More than Romance, We Just Need People

I recently received a testimonial that brought me to tears.  It reinforced my conviction about the vital need for human connection and also the importance of stepping beyond our comfort zone.  I created this website to facilitate stories like this.  I’ll include it here (with names changed).  Its power is self-evident.

Its been a while since I’ve logged on, but I think about NLL pretty much daily.

The site hasn’t brought me the love of my life (yet?) but has been instrumental in some really good friendships.

You have had a hand in this…     tomorrow, someone I met from NLL is coming to stay with me for a few weeks.     He has OCD  and had sequestered himself in his flat pretty much for the past 10 years or so.

Through many emails, first on NLL, then elsewhere, Skype voice calls, Skype video calls, we talked about his Great American Adventure…   Some day.    Meanwhile, we saw each other through horrible breakups, ups, downs, and everything in between.

Then…   the passport struggle.came.. ( I take such things for granted, not worrying about how such things are processed.)      The roadblock was overcome, along with maybe the realization that OCD doesn’t have to hold him hostage.

Then there were REALLY cheap flights from the UK to Boston    Joking not so much now…   we wondered – could we both handle a long visit?     The click of the ‘purchase’ button was a tense one!

Tomorrow, I will pick up my friend John from the airport.   He  will be facing a lot of firsts, challenges, and anxiety.   I will be seeing my world through the eyes of another (with my own anxiety!).   There will be highs and lows, but it will be good, and his world will have expanded greatly.

John’s coming to visit…  and you very much helped with this adventure.    So, thank you.

And then a few weeks later…

John did make it to the US.    It wasn’t the easiest trip over – airports are intimidating for the uninitiated, especially those with anxiety.      However, he was able to put that behind him.    One phase of the trip so far seems to have made him happier than I’ve ever seen him.   It was a very nice peaceful getaway.   

We then had planned a trip to a big city, so we went.   This wasn’t the right fit for either one of us.    It was a low point, and I think we both are exhausted from it.   There are two more phases left for the traveler…. and here’s hoping that they both are wonderful.       While he’s away for a few days from here, I remark still how nice its been to have him around.      I kinda miss the guy.   🙂    

You asked if I had thought that there were other similar stories.   Undoubtedly there must be.   Your site, because of the nature of the members, encourages a deeper level of interaction.   There seems to be more caring in communication than experienced on other sites.   Just knowing that revealing a big part of your life will not necessarily illicit a negative reaction allows one to be more real.

At least that’s what I think.

We’re all on the same journey.   New experiences…opening ourselves up to others enable connections that heal.  Nolongerlonely is committed to creating a space that enables such connections.

Movie Review: Split

I just watched the film “Split” on DVD fully expecting it to be another insensitive Hollywood swipe at depicting mental illness.  I emerged with mixed feelings.  The film abides by a familiar abduction plot, cute teenage girls locked away in some basement dungeon with a deranged warden and complicated motives.  M. Night Shyamalan (wrote and directed the film) is known for injecting a sense of unease and a bit of twisted suspense in his films.  He does put his personal stamp on this one but the plotting is fairly standard.  What distinguishes “Split” is our villain—a man with a serious mental illness.  The trained eye easily diagnoses Dissociative Identity Disorder, however an explicit classification doesn’t come until near the end of the film.

The film treads a precarious balance between suspense/horror and character study.   Any depiction of DID of all mental disorders invite sensationalism, and while I think McAvoy’s performance here is dead-on this is not your typical mental patient.  My worry is that casual viewers of the film will extrapolate that this is typical behavior for the mentally ill.  The truth is DID is exceedingly rare (some professionals even question its existence).  People that have DID are almost always the victims of some type of horrific trauma.  The director could have further humanized our villain (this inevitably makes them more interesting and compelling) with more backstory.

I did feel that the scenes between the villain and his psychologist were genuine and authentic.  The writing is not lazy.  The various personalities are believable and nuanced.  The film is entertaining and McAvoy’s performance is delightfully over-the-top.   Ultimately this is a suspense film and not a drama, but there is more effort here to treat mental illness accurately than most.  The sad reality is that most moviegoers have no clinical understanding of mental illness and will view this man as a generic “psycho”.  So I’m left a bit on the fence with the film.  It exceeded my expectations but I guess I’m still waiting for that one big Hollywood film that gets its depiction of mental illness right.

Making the case…

The question I get asked most often regarding Nolongerlonely (other than why haven’t I
found a wife on the site yet) is whether it is a good idea to pair together two people with a mental
illness. The arguments/hesitations usually fall along two separate lines of thinking: one that
envisions an emotional Armageddon and another that foments eugenic reasoning. Whether the
perceived problem is in the neuropathways of the brain or in the genetic code, both objections
reflect a cynical outlook that doesn’t take into account the benefits of a relationship with the
common underpinning of a psychiatric diagnosis.

While I am firmly committed to my mission these criticisms do have some merit so I will
address them. There is in fact a genetic component to serious mental illness and it should be
taken into account. Such concerns should be discussed. There are many options for a committed
couple that wants children. In my mind, sabotaging the potential for a loving relationship based
on hypothetical percentages is not a good idea. The other criticism has significantly more merit.
The volatility inherent in managing a mental illness can cause problems when two people’s
minds are clouded. Just like any kind of relationship (“healthy” mind or not) it requires serious
work to negotiate complicated emotions. It is possible that certain mind disorders do not pair
very well. Keep in mind as well that the severity of mental illness covers a broad spectrum. A
schizophrenic just out of the hospital is probably not a good match for a lawyer managing her
bipolar quite well on stable meds. I find this idea that Nolongerlonely users can’t discern these
things independently underestimates their capacity to make adult decisions about their own
social lives.

The prevalence of stigma about mental illness is the number one motivator bringing
people to the site. Misunderstandings abound. From personal experience, in the general dating
pool my diagnosis always loomed heavily upon my mind. At what point would I reveal to the
other person that I have a psychiatric history and how would they respond. This anxiety of
disclosure is much less of a concern when that dating population is upfront about their mental
health status. It is a real comfort for my users. Many are giving romance a second chance after
having been scared away from the general dating pool.

There is also the shared sensitivity of those who have managed mental illness. Some
things are impossible to explain or describe to those who have not experienced them. As
someone with a gift for words, I still feel that even my closest relations are in the dark when it
comes to even a fundamental understanding of my experiences. While most of my users have
access to talk therapy, the unique benefits of peer support I think outweigh the traditional
approach. Nolongerlonely is not just a site for dating. Many members use the site as a forum for
emotional support. Socialization is a powerful tool. I am a firm believer that future progress
will come more from a robust peer movement than any advances in pharmacology.

Another criticism I’ve fielded repeatedly comes from the other end of things—those that
argue against restricting my audience. One is financial—why restrict your audience to 5-10% of
the entire dating pool? This one is easily quashed. I tell my “advisor” that if they want to fund a
multi-million dollar ad campaign to go up against Match and eHarmony I’m all ears. The niche
is what makes the site unique. It is what gives it value. The other argument I hear is that
restricting the population of users somehow propagates stigma by suggesting we are undesirable
to the broader community. I tell them Nolongerlonely is a tool in their arsenal to quash
emotional isolation but certainly not the only available to them. There is no harm to also
maintaining a presence on other mainstream dating sites.

In the end, online dating is not for everyone. I receive many enthusiastic testimonials
(including dozens of marriages) but there are many people who I am sure didn’t enjoy the
experience. What I usually tell wavering users is to give it a try. Nolongerlonely offers a two
week trial period free of charge so there is no pressure or commitment. If you decide perhaps
you are not ready for dating come back another time. We’ll still be here (I hope LOL).

Where I’m at…

So my last (first) blog post gave the barebones of my personal journey of recovery and
my evolving assessments of what principal ingredients provided the spark. I’m still learning the
“art” of blogging but feedback from others have stressed the need to understand and “reach” my
audience. The identity of my audience will evolve (comments are always welcome) as will my
ability to be open and vulnerable in my writing. What I think sets me apart is my personal story.
It is something I’ve kept closely guarded. For example, I went through many of my college
years floridly psychotic but did not tell anyone outside of my psychiatrist. Somehow I finished.
My ambition to have a “normal” life in my adult years led me to rigorously maintain secrets
from colleagues, acquaintances, friends even family. I prided myself in my ability to “fool”
everyone.

Despite my successes, looking back I would not recommend this route for others. I try
hard not to succumb to regret, as it serves no purpose, but for certain my quality of life over the
years would have been better if I opened up and allowed myself to be vulnerable. As my career
developed I began to flee the network of friends I had developed and began to substitute them
with those of accomplishment and no diagnosis. In a way it was a Faustian bargain. It felt like a
return to an older self but it intensified much of the internal pain. A large part of my daily
experience was now being quarantined. My ability to enjoy life was quite sporadic. In fact it
still is.

As I write this, certain admissions start to make me feel uncomfortable. In years past I
was mortified by the possibility of a prominent news source (New York Times in my fantasies)
writing up my website and “outing” me. Looking back I wish they had. I certainly would relish
the attention now. However back then I had conditioned myself that my illness reflected poorly
upon my character and it fostered a deep sense of shame. While I was quite brave to confront
and work very hard to overcome my challenges (there were many days where the workplace
crushed my spirit), I was way too concerned about the opinions of others. Sadly it was my self-
imposed stigma which impinged so much on my ability to enjoy life.
So despite wishing I had done some things differently, I am at a good position in life. It
feels good now to reflect and realize there are constructive uses of ruminating about how I got to
where I am today. The process of internalization is now mounted in reverse and I look forward
to finding ways of giving back and helping others. I am very fortunate. It is liberating to state
that

An ancillary benefit of this blog is to foment attention to my website
Nolongerlonely.com. From the beginning I have tried to portray the site as a welcoming
community that is not a face-less corporate being—that it was established and is being run by a
mental health consumer. As such I am reluctant to use terms such as CEO but I suppose that is
an accurate moniker.

So in the interests of transparency let me bring my bio up-to- date. As of mid-April I am
semi-retired. I have left my Library Director position at Berkeley College and have devoted my
attention to Nolongerlonely. I will be supplementing my solo work here with part-time hours at
local public libraries. Having spent the past three months in close contact with other
entrepreneurs at a tech incubator at Queens College I have learned a lot. One principal lesson is
that it is expensive to learn on the job! Having said that, changes are afoot. I will be outsourcing
a lot of my marketing with an expert and we will be analyzing the results to find the best way to
expand my audience. This should result in more sign-ups. Email marketing will be set into high
gear as a re-engagement campaign with existing but absent users should build our user database
and help our coffers. Google analytics will help me understand my users and increase the
number of conversions.

One of the lessons learned is that a tech startup is very difficult to do with a single
founder. My eyes are wide open and if I find the right person I will bring him/her aboard. I’ve
learned that a smaller piece of a larger pie is better than a large piece of a smaller pie. It would
be a great comfort to bring someone into the company who has had previous success and to have
that person to sit across the table from while hashing things out. Beyond that I will assess the
need for outside investors. I have been honing my elevator pitch and attending pitch contests.
Shark Tank watch out!

My bread crumbs…

It took me a while but I eventually bought in to the sick brain narrative.  It was expensive getting there.  My initial (and only) psych hospitalization was somehow paid for with money left over from my college fund.  We’re talking six figures—money dealing that would put Oliver North to shame.  My delusions were so ingrained that those seven weeks were one long joke–soon I’d be exonerated even celebrated as the truth would be revealed to all.  Each morning I dovetailed to the New York Times expecting to see something on the front page.  This was a month before Election Day 1992 and the revelations of my convoluted family history could sway the result.  I was living a Tom Clancy novel.  It was actually kind of fun.

The high didn’t last forever.  The first blow came soon after I escaped from the hospital.  I had miraculously made my way from my Rye, NY suburb to FBI field headquarters in lower Manhattan.  The assassins were coming and I had to get out.  When the patient investigator, after listening to my long rambling tale, suggest this as something to be handled by local law enforcement I was crestfallen.  He could not be dissuaded.  In a daze I wandered to Washington Square, downed a couple 40 ounce malt liquors and called the hospital for them to pick me up.

From there the story is much more mundane.  Realizing I wasn’t going back to college any time soon and would instead be titrated on a special anti-psychotic drug Clozapine I became despondent.  The drug was presented with much fanfare and I was whisked away to a quirky upstate halfway house.  Schizophrenia was not a new diagnosis for me but it now felt quite permanent.  My prognosis seemed quite dour.  Expectations were greatly diminished.

I was treated like cattle by the onsite psychiatrist.  Talk therapy was provided but it certainly wasn’t a priority.  I surrendered to the idea that my brain had a chemical imbalance which the Clozapine sought to correct.  I exhibited both forms of schizophrenia–positive symptoms (i.e., hallucinations and delusions) and negative symptoms (i.e., catatonic demeanor and social withdrawal).  Clozapine was touted as revolutionary in helping with the latter which had historically been harder to treat.  It’s a pretty major drug which requires regular blood tests (I still have them 25 years later) and which led to serious side effects ranging from sedation, metabolic syndrome and weight gain.  Eventually the active delusions diminished.  Instead I settled into a chronic state of lethargy, resignation and disappointment.  While I showed steady improvement, never needing further hospitalization, my state of mind remained altered and I didn’t enjoy life.  Dreams of childhood and adolescence fell by the wayside.  My social circle tightened around others in similar circumstance.  I was too embarrassed to show myself to old friends.

My diagnosis was qualified as Schizoaffective to allow for the mood component.  I accepted the idea that my brain had a chemical imbalance which the medicine (I was now also auditioning various SSRIs) sought to correct.  My social and vocational advancements were proof that my treatment was working and I should stay the course.  I resigned myself to the idea that I would take this medicine for life, not to do so would recall my disease.  In a way that was comforting.  It absolved me (also conveniently my parents) from blame in the matter.  The common analogy was that my situation was like that of a diabetic needing insulin.

This remained my mindset for well over a decade.  Slowly though I became sensitive to what I perceived to be hubris in psychiatry.  Unpleasant symptoms were routinely ascribed “to my illness”.  Negative reactions, I had at one time ballooned to over 250 pounds and consistently overslept, were par for the course and not indicative of an invasive or poisonous medicine.  No one could properly explain to me exactly the mechanism of psychiatric drugs because no one actually knows (literature always prefaces with “is thought to…”).  I began to ascribe my recovery more to hard work and rigorous self-exploration than the pills I was ingesting.

Reading Robert Whitaker’s “Anatomy of an Epidemic” was the true epiphany.  In it he provided a scholarly study of the limits (and perhaps detriments) of traditional psychiatry.  I didn’t rush out and flush my meds down the toilet but it got me thinking in a broader sense of my history and prognosis.  It was empowering.  I began to believe in a resilient brain and discovered other narratives like mine that seem to puncture the medication for life sentiment.

Another special moment came from reading Bessel van der Kolk’s “The Body Keeps the Score”.  Disparate painful memories of childhood began to coalesce and I acknowledged the damage inflicted of long ago trauma.  My vision of recovery has become more holistic and my attitude much more hopeful.  Emotional responses are not foreign and un-definable.  I feel a sense of community with people.  Most importantly it has made me reflective and thankful.  I don’t blame myself or others for my circumstance instead I seek understanding and feel motivated to help others.

Part of that sentiment led me to starting nolongerlonely.com.  My most recent self-discoveries have motivated me to devote my full attention to it.  This blog provides the breadcrumbs for my story.  I plan to use this space to amplify my new understandings and you will see that the concept of socialization and peer support will be central.  I hope you stay tuned.