I am cautiously optimistic and wondering what lessons and adventures might be still ahead.

Whatever may be, I’m still standing – soul on deck; this is me, now orienting upstream.

[At this point, Melanie offered her own personal piece on our theme, which I found to be very powerful. I am extremely grateful to her for sharing from her own vulnerability and strength. As she is currently employed in a highly visible position in a relatively small community, she shares less on facebook than I do. As such, her piece is not included here. We also had some opportunity for group discussion, and showed the incredibly uplifting video, “This is Me”:]

NOTE: This talk happened to fall on back-to-back days with a shorter one I did on a similar theme. There’s a bit of overlap, but the other one has includes a flowerpot metaphor I didn’t include here. If you’d like to see that one, it is available at:

https://www.facebook.com/notes/cath-hopkins/speaking-on-risky-business-and-whole-hearted-living-at-high-country-ucc-nc/10155131467020918/