Thursday, February 28, 2013

Misery, Desperation and Nightmares & Dreamscapes

From Charles Dickens we move on to something reminiscent of Stephen King. After the events in A Tale of Two Extremes, I had two doses of anesthesia and from a PTSD perspective, everything went well. In fact, by the third procedure in October 2012, I was starting to feel like it was a routine event. Totally and dramatically wrong. A failure of imagination as well as not attending to multiple warning signs are the only explanations I have as to why I was .... blindsided.. First, there was the orderly who thought I could see and was surprised I was sighted. Then there was the O.R. nurse similarly uninformed and also not aware of my lack of a nasal airway. There was then a floating nurse who thought I could see. Three in a row should have raised my suspicions, but I explained it away as a lack of charts being read with any care at all. Next there was the anesthesiologist who I'd encountered before. He wasn't my favorite, but nobody can live up to AnesthesiaSaint mentioned in the previous entry. However, when he asked what music I'd like to hear, I told him and he IGNORED ME, I should have paid better attention. When he continued to disregard most of my requests for how I wanted him to interact with me, there should have been red flags doing the cha cha in my head. Not knowing I'm blind is one thing. Totally ignoring what I want is another case altogether. I came out of anesthesia and was told, "We are moving you to your bed now." They didn't give me a direction, which is typical for people who don't know how to behave around a blind patient. I went to ask, "Which way?" and discovered I couldn't talk well. There were sounds I was unable to make. I tried asking the question in other ways, but was more or less ignored. So I tried all the nonverbal communication skills I know, including trying to fingerspell, which is when I realized my right arm was fairly numb and unresponsive. I started getting pretty agitated. Nobody really did much to sort it out. I was the man having the breathing treatment who was shot down when he tried to get the reassurance he needed. My brash proclamations that I had the skills to handle such a eventuality crumbled in the face of medical staff unable to notice that I was communicating. Finally, I managed to get across a need for pen and paper because I found ways to express the concepts using sounds I could utter. I demanded my doctor. It took extreme insistence to get him. My awesome, amazing TracheaDoc was not prepared for the situation and handled it suboptimally. He had no idea I had just experienced enough trauma to take my PTSD from "mostly managed" to "completely out of control." That's because doctors aren't educated on such things. Unfortunately, in this one way, he turned out to be like other doctors. Guess he's not superhuman. He did share one crucial fact – the paralytics used in surgery hadn't worn off and my vocal cords were effected. Also, the blood pressure cuff had cut off my circulation. I pretty much cursed him out saying he'd better be right or else with a few tears managing to escape. You know what? I'm extremely proud of myself for not losing it more than I did. The circumstances of this situation could not have been better for triggering my PTSD if I'd picked them myself and went beyond anything in my most vivid nightmares. If the events had been described an my opinion as to my probable reaction sought, I'd have predicted screaming, yelling, throwing things and behavior likely to get you sedated and put into a padded room. Instead, I had a fairly understandable response. Or, well, to me understandable. I don't think the sighted medical staff had that perspective. I'm concerned about what my medical chart now says. I'm looking at surgery in the next month and the thought is... not pleasant. People Aren't Broken is our new home!

Monday, February 25, 2013

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

Friday, February 22, 2013

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. :)

Monday, February 18, 2013

Apples and Oranges

A member of a musical duo I adore was chatting with me after one of their shows, which we have done many times before. He asked how I was doing and I replied that it had been a struggle of late. As he put his hand on my upper arm, he intensely said, "You need to sit and really listen to the new CD. It's all about that." I took it home. I sat. I listened. I did that pretty much every day for three weeks. I still couldn't connect. It wasn't that the music lacked emotion or that something didn't quite come together. It's a great CD and the artists in question conveyed their message well. I just couldn't identify with it. At all. I had an extremely hard time with this fact. A musician I respected felt his work would speak to me. Why couldn't I hear it? It took five months for me to figure it out. They're singing about apples while I'm trying to juggle oranges. The music conveys the inner struggles around love and relationships, not so much about love gone wrong or love unrequited, but about how one's thinking can keep you from finding love. Clearly someone went through emotional hell trying to discover why he longed for love but couldn't quite embrace it. It has a more general message about hitting bottom emotionally and then finding your way through it discovering that the journey through the awful helps you better appreciate things. At it's core, the music is about inner struggles to overcome internal obstacles. My two ongoing issues are my medical complications and social isolation. Obviously the problems my body has developed cannot be solved by an emotional struggle. My esophageal muscles will not become strong because I searched my soul, figured out the problem in my head, and fixed it. In other words, it's solution is not within myself to discover and implement. It requires doctors and tests and surgery and living with side effects and hoping it all works as advertised. Social isolation seemingly has a more emotional basis for all I need to do is get out there, overcome my shyness or other maladaptive social behaviors, and I'll meet people. That's all within my control to fix, right? What happens when you do all of that and the only result is frustration and a bone-deep belief that it's not you? With every fiber of my being, I have come to believe that my social isolation is a factor of how others perceive me, social norms, societal beliefs, and how what we are consciously or unconsciously taught shapes our thinking. I could be Mother Teresa or Hitler and the bottom line wouldn't change all that much. In case you need a little bit of proof, I am more active in the world than I have been in probably twelve years, yet it has not had a perceivable impact on how many friends I have, the quality of those friendships, or dating. While it is true that many more people know who I am, that has not translated into meaningful human connection. In fact, in many ways being more socially engaged has only served to highlight my inherent aloneness. So, while the musician was kind having the best of intentions to offer me solace, it didn't work. They sing about apples and I juggle oranges –both fruit, but very different. American as orange pie? Fresh squeezed Florida apple juice? Okay, maybe the second one if Florida had the appropriate climate. Blog. Moving. Soon no new here. Plan. People Aren't Broken


While introducing a song entitled "Hope," a local San Diego musician gave an inspirational pep talk that exemplifies what I have heard time and time again. To paraphrase: Everyone goes through hard times and the only things within your control are your attitude and your effort. With a good attitude and if you try hard enough, you will get through it. He's not wrong, exactly. He's just talking about some subset of people to which I do not belong. They are folks whose "hard times" can be gotten through with the right attitude and sufficient effort. I've watched it happen, so I know attitude and effort work for many. I'm just not one of them. Attitude can accomplish a great deal, like when I focus on what I might learn from a situation or the humor that exists within a predicament. It cannot, however, transform steps into a ramp. Similarly, my attitude can't morph someone's ignorant behavior into a more palatable experience. Being treated badly can be endured; Being denied access to something cannot be overcome by the powers of positive thought. Similarly, effort is problematic for me. My chronic illness limits my energy leaving me with definite constraints on the sweat I can expend. Thus, I do not have the luxury of endless get-up-and-go necessary to fix misfortunes. Perhaps the key here is what the musician meant by hard times. I'm fairly certain he wasn't referring to the kinds of situations I encounter. Instead, he means troubles universal to all human beings such as the death of a parent, having something stolen or getting your heart broken. What rang false as I listened to his pep talk are all the things I encounter each day that are unique to people with disabilities. Inaccessibility, lack of accommodations and people's ignorance create some of the most distressing problems I come across. Attitude and effort cannot resolve all of them. Sometimes, I'm left with lousy circumstances not of my making and beyond my ability to fix. With them, speeches about attitude and effort leave me feeling hopeless not hopeful. Case in point. I'm dealing with the way social perceptions of disability make friendships harder and reduce my chance of finding a mate. Emotional intimacy is as central to my mental health as calories are to my physical well-being. I cannot force people to befriend me nor can I change how they perceive me by thinking positively. If someone keeps you from food, eventually you will suffer physically. If what keeps me from adequate human connection is other people, how is that really different? How is trying hard or having a good attitude going to feed my soul? I never know what to say to people like this musician. For them, effort and attitude work and I do not want to discount that. Unfortunately, he is talking about peeling apples while I'm trying to peel oranges. This entry will elucidate Apples and Oranges So, I sit in the audience feeling like I do not belong alienated by someone who is just trying to help people get through tough times. I become the invisible other apart from the crowd I inhabit and isolated from the human experience being referenced. Blog. Moving. People Aren't Broken

Thursday, February 14, 2013

McSteamier Does Appearance

Grey's Anatomy has replaced McSteamy with Mc (in my opinion) Steamier and thus one plastic surgeon exits and another moves to the forefront offering me more appearance-based storylines to critique. Aren't you just jumping for joy? On "The End is the Beginning is the End" (Season 9, Episode 11), James, a sixteen-year-old teenager, comes for his sixth surgery to address what he refers to as his "weird" appearance. Everyone around James cringes to various degrees about the weird label further substantiating the point I made in Grey's Anatomy of Appearance. Those of us with the weird face can accept it and the social consequences with far more equanimity than those around us. Why is that? And that's not a rhetorical question. When The Hot Girlfriend visits James, McSteamier seems perplexed and James offers an explanation that goes something like this: McSteamy told me surgery was going to get me only so far so I had to develop some moves to get anywhere with women. He said his moves wouldn't work for me, so I had to come up with my own. I blind them with my personality. This brief explanation took me to the heights of elation only to drop me to the depths of infuriated resignation. My personal experience of plastic surgeons is that they bank on all the negative consequences of having a weird appearance in our society – isolation, rejection, scaring children, lacking dates, getting treated like you're contagious and... Then they offer you the infallible remedy – described in as little detail as possible -- to vanquish the horrifying fate. It's an approach of extremes selling you on the described course of action better than any ad campaign could achieve because no convincing is necessary that looking weird has lousy consequences and we've been taught to believe Medical Gods have all the answers. After all, they became doctors to "do good" and no self-interest or ego is involved in their proclamations. They only want what is best for us and are going to deliver it. At no time in my life has anyone let alone a doctor said, "Surgery will only get you so far." I'm actually a little terrified to even contemplate how that might have altered events. Would my parents have been so persuaded and determined that I needed to be fixed? Would I have been such a willing sheep? Would such an honest perspective coupled with identical experiences somehow left me with less emotional scars? Of course Grey's Anatomy's writers then made me furious by implying the right behavior (moves) could overcome a weird appearance. Really? I'd love to attend the workshop that taught me that particular set of skills. Replacement of my biological eyes with prosthetics altered my appearance in a manner socially perceived as an improvement. Since then, I have noticed significant behavioral changes in those around me. Strangers engage in innocent flirting. Children's questions have morphed from "Mommy, what's wrong with her?" to "Mommy, why is she using that stick?" Dates haven't suddenly begun raining from the heavens, but stranger discomfort has drastically decreased. However, while under anesthesia, I did not receive an infusion of improved social skills nor a transplant of dazzling moves. To me, this experience argues that how I look has more power to impact others than anything I say or do. I looked weird. I look a little less weird. People behave accordingly. In the end, Grey's Anatomy may have mitigated the impact of it's "If you have the right moves" perspective. With all his blinding personality, James still said, "Looking less weird would be cool." The blog has a new home at: People Aren't Broken

Monday, February 11, 2013

Blind Self Defense

A local community group of and for blind and visually impaired people offers a free self-defense class to those with vision loss. To encourage myself to try more adventurous travel, I decided to attend. I'm going to attempt an objective re-telling of events. First, I called to find out how to reach the location. I was asked, "Do you have any usable vision?" I replied in the negative. "Then just call us when you are at the corner and we will come get you." Being me, I thought, "Screw that" and tried to find the place on my own. I failed and resorted to calling. I was told the woman would "Throw the harness on the dog and be right there." A man then pulled up and confirmed I was going to the place in question. "I'm here to give you a ride," he said. "I'm not getting in the car of a man I don't know," I flatly and rather emphatically stated. "Then how will you get there?" he asked. "Um, walk." I answered. "Turn right at the first driveway," he said and by subsequent lack of presence I determined he had left. He did re-appear about when I needed to turn and directed me inside. I did not enter the building until I heard the sound of other people. After leaving my guide dog leashed to a chair – standard practice in such a situation – I took my telescoping cane and went to the spot I was directed to occupy. It is all the way across the room from my dog. Someone then asked me, "Why do you have your cane?" "So I can walk places," I replied. "You don't need it. We'll take you wherever you need to go." "Um, is it a problem for me to have it?" "It might get in the way. We'll just put it by your jacket." "Uh, okay." Class happens. At the end, I need the restroom and am given directions that include, "Use your echolocation to find the first hallway on your right." I don't really have great echolocation, but I did find the hall with my dog's help. Upon leaving, I asked which way to turn once I exit the building. I was told right and I tried that. It led me to a trash can, poll, and bush. I went back inside and inquired, "Go right immediately outside the door? There was a bush and stuff." "Just tell your dog to go right." I did that. The nice mailman had to help me get to where I needed to go. Note: The blog is moving to People Aren't Broken

Thursday, February 7, 2013

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

Tuesday, February 5, 2013

A Hostile Letter to the Non-disabled

Dear Temporarily Able Bodied person, I have recently gotten in touch with my anger toward you. It isn't enough that you feel sorry for me. And it isn't enough that you assume my incompetence. It's also not enough that you expect me to be gracious and grateful and polite no matter what you say or do. It's even not enough that you consider my fate worse than death. I could live with all that if necessary. Unfortunately, you seem to insist upon engaging in beliefs and perpetuating a society that literally keeps me from what I want. You, in the form of this society, even taught me that it is what I should want. This world you've created teaches little girls to want families and encourages grown ups to find their life partner. At the same time, you school everyone in the fact that I'm helpless, dependent and pitiable. I should want home and hearth. I should just be fine without ever actually getting it. When it comes to accommodations like accessible formats, audible crosswalks, and Braille on elevators, I can at least comprehend the obstacle created by having to take that extra step, to make the effort. You need to think that someone blind might want to read the menu, cross a street, or go to the eighth floor of a building and do something about it. The additional thought and exertion necessary is, well, work. What effort or energy does it take to stop feeling sorry for me? To cease expecting my politeness in the face of insult? To desist in assuming I'm not competent? There's no effort. It's not a Herculean task. It's a simple act of not.... Instead, these negative beliefs become the armor you use to protect yourself from the distress of my existence making it easier to feel pity rather than trying to understand, to offer supposed compliments in place of questioning the underlying insulting assumptions and to dismiss me as a substitute for perceiving my value. It's more comfortable when you don't actually perceive me as a person. My personhood comes entirely too close to you having to consider what your life would be like if you became me. Mustn't contemplate that possibility. So, to make your life all comfy, safe, and easy, you keep me from what I want. You make me an undesirable mate and nothing I say or do can in fact remove that stigma from myself. I have Hester Prin's scarlet letter tattooed on my forehead only nothing I did put it there and nothing I do can remove it. My anger at you knows no bounds. I'd scream, but I'd become hoarse long before I had even begun to express my fury. Becoming a hermit would work except for the fact that modern society makes us all interdependent – a fact you conveniently forget. I only wish I could morph my personality into one that would welcome your pity, low expectations, and devaluation with gratitude because at least then it wouldn't add to my misery. Instead, I get to be full of rage in a way beyond my ability to express and beyond my ability to change. Ironically, frustratingly and ridiculously, the fixing of it is left to you who could care less that your unthinking assumptions deny not only me but an entire class of people something you proclaim necessary for happiness. I didn't choose disability to be a part of my life, but I did do everything in my power to make my life work. What, exactly, have you done except get in my way? Respectfully, Jen NOTE: This blog is moving, but I'm giving you time to adjust before I fully transition to the new site. Point your browser or whatever to People Aren't Broken

Monday, February 4, 2013

It's Been......

Months. Far too many months. Fortunately, I did not make any promises about posting regularly since they would have been broken. Into tiny slivers. I now know why I wasn't writing – to preserve what little mental stability I had left. Writing this blog is intense because in trying to live up to my commitment of sharing the good, the bad and the ugly, I not only have to unearth buried emotions, but I then must turn over rocks to study what's beneath. I don't mind physical worms and slugs. The emotional ones, on the other hand, aren't fun. Barely keeping it together, examining the unpleasant wasn't a wise move. I'm better now. Not great, not fixed and definitely not at my best. Just better. I did learn one very valuable lesson. A bad therapist can make it so much worse. That was last summer and early fall. A good therapist, in contrast, helps, not in any miraculous way, but subtly. I found the good therapist in December. Over the past few months, I did do some writing. For now, I'm going to post something new each week and pull out something old as well. NOTE: Thanks to the help of a dedicated reader and long-time friend, this blog is moving to it's own site! People Aren't Broken