Multiply Chronic Illness by the Power of Two

If you don’t get the title reference, it comes from one of my favorite Indigo Girls’ songs containing the line “Multiply life by the power of two,” which refers to how life alters when you are part of a couple.

When I launched this blog, I promised myself and my readers to be brutally honest about my feelings. An entry has been within me for quite some time that I have avoided writing because it would be emotionally painful. I recently realized that what I find so hard to say might be the most worth saying, so I am forcing myself to do this.

This entry is all about chronic illness, trust, and relationships. For quite a few years, I haven’t dated let alone paired up with somebody. 2009 seems to be The Year of Crushes and has brought a lot of issues to the surface. Living with a chronic illness is one thing, but contemplating somebody else sharing it with me is another thing entirely.

First, let me make something clear: I am scared in every fiber of my being that the health I have attained will vanish into thin air. Who knows why everything came together to cause a shift toward energy, so who knows what will cause a change in the other direction. One false move on my part might just shatter everything I’ve built over the past 3 years. Gone in a puff of smoke. With an unknown return date. AT my sickest, I never planned for things to get better just dealt with the reality before me. Now I try to do the same, but I was much more successful at avoiding hope than I have been at squelching fear. I’m faking acceptance right now wishing for it to become how I feel.

All these crushes have spurred me to contemplate what happens when you toss an unsuspecting person into the mix. Even after eighteen years with this illness, I am still struggling, so what is going to happen to the uninitiated? I don’t have and wouldn’t want the kind of heart that simply shuns romantic attraction to avoid the complications of another sharing my life and therefore my situation. This means I have to consider many other things that engender fear.

A large part of the terror comes from somebody finding out what my life is really like. People typically meet me when I’m out being active, but that is only a fraction of how I spend my time. For the most part, I keep myself entertained with books, television, craft projects, the never-ending task of feeding myself, and thinking. None of this is particularly interesting or worthy of comment. On a bad day where I spend most of the day on the couch there is even less done. On a regular basis , my body is doing something ridiculous such as hurting in a new way, getting infected in a random part, or deciding it hates what I have been feeding it with gastro-intestinal distress as its means of expression. So, not only do I have nothing interesting happening for long periods of time but the events of note quite frequently aren’t topics for casual conversation.

I never know how to answer the routine question, “How are you?” The more complicated “What have you been up do?” is even worse. I never know who wants honesty and if they can understand the truth from the perspective of my reality. My answer to either question might be something like, “Well, I feel like a truck ran over me. The good news is that it didn’t back up and try it again. I’ve read a trashy novel, managed to eat, and took a nap.” That might be fine to tell somebody once in a while, but as a regular response it quickly gets old to say let alone hear. I become a boring, dull person who is seemingly always whining.

By their nature, romantic prospects become more entangled in your life because of the time spent together, activities shared, and waking up in the same bed. What can be glossed over with a “Today has been a bit challenging” cannot be concealed if they were present when you tried to get out of bed and didn’t quite make it.

My chronic illness also effects my mood. It is hard to stay positive when it hurts to open a jar of applesauce that you really need to eat because it is all you can swallow at the moment. I get upset, frustrated, discouraged, and generally pissed off. I am not always perky, playful, clever me. I can be the woman crying on her kitchen floor because she can’t figure out where she put the lid to the ketchup. In addition, one of the fun traits of this illness is depression as a symptom not just a reasonable emotional state based on circumstances. So, at times my mood is horrible no matter what I or anyone else says or does.

While creative management of circumstances can hide a lot, is that such a good idea? Somebody who wants to become a part of my life really needs to know what that entails. However, the reality is frightening to the uninitiated. I find myself simultaneously wanting to describe the worst possible circumstances in brutal detail and hide everything with a smile and clever turn of phrase. Even in this entry I find myself giving examples and descriptions that paint a grimmer picture than what I am currently experiencing. I don’t want anyone, myself included, to forget how bad it can become. At the same time I am attempting to be upbeat and clever in the way I express my concerns and feelings.

My last long-term relationship partly imploded because of my chronic illness’s out of control downward spiral. While it was not one of the top three causes, it played a role. As previously mentioned, I live in fear that the health I have gained will disappear. I am not certain I can handle it happening. How on earth can I know if a significant other can take it? There is no real way to know until it actually occurs meaning a relationship might fall to pieces right after my health falls to pieces. That possibility… Sheer terror.

Though my chronic illness has taught me much, I cannot be certain I would wish it upon myself in hindsight. I do know I would vote for it vanishing into thin air if I could plan my own future. How can I ask somebody to jump into a mess I’d gladly rid myself of at the first chance? Who would sign up for any of this? I know I’m pretty damned amazing, but probably not that uniquely spectacular.

To be honest, I know a person worthy of my affection will by their nature find it hard to watch me cope with my illness. I have given a lot of thought to what it might be like to be in their shoes. First, there must be a lot of frustration and feeling powerless. All the person can sometimes do is see me struggle, hear me cry, or watch as my perky self is replaced by something else. There are times when I have no fight left. Watching me become that person must be painful to say the least.

Then there are pragmatic considerations. Limited energy means I can’t always do things. Sometimes I have to back out at the last minute. Sometimes I need somebody to take care of me. Sometimes I need somebody to know to take care of me even if I don’t ask. And, sometimes I need somebody to be strong and reassuring so I can be weak and scared. Not only will a significant other be present more than friends, but they will be closer to me emotionally. It will be both harder on them and more likely to fall upon them to help in a multitude of ways.

With all this on my mind, it makes sense that I become paralyzed by fear. If I show them the reality, they might get scared off. If I gloss over things, they will stay for the moment but potentially leave when the situation becomes apparent. Even if they can take my current circumstances, who is to say they can take it should my health move in a different direction. Will anybody see the great things I bring to a relationship along with the negatives? Am I certain I should even let somebody I care for take on my life?

For now, I try to be truthful with new people which I find to be challenging. My fears get in the way of words coming out of my mouth. I find myself testing people by giving them a small dose of my reality and watching their reaction. I know this is disingenuous and try to stop myself, but am not always successful.

I thought working on becoming healthier is the hardest thing I have ever attempted. Navigating these waters of chronic illness, trust, and potential romantic relationships is turning out to be just as hard in a different way. In all of this, I know with certainty I must keep moving forward even if I am scared beyond reason and can’t see the place where hard ends. I want a companion besides this constant fear with whom I can build a life.

Playing the Blind Card

Thanks to SW for asking the question leading to this topic.

Aside from the TAB behaviors I’ve previously mentioned, people have a tendency to go to extremes around me with their nice, helpful attitude that manifest in many ways from people running to open a door to drivers who, despite a green light, stop at an intersection so I can cross. (By the way, don’t do that because it’s not helpful. How do I know why you’ve stopped? Will other drivers do the same?)

If my arms were full of stuff, the dash to open a door for me would make sense, but it rarely happens under those circumstances. Similarly, stopping the car is a polite gesture when a sighted person is with me, but otherwise makes the situation harder. I far prefer the reasonable action people in my neighborhood have adopted of calling out that the light just turned green. In other words, balanced behavior that helps is terrific, but when people go to extremes it’s unnecessary and often problematic

I have to be very careful about this tendency of individuals to go above and beyond when it comes to me. I complain about the negative ways people behave because I’m disabled and the positives should be equally abhorrent. Sometimes the perks distract me with the pleasurable possibility and I become a hypocrite – something I loathe. For example, strangers occasionally insist I get in front of them in a line. While that might make sense if my fatigue level is high, it really has no advantage to me as a blind person, which is why it’s done since my chronic illness is hidden. Now, with a long line, who wouldn’t want to cut in front of somebody? I usually try to say no, but people can get weirdly determined I accept. Really determined. Sometimes I don’t refuse simply because I do not wish to battle over it – squanders my time and energy. In fact, I have been known to acquiesce even if the “help” will in actuality be harmful.

There are times and situations where I do need something because I am blind and implying that results in people stumbling over themselves to meet my need. Every so often, I have been known to use this to my advantage when it is not strictly necessary or when my need has nothing to do with me being blind. I refer to this as “playing the blind card.” For example, if I have an item I genuinely need to return and it’s past the specified date, I take the item in myself and see if I’ll get some flexibility. Generally, it works. However, as I said before, I am careful about not exercising the power of my blindness unless absolutely necessary. Doing it for selfish reasons requires complete self-honesty.

Last week I had occasion to play the blind card while planning a bike outing for a group of friends. Since I needed a tandem, I picked an area with a rental place that stocked them. Unfortunately, when I called, I discovered a malevolent spirit rendered every single bicycle inoperative. Suggested places in the area had been similarly plagued. I switched our departure point to a shop that had functional equipment, but when I called to reserve my bike, I was told they didn’t take reservations – definitely suboptimal. After consideration, I called back and begged the bored, dismissive clerk to make an exception. No luck, so I slapped down the blind card. “Look, I’m blind and if I show up and you don’t have a tandem I cannot take part in a group activity.” The very tone of his voice changed and he literally stumbled over his words to accommodate me. I hung up the phone feeling very slimy. Yes, my blindness actually made an exception to the policy reasonable and if he had acknowledge that in the same tone of voice and matter a factly gave me what I needed, it would have been fine. His overly helpful attitude made me feel dirty.

The day of the outing came and the complications that had been plaguing the event continued. I reached my personal limit and cancelled the excursion. I knew I needed to call the bike shop and tell them, but the thought made me sick to my stomach. Channeling a four year old, I let my friend do it and when she called, they said bikes were never reserved and they didn’t know anything about an exception. Perfect. Mr. Helpful apparently slimed all over me and didn’t do what he said.

That is only one example of how playing the blind card can blow up in your face. A more subtle and insidious consequence is that it can perpetuate the idea that a blind individual is not a competent person for if I beg help based on my visual limitations it confirms that I cannot do something. Often that confirmation spills over into other areas causing a person to conclude that, if I can’t do one thing then I cannot do any of the others that their mind imagines. Hence, asking for something with blindness as the reason might mean a less pleasant future encounter. Therefore, occasionally when I need something because I am blind I go without it to avoid reinforcing a TAB’s assumptions. Life can become a very complicated balancing act where what I need must be weighed against the long term consequences of receiving it.

For this very reason, I frequently hesitate to ask new friends for what I need to avoid adding any proof to the image of me as needy, especially if they are teetering on the edge of seeing me as a person versus seeing me as a list of “cannot do”s. Given I’m the type of person who pays attention to how others are feeling sometimes too much, I am keenly aware of how my behavior harmfully impacts attitude. I have been learning to be aware of the effect of my actions and care less about the end result, but this is a process only recently begun.

Yet again we come to the conclusion that I am a work in progress. I guess I’ll be finished with that long about the time I’m dead, which will not happen until I am old, gray, and at least 100. Hey, do you think I can play the blind card to avoid death?

Mrs. O’Neil and SilentJoe

According to a friend, this blog tends to be a wee bit serious. Last month I wrote a post with a lighter theme. I’ve decided to make it a tradition with a little humor the second wednesday of each month. So, the staid entry I scribed over the weekend shall have to wait.

In the winter of 1999, I was dating a man who lived near Boston while I resided in the western part of Massachusetts. Occasionally, I went to stay with him and we would shop at the local grocery store. One such day I waited by our cart and he went in search of something, probably his favorite food – bread. A woman approached me and introduced herself as Mrs. O’Neil. She then introduced me to her son, Joe, who was blind like me. At this point I knew things were going to get interesting.

Joe said absolutely nothing and gave me a hand shake that involved only some of his fingertips. I was probably not the friendliest or most enthusiastic person on the planet at that moment, but compared to him I could have won Miss Congeniality. Easily.

Mrs. O’Neil began extolling Silent Joe’s virtues. He went to college all by himself, was somehow involved with the school’s radio station, and had some nice friends. Mrs. O’Neil was very obviously proud of her little boy.

I uncharitably could not help thinking that I had graduated from one of the Seven Sisters, ran a peer mentoring network for disabled college students, lived one hundred and fifty miles from my parents, and had friends who saw me through think and thin.

Finally, Mrs. O’Neil got around to the point. “You seem like such a nice, lovely young woman. That’s why I brought Joe over to meet you. You two have a lot in common. Where do you live?”

I happily explained, “I live near Amherst, but my boyfriend whom I’m visiting resides right around the corner. He’s off finding something.”

Okay, in Mrs. O’Neil’s place I might have taken that as a creative line designed to brush her off. Apparently, she concluded just that because she kept talking about SilentJoe and me determined to find common ground for us. Whether I liked it or not. SilentJoe surprisingly had no opinion.

I kept replying with “my boyfriend” this and “my boyfriend” that. Eventually, she took herself and SilentJoe off to continue their own shopping.

In discussing the event with my boyfriend, I discovered SilentJoe was also CanelessJoe led around by his Mother. Admittedly, from time to time I go around without my cane, usually because I brought the dog who was sacked out in the car or because I was with the object of my affections and we were holding hands. The hand-holding does not preclude the use of a cane, but sometimes it’s nice to focus on the romance of it all. Normally, even if I’m going sighted guide, I have my cane in the other hand and force myself to use it properly. Sometimes it even saves me from calamity.

In any case, SilentJoe had and still has my sympathies. He was raised by a woman who saw little potential in her blind child and raised him with low expectations. Her pride in her child is admirable, but setting the bar ridiculously low to have that pride is sad. Instead of fostering her child’s independence, she encouraged dependence by leading him without a cane. The fact that he never spoke is truly distressing to me on multiple levels. I hope SilentJoe found his voice and his sense of self.

But today I am suppose to be full of humor not woe and my story has not quite ended. About fifteen seconds after Mrs. O’Neil and SilentJoe departed I heard her voice, then my boyfriend’s. She’d cornered him.

Later he told me she had stopped him, introduced herself and SilentJoe, and asked if he was with me. He answered in the affirmative. She then asked if he was my boyfriend. He indicated that was the case.

This let lose a flood. “Oh, you must be such a nice young man to be dating her.”

My boyfriend by now familiar with the things people do around me replied, “Actually, I’m pretty lucky she’s dating me.”

Mrs. O’Neil would have none of that. “It’s amazing that you take care of her. What a special person you are.”

My boyfriend responded, “WE take care of each other. It’s a good relationship.”

Mrs. O’Neil was as tenacious with her praise of him as she was in trying to set me up with her son saying, “Oh, dear, there’s a place in heaven for you.” At this point, my boyfriend managed to escape.

I have told this story frequently over the past ten years, but it was not until this moment that a question occurred to me. In Mrs. O’Neil’s mind, would my boyfriend of the time lose his place in heaven if he broke up with me? What about if he became an ax murderer later in life? And, um, did dating me erase all bad deeds up until that moment in time? I really want to know the answer to these burning questions.

Everyone’s Just Like Me

I sometimes forget the rest of you aren’t disabled like me. While listening to television, I will hear a character walking down a city street and wonder why I cannot hear the tap of their cane. Friends list what they are going to-do in the coming day and I question how they can even think of such a monumental effort that will leave them exhausted for days. And doesn’t everyone read books with their ears while washing the dishes? Can’t everyone follow directions that would work navigating a route with your cane?

If you think about it, forgetting everyone is not like me shows a certain level of self-acceptance. Many people see their disability in negative terms which makes them keenly aware others do not have such burdens. Others accept their condition with a balanced view of they are always aware that their circumstances are not typical. Crazy little me goes one step beyond that so alright with my situation that I assume the rest of you are happily dealing with it as well. I’m not different because the rest of you are blindly moving through the world making certain you do not exhaust yourselves.

On the other hand, I could just be incredibly self-centered. I am so wrapped up in how I relate to the world that I can’t be bothered to remember the rest of you function differently.

It is also possible the entire thing can be blamed on ingrained behavior. By now, I don’t need to think about what to do when I misplace my cell pone – I call it. I automatically grab my cane when I leave the house. I would never, under any circumstances, put a spice bottle back on a different shelf. I would find it literally impossible to put a clean knife in to the dish rack point up. These adaptive behaviors have reached the level of instincts so no wonder I forget the rest of you function in other ways.

Turn about is fair play and from time to time people forget about one of my disabilities. Usually, they ask if I can smell something and I give a sarcastic answer before laughing.

Unfortunately, when people who do not know me well forget I’m blind and are then reminded, they sometimes say things like, “Well, think of it as a compliment.” That stops my mirth. Apparently, the praise comes from the fact that I function so ell that I do not behave as if I am blind. This means the person has a preconceived notion of what a blind person can do and when I exceed it by behaving like the rest of the human race, I have accomplished some laudable feat. In my mind, surpassing low expectations isn’t achieving some lofty goal. If a woman lifts something extremely heavy, nobody assumes she is a man because women can’t lift great weights. When a high school valedictorian applies to a college, it would be considered racist to conclude they are white. Assuming an Asian person is a computer wiz has become a cliché. So, why should I be flattered when somebody assumes blind people aren’t as competent as the rest of humankind?

This is not to say I am not worthy of praise for I have adapted to my circumstances better than some. I have great coping tools developed over years of refusing to accept those lowered expectations as part of the reality I inhabit. My skills reflect time, energy, creative thinking and obstinacy.

And somehow I’ve managed to end another post by telling you why I should be praised. This has got to stop. Seriously.