Flavors of Desperation

Saturday I joined a gathering of people with chronic illnesses. While not my first time doing so, the group has only met thrice – I am a novice when it comes to such situations. Historically I tend to do badly when I attempt to join a group based on one of my identities: The blind people don’t get the sick people, the sick people don’t get the blind people, and the bisexuals understand nobody and are understood by nobody. Let’s not even throw facial differences into the mix. The proposed topic of how your illness positively impacted your life journey seemed to fit my overall philosophy, so I went.

Desperation. That room was full of desperation. People were so focused on getting better that they weren’t remembering to live in the interim. From my perspective, I wasn’t the healthiest person in that room, but I was probably the happiest with my current life.

It’s not that I have some magical ability or special power that keeps me happy in the face of the complexities of illness. I think it’s that somewhere along the way, long before chronic illness was a part of my reality, I stopped totally listening to what the world was teaching. A partial education in how people “should be,” the benchmarks of success, what’s appropriate, and what you need to be happy has actually been a benefit when it comes to living a reality outside the norm.

Even I struggle with issues of success, happiness, and feeling like a valuable member of the human race. I just have distance allowing me to see that what makes me feel bad is not within myself but coming from the larger world. Knowing that makes it not just easier to dismiss, but less miserable to feel.

By the end of Saturday’s meeting, my contentment was shattered. Something about watching people dedicated to fixing themselves in order to be happy wore at me. Instead of also wishing for health, I became despondent over being single because after realizing I was probably the happiest person in the room, it dawned upon me that I was the least likely to find a life partner. Ridiculous, full of self-pity, and some would say patently untrue, but I felt it. Strongly.

Over the past few days, I have come to know this is my weak area. I might not feel broken, I may not need health to find happiness, and I feel no need to fit any traditional roles, but I am firmly and unwaveringly convinced my chances of finding a life partner are lower than the average person. Moreover, lower far too often translates into not going to happen. Friends have tried to use logic and reason, pep talks, contradicting examples, and every other method under the sun to get me to see it otherwise, but I’m stuck. Totally stuck. I’m so stuck that I’m starting to annoy even myself.

I did have one useful realization: If I think it’s most likely that I’ll partner with a man, then maybe I should hang around heterosexuals more and queer folk less. At the moment, I’m eating, breathing and dreaming bisexuality as I put together a panel workshop. Perhaps my next endeavor should be more heterosexual. Then again, of my last three crushes, two came from the bi community, so maybe the focus should be on men who actually date women. Anyone know where to find those? So far they haven’t created a guide dog command, “Find a man.”

Getting My Mad On

For the past two weeks, I have been trying to avoid the terrifying thought that the last dose of anesthesia zapped the writing part of my brain. The mechanics were possible with words forming sentences and sentences becoming paragraphs, but the unnamable quality making words into more than the sum of their parts was beyond me. Fortunately, as the past tense indicates, I got my mojo back. In the middle of a concert.

I should probably thank the musician who caused me to lose my temper waking the writing part of my brain from its slumber, but I’m not sure it would have the desired results. “Time after time, I have heard you put down your looks and while I assumed you were probably making it seem worse than the reality, I concluded you were probably of average looks. Then my friend informed me that you are adorable. I sort of lost my temper which finally woke up the writing part of my brain that I thought had gone into a permanent coma. Thank you so much for helping me get it back.” Yeah, that would backfire.

On the surface, my anger seems simple to explain. This man puts himself down in order to get positive feedback from others. Immature, but he’s twenty-seven and male, so it’s understandable. The fact that he is making people feel sorry for him reinforcing our society’s obsession with appearance equally justifies my anger, but also doesn’t quite cover it.

No, I got my mad on because he seemingly hates his body more than I dislike mine with far less reason. Every day in a myriad of ways I am told that how I look is unacceptable. I invested and continue to invest a great deal of time and energy in counteracting that message. In the past year, circumstances have forced me to integrate loss of eyes and the advent of prosthetics into my body image and I can even see the light at the end of that tunnel. I work my backside off to have feelings about my body separate from what I’m told to think. The effort is completely worth it because most of the time I walk through life happy with myself.

Then there’s this adorable twenty-seven-year-old who referred to himself as ugly. How ungrateful and lazy bringing new meaning to the term ‘self-deprecating.’ I truly would like to shake some positive body image into him. Jump up and down until he understands what he has and starts valuing it.

Please don’t misunderstand. This isn’t about one of us having it ‘better’ or ‘worse’ than the other. Simply put, I am proof that you don’t have to accept societal beliefs about appearance. Why, then, is he doing it? For that matter, why does most of the human race do it?

Maybe I’m incredibly fortunate to have lived at the edge of socially acceptable appearance. It allowed me to clearly perceive the subjectivity of our standards of beauty and how they are imparted to us. Then again, there are tons of people who also inhabit that extreme edge and they pursue changing their appearance with single-minded determination. Perhaps the combination of blind and unusual looks offers the answer. Whatever the case, I am truly lucky to have found a way to not hate my body.

Back to the musician. What can I say to someone like him? Offering my own experience up as an example of “It can be different” would probably engender pity not elucidation. Telling him he’s adorable would simply re-enforce his behavior of putting himself down.

Guess I’m stuck listening to his put-downs and offering up prayers to whatever higher power is out there that he one day gets it, puts the sentiments into a song, and changes the world by playing it everywhere.


Because I had a minor medical procedure last Friday, I had a blog entry set aside for use. Today, I read it. Hate it. The concept is good, but it needs work. Rather than post something inferior, I’m going to wait.

Didn’t want anyone to think I fell off the face of the earth.

The Body Complicated

I am my body and my body is me, no more distinguishable as two “parts” than water’s components can be perceived as hydrogen and oxygen by the tongue. This body that is me, that I inhabit fully, is at the center of a multitude of complicated relationships. There is the body I dwell in and the distorted image reflected back to me from others as if viewed in a fun house mirror. There is the body I know and there is the construct that has seemingly constant medical issues. There is the body I occupy and the shape the symptoms of my illness outline. There is even this body I inhabit and the form revealed to me by the hands of a lover.

The friend of my body finds the strangers of image, construct, shape and form to be alien. Yet still they tangle together in my mind hard to distinguish from one another.

Sometimes even my fingers forget who is friend and who is foreign. They may slide over the same skin, but they sense a radically different typography. One is the familiar smooth skin over muscle and bone that contains strength, determination, passion, and playfulness. Depending on the circumstances, my fingertips will encounter something else. Sometimes it’s scars, asymmetry, and flab that compose an ugly, damaged image. Sometimes they feel that which is underneath the skin and constantly going awry. Sometimes they sense all the aches and pains, stiffness and tenderness of a sick shape. And sometimes they even discover the swells and valleys, softness, warmth, and sensitivity of a sensual form. And though one is friend and the rest alien, I mistake one for the other more often than even I know.

While it is clear that the reflected image, medicalized construct, and sickened shape are unwelcome in my head, you would be surprised at how often I do not welcome the sensuous form. It acts as a reminder that no eyes are looking upon it with desire, and no hands enjoying its contours. There is no wanting, no intimacy, and no affection. When this stranger comes to me, the loneliness that wells up pushes tears from my eyes and sorrow deep down into my soul.

Unlike the reflection, construct, or shape, I would make friend of this stranger if only it wasn’t a painful reminder of that which I do not have. In the moments when I think maybe, just maybe I can call it friend, something acts as a reminder that it’s not possible. At best, we are acquaintances having extraordinary trouble becoming closer. At worst, the companion I long for hurts me in a way unable to be soothed.