Asperger's Diary

Life through the lens of Asperger's Syndrome.

Love, Identity and Disability

When we love, what exactly is it that we love?

Page and Robert Melton
http://www.washingtonpost.com/lifestyle/magazine/a-family-learns-the-true-meaning-of-the-vow-in-sickness-and-in-health/2011/11/0
Early this month, the Susan Baer of the Washington Post wrote a wrenching piece about the life of Page and Robert Melton. In 2003, Mr. Melton, a former WP reporter, experienced a stroke which resulted in an anoxic brain injury, and significant cognitive disabilities. Billed as an uplifting story, for me it brought up strong feelings in me which I am still struggling to sort through.

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The story has drawn a wide range of reactions, from the positive, to the very negative. As for me, by the end of the article, I was deeply disturbed and on the edge of tears. Why?

Having a brain based disability myself, I read such articles through a very different lens. Many neurotypical people viewed this article as inspirational because although Ms. Melton chose not to continue her marriage, she did not abandon her husband. But as a person who knows what it feels like to be rejected based on aspects of my neurology that I cannot change, it was very hard to be comfortable with this. Frankly, it hit me pretty hard.

I am reminded of my first forays into finding information on Asperger's and romantic relationships. At first I found very little. What I did find seemed to say that relationships such as mine simply couldn't exist. When I eventually did find resources that did acknowledge the reality of such relationships, it wasn't much better. Beyond the extreme generalizations and negativity, there was one overall message that was taken for granted: Those with Asperger's were simply not desirable as partners, at least not desirable as "normal" people. 

I can't help but see a shadow of this same mindset reflected in the article, and I struggle with it. Why is it so hard for many to love someone with cognitive differences? When we love someone, what exactly is it that we love? Is it their brain? What they do for us? What we feel in their presence? Or is there something deeper, something that remains unchanged in a human being no matter what they go through? What about what we call the soul? Does it exist?

As with many such things I read, all this brings to mind a memory — a person whose story changed me profoundly. I met him in my high school theater program. During one of our sessions, we all gathered in a circle, and our teacher facilitated a "getting to know you" exercise. Going around the circle, we were invited to tell the group something about us that was cool or unusual. I don't remember what I said, or what most of my other classmates said, but I do remember the response of one young man, who said: "I have an identical twin."

The revelation created quite a stir. The class was brimming with questions, which they fired at him quickly, one after another. Most of all, they wanted to know, "If you have a twin, why have we never seen him?" In the face of these questions, he seemed to get overwhelmed...stammering a bit, then finally answering, "Well, um, he goes to another school." As I watched, I felt a strong kinship with him, knowing how overwhelmed and tongue tied I could get in similar situations. But, my classmates reacted differently...they didn't see overwhelm, they saw deceit.

Suspicious of his story, they peppered him with questions: "IF you have a twin, WHY would he go to another school? It doesn't make sense." This was a question he was reticent to answer, but didn't seem to be able to gracefully deflect. I suspected there was something more going on beneath the surface, but I didn't know what.

The doubters were soon silenced when some days later, we had a guest in our classroom. One who was a mirror image of our classmate. Now they didn't know what to think. They posed the same question to the newcomer — who also sidestepped the question with a charming smile. It remained a mystery.

Not long after this my stepfather accepted a new job, and my parents decided to sell their house. One evening, the realtor whom they had hired to handle the sale came to the house. In a few moments of downtime, she started chatting with me. "So," she asked, "Where do you go to school?" I told her. "Oh...then you must know my son!" she exclaimed, mentioning him by name.

As it so happened, her son and my classmate were one and the same. Over the time my parents worked with her to sell the house, we gradually got to know her pretty well. Eventually, she would tell us the story of why her sons had been separated.

Car crash
My classmate, it seemed, had been in a terrible auto accident. This was something that I, not long past my own serious accident, could relate to very well. But, unlike me, who avoided serious head injury through a set of circumstances I still feel to be somewhat miraculous, my classmate didn't. As he recovered, it became clear that he was experiencing common long term challenges related to traumatic brain injury. There were changes in personality, attention, and cognition...in short, a lot of things were just harder for him, than they were prior to the accident.

Adjusting to an acquired disability like this is a complex process. It doesn't happen all at once, but often comes in stages. The severity, length, and definition of the stages can vary between individuals, and the type of disability...but in the end, it typically ends in acceptance. As with any transition, moving forward requires that you put the past behind you, recognize the reality of your new circumstances, and come to terms with the "new normal."

In this process, though, my classmate had a unique challenge: The fact that he was a twin. While many of those dealing with such disabilities have to deal with lingering comparisons to their past selves and abilities, for most people that means comparison with a memory — a memory that changes and fades. Eventually, the "now" becomes more current in peoples' memories than the past.

But, in my classmate's case, it wasn't so easy. Every day when he went to school, he was dealing not only with comparisons to the memory of what he used to be, but with comparisons to his brother. His brother who was a walking, talking mirror image of him — but who had retained all the abilities he had now lost. He wanted to be seen as the person he had become, not as a "broken" version of his previous self. But his brother's constant presence stood in the way of that.

Because of this, his family eventually made the difficult decision to separate the two of them. In a new school, they hoped, he could make a new start without all the baggage of the past. As his mother explained it to us, I understood it all too well. I know what it felt like to want to fit in, to be seen as "normal," just "one of the gang" without the constant focus on differences and deficits.

So, I didn't mention what I knew to my classmate...I didn't want to stand in the way of that feeling. But I never forgot him, or his story. And when I read the Meltons' story, he was foremost in my mind. How would he have felt reading this article? What message would it send to him, and what would be his takeaway? And what would his reaction be if he had read this back when I knew him — just when he was just setting out in life?

Sure, the nature of his injury was somewhat different from Mr. Melton's — less severe. He was still able to remember his identity, and function in the world, albeit in a somewhat altered way. Still, I can't help but compare. Where are the boundaries between someone like Mr. Melton and my classmate? How much impairment does it take before the world deems someone as "not marriage material"?

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RESOURCES ON MARRIAGE AND NEUROLOGICAL DISABILITY

  • Journeys with Autism -- The Perfect Answer
    "Why do you stay in the marriage? 

    An acquaintance recently asked my husband this question. He asked it not because my husband had expressed any unhappiness with our marriage, but because I have Asperger's.

    How do I begin to explain all the ways in which this question hurts?"
  • Brainline.org: How Brain Injury Affects Marriage
     
    "One couple in particular, that stands out for us, that we've worked with together is a couple that said to us, ‘One of the ways we're dealing with this is by taking a new picture, and so anytime we think about our future and what we imagined and we feel sad about what we lost and not being able to do the things we thought we'd do we take a new picture and we imagine what our new future is going to be like now.'"

Lynne Soraya is the nom de plume for a writer with Asperger's Syndrome.

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