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.

Things That Make You Go ARGH!

It's been one of those weeks where becoming a hermit looks rather appealing. Multiple factors have contributed to an exponentially higher amount of contact with the Medical World. In the Blind Person v. Medical World war, I am currently getting my backside handed to me on a surgical steel platter.
I have a ten page form to fill out for a doctor. The PDF is an image not text. The office manager tried to turn it into text, but it doesn't exactly work. I'm going to need to sit on the phone and go through the entire thing with someone.
That, however, had a better resolution than the next problem. I have an online questionnaire to complete for another doctor. They have designed certain parts in a way I can't seem to negotiate. I made extensive notes on my answers and called the doctor's office.
Once I explained the problem, the first question was so predictable, "Isn't there someone who can do it for you?"
"Um, no. Can I email all these notes to someone so they can fill it out for me?"
"No." I'm bringing my notes to the appointment in the hopes that someone will better understand the problem when my guide dog is standing by my side.
And the final bit of insanity. I need to have a study of my stomach's ph level. There is great technology that allows them to monitor it 24/7 if I just carry around a little box. I asked the doctor, "Is sight necessary in any way to do this?" I was assured not.
Being skeptical, I asked the scheduler. "Yes, of course. you need to log your symptoms as they happen."
"there's no way around it?"
"No."
"I can't have someone with me 24 hours a day."
"I don't know what to tell you."
She is leaving a note for one of the nurses who might be able to solve the problem. Otherwise, no stomach test to help us sort out the cause of my tracheal stenosis. Without being able to pinpoint the cause, I won't be able to avail myself of the permanent solution.
People speak about the privileges I sometimes receive as a result of my disability – reduced bus fare, cutting ahead in lines, access to free audio books, extra time on tests, or being able to have a dog in a no pet apartment. I would relinquish them all, even the dog, to also rid myself of events like the above. Trust me when I say that lower bus fare is not compensation for the ongoing battles I must wage in the Blind v. Medical World war that is consuming my life.

The Ugly Part

I probably shouldn’t be allowed near a blog right now. Someone should be here to say, “Jen, drop the keyboard and slowly walk away from the blog.” There is, however, nobody to do that.
This is in fact precisely the point. Disabled people, or at least this one, have trouble with both acquiring romantic partners and establishing and maintaining close friendships. Aside from the obvious consequences such as isolation, it means I do not have A Person – that one individual who I know will always be there no matter what. And, unfortunately, my particular circumstances mean I have need for A Person more than most.
I have known all this for quite some time, but last week it became a bit more relevant. Southern California went dark in a massive blackout. Exactly one person went out of her way to check on me. While it turned out I was fine, what if I hadn’t been? When push comes to shove, who will make certain I’m okay?
I suspect some of you are thinking, “There’s the Red Cross, 911, and surely neighbors will help.” Well, the power company has a list of people who might have problems if the power goes out. I got my call from them 16 hours after the power went out and 9 hours after it went back on. Additionally, in my apartment complex where I have lived for six years, not one of the twenty-five residents asked me if I needed anything.
This scares the out of me. I have a vivid and slightly pessimistic imagination, so I can come up with numerous circumstances where I might need help and can’t do anything to make that need known. I hate admitting this, but my life is pretty much a carefully stacked pile of rocks. One seemingly small shift could cause boulders to go tumbling every which way. Last week was a visceral reminder that disability both makes me more vulnerable and also limits who knows of the plight and helps.
A solution occurred to me. Once a friend told me I was “too independent for my own good.” Is that possibly the case? If I were to appear more helpless, would I thus get more help?
I don’t know about you, but I don’t want to live in a world where I have to be les than I am in order to get what I might need. I’m not even sure I’m capable of behaving in that way.
So, on behalf of all the disabled people who walk in shoes similar to mine, even if you don know us well and even if we seem like we have it all together, when disasters like floods, hurricanes, wild fire and massive blackouts occur, knock on a door and use your words to say, “Things are a little bit nuts. I was wondering if you needed anything.”
At the top of this blog, I said I should probably not be allowed to post. This entry is going up tonight because tomorrow I am having yet another surgery (minor, promise). I’ve asked people for rides. I’ve asked people to come by and check on me. I’ve reached out for emotional support because my PTSDis acting up. Mostly people have been more than willing.
As I “reap” the benefits of this support, I feel a bit horrible even speaking about how abandoned I felt last week. This blog is supposed to show the good, bad, and ugly. Guess I'm living up to the ugly part today.

Emmylou

In December, I acquired a fifty-two pound ball of exuberance in the shape of a yellow lab named Emmyolou. Les than five months later, she is gone and probably will not return.

The short story is that she walked me into a poll at full speed and I fractured the bone graft in my nose. In consultation with the guide dog school, it was decided that she needed a work evaluation to make certain being a guide dog was her calling. My instincts tell me her destiny lies elsewhere.

In my experience, the bond between working dog and handler is distinct from that of pet and master. First, the canine has been bred to be smart, sensitive to people's emotions, and think independently. They need a facility with language, a sense of duty, and a drive to be of assistance. They also provide help that pragmatically positively impacts the handler's life. This means the connection possible is deeper, richer, and far more complex.

Initially, on some level I tried not to bond with Emmy, but when a friend pointed this out, I made a serious effort to connect with my dog. I thought the problems we were having as a working team might be caused by a lack of closeness. While that proved not to be the case, she wormed her way into my affections.

Multiple times a day, Emmy would come over an paw at me, the doggie equivalent of "Pay attention to me!" Sometimes she would instead work the cute angle by wiggling on her stomach across the floor to me. A tail wag was a full body experience with her entire body wriggling. She had a toy chicken that became her favorite and she would poke at me with it. "Play! Play! Play!" I'm pretty convinced she learned to give commentary by the length and frequency of squeaks from various toys. She even pursued any flies that entered our house. I've never seen a dog snap them out of the air. Once I let her up on the bed at night, she would walk around and around in circles as happy to step on me as the mattress. Circles were in fact her favorite walking pattern. If I dared sit on the floor, she would walk around and around me until I was done. If I danced to a good song on the radio, she would join in by leaping around me in, you guessed it, circles. This dog spent most of her day either saying "I want to play!", "You love me, right?" or "You're mine."

I have never met a dog who did so much to connect with a person, had such a sense of playfulness, or engaged in physical antics as if she were the canine equivalent of Charlie Chaplin. Having her around was sometimes stressful because I never had enough attention to keep her satisfied, but always a source of laughter and joy. There are no words for what life was like with such a creature as my constant companion.

Then there was the guide dog aspect. Emmy had issues in this area, but still changed my life. Cane's for me are exhausting in a way dogs are not. I could walk a mile with Emmy and be less exhausted and more relaxed than a 4 block walk with my cane. Activities became possible that I never considered before. The degree of independence I achieved was more than I thought possible and far more than I ever reached with my last dog. I became addicted to it without even knowing the process was occurring.

Now my exuberant companion is gone along with my addictive autonomy. In the time it takes for a bone to snap, my life has been turned inside out.

I have been through the ending of two long term romantic relationships that lasted several years. In both cases, I was upset in the cry your eyes out way of most people. This experience is almost worse. In fact, if Emmy had been able to engage in actual conversation, it would be worse. Unlike romantic heartache, there is no common wisdom about how to cope. Last summer when I had to put my retired guide dog to sleep, it was the last Hard Thing in a long string of insanity. I had no emotional energy left in my tank to feel anything, so I let time pass. Eventually, as I had known I would, I got past it.

This, however, is different. I feel like one of those wimpy paper shredders that can only chew up two sheets of paper at a time, but I am faced with five layers of cardstock in an endless roll that vanishes in the distance only because the human eye cannot see further. I'd love to deal with this, learn whatever I can, and move on. Instead I just sit with this event before me unable to get my mind around it. The part of me that usually copes with whatever life offers is either missing or broken. I literally have no idea what to do. None.

From Here to There

No matter how precise you can be about a destination, if you don't know where you are, it's impossible to plot a course. This is true for navigating highways as well as the complexity of human emotion. At the moment, I am a bit fuzzy on my "here," so "there" doesn't feel within reach.

It's all about the continuing medicalization of my life, because the ending of 2010 did not terminate the craziness. In short, the presence of my eye prosthetics might be an ongoing cause of increased mucus production which without a nasal airway, causes serious post nasal drip. That might be why the tracheal stenosis of last year is coming back. The leg pain I've been experiencing for over a year finally sent me to a doctor and the top two potential explanations both have limiting my walking for a period of time as part of the cure. In light of my new guide dog Emmylou, limited mobility is a wee bit problematic. Optimistically, it would be a refreshing change if my leg pain had an explanation they can not only find but treat.

It seems like I'm in a constant state of falling apart. I feel like less of a person, less a contributing member of society, and somehow less of a positive force. In fact, I feel like a black hole sucking up tons of resources with no return on the investment. Even the language I used – falling apart – shows that I'm perceiving current events as not simply a situation to manage, but a huge life negative. Where did I pick up the idea that having multiple medical issues decreased my value? Who taught me that medical resources should only go to those who would give something back? And when did it become alright for me to entertain the word "broken" in my head?

To be honest, all this medical "crap" is a pain in the butt. Scheduling issues alone sometimes make me want to tear out all my hair and you know how much I love my curls. Should I need to stop walking, it will add to the complexity of my universe. Then there's the increased contact with the medical profession which tends to see disability in ways contrary to my preferences. Therefore, yes, the medicalization of my life is a pragmatic negative.

Blindness can be a pragmatic negative as can Chronic Fatigue Syndrome, yet I do not believe these decrease my worth. This leads me back to my question" why do I think ongoing medical issues lessen my value?

Possibly I should have waited to write this entry until I could answer my question. Instead, I want to allow people to see that sometimes I struggle with fundamental issues and that I'm not this amazing source of strength. I falter. I don't have all the answers.

The silver lining in this particular cloud is that I'm completely aware of the ridiculousness of how I'm feeling. However, until I can understand my "here," I cannot get to a less annoying place.

Greener Grass

Often I have heard comments about people on SSI, SSDI, or other forms of social welfare support that boil down to, "It must be nice to not have to work." Lately I've been schooled in why that's anything but the case. The greener grass is actually concrete covered with green paint. Or maybe it's a green, slimy pit of quick sand.

Reading this entry, you are probably going to become bored and/or confused. Since this is simply a condensed version of my "greener grass," you might want to give some thought as to whether or not it is a kind of green you wish to envy.

The Social Security Administration (SSA) made a mistake whereby they noted my bank accounts multiple times making it seem like I had more than the $2000 I'm allowed to have in assets. And, yes, I can't have more than that or I lose my SSI and good health insurance.

I invested effort in resolving this to the tune of seven letters, about seven hours in the SSA waiting room, and hours organizing materials. It took that just to get someone to delete a few bank accounts from the system. It also cost me the $50.00 they garnered from my benefits while I took the six weeks to get them to correct their error.

Now to the second SSA problem. I have a life insurance policy that I recently discovered had a cash surrender value SSA counts as an asset meaning it is considered a part of the $2000.00 maximum I'm allowed to have. This meant I was over that maximum and had to spend about $1300.00 in less than thirty days and it could only be on certain types of purchases. It was a major pain in the neck, took hours to do, and required help from various friends to accomplish. Last week I discovered all that was unnecessary because I consider the life insurance policy to be for my burial expenses. So now my savings account is very small making me nervous and it didn't have to be this way.

Then there's my prescription drug coverage. I was told my antidepressant would no longer be covered in the name brand version. Since I have a bad reaction to the generic, I called my drug plan to ask some questions. I was told the 100mg and 200mg versions would be covered in name brand, but not the 150mg tablet I needed to constitute my 350mg dose. To me, it seemed like a no-brainer to get them to cover my dose as well.

I warned my doctor's office about this in December and they chose to wait until I needed the medication. Now they are having trouble getting authorization. In trying to sort that out, I discovered I had been misinformed about 200mg and 100mg tablets being covered. *bangs head against wall*

In the meantime, I have a transitional override to get my meds. Sounds simple, but somehow the pharmacy who could do my insurance in December can no longer accomplish the same feat. The computer "rolls over" at the first of the year and has dropped a byte throwing a wrench into the works. I discovered this after waiting forty-five minutes at my pharmacy.

A couple of phone calls and an hour later unearthed the factoid eaten by the computer: my father is retired. Yes, it was that simple yet impossible to figure out.

Believe it or not, I actually have an easier situation than many because blind people are often protected in ways other disabled people do not enjoy. My grass might be a slimy, green pit of quick sand, but theirs is inhabited by leeches and jellyfish.

Worrying about money these days seems to be a universal, but there are degrees. Some are concerned about how to pay for their car, house, and vacation. Others fear not being able to make rent, eat out, or buy a friend a birthday gift. Still others worry about affording adequate health care and food at the same time.

Next time you think someone's grass funded by social welfare is more lush and verdant than yours, consider what costs come with such luxuries. I guess if you love jumping through hoops and using a machete on red tape it will be right up your alley.

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.

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.]

Blindness v. Medical Profession

First there was the eye. Then there was the trachea. Two different body parts and two distinct experiences one atop the other making their disparity so apparent even a blind person noticed. And I believe that was the reason for the difference – my blindness.

Eye Doc came into the office, didn't quite know how to shake my hand, and spent some of the appointment looking away from me focused on paperwork. Pulmonary doc entered the office, introduced himself with a normal handshake, had a conversation with me about the situation, and then paged Trachea Doc who was in the office within fifteen minutes.

Trachea Doc's handshake was natural and he sat next to me for our conversation. Perhaps position or some other audible queue indicated with 95% certainty that he looked directly at me as we spoke. At the end of the consultation, Pulmonary doc personally guided me back to the waiting room. That usually doesn't happen.

The time came for procedure explanation and my endless questions. Because of my vast amount of medical exposure, I am not your standard patient nor is my body typical. Eye Doc was impossible to reach, seemed unable or unwilling to recognize I'm not your average patient, and was uninformative. Trachea Doc sat next to me and explained everything answering all my crazy questions. After I have explained that medical procedures tend to have odd results, he obviously registered this information because he referenced it later in conversation. When he realized I have parents will be very concerned about the situation, he offered to call and speak with them directly.

Both Eye Doc and Trachea Doc came to see me in pre-op, but Trachea Doc hung out in the operating room before I was put to sleep. While he assembled supplies, he stood next to the table and distracted me with Small talk. In all of my twenty-something surgeries, I cannot remember this ever happening. Ever.

While I am not done with follow-up, I already have some data. The day of my trachea surgery, I ran into Pulmonology Doc in the hall. He greeted me by name, knew enough to tell me his name, and was aware of my surgery that day. Eye Doc has warmed up to me slightly and our handshake is less awkward. He also seems to find me more interesting to study than paper. Trachea Doc gave me his email address, repeatedly has told me to call if I ever have a problem, and made it crystal clear he considers any concern I have to be worth his time.

Treating physicians rely upon staff and other medical professionals who have a myriad of reactions to me. Eye Anesthesiologist listened to my concerns proving it when he concluded our conversation with a summary of the salient points. He then did his best to distract me as I had requested. Trachea Anesthesiologist seemed to hear what I said without it quite registering. Although I expressed my visceral fear of oxygen masks, a result of having them held over my face as a child, she not only insisted upon using one, but I think she put some downward pressure upon it.

Eye Nurses were ill-equipped to interact with a blind person. The worst problem was continually having them come into my cubical and start doing something without alerting me to their presence. Then they would leave without letting me know. A friend tried explaining the problem and asking that they at least announce their comings and goings, but it had absolutely no effect.

Trachea Nurses largely seemed comfortable with a blind person and those who were uncertain addressed the issue directly. Because of my Eye Nurse experience, I made a point to tell the Trachea Nurse-in-Charge to make certain people announced their arrivals and departures which might explain the difference in behavior.

Here's the thing: Eye Doc is supposedly one of the best in his field practicing at an eye clinic with a stellar reputation. AS part of the same medical center, I am certain Trachea and Pulmonary Doc aren't slouches either, but I have no objective data. I thought age might have something to do with the difference, but Eye Doc and Pulmonary Doc are equivalent in maturity. I'd chalk it up to human variation, yet Trachea Staff consistently behaved better. Honestly, I have no explanation for the disparity.

I would like to point out one thing. By the nature of their patients, Eye Doc and Staff have a better chance of encountering blind people in their daily work. You would think it would show in behavior.

Ever Heard of a Tracheal Stenosis?

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

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

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

Hopefully I'll be back better than ever.

Eye of the Beholder

Telling people about my eye removal unearthed a microcosm that spanned the variety of ways people perceive disability. My usual announcement went something like this: "I'm having my eye removed. Sounds way more dramatic than the reality. It's no big deal especially since it doesn't really work."

Reactions fell into three basic and to me predictable categories. The broadest group was composed of people who tell me I'm amazing for accomplishing basic tasks, see blindness, etc., as a burden, and tend to cast me as heroine in the drama of my life. Even though I tended to tell such people in a manner designed to prevent strong responses, some managed to do so with such gems as repeated cursing. For them, my eye removal represented a Major Tragedy.

Then there were the collection of people who know me and have come to view my blindness as something that makes me different. While they do not believe my life to be tragic, they still often see me as inspiring. Their reaction tended to be less intense; along the lines of "Wow. That sucks. I'm really sorry." In other words, Copious Concern.

Finally there are close friends who tend to accept blindness as a fact of my life needing to be taken into consideration but not pitied. They said things like, "I know you don't use it, but that is going to kind of suck." I mentally dubbed this group Sensibly Sighted.

Because these were friends, I allowed the announcement to turn into a dialogue. "It's just an eye and takes about the same time to remove as an appendix. Seriously, it's no big deal." The conversation typically ended when I proclaimed, "It just seems like a major thing to you because you use your eyes."

In my mind, surgery engendered more upset than the organ's loss. The short procedure time, outpatient status, and my own lack of attachment to the body part made me pretty much blasé. I mostly kept thinking, "Get this thing out of my head already." Others' reactions were dismissed as just sighted people showing their own attachment to a body part upon which they relied. A small voice in my mind sometimes added "too much."

Now, as my recovery crawls along in the dust of snails, I have come to realize that the human body's response is more in keeping with the Sensibly Sighted and possibly even warranted Copious Concern. Seemingly, removal of a body part, working or not, upsets your system. Who knew?

When I expressed this surprise to a friend, he said, "Jen, I mentioned it might be a big deal." My response was some sort of muttered reference to his bias because of sight. Luckily my friend was gracious.

To me, this physiological response constitutes betrayal on the part of my body. I have no attachment to the orb, but my physical self refuses to get with the program. Apparently blood and tissue haven't absorbed my beliefs about disability through their cell membranes.

Sometimes I need to behold my own life not through the eyes of disability, but with a more fundamental understanding that loss is loss and theory cannot repair cut muscles and swollen tissue. Seems pretty simple in hindsight.

PTSD

I have some very personal experience with Post Traumatic Stress Disorder (PTSD) that, even after successful treatment, sometimes impacts my life. Typically, PTSD develops after an individual survives a traumatizing experience and only afterward has a reaction to that event. Those who are raped and combat soldiers are most often thought of as people at risk for PTSD, but it is also widely recognized as a possible consequence of emotional, physical, or sexual abuse, neglect, violent crime, natural disaster, and the events of 9-11. Symptoms of the condition vary widely, but are generally depression, inappropriate fear response to specific situations, flashbacks, body memories, and nightmares. That was my experience of PTSD, at any rate.

MY PTSD was not a result of any of the circumstances I listed above. Instead, mine evolved about five years after I stopped having reconstructive surgery, and was a direct result of how I handled (or in this case didn't handle) what happened to me. (The entry "What My Classmates Never Knew" describes my medical history.) The PTSD exploded onto the scene when an interviewer asked me a simple question, "How did all that hospitalization effect who you are now?" My stomach fell into my shoes and a floodgate opened with memories pouring forth day and night.

Any little thing – word or even a specific texture of plastic – could trigger a swamping of my mind with events of the past. Body memories are a kind of flashback with which I became very familiar. It goes beyond remembering to actually experiencing the physical sensations associated with the memory. Some completely lose touch with their current reality and the remembrance is all they know, but I didn't have that experience. Instead, I recall making my hands into fists and focusing very hard on just breathing because somebody happened to mention needles. I avoided one specific plastic food storage container because of the shape of the rim evoking memories of oxygen masks held over my face. There was one January day where my roommate held me for a very long time because I couldn't stop the memories from coming one after another.

With therapy, I learned to control the memories and work through what I had experienced as a child. Ironically, an emergency appendectomy aided in my healing in ways I still do not fully understand. I guess it has something to do with going through a medical situation that was 100% necessary for survival and coming out the other side without experiencing the kind of trauma I did as a child. Whatever the case, one year after it all came pouring out I was getting better.

To be clear, better does not mean gone. I do not know anybody who has dealt with PTSD who does not from time to time have a disproportionate fear response to something or the occasional nightmare. Current life events can sometimes drag up old issues and things get "interesting" for a time. At the moment, that is the case for me. One of my eyes is misbehaving and, though it has no useful vision, it still lives in my head and can develop problems. Of course – and this happens to me a great deal of the time – the doctor has no idea what might be actually causing the symptoms, so I have been making rounds of experts, including a totally weird but incredibly brilliant ear, nose and throat specialist, to determine if my facial structure anomalies explain current symptoms. Fortunately his quirks were an intriguing distraction whereas the ophthalmic plastic surgeon was fear-invoking. At the best of times, this species of doctor makes me want to scream and this one found it necessary to start discussing how a "cap" on the eye not giving me trouble could be beneficial.

Now surgery looms on the horizon, filling me with instinctive fear. Some days I think my emotions are irrational and perhaps I should be declared the literal kind of insane. Other moments find me proud because I have managed to not have a single nightmare. Part of the problem is that I have no idea how freaked out a "normal" person would be about current circumstances. Am I just the usual amount of scared or something beyond that?

I know my childhood medical experiences and the resulting PTSD will be a part of me throughout my life. My appendectomy helped me realize I can manage a difficult situation without it resulting in trauma. Perhaps this surgery will be the time and place where I realize that the part missing from me being "better" is me declaring it to be so.

Doing it with Grace?

I've always wanted the word "graceful" to describe how I live through the Hard Things life throws my way. At its core, this desire is based not on how I perceive my own actions, but the subjective interpretations of others. In many ways this contradicts the stance I have taken that I care little for what others think. Guess what? I'm contradictory.

This desire to be seen as graceful during stressful events stems from more than one source. First, I do not want to disappoint anybody. The praise I receive for my strength feels like a burden that I must shoulder while fighting my way through troubled waters. It doesn't help that I am one of the above-mentioned "anybodies" who I am afraid of disappointing. When life gets hard, I feel like a newly blinded person walking an obstacle course, increasing my feelings of inadequacy--for who wants to feel as though they cannot manage to cope with their life without crashing into everything in proximity?

Oddly enough, I cannot actually articulate what it would look like to live through a Hard Thing with grace. Does that mean I don't complain? Am I supposed to avoid self-pity and always seem totally alright? Maybe I get to fall apart but only a little bit on alternate days. Perhaps I can cry but only if it doesn't make my eyes red? I want to behave in a manner I cannot even describe, which highlights the ludicrousness of the entire thing.

Turning to the dictionary for help proved to be rather useless. Abstract definitions of graceful, such as "characterized by elegance or beauty" offer nothing concrete. By whose yardstick do we measure elegant, and isn't beauty in the eye of the beholder?

Next, I tried talking to my yoga buddy to see if I could verbally express the state I wished to reach, coming up with things like "never fall apart," "never complain," "don't need anything," and "always be positive." As the words passed my lips, I heard their failings. Not showing others how I feel is a type of dishonesty I endeavor not to commit. Furthermore, I lack the ability to be entirely self-sufficient and my sense of humor, with its sarcastic tendencies, is not suited to perpetual sanguinity. If those phrases describe grace, I am not capable of exhibiting it.

TV and film offer a plethora of examples of people living through Hard Things with grace almost as if they pass through the experience protected by the emotional equivalent of Teflon. Whenever I watch such things, I feel judgment pouring out of the television directly at me, a dented frying pan with a surface so scratched that half the scrambled eggs stick to the bottom. There has to be some middle ground between damaged to the point of uselessness and so pristine that nothing has penetrated.

A friend observed that those who stoically live through tribulations are often praised because they make witnesses feel better. Not only are the observers spared from watching someone in pain, but they are comforted by the idea that should they have a similar trial in their lives it will be equally routine.

In the above I may have finally found some useful truth. Relentless optimism in the face of a difficult situation ignores part of the experience life is offering. Life's Hard Things are meant to make us feel a myriad of emotions, and relentlessly wallowing in the negative is considered unhealthy. Perhaps it is equally destructive to remain determinedly positive, for there is no joy without sorrow and no sorrow without joy. Maybe, just maybe, allowing yourself to feel whatever happens to grow within your heart is true health. It's possible that truly living means you must fully experience every emotion. Could true grace be following a course through turbulent waters that zigs and zags while you maintain the certainty that you will reach your destination on the other side?

Now I don't have a word to describe the quality I wish to possess while I wend my way to the other side of a Hard Thing, but I finally know its nature and that I possess the ability to engender it in my life. I want to embrace all the emotions that pass through me and express them without the clutter of self-judgment. Though mine might be sarcastic and ironic at times, I know humor must be a part of it. And through it all I will possess the bone-deep belief that I will get to the other side having lived all of it – the good, the bad and the comical.

All this is simply words on a screen that mean little unless I can actually do it in the face of a Hard Thing. Well, I am in the middle of such an experience, and in fact wrote this entry to try and sort out my feelings. One of my eyes has decided to use pain as its means of expressing a desire to no longer be of this earth. Removal in some form is on the horizon, and my attitude has not been what I would like. I now have a clarity about how I wish to live this next little part of my life. May clarity go further than the end of my nose.

Absurdities

Like everything else, humor comes in all shapes and sizes. This month's first story falls into the category of so bad that it passes into the realm of absurdity. It came to mind when I was writing the history of my medical situation.

The summer I turned 18 I had my jaw surgically broken and wired shut. Because I only breathe through my mouth, there were concerns about oxygen supply, so they did a tracheotomy. (They cut a hole in your windpipe and insert a tube through which you breathe.) The two unexpected consequences were pneumonia and an inability to speak. All the coughing you would expect with pneumonia happened through that trach up to and including bloody mucus.

This surgery took place in Virginia a couple of hours from my Aunt's home. While I was at the hospital, my sister and a cousin (not the Aunt's child) visited with my Aunt and her kids. For better or worse, in my family, people are "protected" by not being told negative things if they are already in a stressful situation.) Therefore, it was only after I was discharged from the hospital and we went to retrieve the two visitors that we learned my sister had broken her foot. For the eight hour trip home in our little car, we have me coughing up a storm in the front seat while my sister had her foot propped up in the back and my cousin was wedged in somehow.

Having your jaw wired shut means liquefied food. Since I was unable to even drink, I used a huge syringe to suck my meal up and then squirt it into the back of my mouth. Our long trip home necessitated a stop for food. Picture this: we were in a restaurant with my sister on crutches and me with a trach, coughing constantly, while consuming pureed clam chowder with a syringe and trying to communicate with gestures.

The story gets better. Mom must have been very stressed out and consequently speeding because we were pulled over by a cop. Poor cop. Poor Mom. I engaged in some strategic coughing and my sister and her huge white cast were easily visible in the back seat. The officer let her go with just a warning. The second time – yes, you read that correctly – it was the dark of night and the officer new my family slightly. I guess coughing wasn't sufficient to sway her because that time Mom received a ticket.

The second story has no tragic elements, instead offered to leave you on a cheerful note in case the above didn't fill you with hilarity. After reading a previous entry, a friend of mine reminded me of this event's occurrence though I still cannot clearly bring it to mind.

The basic story will be familiar to you. We were hanging out in a coffee shop and a woman engaged us in conversation. She went on about how nice it was that my companion helped me. My friend fielded these comments as graciously as possible while avoiding continued conversation. Eventually, the woman went away.

When my friend went to the counter to get drinks, the woman approached her again and said, "Oh, it's so nice how you help her."

My friend replied, "She's my friend. I do things for my friends. They do things for me."

"You're just such a great person," the woman enthused, "what do you enjoy most doing for her? What makes you feel the best about yourself?"

With a straight face, my friend answered, "Oh, well, just before I leave I re-arrange all the furniture and the thought of her stumbling over it gives me great pleasure." Not waiting for a response, my friend walked away.

I am running out of amusing tales with which to regale all of you. If it's not too much trouble, send out some vibes that will encourage people to do wacky things. After all, it will at least make me laugh -- always a worthwhile endeavor.