Wednesday, August 15, 2007

Are You Zippy?

In honor of John Robison's 50th birthday, the upcoming publishing of his first book and memoir Look Me in the Eye, our long term friendship, and survival of adversity (and kids) - I wrote this piece.

Are you Zippy?

photo by Ian Adams

The value of having a really good ‘Aspergian’ friend when clinically depressed

I barely could get up each day, let alone smile, for about 3 years. Needless to say these were three years of living hell. Why John remained my friend was somewhat beyond me, yet he wasn’t affected, as others were, by my lingering depression.

He was steadfast and a bit curious.

When he would call up, as he did regularly, he would ask, “Are you Zippy today?”

Mostly I’d have to honestly answer,“No.”

Yet John would ask me out to dine at a casual or fancy local restaurant, offer me an opportunity to ride in one of his favorite luxury vehicles, or take me on a river jaunt in his boat.

I was grateful for these invitations as they at least got me out and gave me a break from having to make decisions for myself, my family, or home. I could feel cared for and protected. I never felt obligated to have to be other than whom I was, or emotionally where I was. I could hope that one of these outings might suddenly shift my neuro-chemical imbalance so I could again be ‘Zippy’.

John and I first met when he offered to take my daughter Mariel to the Big E with her best friend Danielle, who was also a good friend to his son Jack. I think they were about 8 or 9. I did not know of Jack’s more descriptive nickname- ‘Cubby’ - yet he seemed like a cool young kid and the three children had fun on the roller coasters and Ferris wheels of the fair. Danielle’s dad Mike and I got to go along too, and act like big kids.

I welcomed anything that might bring joy back into my life such as wind blowing my hair along with the wild screams and laughter of kids on the coaster. It didn’t work for the longer term, but did in the immediate moment. John eagerly captured this with his camera, so at least I could have a chance to enjoy it as a memory sparked by his clear and crisp images.

John was the official photographer for the fair and able to get us in free. Free was good as I was anxious with an extraordinary fear of financial devastation. When one can hardly make it into work, or out of bed, one doesn’t feel confident of making it to retirement. I believed I would not make it to age 50, and I feared for the future of my family.

Over several days we returned to West Springfield to eat, to ride, and hear music. John arranged it so that the kids could see the featured acts, and my daughter was drawn up on stage to delight in being serenaded in the spotlight.

I found myself growing more appreciative of John. Mike had been my friend for many years, and though we shared numerous close moments with our daughters, he was not nearly so accepting, generous, nor as easy and reliable to be around.

One thing I did notice, however, was that when Mike and I attempted to be funny - to crack jokes and share ironic insights - John seemed pretty deadpan in response. For me, humor, even attempts at it, seemed essential to my survival. Though I could not smile easily, I knew I should. My intellect told me so. And I wondered why John seemed so serious. He was not, after all, depressed, and he was not at all stupid.

“What was he?”

It was not until years later that we first talked about Asperger’s. I just accepted that John was a bit odd. But compared to the multitude of uncompassionate people I met, who avoided and were mean to me in my days of desperation (the ones who were insecure, weak, careless, self-centered, liars, or afraid), John was amazing. He was perfect. A perfect friend.

I found out about John and Asperger’s after he visited me at home to tell me about the best seller “Running with Scissors”. I had heard some buzz about the book on the radio and was curious as I knew that my less than fully functional background and, of course, present, seemed to pale against the early life of the author, Augustan Burroughs.

I wanted to hear stories of anyone that managed to survive adversity. I wanted to hear that maybe I could. I wanted to see if I could ‘feel’ anything in empathy.

I listened to John, realizing he was more animated and personal than I had ever experienced him, and that increased my curiosity. When he told me Augustan was his brother I knew I had to read the book, and as soon as possible I did.

I recall my jaw dropping as I tore through the text. I had had no clue about the strange scenario that surrounded the development of my friend. The John I had known seemed relatively ‘normal’, although he was somewhat affectless.

I wondered, “Did this book truthfully describe his background and family life?”

Though John was barely mentioned, the book referred to his travels on the road in the music scene, and that he was diagnosed with Asperger’s. A light bulb went on. (Still no smiles). I could not wait to talk more with him.

Maris, my sister’s daughter, my daughter’s cousin, was originally diagnosed with Asperger’s and eventually considered a high-functioning autistic child. I had learned a bit about Asperger’s and autism from my sister, research and reading, and from my direct experience. As a former psychology major I had a framework of developmental and abnormal psychology to strengthen my understanding.

I told John about Maris, who was an extremely sensitive child since birth, and also did not ‘get’ affect. She did at times laugh, often tickled by her own weird sense of humor expressed through bizarre sequences of words, imagery, or actions. She was very musical and extremely brilliant. Anything that caught her interest she would hyper-focus on and learn all there was to know about it; clarinets, water spouts, prop planes.

I reflected that John seemed to have great expertise in many areas, an encyclopedic knowledge of cars, audio effects, pyrotechnics, and was adept at working many machines. He seemed fairly confident and competent in business. He was analytical and matter-of-fact. But John’s comfort level in personal relationships was less. He had a few strange mannerisms, difficulty focusing on people’s faces and eyes, often a monotone vocal delivery, and habitual expressions.

Yes, the profile seemed to fit.

Our friendship shifted. We began to talk of the mind, its mysteries, and Asperger’s, autism, and depression. We began to share more about our backgrounds and find ways to compare the scenes and experiences of each other’s past and present toward clarifying our own states of mind or emotions to each other.

I still called on John to help me if my basement flooded or if my lawn needed a rescue raking or mowing. He and Jack, now known as ‘Cubby’, would come over with their machines and I would offer comradeship and conversation to my officially labeled ‘Aspergian’ friend. John would listen long to my tales of depression and drugs, and later men and dating, and ask many direct and innocent questions to try to gain a clue about a world – a web of people and emotions - that mostly eluded him.

I suppose I may have entertained him.

Jack and my daughter Mariel also continued a casual friendship, especially when Cubby transferred into her school.

But the bond between John and I grew stronger as we both learned more about what made us ‘odd’, outsiders to society because our behavior did not fit the norm or the preferred. He saw me through many trials of medication that made me ill, nauseous, anxious, and even suicidal. Although he did not seem to have the capacity to really ‘feel’ what I might be experiencing, John was indeed concerned.

He’d call, “Are you zippy today…yet?”

One day I finally got a boost from some medication I was prescribed. I had been about to give up, worn down by the hit-and-miss practice of psychiatrists. They threw scripts at me, with a few warnings of side effects, and could only make tentative guesses at what was wrong based on other patients and standard case studies. They had little data about my particular body/mind make-up to guide them.

Though better than the ‘Santa Claus’ Augustan wrote about, my last doctor was as ineffective in bringing me back to normalcy as ‘Santa’ was with John’s mother. Luckily I was a bit less ‘crazy’. With a strong will and lots of research I persevered in my own healing. I was able to consider professional suggestions and had a few friends who stood by me, gave me perspective, solace, and helped me practically - especially John.

Still after a short hospital stay resulting from a suicidal state triggered by a trial of Paxil, I was at my wits end. A doctor there suggested electro-convulsive therapy- shock therapy or Effexor XR, a slow release form. The SSRIs like Paxil, Zoloft, and Prozac, made me ill to the point of nausea and dehydration from vomiting. I’d get overwhelmed with anxiety, and had intense thoughts that death would be a relief, though I would not take my own.

There was no way I wished to undergo ECT and perhaps lose the little memory I seemed to retain throughout the depression. I did not want to tamper with my brain or have my body restrained, shocked, exhausted any more than it already was.

I had been looking into the possibility of a brain scan to try to get a deeper picture of the neuro-chemical workings of my mind, which was suggested by my sister in California. I was preparing to fund my own trip to a clinic near her. Armed with this knowledge, the thought (and hope) was that we could more carefully target medication and minimize the long trials and severe side effects.

But I decided to give meds one last shot. I did my research and knew Effexor also worked on norepinephrine as well as serotonin receptors.

Finally, on Effexor XR, even with an as-yet-to be-adjusted dose, I was able to once again feel……yes, ‘Zippy’.

In fact at first I was so ‘Zippy’ I could not sleep much. My mind raced with creative thoughts. Yet I was able to focus and function, once again, without feeling that an underwater monster was pulling at my feet and trying to drown me – at every moment.

John was there when I began to smile and laugh again, almost 3 years since my descent into depression. He may not have gotten the humor which provoked the smile or laugh, but he noted it and accepted me still.

As more years passed, we still went to dinner, rode in his cars (Mariel particularly liked the Mini-Cooper), and hung with Jack.

I helped him now with decisions during the building and decorating of his new Amherst home and writing drafts of his book. I answered questions he had about relating to his wife and Jack (his ‘Subjects’) and others. Now that I understood his social challenges I felt more comfortable accepting his help with any of my own issues.

We have remained friends. One day when Mari, John, and I were dining at the Amherst Brewery, one of our favorite quick hangs, he told us about his Southern heritage. During a moment of reflection over some strange recollection he burst into a broad grin and sort of a laugh.

“Woof,” he said.

John often said “Woof” when he seemed to run out of words or did not know what to say, but it was the smile and laugh that we noticed.

I realized how unique this moment was. Smiling and laughing myself, I reveled in the fact that we both could express and feel ‘Zippy’.


Ian Aleksander Adams said...

you should use that picture I took of you, the desaturated one instead of that old headshot with the circular border. that one has always looked so cheesy.

Polly Kahl said...

HI Alison, I came here from John's page. What a lovely tribute. Best wishes and I'll be back for more!

Tena said...

Your homage to John is very touching, as is your struggle with depression. You are extremely blessed to have a friend like John. Glad you both made it to fifty!

Amonly said...

Thanks for your comments. I do feel trul blessed and glad to still be here to read your comments. Feel free to share more!

Amonly said...

Hmm, years later I reread this post after reading Daphne Merkin's "A Journey Through Depression" in the Sunday Times. I should write more about my experience, especially the hospitalization and med trials- yet Daphne can make it oh so literary. Would my words be as well crafted? Could they be compelling enough for others to be curious, interested, understand, and have compassion?