Ever Heard of a Tracheal Stenosis?

I hadn’t either until last week. My breathing problems since late 2008 became markedly worse after my eye removal surgery in February. Finally I was able to see a pulmonologist who immediately had a diagnosis. It took exactly one week to go from his tentative diagnosis to an operating room.

A tracheal stenosis is a narrowing of the trachea which can be idiopathic in causation, from accident, chemical exposure, or intubation. In my case, they don’t have a handle on the initial cause, but suspect intubation during my eye surgery exacerbating an existing stenosis making things go from bad to horrible. By the time of the surgery, I was breathing through a hole 3 millimeters in diameter.

I am home doing the couch and book thing while I recover. There’s no serious pain, but I do have no energy. Fighting for breath over the past few months has drained me thoroughly and probably been the reason I haven’t recovered from the eye surgery. I am taking some time to rest including a break from blogging until June 2nd.

Hopefully I’ll be back better than ever.

The Rest of the Story

Writing Is There Disablism in Dating? was an exercise in theory and reason, but it stirred up my feelings. At the time, I knew this other part of the story needed to be told, but tried avoiding it. Guess it’s time to stop.

Whenever I think about dating, my emotions are intense and attempts to find resolution fruitless. I wind up traveling deep mental ruts that go something like this:

I notice a couple happy in their coupledom and have just enough dating and relationship experience to know with total certainty that I’d be joyful as well. A moment of longing is followed by a mental sigh. I understand the reality of the world I inhabit and know I’m statistically far less likely than the average Jane to find my Wonderful Person. It hurts in a way I cannot explain to know that something which would bring me great joy is unlikely. Very unlikely.

My inner problem solver steps up to the plate. What are the obstacles? Well, most people my age are already in relationships. Can’t change that. People don’t seem to be into me. Am I doing something wrong? Not really. So why no interest from anybody? Nobody can see the attractiveness for the disability.

Because of the socially perpetuated myths and misconceptions of disability, I will be deprived of something I want. Whether the desire exists because of conditioning or biology, it is present within me. Why do I have to live in a world that makes getting it so hard?

I am left with a problem I cannot solve and a tangle of sorrow and anger. It is an all too familiar place. No matter the detours I contrive or potential solutions I employ, always here.

Even the seemingly innocent takes on frustrating proportions. Whenever somebody tells me I’m amazing, I think two things: “If I’m so amazing, why am I single?” and “Your low expectations of me are exactly why I won’t get what I want. It gives an experience I’ve always found unpleasant stronger teeth.

One of the ways I compensate for the lack of a life partner is to develop friendships with a degree of intimacy beyond what is typical. In this way, I at least have some of my needs met. Unfortunately, whenever such a friend finds their own significant other they rightly forge that connection with their love interest. Happy as I am for my friend, I do feel the loss.

I also try to meet my romantic needs with little mind tricks. Whenever I encounter someone who tweaks my romantic curiosity, my inner voice launches its offensive. “Jen, there’s probably an other half or you’re not their type. Besides, dating generates drama by the boat load. You don’t need the stress. It’s bad for your immune system.” With such words I try to shunt the person into the category of unattainable crush. They can take the central role in daydreams and fantasies because, at least in theory, I don’t attach hope to any of it. I can enjoy the fun energy of a crush without getting hurt. Theoretically.

Yet at the end of the day, I am left by myself and wanting it to be otherwise. There is a kind of sorrow knowing I have no real control over the situation. There is an anger in knowing others have a far greater influence over my destiny in this regard. You can’t make somebody love you. You can’t make somebody find you desirable You can just live your life and hope you beat the odds. It’s not enough to truly comfort. It’s not enough to fill the person-shaped space in your life.


I just RSVPed no to my 20th high school reunion. Any of my reasons in and of themselves are enough to decline the invitation, but I still feel sad about it. Torn, actually.

Since my eye removal, my chronic illness has been kicking my butt thoroughly and unceasingly. Traveling takes tons of energy and under the best of circumstances, I end up exhausted by the end of my trip. Given that my body is not doing great right now, I can’t take the risk of making things worse. I can’t handle worse.

Do you know how much it annoys me that, yet again, my chronic illness is limiting what I do? It’s one thing if I have to miss a musician who performs monthly or even a party with friends I can find other ways to see. When it’s your 20th reunion, there’s no way to do that next month or arrange an alternative gathering. I’m just going to miss it. Period. Maybe I’ll make the next one in ten years isn’t comforting.

Before I had to make the difficult decision that health concerns had to dictate my choice, I was struggling to decide whether or not I wanted to attend. On the one hand, I would like to reconnect with people from my past satisfying my natural curiosity about how they each have changed over the years. A significant portion of those who stood with me on graduation day also came in with their parents on our first day of preschool. We learned our abc’s together, collaborated on projects, worked on the high school paper side by side, debated each other in Forensics, and grew up together. With only a class of about one hundred students, we have a bond forged from shared experience and that connection draws me toward Upstate New York this Memorial Day weekend.

On the other hand, school was hard for me. I started kindergarten in the fall of 1977 which was the first year federal law required schools to allow disabled kids to attend regular classes if their parents so chose. And, well, my parents so chose. Adamantly. Actually, they had to fight for it to happen. This meant the school was not experienced with having a visibly disabled child, my classmates were not used to visible physical difference, and parents were not equipped to handle it either. Disability was a shameful thing back then and nobody talked about it directly. AS I look back on it, I can see exactly why school was so hard for me. I have a lot of empathy for my classmates as well because they were thrown into a situation without anyone providing explanations or support. By the time we were all old enough to talk about it, there were years of silence that tied our tongues.

I want to make something clear. With the notable exception of 2 kids in junior high, I was not actively teased or ridiculed. My problems stemmed from not being included. My friends were few and my socializing for the most part limited to school activities. What lack of understanding created in preschool was magnified by the time we dawned our caps and gowns. Add into the mix my horrible self-image shaped by reconstructive surgery experiences and the snowball effect of a lack of social skills and you get a formula for isolation and benevolent ignoring.

Today, I still have problems in large groups and quietly sitting by myself is commonplace at parties. Rarely do I feel as though I belong in a group. My difference, and people’s lack of understanding of it, creates barriers few wish to climb.

In light of past and present experiences, I am not certain what reunion would be like. I have had a rather unsettling six months and my emotions are a bit tattered. If I went to my reunion and wound up sitting by myself, I’d be pretty upset. Okay, really upset. I realize the reverse could just as easily happen, but the uncertainty makes me hesitant to take the risk. I’m not equipped to deal with some of the possible outcomes.

Did I mention that everyone I graduated with was used to me being able to see some and now I’m totally blind? Oh, yeah, and there’s the little matter of a chronic illness, a prosthetic eye I have yet to pick up from the ocularist, and the fact that I’d be attending stag while most people are bringing spouses. It was a daunting prospect to consider when I thought I would be feeling more or less myself. Right now, with my body struggling to keep it together, I can’t even imagine it.

Yet I am saddened to the point of tears over missing my reunion. The part of me that never avoids something out of fear is throwing a prolonged temper tantrum. I think this all boils down to a situation where all solutions lack the essential component of making me happy. Oh well. May this be my worst problem in 2010.

Is There Disablism in Dating?

Some women like to date effeminate men, other females are attracted to butch women, and everyone knows about tall males who gravitate toward tiny women. Preferences based on hair color, body shape, and personality type are the nuts and bolts of individual attraction and romantic partnering. Can anything based on such subjectivity involve discrimination? Do societal beliefs about disability impact the most personal of choices? Based on my personal experience, definitely.

My evidence comes in the form of the commonalities shared by all those I have known to be attracted to me throughout my lifetime. In each instance, the individual had reached maturity without acquiring all the beliefs mainstream society attempts to instill in us. Details illustrate my point best: the first two were both blind, the next string were all raised by single mothers who tended toward the unconventional, a few were raised in an atmosphere of abuse or mental illness, a couple didn’t fit into accepted standards of beauty, and several had learned to reject societal beliefs as they worked through their own sexual identity issues. Male or female, each lacked the subconscious tendency to place me in the same ‘don’t date’ category occupied by their siblings, parents, cousins, and anyone of a gender they do not find desirable.

There is no simple phrase to describe this propensity, but as they say “I know it when I see it.” It isn’t that these individuals missed the class about how one should view disabled people for a majority of them had other disablist attitudes when we first met. Neither did they consciously decide to see those with disabilities as potential dates. Something in the way they were socialized made their subconscious consider me in a different way.

There are a few ways this lack of acculturation manifests itself. Most people lump someone like me into the same category as small children and little old ladies — those for whom sexual attraction is not even considered. This is not the case for those possessing the Unnamable Trait.

Such people have also avoided internalizing societal standards of beauty as their criteria to judge attraction. In this way, my scars, asymmetrical face, and odd eyes are not necessarily detractors from my other charms.

A person must also be missing another piece of socialization that relates to seeing me as a potential date or mate. Society seems to believe that I will be dependent on any future partner in a way that is both onerous and unfair. I am a black hole of neediness with no valuable contributions of my own. Anyone who would consider me in a romantic role must either not have this perception of disability or not care in the first place.

Because the application of all these standards and beliefs happens in the cobwebby back of our minds that our consciousness does not monitor, I am out of the category of datable before the individual even considers the issue. It is not a deliberate decision which makes it the most insidious and destructive kind of discrimination.

Over the years, I have been told that not dating a disabled person is a matter of personal preference which supposedly removes any blame from the equation for nobody can reasonably argue individual tastes should be this or that. To me, it is a more fundamental issue about what we are taught to like and want. the demarcation between personal preference and socially instilled standard is more an vague concept than concrete juncture, but that does not negate the existence of the distinction.

Don’t find my curly hair and small frame attractive? Fine by me. Don’t even consider me as a person to date? That’s a problem with its routes firmly embedded in disablism.

For my emotional reaction to this reality, read Rest of the Story.

This entry was written for Blogging Against Disablism Day May 1st 2010