Doubt Should be a Four Letter Word

I have been trying to wrap my head around how years of chronic illness may have subtly and not so subtly shaped my thinking. Recently, I stepped down as co-coordinator of San Diego Bisexual Forum and with all this free time, I'm pondering how to occupy myself.

Over the past few years, a pattern has emerged in my life. Summer-like weather is accompanied by a surge in energy and each year there's a little more than the last. About the beginning of April, I start considering how I wish to spend this "excess." The first time around in 2007, I simply enjoyed being able to do more than normal. In 2008, I became involved with Bi Forum. Last June I decided to start this blog. And this year? I'm having a crisis of confidence. Doubt fills me at every turn.

Nineteen years of chronic illness has taught me to discount whatever I want as soon as the thought pops into my mind. Noting perfect beach weather, I begin the list of cons immediately. Walking on lose sand makes my hips hurt. Cold water isn't much fun. Sand gets everywhere. It takes energy to clean up stuff later and I'm already tired. Besides, it takes a car to get there. With all that, I no longer want to go to the beach. I want a nap.

As anyone in shoes similar to mine will tell you, doing too much or pushing yourself too hard risks making your symptoms worse. Unfortunately, there is no precise formula by which you can determine the value of "too much" or "too hard." Moreover, those values change constantly based on what seems like an infinite number of factors. Educated guesses can be made, but it is no more an exact science than solving the chicken or egg quandary. Thus, if I don't talk myself out of wanting to do something, I still have no way to know for certain that going for it will not worsen my symptoms.

And then there's how chronic illness impacts confidence. The skills and talents necessary to build a group from the ground up are not those used to manage a chronic illness. While I was unable to get off my couch, any gifts I did not use to cope with that situation atrophied and as with a limb that has not been used for a prolonged period of time, the chance it will hold your weight at first attempt is miniscule. Until I actually try, I have no way of knowing if my abilities have vanished while I was in survival mode.

One of the ways humans know about their skills and talents involves affirming feedback. When we succeed, we not only directly see the positive effects, but also we receive accolades for our efforts. With chronic illness, there is no real way to shine. Getting off the couch, managing to shower, and et three square meals in one day is just not fodder for building self-confidence

Here I am contemplating endeavors I have never tried before. My mind is well practiced at generating all the potential problem areas. I have vivid images gained from experience illustrating how bad it can get if I push too hard or do too much. I'm hoping atrophied mental muscles will meet a challenge, though I lack concrete evidence. To top it all off, I have no recent evidence of success in the areas I am considering attempting.

Knowing all this is not the same as understanding a means of combating it. Acting in spite of fear and having faith are two possible techniques, but both require emotional energy and fatigue is incredibly insidious.

Besides, the couch and a good book have a power all their own. They call to me and say, "Why try so hard and struggle when you could choose something that makes your life easier? You can feel les tired, not do something that risks your health, and enjoy yourself. Isn't that better?" It boils down to picking a wish that causes every instinct honed over years of living with a chronic illness to jump up and down with objections.

But my heart wants and I cannot totally silence it.

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.

The Rest of the Story

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

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

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

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

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

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

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

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

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

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

Reunion

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

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

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

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

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

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

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

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

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

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