Friday, October 31, 2008

(I've Received the) Kreativ Blogger Award


It’s nice when you are questioning yourself to receive a pat on the back without having to ask for it! And Maureen from Being Chronically Ill Is A Pill has done just that for me – and I really appreciate it – especially since it has been a difficult and crazy couple of weeks for me! She’s made me one of her picks for the Kreativ Blogger Award. Maureen is a newer reader of my blog, who I don’t know that well yet, but her comments have been extremely helpful and supportive – and it’s nice to know that I’m not the only one reading my blog!

My instructions are to list six things that make me happy and then give the award to six other bloggers.

Six things that make me happy:

1. My family and friends (both “real” and virtual)
2. Kind-hearted people, in general
3. Writing that helps others
4. Warm weather, heat, a warm blanket, etc.
5. My new rain boots (picture forthcoming when I get around to buying batteries for my camera)
6. Animal crackers

Six bloggers I want to give the Kreativ Blogger Award to:

1. Maria, from My Life Works Today
2. MJ, from Rhymes With Migraine
3. Migraine Chick, from Migraine Chick
4. Sasha, from Type A With RA
5. Chronic Chick, from Chronic Chick Talk
6. Britta, from Chronically Young

Thanks again Maureen!

Quick Bits

Hopefully I’ll be coming at you with a new post soon, but for now, check out the following:

The Partnership to Fight Chronic Diseases - http://vote.fightchronicdisease.org/

Saw their TV spot this morning, so check that out and more!

The American College of Rheumatology had their annual meeting this week and if you check out http://healthday.com/ and search for "rheumatoid arthritis," there is tons of new information on treatments and other disease related issues. This information is applicable to people with lupus, too, and may help others, as well, who have various kinds of rheumatologic diseases.

Tuesday, October 28, 2008

“Illness As Metaphor” For Life

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3).

- Susan Sontag, Illness As Metaphor
*****
I’ve been a pretty terrible blogger these past few weeks, but between schoolwork, teaching, and the weather, my time and energy has really been spent. So it’s time for a catch up… (and I’ll attempt to be coherent here, but I have a lot to say)

*****

The thing I have been struggling with a lot lately is the disjuncture between fantasy and reality. There is the fantasy of what I would like to do or try to convince myself that I can do, and there is the reality of what I can do because of my illnesses.

Part of the problem, I realize, is that there is so much about ones person tied up in illness. I must not be as morally upright since I wasn’t able to resist the temptation of illness. Oh yes, because feeling crappy 99 percent of the time is such a desirable state of being… That somehow it’s my fault… As Talcott Parsons (a sociologist – no big surprise there) said of the “sick role,” people become sick so they have an excuse to be lazy and avoid their social responsibilities. So with that rhetoric in mind, I attempt to face the world in as true a fashion as I can muster…

The truth is, I’ve finally come to the realization that while I would like to deny the reality of my illnesses, I can no longer afford to do so. And this means, unfortunately, more disclosing (and even more unfortunately, uncomfortable conversations) than I would like to be doing (and having) at this point in time.

In an attempt to reach out to my department and attempt to find a balance, I’m left feeling even more than before that I don’t belong in grad school and that my work life and my personal life cannot possibly coexist in an academic environment. And that’s sad because for the first time all year, I’m starting to realize that my research does have something to offer to the world.

But in a conversation with someone I trusted that was supposed to be helpful, I was offered unwanted and unasked for advice and the suggestion that maybe my career will be helped by the fact that I’m sick – a sick sociologist who can empathize – is exactly what the field needs. Great! Where do I sign up for that?

I apologize (only partly) for the sarcasm, but that is the stage I’m at right now. Part of the reason I haven’t written in awhile is because I was so hurt, confused, and taken aback by the conversation that I had to distance myself a little. But with the help and support of some virtual and in-person friends, I realized that I had every right to be upset. And of course, I’m still trying to work through this specific situation, but I’m moving forward in terms of looking out for myself.

*****

Partly I feel so bad about all of this because I care too much about what other people think. And while I know that I shouldn’t, I do. It’s so frustrating because I’m asking for help and concessions out of necessity, not out of want. I wish I didn’t have to be having these conversations at all, but not having such conversations does no one, least of all me, any good at all. And yet, no one is making it easy for me to have these conversations.

And the truth is, I can see how stress exacerbates these illnesses. Last week was a crazy, non-stop week. One night, I got home knowing that I had all this stuff to do and then I couldn’t remember any of it. Literally, my mind was a total blank. I called my sister and she asked me what I was doing. My response was something like I’m sitting here trying to remember what I’m supposed to be doing.

I put in a 15-hour day last week and realized that I would be paying for it for several days afterward. A fine display from the old me, but not the smartest move for the new (and improved?) me. At some point, I am going to have to let myself off the hook for the things that are no longer realistic aspects of my life. At the same time, however, someone in my department is going to have to tell me that it’s “okay” and that I shouldn’t feel bad.

But it’s so easy to get caught up in the jumble of papers, proposal writing, teaching, grading, and all of the other responsibilities that come with being a grad student. And it’s hard for me to admit to myself that I have limits - and not superhuman ones, either - but real limits that I need to consider and pay attention to.

*****

I’ve had these dreams, nightmares really. I’ve mentioned before the dreams of all my teeth and hair falling out. But it wasn’t until the recent dreams I’ve had about helicopters literally falling out of the sky and crashing down in front of me that I realized that those dreams aren’t foreshadowing real events. But it’s what the dreams represent that is real. I’m living my life waiting for the next bad thing to happen. And I know that sounds awful and depressing coming from a 23-year-old, but the truth is, I feel like that’s all I know lately. While that thinking may protect you from the bad stuff, though, it also closes you off from allowing good things to happen, too.

I don’t really know how I feel about anything anymore.

It’s like the last time I went to the rheumatologist, Doctor C asked me if I had a list of questions (as I usually do). And I didn’t have any. It’s because the questions I want answers to, nobody, not even Doctor C, is capable of answering. Truth be told, there is still that lingering question that starts with a w and has an h in the middle and a y at the end. And it’s not the medical answers that I want. It’s not that I want to know how my body got so screwed up. It’s that I want to know how my life got to a place where good and bad swirl together to make gray. And the whole world appears cloudy. And daily I ask myself what I’m doing with my life.

It’s difficult to imagine that these are truly the best years of my life.

I’m truly feeling confused at the moment. And talk about confusing, I ran into Doctor C the other day outside of the hospital environment. And it was weird. Doctor C actually stopped, though, and asked me how things were going. I think that had this happened a few months ago, Doctor C probably would have ignored me. And as much as I think it’s a credit to the fact that our relationship is much better than it was before, it’s strange when various lives and identities (literally) collide head on. I’m still not sure that I’ve fully “recovered” from this bizarre occurrence…

*****

In some ways, I’m lucky that all of this illness stuff happened in the context of grad school. I was thinking about how it would have pretty much derailed my life in nearly any other situation (i.e. a year off, a job, or Teach for America).

But the truth is, we never really go into any situation tabula rasa (with a clean slate). And it was na├»ve of me to think that grad school would mark a completely new beginning. Because the more I think about it, the more I realize that grad school is just a continuation of my previous life as a student. But unfortunately, I can’t be that student anymore. And I find myself daily doing battle with two conflicting identities – the person/student I was then – and the person/student I am today.

*****

So after all that, why “illness as metaphor”, you ask? Because illness forces us in a very strange and roundabout way to face the big questions whether we are ready to or not. And it’s sad that it takes such a mind-bending event to make us reevaluate our priorities or who we are as people.

The other thing I will say about Sontag is that she talks about how cancer becomes this term used, not only for illness, but also for the people and things that are viewed as negative by society. And in some ways, I think this bizarre class known as autoimmune diseases has taken cancer’s place as the unspoken and unseen foe that has the potential to fester until the only result is to destroy everything it comes in contact with.

*****

(Sontag, Susan. Illness As Metaphor. New York: Picador, 2001)

Tuesday, October 21, 2008

Check Out My New Project...

Well, I have been a terrible blogger lately. It has been like what, two posts in the last two weeks? Anyway, I hope to get some kind of update written over the weekend and up early next week. I have been really busy with grad school stuff lately (and trying to keep within my bed time!)...

In the meantime, I wanted to let you all know that I have been devising a new project for myself, and I am hoping that some of you will be willing to help me out with it. I have created a blog, the Chronic Illness Creative Energy Project:


I hope that this can be a collaborative effort of sorts. I have noticed that most chronically ill bloggers have multiple talents and a lot of different, creative, and unique things that they put their energy into. So I wanted to create a place where we could all come together and share with each other some of the things that we do with the energy we have, and all of the various ways aside from blogging, that we create meaning out of our illnesses.

Let me know your thoughts!

"Is It All In My Head?"

I created the above collage entitled, "Is It All In My Head," in my *spare* time and if nothing else, it was very cathartic to cut magazines to shreds and make a futile attempt at using scissors.

Thursday, October 16, 2008

My Letter To My “Younger” Self

I was inspired to write this after reading “What I Know Now: Letters to My Younger Self”. This letter isn’t written to myself at any particular time in my life, since I would still like to consider myself young, despite how my body makes me feel on most days. It is written to my healthy self, however. Honestly, this letter feels oddly personal and raw to me in a way that very little else has.


*****

Dear Les,

You know all those times you’d watch TV and worry that maybe you had the same disease as that person on “ER.” Guess what? You didn’t. And you probably never will. And the time that you and everyone else puts off your feeling lousy as stress is the time you really will get kicked in the ass by illness. And it’s going to suck really bad a lot of time. But you’ll get through it. You always do. And you are going to get incredibly ticked off when prime time hospital dramas turn into reality TV for you.

In my eyes, I see the long red hair that you only ever cut out of necessity. You’re a unique mix of Anne of Green Gables and Sandra Bullock’s character in “Miss Congeniality” – stubborn, tempered, smart, emotional, and well, admit it, you’re a pretty big klutz. But when you do things, you do them with your whole heart and that’s an important trait to have.

Not taking risks doesn’t preserve you from danger. It only makes it worse when you are finally felled by some invisible foe that you never imagined.

I think back to that time, I think you were around five then. And you took the train to Toronto and you chronicled the journey on a Sony tape recorder. Even then everyone knew you were going to go places…

One question I keep forcing myself to ask is - would I have been any more prepared for this at another age? And the answer is a resounding no. I think that maybe if I were older and more settled in my life, things might have been easier in some ways, but harder in others. The truth is it would have rocked my foundation no matter what. Sometimes, there are things in life that inevitably make us question the validity of everything we thought we knew.

And now, my demons bear down on me and take many forms. They are the result of a squandered youth. You don’t want to be that person who was always too mature for her age and then end up being forced to really grow up in an instant. But no matter how hard you try, that is what is going to happen.

So I know that technically I’m still my “younger” self, but here’s all the advice and words of wisdom I’m capable of giving…

Think about the last time and place you felt safe and really comfortable in your own skin. Go there in your mind.

Don’t think about the person you want to be, become that person.

When you look back, don’t regret the road not taken. Think of all the lessons you learned along the road you did take. Embrace your fears, your insecurities. Use them to your advantage, don’t let others use you.

You know what, little girl? You came of age in a turbulent world. A world full of uncertainty at every turn. Rather than fear it, embrace the unknown and let it carry you.

But in my heart I know that while it may take time, lots of time, you’re going to be okay!

And while your quiet life in quintessential suburbia tried to shelter you, you soon enough met the world with both its wonders and its flaws.

And someday you will stand taller than your 4’11”.

You are stronger and braver than most people give your credit for.

Don’t judge others in ways you, yourself, don’t want to be judged.

Don’t assume things based on people’s appearances. As you know first hand, appearances can be deceiving.

The path you travel will be a rocky one. But although sporadic, there will be people to cheer you on along the way. It’s easier to listen to the dissenters rather than the cheerleaders, but the cheerleaders will make you strong.

And do me a favor, will you? Before you get too busy with others, think about yourself (for a change).

Don’t be afraid to take risks – not stupid risks, but necessary ones.

The things you will regret most will be the things filed under “peer pressure”. When you followed others and did not listen to yourself, those are the times you wish you could take back. Remember that time you hopped on your bike and tried to churn up dust like Jonathon? You got a nice scar on your knee to prove your valor. And that’s the only scar you’ll have from those days. But trust me, kid, there will be more scars in the future, some you will be able to hide, others not, no matter how hard you try.

I honestly can’t believe I’m saying this, but… REBEL. Do it before it’s too late, before the only rebelling you can do will be going against “doctor’s orders”. Before it actually will impact your life and your health. Don’t go crazy, but do go against the grain, stray from the path once in awhile.

Wear Your Flaws Like A Badge Of Honor.


Your Best and Worst Critic,

Leslie

Wednesday, October 15, 2008

It's The Little Things In Life...


Imagine my surprise when I came up last night to find an envelope from ChronicBabe. Turns out I was one of 20 essay contest winners. It made my day to get the t-shirt and buttons pictured above.

And I figured as an added bonus I would share with you the essay that I submitted:

Why do I love ChronicBabe? That’s an easy question. I love ChronicBabe because I am a chronic babe… and I’m quickly learning to become proud of that distinction. When I received my diagnosis of lupus and rheumatoid arthritis in April, I thought my life was over. But I quickly learned that I am not alone in all of this. ChronicBabe has helped me to realize that and has introduced me to others just like me. This is one of the greatest gifts that I could have ever received. ChronicBabe has taught me that our illnesses should be worn as badges of honor, rather than as patches of shame. And so as ChronicBabe celebrates its 3rd birthday, it also celebrates all of us Chronic babes out there who are learning to cope, to be strong, to be proud, and despite our illnesses, to love ourselves everyday.

“What I Know Now: Letters to My Younger Self”


It hasn’t happened recently that I’ve found a book I wanted to put work aside for to read. But “What I Know Now: Letters to My Younger Self” is a book that I found truly empowering and inspiring. It has “girl power” at its very core. Every page is infused with hope.

The book’s author asked famous women in various sectors of life to compose a letter to their younger self. And what the book’s pages contain are raw and real self-reflections by women who we used to know in name only.

*****

“We don’t always have the wisdom we require at the time we need it” (xii).

Isn’t that the truth? Timing is a funny thing…

“Choosing to grow during trying life passages can be lonely work” (xiv).

I’ve had to learn over the last week or so that I have to measure my life differently than other graduate students. It’s a very hand lesson to learn, especially when I embarked on this academic journey expecting never to fall behind. However, I have to count the things that are important to me – walking down the stairs of my apartment building without feeling too much pain, being able to open a jar or Tupperware on the first try, and not chucking it mercilessly across the room when I can’t open it at all. And the truth is, this is very lonely work. Much of it happens in my head or when I’m alone in my apartment.

“But you need to learn how to celebrate – not just to suffer. It sounds impossible, doesn’t it? How, in the midst of all this turmoil, can you possibly find a way to feel good about what’s happening” (41)?

I found this really inspiring. It doesn’t provide answers to either myself or the person who wrote it, but what it does provide is hope. It provides hope that things will get better and that in some small way, I have the power to make some aspects of my life better.

“It won’t be a ‘happily ever after’ story – the cycles of darkness and light continue. But have patience. Your most important struggles will be hard-fought but won well” (42).

I think being realistic about ones life is incredibly important. I think those who are unable to do that find it very off-putting. But it’s not about gliding through life on a magic carpet. It’s about persevering over countless, what will sometimes feel like unbeatable odds.

“You feel like a piece of gum on the bottom of someone’s shoe” (62).

We all know how that feels, don’t we?

“When juggling as much as you are, remember that some balls are glass and some are rubber. You can’t drop the glass balls” (137).


I think this had the biggest impression on me. I’ve been really thinking about and trying to prioritize and this analogy of the balls really spoke to me. The only thing is that I came to the conclusion that school/work, health, and family and friends are all glass balls. So I still need to work on it, but I think this helped me to really start thinking about what really matters in my life.

“Don’t hang out with anyone who doesn’t understand why you’re so wonderful, or who needs to be told, or who doesn’t tell you at regular intervals or when you forget” (146).

Lately I’ve been getting such a crazy mix of compliments and criticism that I haven’t been able to make heads or tails of it. But the truth is that we all deserve to be surrounded by people who think we are great, if for no other reason than that we are our own, unique selves and no other person in the world can replace that.

‘You should live as though you know you are going to be famous. Even if you aren’t, you’ll still have the satisfaction of knowing exactly how you spent your time’ (151).

I just love this idea! It strikes me as being so hopeful. Act like everything you do matters, even if in the end it only matters to yourself.

“You’re going to have to learn how to pat yourself on the back eventually” (156).

Now, you’ve probably realized that most of these quotes are about self-esteem and overcoming odds. And it shouldn’t come as any surprise that they spoke to me.

*****

So here’s my charge to you (and don’t say you didn’t see this one coming): write a letter to your “younger” self. Tell yourself the things you know now that you didn’t know then.

I’m planning on sharing mine with you, but you don’t have to share yours with anyone. So do yourself a favor. Read “What I Know Now” as a gift to yourself. And look for my letter to my “younger” self tomorrow.
*****
(Spragins, Ellyn. What I Know Now: Letters to My Younger Self. New York: Broadway Books, 2006.)

Monday, October 13, 2008

Unloading

I haven’t had a substantive post in nearly a week, which is a long time for me. I’ve been working through a lot and trying to make sense of myself and the world around me.

I’ve been trying to make sense of the misunderstanding that occurs due to illness and I’ve begun to realize where the roads for healthy and sick people diverge.

When I began this process a little over a year ago, the end goal for me was to have a diagnosis. I convinced myself that along with a diagnosis would come some kind of inner calm. I would no longer have the panic attacks in the middle of my theory class that I concealed regarding if this was the last night of my life, is this really how I would want to be spending it? Because at that time, there was so much unknown. And while a diagnosis isn’t the only thing that makes an illness real, there is no less uncertainty that comes once you have a label to pin on yourself.

I realized that my world changed when I received my diagnoses in a way that can only happen if you are ill. It was like when I left the hospital, my world had completely changed, but everything around me moved the same way that it always had. In other words, I changed, but nothing and no one else had. While I was seeing the world in a new way, with new eyes, everyone else viewed me (and the world, my world) as they always had.

So how does one cope with a world that is only different to you?

Some people find it difficult to face the truth ever. I am forced to face the truth about my life and my future everyday. So if that breeds jealousy, envy, or resentment, I’m only half sorry. Because I didn’t ask to be here. And in a million years, I would change things if I could.

I feel like something people don’t understand is that I’m not making an excuse, I’m providing an explanation. The thing I keep trying to convince myself is that my super human powers of working myself to no end can no longer be. I keep trying to take my mom’s advice to heart that my 100% is everyone else’s 75%, so when I’m working at 75%, it’s like I’m still at 100%. Does that make sense? It does to me, although it’s hard to believe.

But the truth is, sooner rather than later, I have to acknowledge my illnesses as a real part of my life and what they mean for my future. In order to do that, though, I also need those around me to acknowledge it, as well. I need to be able to say and do things without people asking questions or getting angry or frustrated. I need to stop fooling myself into believing that I’m the same person I was before all this and that I can do the same things I did before. Because I’m not and I can’t. And maybe those who were in my life before all this don’t like the person I’ve become. And that’s okay. I don’t always like me, either. But I’m trying to work through that. And I’m trying not to be a poor me, always dejected kind of person, but that’s a little hard when I never know exactly how I am going to feel.

Talking to one of my friends the other day, she mentioned that she was having side effects from a medication she is on and that with aching joints and muscles nearly constantly, she kept telling those around her that she understood what I must go through. And she can’t imagine feeling that way for an indefinite amount of time.

And it’s funny because that question has been posed to me several times recently by outside observers.

How does it feel to have to deal with all of this forever?

Do you ever consider that question?

Um, let’s see. How does it feel? Pretty shitty, actually.

And do I consider that question? Only multiple times a day.

I have been struggling with Doctor C’s order of a restricted schedule. I truly have been trying. The reason that I haven’t been succeeding is because a 10 p.m. “bedtime” assumes that my life takes place in a vacuum and that nothing will happen that will send me into a tailspin or send me into hours worth or analyzing and re-analyzing a given situation. I have made an effort to get no less than eight hours of sleep a night and that does seem to be working, although the benefits to my physical and emotional self are still questionable (at best).

As of late, I’ve really been feeling beaten down emotionally. The meanness makes me cry and lately so does the kindness, because it is such a rare occurrence to have someone listen and attempt to understand who isn’t required to do so.

It’s funny how the way we see ourselves and how others view us can be completely different. Lately I feel like my emotions are all over the place and my life is spinning out of control. I’ve been seriously considering the pros and cons of leaving graduate school. And yet, through all of that, at every turn people are telling me how impressed they are by my work and my fortitude and my togetherness. And my response is that I want to laugh. Are they really serious? Are they really talking about me? It’s only a matter of time before they talk to this one or that one, who will certainly set them straight about the truth about me. But it also made me realize that lately I’ve only been able to focus in on the negative comments and interactions that take place with those around me.

The other day, for instance, the professor I teach for asked a question in lecture. One of my students answered with a nearly verbatim response of what I had taught earlier that day. The professor commended the student on the answer, but suggested the student must have had helped and asked who the student’s GSI was? The student promptly told the professor that I was his GSI. In the moment, I felt like I was being singled out. I felt stressed and anxious about the implications of the situation. But as I shared the account with others, they made me realize that this was truly a good thing. My student not only knew my name, but actually absorbed the information I had taught, the professor saw what I’m teaching, and my students are now more aware than ever that I actually do know what I’m talking about.

So I know this is a lot to process and it’s probably not my most cogent post ever. But I’ve been too emotionally full to attempt to unload until now.

(P.S. I don’t have to follow the 10 p.m. bed rule on days where I have my evening classes, hence why this post is being written and posted at this time!)

(P.P.S. No, I couldn’t come up with a more creative title for this post. I’m running on very little right now and it says what it is supposed to say!)

Friday, October 10, 2008

Worried About The Economy? Just Plain Worried?

For those who have been wondering, I have not forgotten about the economy (obviously!), I just have not felt much like talking about it (as a chronically ill graduate student without a steady income). But I have found some useful information when it comes to emotional health and the economy, see the following Health Day article, and worry in general, see “Why Worry”, on the Lupus Foundation Blog.

Tuesday, October 7, 2008

Under The Guise of Control…What Will I Become?

I’m having a difficult time emotion-wise this week for a few reasons:

1) Hormones – need I say more?
2) Struggling to keep up with work and school commitments, etc.
3) The weather
4) Being forced to face the truth about my life

As I’ve said before, this semester seems to be forcing me into a corner, forcing me to stay there until I admit the reasons for crawling there in the first place.

We all have questions that we ask ourselves, some we share with others and some we don’t. And I think one thing about discussing illness with others is that it makes it “real.” It puts it out there for people to “see.” It is no longer something that is hidden from view. It becomes something that people actually have to acknowledge.

And the whole idea makes me more than a little squeamish.

And I don’t mean making a self-deprecating joke about being a 23-year old in the body of an 80-year old. I mean the way you would if there was a self-help group for the chronically ill like there is for alcoholics.

“Hi, I’m Leslie. And I have lupus and rheumatoid arthritis.”

One thing this does is it makes peoples reactions real, as well. If people treat you poorly or unfairly, it isn’t because you’re ill if they don’t know that you are. And yet often we resent or hold people responsible for their lack of knowledge. Like somehow, by osmosis, they are supposed to get it. So if we do tell people and they react in many of the awful ways that many of us experience, there is no excuse for those actions.

I guess what I’m trying to say is that I feel a lot of people are misunderstanding me lately and I’m not quite sure how to get them to understand without just coming right out and telling them what’s going on. And even still, that doesn’t always lead to understanding.

I think that people see me as being particularly stressed or busy and don’t understand why I feel that way. It’s difficult trying to balance health and everything and still remain on a level playing field with everyone else.

You know, I want to say that I lived the best years of my life despite my illness.

And it seems silly to think of vanity at times like this. But the truth is, a big part of me thinks that if only I can literally “keep up appearances,” somehow I can really be ahead of the curve. Maybe I’ve just been watching too many shows about plastic surgeons and perfect bodies. Or maybe it’s something else. Something deeper taking hold of me.

I feel like before, I had the typical body issues. I’m too short, not thin enough, etc. But now the fact is, those things don’t matter. I’m stuck in a body that for some mysterious reason has decided to go crazy on me for no particular reason. I find myself in a body I despise and for all intents and purposes, my body despises me as well. And what little control I thought I had is left to pick up the pieces of this mess. And I wonder what becomes of someone who is stuck in a body that won’t cooperate. There are things I want to do, but can’t. There are things I want to understand about all this, but I can’t.

It makes me think of the song, “Why Can’t We Be Friends?” And I feel like I’m constantly asking my body the same question.

I think there is a feeling that I want to look in the mirror and not see a stranger. I see someone going through the motions, but not really taking stock or getting enjoyment from things. I keep thinking, one of these days, I’m going to post a really happy, uplifting post. And then something happens and I sit down to write and what spills out of me isn’t really happy at all. It’s the hard truth, but it’s not necessarily a happy one.

I hope that one day I will be okay with not having control of my life.

Monday, October 6, 2008

Sympathy Versus Understanding

I did something unusual today that most people don’t do anymore…I pulled out (and cracked open) an actual paper/book dictionary… Because the distinction between understanding and sympathy has been bothering me for a while.

Sympathy vs. understanding? Is there a difference between the two? What do I desire from people?

Well, in order to answer these questions, I first have to know “officially” what the two words actually mean.

Sympathy…

“Sameness of feeling; affinity between persons or of one person for another”

“An entering into, or the ability to enter into another person’s mental state, feelings, emotions, etc.”

“Pity or compassion felt for another’s troubles, suffering, etc.”

Understanding…

“Mutual comprehension, as of ideas, intentions, etc.”

“A mutual agreement, esp. one that settles differences or is informal and not made public”

What I realize in taking myself through this exercise is that sympathy and understanding are deeply tied up in meaning. “Feeling”, “pity”, “compassion”, “comprehension”, and “agreement” are all words that find themselves in these definitions and I think, in terms of chronic illness, is assuming a lot (at least most of the time, that is).

How often do any of those terms describe how we feel from our interactions with the non-chronically ill?

I was recently having a conversation with someone who I had not seen or spoken to since before receiving my “official” diagnosis. Well, this person and I got to talking and their reaction was, “This is just shitty”.

And you know what? I agree.

And it was somewhat refreshing to be in the company of someone who could understand what a snag lupus and rheumatoid arthritis have put on my life.

And while we are on the subject…

I’ve come to realize that playing the role of the patient has put me at an advantage in my research. I think that being diagnosed with and experiencing what life is like with chronic illness has made me a more compassionate, and dare I say understanding, person.

Some might say that this is one heck of a price to pay in order to gain rapport when I am interviewing people. But it is not just that. It allows me to see directly into their world and to be acutely aware of what it means to look, feel, and act different, because I am acutely aware of this every single day.

Sometimes I wish our foreheads could double as car bumpers so that each day I could wear a new sticker on my forehead – an insignia that would tell the world how I am truly feeling on the inside – the part of me that very few people ever really get to see. And usually when they do, it is behind closed doors in whispered, hurried conversations, or over the desk at my doctors’ offices (and even then, not so much).

So what do I expect from people? That’s not an easy question to answer. But I guess it would be nice every once in a while for someone to acknowledge that my life sometimes stinks more than the average 23-year olds and that their life is made better by virtue of them not being ill. This seems obvious, but sometimes it would be nice if there were other people other than me wiling to admit it.
*****
“Sympathy.” Webster’s New World College Dictionary. 4th ed. 2000.
“Understanding.” Webster’s New World College Dictionary. 4th ed. 2000.

Friday, October 3, 2008

A Month of Six-Word Memoirs

So, I promised and I’m delivering on that promise (see Another Must Read). Here is my month’s worth of six-word memoirs:

September 1, 2008 - When I can’t choose – do everything!!!

September 2, 2008 - Prisoner to my own self-loathing.

September 3, 2008 - Still wish I had my pacifier.

September 4, 2008 - Another day on the lupus train.

September 5, 2008 - Never got far playing it safe.

September 6, 2008 - After everything, I’m still standing (short).

September 7, 2008 - Born outside Detroit. Meant for Chicago.

September 8, 2008 - A dollar for every blog post…

September 9, 2008 - I wouldn’t need grad school anymore!

September 10, 2008 - It’s Rott. Pronounced R-o-t. Got that?

September 11, 2008 - A day I would rather forget…

September 12, 2008 - Short redhead female seeks tall man.

September 13, 2008 - Love or loathe me; please decide.

September 14, 2008 - I am a rock, an island.

September 15, 2008 - Doctor gives diagnosis, leaves the room.

September 16, 2008 - A series of very unfortunate events.

September 17, 2008 - I am – has been, never was.

September 18, 2008 - Hate driving, hate rheumatoid arthritis more.

September 19, 2008 - That’s me. The one you overlooked.

September 20, 2008 - I’m Baby in corner, without Johnny.

September 21, 2008 - Smutty romance novels turn me on.

September 22, 2008 - I have been waiting – still waiting…

September 23, 2008 - I’m always early – time never waits.

September 24, 2008 - I fall, I get up again.

September 25, 2008 - I just might be that awesome!

September 26, 2008 - I am me. That is enough.

September 27, 2008 - Not engaged, reads wedding magazines anyway.

September 28, 2008 - From Cinderella’s castle to Ivory Tower.

September 29, 2008 - Prince Charming? He’s still out there…

September 30, 2008 - Writing is food for my soul.

Wednesday, October 1, 2008

Responding To The Call

I just want to thank everyone who helped spread the word about my call for submissions. Your help in this effort is greatly appreciated!

If you wanted to write something, but weren’t able to submit it by the deadline and are still interested in doing so, please e-mail me ASAP at gettingclosertomyself@gmail.com so we can make an alternative arrangement.

Thanks, again!