Happy Blogiversary!

Four years. I've been doing this for four years. Though I'd like to say I've been a dedicated and consistent blogger, that is definitely not true. It this blog were to be represented by a geometric shape, it would have 3 sides of about equal length to illustrate the first 3 years, then a truncated line on the fourth, making it a trapezoid. Thanks to my readers for sticking with me throughout the insanity. I don't promise for sanity to suddenly blossom forth, but I do promise to share every last bit of the insanity. Look at it as a car crash you are not only allowed to gawk at but in fact encouraged to ogle.

Grated Cheese

No, I'm not going to make some esoteric comparison between grated cheese and some aspect of disability. This is simply a story about grated cheese. To demonstrate that my stressed-out state heads more in the direction of depression than anxiety, I told my psychiatrist (not FabTherapist) about the following event: Getting ready to make an omelet, I went to the refrigerator to fetch the sautéed vegetables I had, the already grated cheddar and other useful ingredients. The Ziploc bag of cheese was not where I'd left it. It wasn't next to where I had left it. It wasn't anywhere that I looked. So, I sat down on the floor before the open fridge and sobbed. Inconsolably. My psychiatrist said, "Well, that's about your disability..." Um, until that very moment, I hadn't thought about it in those terms. I was just a person who couldn't find something and had a very intense, dramatic response. Blindness had nothing to do with it. The thought, "If I could see, I could find the stupid cheese," never crossed my mind. The psychiatrist, though, went there immediately. I find that fascinating.

Magic Words

About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant -- seemed to increase my social connections or generate more emotional intimacy in my life. Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He's made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I'm disabled, he not only believes me but understands why it happens. That's valuable in a way words cannot express. We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from "Blind, incapable, weird looking person" to "Smart, funny, intelligent woman." His argument is that people meet someone like me and suddenly don't know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am. I believe words have power. They don't have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don't take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process. Okay, there is something that has the power to derail things – shock. It's why some women with disabilities dress provocatively -- to shock potential dates out of the "not sexual" mindset. What would I need to do in order to shock people? Would that be in line with my personality? "Yes, I'm blind. Be careful. You don't want that to cause you to underestimate me. That would be a bad idea." The last sentence would be delivered with a slow smile. Not even sure I'm capable of a slow smile on purpose let alone uttering those words. If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It's not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it. Besides, if I noticeably aid people in coping with their discomfort, I've set a precedent. "You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too." Do I want to establish such a pattern? Yet, inaction will not change anything. Principles are great, but they don't make you feel loved and valued. Besides, women have needs. And hormones. and needs that go beyond hormones.

Reason's Vanquisher

In excruciating detail, I can create a voluminous list of all the ways it is communicated to me that I am of less value because I am disabled. I can then offer explanations and arguments to counteract each item. My skills are sufficient to convince you that I have worth. Now if it would only work on myself. Reason is a wonderful tool that is not adequate to the challenge of conquering the emotions of irrelevance and devaluation that currently rule my insides. My reason lacks the tensile strength to overcome the indomitable force these negative thoughts and emotions wield. The depression I'm experiencing because of current life stress and mental health issues definitely saps reason's strength. It does not, however, generate the need for reason to be so powerful. the might reason would need to surmount the negativity is defined by the power of that negativity. What is responsible for negativity's capacity to overpower reason? Society in general and the individuals that act out its beliefs in particular. The thoughts and feelings an individual has about disability informs their actions and those actions transmit those beliefs to people with disabilities. Complimenting a mundane task demonstrates the lower expectations used to judge the person with a disability. Refusal to accept a "No thanks" to an offer of help illustrates devaluation of the disabled person's judgment. Even running up from behind to hold a door for a person with a disability conveys the assumption that the person was unable to do it themselves. Whether it is meant or not, whether it is intentional or not and whether the intricacies are understood or not, behavior communicates beliefs and those beliefs have power. A lot of power. Counteracting them takes a significant and constant force of will. It is a battle people with disabilities engage in each and every day. It is a war without an end in sight where victory is never possible because the "enemy" has an endless supply of assets. There are a lot of battles I'm currently fighting and they are consuming vast resources. I have nothing left to wage war against the societal devaluation that comes at me without end. Words and deeds matter. Take care that you are not unintentionally contributing to the strength of the negativity people with disabilities must beat back each and every day. And, if you need self-interest as motivation, remember that non-disabled people become disabled each and every day. The negativity you put out there might turn on you down the road. Do you want to battle it?

What Does It Take?

I'm convinced there's some unknowable and Mysterious Act that if I only discover and do, I'll get the support I need. Telling people I'm not alright hasn't worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn't elicit a single expression of concern. I'm beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, "What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?" What ever happened to unselfish compassion? Loving someone enough to do what they need even if it's inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I'm not talking about a one-shot deal here. I'm talking about consistently over a period of time being there for someone *because someone has to*. Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That's why people have a collection of friends, not just one. As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn't look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention. I don't want attention. I want support. They are not the same thing. If they were, then I'd be thrilled when people pour on the praise for my mundane "achievements." Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous. Instead, when I seek support, I get things like: "Jen, I can't even imagine dealing with what you deal with, so I don't know what to say to you." How about this: "I can tell you are truly upset and hurting. What can I do to support you while you deal with it?" Now was that so hard? "Jen, you are so inspiring. How you deal with what you deal with amazes me." Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful. "Jen, I can't watch you be so negative. It's too painful to me." Now the other person's pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible? "Jen, I know it will be alright." Great. Meanwhile, I'm in pain, but it has been dismissed as unimportant because it won't last forever. By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I'm fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from feeling into action?

When There Are Words

It's odd how having words to describe a situation changes how you relate to it. The mess going on inside of me hasn't actually morphed into something that is comprehensible. Having words, especially ones I can share with others, feels like the same mess is encompassed by some sort of boundary in which it resides without spilling over. I've already used many, many words to describe the portion of the mess associated with my feelings of isolation and lack of human connection. I now have a way to describe the other portion related to my Post Traumatic Stress Disorder (PTSD) and described in recent entries. I experienced childhood medical trauma that led to adult onset of PTSD. With therapy, I was able to manage the symptoms and make inroads into recovery. For me surgery of any kind bares enough similarity to my original traumatizing experiences that my brain tended to react as if it was trauma. Over a two and a half year period, I underwent seven surgical procedures and with each the PTSD symptoms were less – a net gain in PTSD recovery. Then, I was traumatized by events surrounding a surgical procedure. At the time, I did not respond significantly to the trauma aspect, instead suppressing much of the emotional response. With yet another surgical procedure on the immediate horizon, there has been a resurgence in PTSD symptoms including nightmares and triggering of flashbacks and body memories. Words. All neat and clean. I'm slightly worried that my ability to convey them in a calm manner is in fact me further suppressing my emotions and that what feels like containment is in actuality minimization of the real trauma I experienced. Guess we will find out.

A Tale of Two Extremes

It was the best of times. It was the worst of times. Or, well, at least a striking dichotomization of the medical profession. In September 2011 to deal with the ongoing saga of my tracheal stenosis is, I had minor surgery. A procedure with which I am familiar, I still somehow experienced a vast amount of related stress. In fact, a surprising resurgence of my PTSD caused me to rethink a prior conclusion that it’s under control. Then we had a power outage that pushed the procedure date back five days, so by the time the event arrived, I was a bit overwhelmed. The first speed bump in the day came when I was told the gastroenterology folks concluded they needed to do a procedure on a different day to assess how my stomach might be contributing to my stenosis, potentially requiring some sedation. Overwhelmed as I was, life became entirely black and white where probably meant would and since anything between fully alert and fully knocked out is terrifying for me, the thought of the whole thing unglued me. There are some things you might not consider unless you’ve been a blind person in multiple medical situations. Typically, medical professionals do not know how to keep you informed of events around you. Extreme amounts of focus to track events from the data you can gather help, but any kind of sedation destroys essential concentration and memory leaving you wondering what’s happening as you fade in and out. In case it’s not obvious, that kind of disorientation plays badly with PTSD and is why I either have no drugs or get totally knocked out. You also cannot be certain of privacy, who has entered your designated space, or where your nurse went. Therefore, when I was told about the GI decision, I couldn’t curl up into a Miserable Ball of Jen. With hindsight, I know that was for the best, but at the time I didn’t have such clarity. Then the pendulum swung to the opposite apex of it’s arc as I went into the O.R. Unlike other times, I ditched stoicism and made my mental state clear. Everyone, and the room was populated with people I knew, was great. They did two things exactly right: casually kept me aware of what they were doing and engaged in distracting conversation. It was fine. I was fine. Never thought I’d experience that. Waking in recovery, I needed oxygen. Without a nasal airway, a mask is the only option. It’s also the most upsetting medical thing I can imagine. But, wait, the Anesthesiology Nurse had a flash of brilliance when she cut a whole in a Styrofoam cup and I used that like a funnel to direct the oxygen at my face. Personally, I’m nominating her for sainthood. Soon, though, I was smacked down to earth as I listened to the plight of my neighbor. As he came to consciousness, a breathing treatment was being administered. Unable to clearly speak, he still had questions. As someone who wakes up with a few of her own, I could empathize with his situation. I guess Recovery Nurse couldn’t because she politely then not so politely ordered him not to speak. There was no effort made to communicate in another way -- no pen and paper offered, no yes and no questions asked, and no reassuring words to explain how his surgery went. Nothing. From experience, I know how to gesture for pen and paper. I also (thankfully) can write without looking. In his shoes, I could have gotten what I needed to feel safe. Most people do not have my vast experience or coherence upon regaining consciousness. In this man’s Johnny, I would have been utterly petrified. I’m starting to wonder if my experiences with the institution of medicine as a blind person is simply the result of a continuation of cluelessness. It’s not so much that they know what to do with non-disabled folks, but fall short when it comes to blind people. They just don't know what to do with anyone. The notable exception Is obviously the Pulmonology folks and Anesthesia Saint who apparently were given empathy and clue shots along with their new employee orientation. People Aren't Broken

Believe Maybe

A couple of weeks ago, I read Frank Deford's "An American Summer" which tells the story of Christy, a fourteen-year-old boy who moves to Baltimore the summer of 1954. Almost immediately he meets Cathryn, a twenty-three-year-old who contracted polio six years ago and now lives in an iron lung. It is an unlikely connection that leads to an extraordinary relationship. At one point, Cathryn is trying to convince Christy to do something he doesn't believe is possible. She asks, "Can you believe maybe?" The distinction she makes between what we believe and what we believe maybe is effort. If I believe maybe there's a God, then I still have a question to answer and thus work to do. Believing there is a God pretty much settles the matter. I have been struggling with the concept of hope for quite some time. It first became an issue when I realized hoping I'd get healthy was causing me to live for tomorrow and not enjoy today. Then hope got all tangled up with the lack of dating in my life. People kept telling me that if I didn't have hope that I'd meet someone, then I never would. I argued hoping for something that was statistically unlikely was the road to insanity. After that, my life began to completely come apart at the seams and I was devoid of hope that it would get better. Our hearts are designated the home of our emotions. Over the past four years, I've learned much about following mine and so far it hasn't caused me to do something I regret. In fact, my regrets tend to stem from the times when I don't or where circumstances won't allow me to listen to what it says. My heart was devoid of hope. It contained wishes, dreams and desires without expectation to tether them to reality. I think hearts learn, shaped by the negative and positive re-enforcement of life experience. My heart was taught not to hope because nothing good ever came from it and many let downs happened. What has hope done for me lately? Caused oceans of tears. So, I'm done with the idea of hope for now. We're on a relationship break. in its place, I'm entertaining the idea of believing maybe. It seems far more suited to me for it allows acknowledgment of things that feel unlikely while not summarily dismissing the possibility entirely. It allows for effort, but it doesn't have the black hole effect of trying and trying and trying and then watching all your trying vanish into some unreachable place with nothing to show for it. Instead, the trying is tempered by knowing it might be for naught or it might work. When I think, "I believe maybe this mess my life has become can be fixed," I do not hear from my heart, "Bullshit." I hear an echoing "Maybe?" Blog moving. Bookmark or otherwise get yourself to People Aren't Broken I mean it. :)

Lackadaisical Me?

If you are doing therapy "right," the work of it doesn't solely happen in the fifty minutes you sit in an armchair and spill your guts. To encourage forward momentum, some practitioners assign homework. Mine has not taken this step, yet I seem to be an entity that once in motion continues. The reason I sought out a professional was my utter unhappiness with my life, specifically the lack of emotional intimacy, the absence of a collection of people who support me through the rough patches and resilience within myself to make it through hard times. I felt alone, drained and completely unable to figure out how to fix it. I lay the blame for the first to on the doorstep of a society that perpetuates untrue beliefs about disability that form the burier between me and other people. I sought a professional to help me decide if I had to accept that or if I could change it. Somehow. I wasn't optimistic. Slightly over two weeks ago, I had a painful conversation with a friend that resulted in a mutual decision to be less in each other's lives. It left me with one local friend who I can count upon no matter what. I thought I'd be crushed by this fact, but I've been oddly curious. I want to know what happens next. It also appears to be contributing to my growing feeling that I must clear out my life in order to move forward. Anything that isn't working is vulnerable to being eighty-sixed from my universe. And when I follow that urge, I feel good about the consequences. At least the immediate consequences. I have serious concerns that I will resolve what I need to in therapy and look up to find my life is gone making me more alone and isolated. But if therapy works, won't I have replaced the things that aren't serving me well with things that are? This clearing of the decks is a way to make the space and free up the energy to build something better, stronger and fulfilling, right? Right? The weirdest thing has happened. I no longer can even write a sentence about all this that contemplates failure. "When trying to build something better fails" literally feels like a lie. I don't think it's a healthy, optimistic perspective so much as faith in a non-disabled, never-treated-a-disabled-person therapist I've found. That's just unfathomable. And possibly a very bad idea. Oh well. And that's even stranger. I actually don't care if I'm making a mistake because it doesn't feel like a mistake. It feels like I'm a combination of an adventurer and mad scientist. "Let's see the consequences of these actions and what adventures they bring." What is going on with me? Anyone? Note: The blog is moving! People Aren't Broken

Brutal Honesty

Sometimes twelve days on a lake with your family and guide dog who suddenly acquired gills is exactly what you need to refocus. I left warn out from Pride and wondering how I should change my life. without consciously even thinking about it, I came home knowing what to do. My subconscious is so smart. I need to come clean about why this blog has been so silent. It began as a series of infections, then the habit of not writing took over, or so I thought. In actuality, I was avoiding emotional "stuff." Writing this blog with the frank honesty I want means digging in my feelings and uncovering what is underneath. Exposing buried emotional issues to the light of day can be hard and is definitely always intense. Since I was avoiding anything not immediately obvious on the surface, I steered clear of a writing process that would force me to examine things. When I eventually realized this fact, I made a conscious choice to continue not writing. My avoidance was in fact a smart decision on the part of my subconscious. The emotional issues are still there, but I have unearthed them, cleaned them off, sorted them into piles and assembled the fragments into a picture. There is a lack of emotional intimacy in my life that doesn't work for me. At all. I can accept many of the ways my life is directly effected by disability – unemployed, limited income, lack of access to information and even having to ask for help. As I've mentioned before, I have a far harder time with the ways disability indirectly impacts my life based on how the world reacts – fewer friends, limited dating, people's ignorant behavior and lack of respect. They all boil down to lack of emotional intimacy. If you think about it, the direct consequences of my disabilities are things I can figure out, like fining meaningful things to do that take the place of paid work. How do you change the amount of emotional intimacy you need? And how do you increase the amount in your life when you aren't the cause of the problem? I used to think I needed to change my behavior or attitude or mannerisms or deodorant or something. At least in this area, I swallowed the idea that disability was the responsibility of the disabled. I was required to do whatever was necessary to make others comfortable and that would make it all better. I had to crack the jokes, not get angry about being treated as less than, educate, explain and accept with a smile whatever I had to. In this way, I would make others comfortable with me and they would want to be in my life. In other words, if I was nice enough, things would change. And, if they didn't improve, I was obviously not being nice enough. My effort and attitude would fix everything. Um, no. I have come to realize that how others react to my disabilities is not based on something I did. It's about them. My only responsibility is to behave like a civil adult using the same measurements non-disabled people apply to themselves. Who, after all, would expect a non-disabled person to smile sweetly and thank the cashier who just handed your change to the person with you? Still, I was left with a big problem: how do I deal with my need for emotional intimacy not being met? Good question. No answers. While working my way through all of this, I couldn't write this blog without making my abject misery worse. Now I can at least write about it. Progress.

Blog Cubed

[Note: Apparently the new blogger interface and I have issues and as a result, this was not published on July 1st which was my intent. Ooops.] Last year in my anniversary post I wrote: do blogs have “terrible twos”? Guess we’re going to find out. We now have our answer that yes, in deed, this particular blog endured the terrible twos characterized by lack of entries caused by me being flaky. I could promise to be more dedicated especially since public proclamations like that increase the chance of the thing actually happening. but, well, I'm not really sure why I haven't been posting meaning a solution is out of reach. And then there's my anger. Recently I have been getting in touch with my rage at the world. I suspect the next year of this blog is going to be..... interesting. I'll leave you with a question: What's problematic about name tags and online groups that require pictures to gain and maintain access?

With Water, Rudder and Pilot

It's strange how sometimes it literally feels like a switch is flipped inside your head and everything changes. You were just passively sitting there, taking in the world, when between one breath and the next it's all different. This happened a couple of days after I wrote Waterless, Rudderless, Pilotless Me The factor changing everything was A PLAN. Funny how that makes it all easier on someone like me. Actually, I've come to realize it's not all that astonishing that plans make someone like me feel better. A large part of my life has been without parameters – I don't know how much energy I will have each day, I don't know what barriers to access I will encounter, and I don't know what my body will do next. Most people have at least the illusion that these things will remain more or less constant. I think maybe that's one of the often unacknowledged differences between non-disabled and disabled people – the illusion of constancy versus the hard reality of the unknown. Non-disabled people have come to count on a world that works in certain ways because by in large it has done so in the past. They wake up with about the same amount of energy and they can accomplish things without crazy obstacles being thrown in their paths. I refer to it as an illusion because people get the flu, cars get flat tires, people get laid off, bones get broken, houses flood, stores run out of diapers, and total chaos is entirely possible. It's just not likely and people tend to count upon that and learn to cope when it's not the case. I cannot move through the world playing the odds that it will be smooth sailing because it's so often not. I'm more likely to have wrenches thrown in the works and need to be prepared to handle such eventualities. My reality is unpredictability and my best coping strategy is preparedness. I guess it's the difference between walking on a tight rope knowing a net will catch you versus walking on it not knowing if there is a net. Nothing in your skill level changes, but the difference is huge. My doctor laid out the steps for sorting everything out. Nothing is even infinitesimally more certain, but knowing the part somehow makes it easier. I've been accused of being a control freak. and, to some extent, wanting to be in control is a feature of my personality. However, how much lack of control do I live with on average? Wouldn't that tend to make me want to be able to control what I can? To assign random numbers to the situation, I have maybe 30% ability to predict events in my life. A non-disabled person might have more like 55% ability to foresee the future. So, wouldn't I be prone to trying to make my number closer to that of a non-disabled person? Am I a control freak or just a person wanting the security of knowing whether or not there's a safety net?

Waterless, Rudderless, Pilotless Me

Circumstances are unfolding in my life and I find myself without a frame of reference. The voice inside my head that can predict how a given thing will impact my life, from energy it will consume to amount of time needed to process, is without words. The oddest part is that it took me literally more than two weeks to realize this. For the past two-and-a-half years, medical drama has been a fact of my life. It took two of those years for me to stop denying that reality. Now it looks like the cause of my tracheal stenosis is known – my esophagus muscles and my stomach – and that needs to be fixed before my trachea can be addressed. The most viable solution involves surgery just given governmental approval. Then I'll have to have surgery on my trachea to remove the damaged part. It's not a common surgery and requires five days of hospitalization to make sure the sewed together ends don't (Yikes!) come apart. Under the best of circumstances, I do not deal well with medical matters. These strike me as not the best of circumstances. Lately I find myself reading fluffy novels, watching bad television, taking my dog for work walks, going to yoga, and sometimes trying to tackle one of my volunteer things. Not a lot of volunteer stuff is happening. I'm sort of unable to drag myself away from the books and TV. Heck, I'll even simply sit there. It's like there's nothing left in me for anything requiring my soul. I've been beating myself up about this for a couple of weeks. "Get off your butt and DO SOMETHING!" my brain screams. It falls on deaf ears. "Why are you just sitting there?" gets no response. This isn't exactly depression, though that would be understandable. It isn't exactly escapism, either. It's as if my inner batteries have been drained past empty and I'm trying to recharge them with the weakest of power sources. today it came to me: I don't actually know how to handle this. I am a fish out of water, a boat without a rudder, a plane without a pilot. I've decided one I hope useful thing. I get to read books, watch TV, and even sit there. I am allowed to do it until I'm so bored that I do something just to shake things up. My commitments can wait. I'm going through something hard. Maybe grace under this pressure is achieved by not doing things that increase my stress. An, yeah, I wrote that. Astonishingly, I even think I believe it.

Trade-Offs

I'm certain you are familiar with having to balance work, family, and social obligations, sometimes having to sacrifice one for the benefit of another. In my life, these trade-offs can be frustrating both because there are no good choices and outsiders do not comprehend the situation.
I have a small yard that has been fenced so my dog can go relieve herself without me needing to accompany her. This is a way to save a little bit of energy. A couple of times a week, someone comes along and scoops up all the solid waste and disposes of it. While not ideal in that odiferous items are left to perfume the air that other residents of my apartment complex must inhale as they pass, given my circumstances, it is the best I can do.
Should I be doing better with my guide dog? Yes. Blindness does not mean I cannot scoop after my animal. (In San Diego, I am exempt from having to do so by local ordinance, but that has little baring on whether or not a blind person has the capacity.) If I had typical health, I'd be ashamed of myself for leaving her droppings to intrude upon others.
My onsite property manager is not pleased with me. My scooper was on vacation and I let dog droppings sit for about six days. There was a mini, excuse the pun, stink over it because of the "smell" and in my opinion, because I got him in trouble. The multitude of cats living in my complex relieve themselves wherever they wish and smokers fill the air with toxic clouds without sanction. I, however, can't leave some droppings for less than a week.
I know I should be doing better. I wish I could do better. An internal debate rages that goes something like this:
"Jen, can't you just take her out on a leash four times a day?"
"Sure, but I'd have to give up something else. What should I sacrifice?"
"Don't go out with friends. Give up one of your discussion groups. Stop some of your exercising. You have choices."
"Those all contribute to my sanity or my physical health. If my life is reduced to what I should do, I'm pretty sure I wouldn't want to be living that life."
"You are a drama queen."
"Yeah, probably."
This is when I usually decide I'm pretty selfish and at its core, my choice to leave poop to scent the air so I can do things that make me happy is self-centered. Still, I cannot bring myself to handle the situation in any other way.
Situations such as this arise frequently leaving me feeling like I'm failing not living up to some internal standard of what it means to be a "good" person. Apparently, good people put all responsibilities ahead of everything else. Apparently "good" people bring new meaning to the word selfless.
I fail at being a girl because I don't engage in typical female behavior: I avoid hairspray, refused to wear lipstick even for my sister's wedding, think gender roles were made to be broken, and wouldn't know lady-like behavior if it bit me on the backside. I fail at being a disabled person in that I'm not grateful the appropriate amount, tend to be demanding, and refuse to fit the expectations others have of what it means to have my disabilities. These are things I'm almost proud to fail at.
Failing to be a "good" person, on the other hand, bothers me more than I want to admit. I guess it's because I actually want to be that "good" person and cannot manage it because I, depending on your perspective, either lack the selflessness necessary or do not have the physical ability. In either case, I am left feeling inadequate in one of life's most basic endeavors.

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."

It's in the Eyes

[This is a follow-up to Eyes and I.]

Having matching prosthetic eyes has been both what I expected and anything but what I predicted. Though I know I made the right decision for me, I have yet to feel comfortable with this new version of myself. And there's absolutely no forgetting they are there because they make themselves known in countless ways. For example, over the holidays I discovered that your eye lids don't like touching the freezing surface of acrylic. It's like touching any mucus membrane to cold plastic. Ugh.

There are moments when I forget they exist and go through my life pretty much as I did prior to all this eye craziness. It's peaceful to just be the me I've always known. Then some physical reminder will transpire and I'm back to consciously knowing I'm different from before. I pause during the day and take deep breaths trying to inhale a new self-concept that includes these eyes that I try to not view as other. They might come out, but they are me. Trying to wrap your mind around that is not exactly easy.

The other mind-bending aspect of this is other's reactions. Actually, it's the lack of reaction. Friends who have known me for years have literally not been aware of the change. Apparently the ocularist made eyes that so fit me that they look like they've been there my entire life. Since I'm not sighted, I can't exactly judge what superficially seems to be a deficiency in observational skills. Not noticing? It blows my mind each and every time it happens.

Based on who has and has not noticed, I have come up with a determining factor – how the person felt about my appearance before. I suspect those actively disturbed by it are aware of the change because they are aware of how I look in general.

Part of me worries that those who do not see changes in how I look may have gotten to a point where they don't really see me anymore. Did that "not seeing me" happen as a coping mechanism for being around me? The idea that people must not truly see me to be comfortable around me is upsetting and all too familiar.

Then we have changes in behavior. One man who I know in a wait staff capacity suddenly became much friendlier, making certain I knew his name, tossing off "good night" or "take care" when I walked past him out the door, and trying to strike up conversations. I'll admit it freely. My response has been polite indifference. Personally, I think he's lucky I haven't given him a lecture on not treating people differently based on how they look.

And of course there was the "beautiful" incident. I encountered an acquaintance who hadn't seen me in months. While it took a minute for the difference to register, when it did her reaction was the most intense thus far. She said, "Oh, wow, your new eyes. They look great." Then her voice changed as she cupped my cheek in her hand and said, "You look beautiful." I held back, "I looked beautiful before, too. Glad you finally noticed."

Finally, the other day I am pretty sure my request for the Cheese Man to go above and beyond was met because I asked in a funny way, tossed my hair, and smiled. Never has that happened to me before. There's a certain heady power in it that I hope I never exploit.

So has this changed my thinking about anything? Yes. It dawned upon me recently that I am walking around with less about me that gives people pause. I have long posited that physical differences such as scars, abnormal features, or deformed eyes loom so large in other's perceptions that they are unable to see the individual. Not only are my physical charms beyond their ken, but they don't really notice my intelligence, sense of humor, or quirky personality. My physical difference blinds them to who I am.

Now with my "normalized" appearance, there is less to kidnap other's awareness. This will shape my interactions in ways I cannot ever know for such a thing is impossible to assess. Its impact on dating does seem clear to me. With less obscuring me, people will have a better chance to know me which I find disturbingly wrong, but nonetheless my new reality. On one hand, I will never know if a person would have found me attractive before. On the other hand, I won't object to an increased chance of romantic entanglements.

I mourn the loss of my old appearance. It taught me so much about society and human nature. With my new eyes, I am now experiencing the world in a different way. Much of it makes me even more convinced that societal standards of appearance are wrong and need to change. If anything, I am more motivated to change the world.

What 2010 Taught Me

As all of you know, 2010 has been quite the year for me. With medical insanity around every corner as well as personal tragedies, I sometimes wondered if I would survive the onslaught. At the turn of the year, I'm permitting myself to engage in a wee bit of introspection because as you know, I am never otherwise reflective

1. Though I knew I possessed emotional strength, the events of this year showed me a resilience I not only didn't know I possessed, but I didn't imagine existed in mere mortals. I amazed myself. And, yes, I said amazed.

2. My health can take a beating and I will recover, so I do not need to live in mortal fear of the next medical issue's destructive impact.

3. Friendships might be even more complicated than romantic relationships.

4. I never regret following my heart. Now if only my brain had an off switch.

5. The things I thought I was good at are things I now KNOW I am good at. I have skills and talents that possess the ability to impact more than just myself in a positive way.

6. Laughter can transform, heal, and pretty much save sanity.

7. I can truly and completely fall to pieces and the only person needed to put myself back together is me.

8. If you view the actions of now as the story you will look back upon in years to come, it is sometimes easier to find your way through muddy waters. This year I have learned that when I get stuck, I need only ask myself, "How do I want to remember this moment?" and suddenly things become clear.

9. People, myself included, often hold back from going the extra mile for a "friend" because they believe that person would not do the same for them. I have come to realize that it is more about making sure you go the extra mile for those you know will do the same in return. It's not about who isn't going to do what. It's about lavishing attention on those you want to be a part of your life. Making it about opening up your heart and giving freely feels much better.

10. A year full of Hard Things can also be the best year you have ever lived. 2010 has been that for me.

I Have A Dream -- For Help

This entry is a companion piece to The Privilege of Preference.

As complicated as help is in the big, wide world, it is even more convoluted in my own mind. In my childhood, I somehow absorbed the notion that people would not like me if they had to routinely help me. I bought into the idea that asking for another's aid is inconveniencing.

In addition, I feel a strong compulsion to be grateful for whatever – and I do mean whatever – help I receive, regardless of whether it's useful or detrimental. Expressing preferences becomes a tangle for who gets to want when someone is helping them get what they need? While I rationally know all this is absurd, still it lingers for things learned over time and reinforced by experience are hard to alter with logic.

Consider some of my routine experiences: I have been walked to the wrong place and left there not knowing it. I have been given inaccurate information because the person thought they could get away with not looking since I can't see them. I have been treated badly because I expressed a preference in a seat at the airport. I was flatly ignored when I told a restaurant their Braille menu was unusable. I was the recipient of annoyance because I wanted something to match a specific color.

What I have learned from experience is in constant conflict with my belief that I should be treated with respect. A strong sense of fairness grapples with the undeniable reality that I need help and getting it must come first. Whenever I need to ask for assistance, all this comes into play.

The stronger my sense of self-worth becomes the angrier I find myself. Disrespect of my needs makes me dig in my heals about respect for my wants. It would be easy to dismiss my conflict, anger, and obstinacy by declaring me emotionally messed up. While that might be the case, I challenge any TAB to experience what I do on a regular basis and not have similar baggage.

Before I even consider asking for help, I run through a mental list: Can I do this myself? Can I find somebody who will barter favors? Who should I ask this time around? How do I ask so that I know they will refuse if it's a hardship? How do I arrange things to minimize the effort someone has to invest? Only after I have waded through all these questions and struggled with my own issues do I seek aid. Even after all these years, it still stresses me out. Heaven help me if it is somebody I've never asked before.

I don't think people realize the thought and preparation that goes into me requesting assistance. Or, well, I like to think they do not comprehend any of it given some of the ways they behave. If people acted as they sometimes do knowing all my prior groundwork, it would say things about humanity I simply refuse to believe.

In my dream world, help is offered willingly with no expectation of gratitude and a commitment to the helpee receiving aid that is what they want and need. In return, helpees would express appreciation and make clear what helping means in terms of time and effort. Assistance would not be offered out of obligation or when resentment is present. A "thank you" would end each interaction.

Help is an opportunity to do something good. Why can't it be that simple? A chance to be kind. A chance to show you care. A chance to be a positive force in another's life. A chance to live up to human potential.

Eyes and I

I am now the (proud? confused? overwhelmed?)owner of two prosthetic eyes and for the first time in my life, my eyes not only look normal but also match. Very intense experience.

Choices had to be made about the way my new eyes would look. I could have instructed the artist to copy pictures of my old eyes. I could have instructed him to do just about anything. Instead I chose to have "normal" eyes in my face. It was a terrifying thing to choose because I knew it could change absolutely everything.

For quite some time, I have believed that plastic surgery has risks that at least for me far outweigh any potential benefit. In my own life, I have paid dearly for my "normalized" appearance. In fact, I pay a price every day because of chronic pain etc. More reconstructive surgery to "improve" my face seems like a worse idea than jumping off a five story building.

I know I have given people the impression that I don't care about how I look, but that's not quite the truth. In actuality, I care about the impression I create, but not in the typical way. I want my outside to feel like my inside. While I have rejected traditional standards of beauty, I do have my own desires that boil down to me visually embodying the sassy, witty, animated, quirky woman I know myself to be. Freed from societal beliefs about what beauty should be, I have been able to be how I want to be and pay only the price I deem reasonable.

Deciding to have "normal" eyes was a tough decision, but I came to realize that intentionally looking different was a deliberate choice to violate appearance norms. It felt like being different not because different happened to coincide with what I wanted but merely for the sake of being different. That's not the type of person I want to be. As you know, having an abnormal appearance does have costs especially in terms of how others treat me. Any decision to continue looking "abnormal" would be the equivalent of choosing those bad annoying behaviors. It would bring a degree of negativity into my life that I do not want and would feel responsible for its continuation.
Total honesty dictates I also admit to wanting to have "pretty" eyes. Maybe it's internalized social norms. After all, my eyes were the most "abnormal" part of my appearance. Maybe that type of eyes fits my internal image of myself. Maybe I'm a complete hypocrite. You decide. All I know is that deep inside I wanted them.

My reasons here seem very clear and logical. There's a cleanness to the whole process that, trust me, wasn't present while I was working through it. Even now I have a sense of betraying my own beliefs with this choice.
No matter the decision I made, I knew I would never feel quite the same. Yet again, I would be faced with adjusting to another version of myself. As a child, surgery after surgery, I wrapped my mind around the new face molded from flesh and bone. Now I must expand my reality to encompass this new version. Can't quite count it, but I think maybe Jen version 5.2.

[A follow-up to this entry can be found at
It's in the Eyes.]

The Contents of a Heart

Oprah proclaims, the Flirtations sing, and our parents teach us that the most important thing in life and the measure of our worth is the quality of the intimate relationships we form. This lesson takes the emphasis off the superficialities of economic status, professional achievements, race and background to focus on who we are as people. It stresses love as the purpose of living and is meant to make us kinder, more caring individuals.

Currently the trappings of success are not evident in my life, so this lesson should be a comfort to me: my disability limits my energy not my heart's ability to care about others. And, yet, instead it seems to mock me. I could be a saint, but few would know. I could be filled with hate, but this too would be rarely known. Without basking in my kindness or withering before my malevolence, how can the nature of my heart and therefore the quality of my love be witnessed? It's like the proverbial tree falling in the woods with nobody to hear it.


I have given this conundrum careful consideration and realized its inherent irony: I lack the trapping of success in my life and this only emphasizes more my difference. For whatever reason, that difference makes people les likely to see me as potential friend. With fewer friends, the contents of my heart is evident less.

So, what's a person to do? My handful of friends get a lot of attention for I have time to listen and space in my head to keep track of important things in their lives. When one bemoaned her inability to do the same for me, we thrashed it out and discovered it is all about math. People have a specific amount of attention to lavish on others. This amount is defined by both the character of their heart and the busyness of their lives. It is then apportioned out amongst their friends – more friends translates into less resources for each person. Most won't simply spend this fixed amount on each friend they have, but devote more to some and less to others. While detached and calculating, this theory explains why people with a vast circle of friends often bemoan not having many intimate connections. And while it also makes clear why my friends say I spoil them, it hasn't solved my problem.

I have made an effort to look for ways I can extend kindness to relative strangers such as baking treats for a memorial service or offering support to somebody I thought needed it. The person thought I was weird and the jury is out on the cookies. I have tried enlarging my circle of intimates by how I interact with friends of friends. No luck yet. Short of hanging out a sign advertizing myself as a stellar friend, I am out of ideas, so I ruminate on the cause.

Over time, I have noticed a decrease in the number of people who have obviously misguided notions of disability. Total silence upon forced interaction with me is no longer the norm. The offer of a guiding arm has increased and being dragged by some body part decreased. Tolerance is on the rise and fills me with joy. People beating down my door to become a part of my life has yet to happen. Why?

Whether it be from school assemblies on how to interact with other disabled students, picking up tips from watching movies, or experience, people have more information about how to behave with a disabled person which explains the increase in positive casual encounters. An understanding of what it means to be disabled does not come with knowing to face a Deaf person when speaking or that service dogs should not be distracted from their jobs. This lack of understanding seems to be at the core of my dilemma.

Since I have always been disabled, I can only offer educated speculation. I used to think people rejected me as potential friend because of the hassles my disability would inherently create – I can't drive to meet them, they might need to function as sighted guide, and who knows what else. While this is probably true in some cases, over the years I have come to realize it is usually more basic. Most people think of disability in terms of what it means the individual cannot do. This laundry list is a barrier through which it is hard for a disabled person's assets to be perceived. When they meet me, people think about all I cannot do because I cannot see as opposed to noticing my quick wit or empathetic tendencies. It isn't a matter of me being considered for friendship and rejected. It is a matter of me never being in the running because I am not a person but a collection of inabilities.

This explanation offers comfort in that it is clear this has nothing to do with me. Unfortunately, the potential solution is time. Just as people have become more educated about how to behave around a disabled person they will also begin to see past the barrier of inabilities to the person. Then I will have a chance for my value to be defined by the love I bestow. Until then I am left to spoil those in my life and ponder the wording of that "stellar friend" billboard.