Over the past couple of years, as I work to sort out friendships and find some sense of community, I've learned a few things.
1. Friendships need to be equal, balanced, healthy, and reciprocal.
2. Having friendships that aren't these things is ultimately bad for me.
3. I cannot nor should I try to "compensate" my friends for the "hardships" of being friends with me.
4. As a friend, I actually am enough. In fact, in some ways, I sort of rock.
and then there's what I've figured out about social stuff and disability.
1. Most people cannot se past the fact of my disability to see the potential of me as friend.
2. Nothing I do will make me seem more or less tempting as friendship material to someone who cannot see past the fact of my disability.
3. A large chunk of those who see past the fact of my disability to me as a person are interested in friendship because I represent (to them) something as broken as they unconsciously see themselves.
4. a shockingly small number of people see me as a potential friend and also see me as a competent, vital adult.
5. All of this is because of how the world thinks about disability and how that has effected the probably unconscious thoughts of individuals.
If you add up the first and second set of things I've learned, you come up with this: I am going to have a very hard time finding friends, it is something I cannot change through how I behave, and it will lead to social isolation.
I learned an interesting fact last week. It seems that people outside a marginalized group are not very good judges of what it is like to be a part of that marginalized group. Outsiders are not able to assess degree of prejudice, significance of negative stereotypes, or amount of "suffering" marginalized group members "endure" because of their group status. In other words, people who don't have a disability equivalent to mine are not going to get it.
There's this great phrase: Disability is the responsibility of the disabled. For example, I get a print piece of mail. It is not amongst the acceptable options to call up the sender and demand they do something about it. Instead, I'm suppose to find someone to read it to me. Similarly, if I am amongst a group of people who are interacting based on sighted people rules, I am expected to find a way to play by those rules or accept that I will not be included. Should people in the group actually alter behavioral patterns so I can participate, it is done as a kindness not as a "no brainer" because of course you play by rules everyone can follow.
So, people are unlikely to see my social isolation as an artifact of disability and if they do, chances are they see it as a problem I should fix or tolerate because I'm the one with the disability.
Here's the funny thing: if you look at the social model of disability, where disability is a factor of how the world works, then the very world that is the architect of my situation refuses to do anything to deal with it. Should you look at disability from the medical model, where functional limitations based on physical difference cause disability, I am still not to blame for my circumstances, yet I am left to cope with their impact.
Now here's where I don't know if I'm being fair or reasonable. I'm angry and frustrated, and disappointed in the people who express affection toward me. The vast majority have consciously or unconsciously left me to deal with all of this on my own, yet supposedly care about me and my happiness. They will guide me around obstacles, read menus, and put up with guide dog fur in their cars, but they will not do anything to alleviate what I consider possibly the most fundamentally distressing consequence of disability in my life – soul eating social isolation.
Moreover, any efforts on the part of others to mitigate the situation have to come from a place of love and understanding not obligation and pity. I cannot beg, offer brownie bribes, or barter bread for behavioral changes. People either get it or they don't. they either do something or they don't.
In the past year, I have pruned friendships that weren't working well. I have tried to back off from the friends I have retained because constantly asking for time and attention finally struck me as unhealthy. Should I go through another round of trimming based on those who understand and help mitigate my isolation and those who do not, I'll be down to about four friends. I'm pretty sure that's not enough for an extravert, even a shy extravert.
Showing posts with label relationships. Show all posts
Showing posts with label relationships. Show all posts
Tuesday, November 22, 2011
Wednesday, May 25, 2011
Does It Serve Me Well?
I came across a question reading Confessing Queer. Does the culture in which I find myself serve my mind, body, and heart? The quick answer is no, but I believe the longer explanation bares elucidation.
In this case, culture refers to what we as a people believe, the standards by which we collectively judge the world around us, and what we expect from individuals. We are an industrialized, productivity-oriented, evaluation based on results society where what you can do is highly valued along with how you look. Though pluralistic, democratic principles permeate our social fabric so that even outside of government, majority rules.
Does this mindset positively impact my mind, body, or heart? I don't produce, achieve expected results, or even do things in the usual, efficient ways. I look different, want different, and feel different.
Think about that for a minute. I live in a world that, by its nature, says I am of lesser value because I do not produce, am a failure since I need help, and take up valuable resources. On an individual level, a child raised with such negativity would not thrive nor would anyone expect it. How, then, is it any less damaging to an adult when her society believes it?
I am beginning to confront some painful realities and not liking it much. I tend to kick and scream my way through such a process. It is messy, unpleasant, and deepens my sense of isolation. But, well, moments of revelation come when they come and working through things happens without one's convenience or comfort in mind.
The revelations are these: I will have medical issues cropping up routinely for the rest of my life because I am medically fragile. The things I want – either because I was taught to or genuinely want them – such as home, family, and avocation are not statistically likely. In fact, they are very unlikely. Finally, hard isn't a word to describe a period of my life but a word that will describe the rest of my life.
Have I depressed you yet? That's not my intent. My point is that I inhabit a specific reality that means certain things and I should really accept them so I can stop making myself miserable. Medical issues aren't bad unless I buy into the idea that they are. It is possible to learn to want other things that are more likely. A hard life is not a bad life.
I spent years clearing society's beliefs about beauty out of my head and heart. Somehow I seem to have left many ablist beliefs that do not serve me well. It's time to do more than just decry them from the pages of this blog. It's time to actually stop believing them.
In this case, culture refers to what we as a people believe, the standards by which we collectively judge the world around us, and what we expect from individuals. We are an industrialized, productivity-oriented, evaluation based on results society where what you can do is highly valued along with how you look. Though pluralistic, democratic principles permeate our social fabric so that even outside of government, majority rules.
Does this mindset positively impact my mind, body, or heart? I don't produce, achieve expected results, or even do things in the usual, efficient ways. I look different, want different, and feel different.
Think about that for a minute. I live in a world that, by its nature, says I am of lesser value because I do not produce, am a failure since I need help, and take up valuable resources. On an individual level, a child raised with such negativity would not thrive nor would anyone expect it. How, then, is it any less damaging to an adult when her society believes it?
I am beginning to confront some painful realities and not liking it much. I tend to kick and scream my way through such a process. It is messy, unpleasant, and deepens my sense of isolation. But, well, moments of revelation come when they come and working through things happens without one's convenience or comfort in mind.
The revelations are these: I will have medical issues cropping up routinely for the rest of my life because I am medically fragile. The things I want – either because I was taught to or genuinely want them – such as home, family, and avocation are not statistically likely. In fact, they are very unlikely. Finally, hard isn't a word to describe a period of my life but a word that will describe the rest of my life.
Have I depressed you yet? That's not my intent. My point is that I inhabit a specific reality that means certain things and I should really accept them so I can stop making myself miserable. Medical issues aren't bad unless I buy into the idea that they are. It is possible to learn to want other things that are more likely. A hard life is not a bad life.
I spent years clearing society's beliefs about beauty out of my head and heart. Somehow I seem to have left many ablist beliefs that do not serve me well. It's time to do more than just decry them from the pages of this blog. It's time to actually stop believing them.
Wednesday, March 2, 2011
The Body Complicated
I am my body and my body is me, no more distinguishable as two "parts" than water's components can be perceived as hydrogen and oxygen by the tongue. This body that is me, that I inhabit fully, is at the center of a multitude of complicated relationships. There is the body I dwell in and the distorted image reflected back to me from others as if viewed in a fun house mirror. There is the body I know and there is the construct that has seemingly constant medical issues. There is the body I occupy and the shape the symptoms of my illness outline. There is even this body I inhabit and the form revealed to me by the hands of a lover.
The friend of my body finds the strangers of image, construct, shape and form to be alien. Yet still they tangle together in my mind hard to distinguish from one another.
Sometimes even my fingers forget who is friend and who is foreign. They may slide over the same skin, but they sense a radically different typography. One is the familiar smooth skin over muscle and bone that contains strength, determination, passion, and playfulness. Depending on the circumstances, my fingertips will encounter something else. Sometimes it's scars, asymmetry, and flab that compose an ugly, damaged image. Sometimes they feel that which is underneath the skin and constantly going awry. Sometimes they sense all the aches and pains, stiffness and tenderness of a sick shape. And sometimes they even discover the swells and valleys, softness, warmth, and sensitivity of a sensual form. And though one is friend and the rest alien, I mistake one for the other more often than even I know.
While it is clear that the reflected image, medicalized construct, and sickened shape are unwelcome in my head, you would be surprised at how often I do not welcome the sensuous form. It acts as a reminder that no eyes are looking upon it with desire, and no hands enjoying its contours. There is no wanting, no intimacy, and no affection. When this stranger comes to me, the loneliness that wells up pushes tears from my eyes and sorrow deep down into my soul.
Unlike the reflection, construct, or shape, I would make friend of this stranger if only it wasn't a painful reminder of that which I do not have. In the moments when I think maybe, just maybe I can call it friend, something acts as a reminder that it's not possible. At best, we are acquaintances having extraordinary trouble becoming closer. At worst, the companion I long for hurts me in a way unable to be soothed.
The friend of my body finds the strangers of image, construct, shape and form to be alien. Yet still they tangle together in my mind hard to distinguish from one another.
Sometimes even my fingers forget who is friend and who is foreign. They may slide over the same skin, but they sense a radically different typography. One is the familiar smooth skin over muscle and bone that contains strength, determination, passion, and playfulness. Depending on the circumstances, my fingertips will encounter something else. Sometimes it's scars, asymmetry, and flab that compose an ugly, damaged image. Sometimes they feel that which is underneath the skin and constantly going awry. Sometimes they sense all the aches and pains, stiffness and tenderness of a sick shape. And sometimes they even discover the swells and valleys, softness, warmth, and sensitivity of a sensual form. And though one is friend and the rest alien, I mistake one for the other more often than even I know.
While it is clear that the reflected image, medicalized construct, and sickened shape are unwelcome in my head, you would be surprised at how often I do not welcome the sensuous form. It acts as a reminder that no eyes are looking upon it with desire, and no hands enjoying its contours. There is no wanting, no intimacy, and no affection. When this stranger comes to me, the loneliness that wells up pushes tears from my eyes and sorrow deep down into my soul.
Unlike the reflection, construct, or shape, I would make friend of this stranger if only it wasn't a painful reminder of that which I do not have. In the moments when I think maybe, just maybe I can call it friend, something acts as a reminder that it's not possible. At best, we are acquaintances having extraordinary trouble becoming closer. At worst, the companion I long for hurts me in a way unable to be soothed.
Saturday, January 1, 2011
What 2010 Taught Me
As all of you know, 2010 has been quite the year for me. With medical insanity around every corner as well as personal tragedies, I sometimes wondered if I would survive the onslaught. At the turn of the year, I'm permitting myself to engage in a wee bit of introspection because as you know, I am never otherwise reflective
1. Though I knew I possessed emotional strength, the events of this year showed me a resilience I not only didn't know I possessed, but I didn't imagine existed in mere mortals. I amazed myself. And, yes, I said amazed.
2. My health can take a beating and I will recover, so I do not need to live in mortal fear of the next medical issue's destructive impact.
3. Friendships might be even more complicated than romantic relationships.
4. I never regret following my heart. Now if only my brain had an off switch.
5. The things I thought I was good at are things I now KNOW I am good at. I have skills and talents that possess the ability to impact more than just myself in a positive way.
6. Laughter can transform, heal, and pretty much save sanity.
7. I can truly and completely fall to pieces and the only person needed to put myself back together is me.
8. If you view the actions of now as the story you will look back upon in years to come, it is sometimes easier to find your way through muddy waters. This year I have learned that when I get stuck, I need only ask myself, "How do I want to remember this moment?" and suddenly things become clear.
9. People, myself included, often hold back from going the extra mile for a "friend" because they believe that person would not do the same for them. I have come to realize that it is more about making sure you go the extra mile for those you know will do the same in return. It's not about who isn't going to do what. It's about lavishing attention on those you want to be a part of your life. Making it about opening up your heart and giving freely feels much better.
10. A year full of Hard Things can also be the best year you have ever lived. 2010 has been that for me.
1. Though I knew I possessed emotional strength, the events of this year showed me a resilience I not only didn't know I possessed, but I didn't imagine existed in mere mortals. I amazed myself. And, yes, I said amazed.
2. My health can take a beating and I will recover, so I do not need to live in mortal fear of the next medical issue's destructive impact.
3. Friendships might be even more complicated than romantic relationships.
4. I never regret following my heart. Now if only my brain had an off switch.
5. The things I thought I was good at are things I now KNOW I am good at. I have skills and talents that possess the ability to impact more than just myself in a positive way.
6. Laughter can transform, heal, and pretty much save sanity.
7. I can truly and completely fall to pieces and the only person needed to put myself back together is me.
8. If you view the actions of now as the story you will look back upon in years to come, it is sometimes easier to find your way through muddy waters. This year I have learned that when I get stuck, I need only ask myself, "How do I want to remember this moment?" and suddenly things become clear.
9. People, myself included, often hold back from going the extra mile for a "friend" because they believe that person would not do the same for them. I have come to realize that it is more about making sure you go the extra mile for those you know will do the same in return. It's not about who isn't going to do what. It's about lavishing attention on those you want to be a part of your life. Making it about opening up your heart and giving freely feels much better.
10. A year full of Hard Things can also be the best year you have ever lived. 2010 has been that for me.
Wednesday, November 10, 2010
The Contents of a Heart
Oprah proclaims, the Flirtations sing, and our parents teach us that the most important thing in life and the measure of our worth is the quality of the intimate relationships we form. This lesson takes the emphasis off the superficialities of economic status, professional achievements, race and background to focus on who we are as people. It stresses love as the purpose of living and is meant to make us kinder, more caring individuals.
Currently the trappings of success are not evident in my life, so this lesson should be a comfort to me: my disability limits my energy not my heart's ability to care about others. And, yet, instead it seems to mock me. I could be a saint, but few would know. I could be filled with hate, but this too would be rarely known. Without basking in my kindness or withering before my malevolence, how can the nature of my heart and therefore the quality of my love be witnessed? It's like the proverbial tree falling in the woods with nobody to hear it.
I have given this conundrum careful consideration and realized its inherent irony: I lack the trapping of success in my life and this only emphasizes more my difference. For whatever reason, that difference makes people les likely to see me as potential friend. With fewer friends, the contents of my heart is evident less.
So, what's a person to do? My handful of friends get a lot of attention for I have time to listen and space in my head to keep track of important things in their lives. When one bemoaned her inability to do the same for me, we thrashed it out and discovered it is all about math. People have a specific amount of attention to lavish on others. This amount is defined by both the character of their heart and the busyness of their lives. It is then apportioned out amongst their friends – more friends translates into less resources for each person. Most won't simply spend this fixed amount on each friend they have, but devote more to some and less to others. While detached and calculating, this theory explains why people with a vast circle of friends often bemoan not having many intimate connections. And while it also makes clear why my friends say I spoil them, it hasn't solved my problem.
I have made an effort to look for ways I can extend kindness to relative strangers such as baking treats for a memorial service or offering support to somebody I thought needed it. The person thought I was weird and the jury is out on the cookies. I have tried enlarging my circle of intimates by how I interact with friends of friends. No luck yet. Short of hanging out a sign advertizing myself as a stellar friend, I am out of ideas, so I ruminate on the cause.
Over time, I have noticed a decrease in the number of people who have obviously misguided notions of disability. Total silence upon forced interaction with me is no longer the norm. The offer of a guiding arm has increased and being dragged by some body part decreased. Tolerance is on the rise and fills me with joy. People beating down my door to become a part of my life has yet to happen. Why?
Whether it be from school assemblies on how to interact with other disabled students, picking up tips from watching movies, or experience, people have more information about how to behave with a disabled person which explains the increase in positive casual encounters. An understanding of what it means to be disabled does not come with knowing to face a Deaf person when speaking or that service dogs should not be distracted from their jobs. This lack of understanding seems to be at the core of my dilemma.
Since I have always been disabled, I can only offer educated speculation. I used to think people rejected me as potential friend because of the hassles my disability would inherently create – I can't drive to meet them, they might need to function as sighted guide, and who knows what else. While this is probably true in some cases, over the years I have come to realize it is usually more basic. Most people think of disability in terms of what it means the individual cannot do. This laundry list is a barrier through which it is hard for a disabled person's assets to be perceived. When they meet me, people think about all I cannot do because I cannot see as opposed to noticing my quick wit or empathetic tendencies. It isn't a matter of me being considered for friendship and rejected. It is a matter of me never being in the running because I am not a person but a collection of inabilities.
This explanation offers comfort in that it is clear this has nothing to do with me. Unfortunately, the potential solution is time. Just as people have become more educated about how to behave around a disabled person they will also begin to see past the barrier of inabilities to the person. Then I will have a chance for my value to be defined by the love I bestow. Until then I am left to spoil those in my life and ponder the wording of that "stellar friend" billboard.
Currently the trappings of success are not evident in my life, so this lesson should be a comfort to me: my disability limits my energy not my heart's ability to care about others. And, yet, instead it seems to mock me. I could be a saint, but few would know. I could be filled with hate, but this too would be rarely known. Without basking in my kindness or withering before my malevolence, how can the nature of my heart and therefore the quality of my love be witnessed? It's like the proverbial tree falling in the woods with nobody to hear it.
I have given this conundrum careful consideration and realized its inherent irony: I lack the trapping of success in my life and this only emphasizes more my difference. For whatever reason, that difference makes people les likely to see me as potential friend. With fewer friends, the contents of my heart is evident less.
So, what's a person to do? My handful of friends get a lot of attention for I have time to listen and space in my head to keep track of important things in their lives. When one bemoaned her inability to do the same for me, we thrashed it out and discovered it is all about math. People have a specific amount of attention to lavish on others. This amount is defined by both the character of their heart and the busyness of their lives. It is then apportioned out amongst their friends – more friends translates into less resources for each person. Most won't simply spend this fixed amount on each friend they have, but devote more to some and less to others. While detached and calculating, this theory explains why people with a vast circle of friends often bemoan not having many intimate connections. And while it also makes clear why my friends say I spoil them, it hasn't solved my problem.
I have made an effort to look for ways I can extend kindness to relative strangers such as baking treats for a memorial service or offering support to somebody I thought needed it. The person thought I was weird and the jury is out on the cookies. I have tried enlarging my circle of intimates by how I interact with friends of friends. No luck yet. Short of hanging out a sign advertizing myself as a stellar friend, I am out of ideas, so I ruminate on the cause.
Over time, I have noticed a decrease in the number of people who have obviously misguided notions of disability. Total silence upon forced interaction with me is no longer the norm. The offer of a guiding arm has increased and being dragged by some body part decreased. Tolerance is on the rise and fills me with joy. People beating down my door to become a part of my life has yet to happen. Why?
Whether it be from school assemblies on how to interact with other disabled students, picking up tips from watching movies, or experience, people have more information about how to behave with a disabled person which explains the increase in positive casual encounters. An understanding of what it means to be disabled does not come with knowing to face a Deaf person when speaking or that service dogs should not be distracted from their jobs. This lack of understanding seems to be at the core of my dilemma.
Since I have always been disabled, I can only offer educated speculation. I used to think people rejected me as potential friend because of the hassles my disability would inherently create – I can't drive to meet them, they might need to function as sighted guide, and who knows what else. While this is probably true in some cases, over the years I have come to realize it is usually more basic. Most people think of disability in terms of what it means the individual cannot do. This laundry list is a barrier through which it is hard for a disabled person's assets to be perceived. When they meet me, people think about all I cannot do because I cannot see as opposed to noticing my quick wit or empathetic tendencies. It isn't a matter of me being considered for friendship and rejected. It is a matter of me never being in the running because I am not a person but a collection of inabilities.
This explanation offers comfort in that it is clear this has nothing to do with me. Unfortunately, the potential solution is time. Just as people have become more educated about how to behave around a disabled person they will also begin to see past the barrier of inabilities to the person. Then I will have a chance for my value to be defined by the love I bestow. Until then I am left to spoil those in my life and ponder the wording of that "stellar friend" billboard.
Sunday, October 24, 2010
Now and Then
I have been poking around in this blog reading old entries and came across Multiply Chronic Illness by the Power of Two. Several realizations struck me simultaneously.
Last year, I was terrified that something would transform my current health status into a creature far harder to handle. What I had achieved felt as fragile as spun glass. Looking back on 2010, I have experienced so many health-related attacks on my body that I actually lost count, yet I'm still here and have bounced back. Was 2010 all about me learning that my health isn't as tenuous as I fear? Do I have more physical resilience than I realized?
Somehow though this year has embodied medical insanity, I look back and have an impression not of spending days and days on my couch, but of spending finite periods. While my health might have loomed large and felt overwhelmingly out of control, it has only been a part of my life not my entire life. Perhaps the vast amount of it caused me to stop focusing on it in order to not lose my mind. Maybe in crisis I found a new way to be happy. I'm still not certain, but I am not objecting.
Besides a sense of physical resilience, I have recently been surprised – dare I say amazed – by my emotional elasticity. Long about August of this year, I had taken a few too many emotional blows and was just trying to not fall apart. Then I had to put my dog to sleep and totally lost it. I went beyond numb to a state I can best describe as utterly empty. Things did get better, but I didn't reflect upon it until mid September when I suddenly realized I felt like myself. I'd recovered faster and more completely than I thought possible for anyone let alone myself.
Perhaps because I feel more physically resilient, maybe because I have a sense of emotional strength, or possibly because I'm happier, I am not nearly as terrified to share my life with another person. Yes, there are definite challenges, but several of my concerns no longer ring true. For example, I have more going on in my life than books and crafts. Last week alone I left my house seven times exclusively to be social. No longer do I worry about being duller than burlap. Now it's more like tarnished metal.
Another shift has crept up slowly. Now I am able to predict my health status making a marked difference in how I approach life. Planning for future activities happens without having to think, "Will I be healthy enough?" A future filled with more than my couch and cotton candy entertainment seems likely.
Even this blog has made a difference. When asked what I do, I say, "Write a blog about disability stuff," and it feels like enough. I contribute to the world in a way that matters, at least to me.
Some things are still the same, such as how I address the issue with someone. Do I let them see the entire reality immediately or gradually? Who would sign up for this? Would I be able to stomach allowing someone I cared for to join this insanity?
Relationships are hard and they fail often with far less in the way of built-in stressors. Can I really hope to have one that lasts a lifetime? Maybe. Just maybe. That's a different answer than I would have given even six months ago.
Last year, I was terrified that something would transform my current health status into a creature far harder to handle. What I had achieved felt as fragile as spun glass. Looking back on 2010, I have experienced so many health-related attacks on my body that I actually lost count, yet I'm still here and have bounced back. Was 2010 all about me learning that my health isn't as tenuous as I fear? Do I have more physical resilience than I realized?
Somehow though this year has embodied medical insanity, I look back and have an impression not of spending days and days on my couch, but of spending finite periods. While my health might have loomed large and felt overwhelmingly out of control, it has only been a part of my life not my entire life. Perhaps the vast amount of it caused me to stop focusing on it in order to not lose my mind. Maybe in crisis I found a new way to be happy. I'm still not certain, but I am not objecting.
Besides a sense of physical resilience, I have recently been surprised – dare I say amazed – by my emotional elasticity. Long about August of this year, I had taken a few too many emotional blows and was just trying to not fall apart. Then I had to put my dog to sleep and totally lost it. I went beyond numb to a state I can best describe as utterly empty. Things did get better, but I didn't reflect upon it until mid September when I suddenly realized I felt like myself. I'd recovered faster and more completely than I thought possible for anyone let alone myself.
Perhaps because I feel more physically resilient, maybe because I have a sense of emotional strength, or possibly because I'm happier, I am not nearly as terrified to share my life with another person. Yes, there are definite challenges, but several of my concerns no longer ring true. For example, I have more going on in my life than books and crafts. Last week alone I left my house seven times exclusively to be social. No longer do I worry about being duller than burlap. Now it's more like tarnished metal.
Another shift has crept up slowly. Now I am able to predict my health status making a marked difference in how I approach life. Planning for future activities happens without having to think, "Will I be healthy enough?" A future filled with more than my couch and cotton candy entertainment seems likely.
Even this blog has made a difference. When asked what I do, I say, "Write a blog about disability stuff," and it feels like enough. I contribute to the world in a way that matters, at least to me.
Some things are still the same, such as how I address the issue with someone. Do I let them see the entire reality immediately or gradually? Who would sign up for this? Would I be able to stomach allowing someone I cared for to join this insanity?
Relationships are hard and they fail often with far less in the way of built-in stressors. Can I really hope to have one that lasts a lifetime? Maybe. Just maybe. That's a different answer than I would have given even six months ago.
Wednesday, May 12, 2010
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.
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.
Wednesday, September 23, 2009
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.
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.
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