Wow! January has been a really up and down month for me.
Honestly, I think that the death of my cousin has really taken its toll. Once I was able to stop crying and actually go out in public, (which happened rather quickly because of school), I feel like there is still a lot of emotional rewiring going on in my head.
And I forced myself to work so that I could try and get my head back into the game. But I have so many projects in the works right now, it’s crazy.
I haven’t been sleeping well at all and am feeling quite anxious most of the time. I’m not going to sit here and lie about the fact that I’m an anxiety prone person. But the fact of the matter is that I’m feeling more anxious than I think I’ve ever felt before. I feel like it’s hard to breathe sometimes, like the walls are closing in on me.
And I can’t explain exactly why this is. I’ve been in relatively good health the past few months. And there are a lot of things that are going well in my life; a lot of exciting things coming up – (such as) trying to find a publisher for the anthology I’ve been working on, trying to write a memoir, trying to create awareness about chronic illness on the U of M campus, etc. So why do I feel so unsettled?
Even just the thought of my schedule filling up and more and more hours of my time being spoken for, makes me feel kind of nauseous. On the one hand, I don’t want to live in fear and never do anything because of the worry of not feeling well. On the other hand, though, I have to prepare myself for (at least) the possibility that my body will crash again, even though I don’t know where or when that will happen. Because I do think it is not a matter of “if,” but “when.”
And it’s stupid of me to assume that I can do everything I once could, or that I can even do everything that everyone thinks I am supposed to be doing now. For instance, I teach for four hours Monday afternoons. The first class was brief because it was basically introductions and going over the syllabus. We had the second week off for MLK Day. So Monday was the first time I had really taught, and I basically went for the entire four hours straight through. It’s only logical that, that kind of work tired me out.
I’ve noticed that some of the symptoms that I dealt with at the very beginning of all this, are coming back. Despite this, I keep trying to see how far I can push the envelope. And I know this is supremely stupid on my part, but I don’t know any other way to be. When I’m being super productive, I get this incredible adrenaline rush, but then I don’t know how to stop, how to cut myself off from overextending myself.
Obviously, this is nothing new for me. But lately my life feels very unbalanced, like the ground is shifting under me, but I’m not moving. Or maybe I am. I can’t say what this “existential crisis” is truly about. Lately, I’ve been wondering if I’ve ever really been a happy person. I think so, but I sort of wonder. What the heck is going on with me?
Part of the problem is that a large component of getting through academia is the fact that you have to play (and win) the “publish or perish” game. So when I have professors asking me to work on projects, how can I say no? Inevitably, this means that my own work often gets put on hold, especially creative things that I’m trying to work on. Lately I just feel this profound sense of urgency that there’s so much to do and not enough time to do it. This is something I find rather distressing.
Invisibility comes into play again here. I think that I’d have less of a hard time saying no if it was obvious that I was sick. But in the absence of horns, tails, or flashing lights, it’s hard to explain to others. And some people do understand. My advisor always counters any offers I make to help by asking if it will be overextending myself (as if this is something I would admit, anyway), but at least I know she’s thinking about it. And the professor I worked for over the summer, who I’ve continued to work with, has been really good about it, too. It’s just the people that are newer in my life that are difficult to deal with (and they are many, even though some have been great).
It seems that all I’m good for lately is questioning myself.
In some ways, all of this makes me realize that maybe Doctor C was right in suggesting time off from school. If I don’t stop working, obviously, I’m not going to stop working. But it’s not as if I can just jump ship right now or go spend some time on a deserted island somewhere. But I feel like that’s sort of what I need. I feel like the project I really should be working on is myself. There are definitely some things about this self that need improving…
As I’ve said before, I think dealing with chronic is as much mental as it is physical. And sometimes, the mind and the body aren’t in sync in the way that they’re feeling.
I had blood work done last week, which happens routinely because I am on immunosuppressive drugs. I have gone through this seemingly innocuous task more times in the past year than I care to remember, never expecting anything to go wrong. And yesterday, I got a call from my rheum’s office. White blood count low (as in abnormally low based on my previous tests). Repeat blood work next week (instead of in three months). This call took me back to my first phone conversation with my rheum, when he called to tell me all of the tests that had come back abnormal, when I first started going to him. Obviously, my white blood count could be low for any number of reasons. This could merely be a fluke. Or it could be something else? (This does wonders for my already anxious self, by the way!)
I guess sometimes I just wish that illness wasn’t a factor in everything I do, but it is, and I have to get used to it.
Thursday, January 29, 2009
Tuesday, January 27, 2009
Grand Rounds: Chronic Babe Style
Be sure to check out this week’s awesome edition of Grand Rounds at Chronic Babe, which focuses on (the always timely) issue of women’s health.
Along with myself, some of my favorite chronically ill bloggers are represented, including posts from Being Chronically Ill Is A Pill, Rhymes With Migraine, A Chronic Dose, and Six Until Me.
Along with myself, some of my favorite chronically ill bloggers are represented, including posts from Being Chronically Ill Is A Pill, Rhymes With Migraine, A Chronic Dose, and Six Until Me.
Thursday, January 22, 2009
Kindred Spirits And Not So Kindred Ones: Chronic Illness Is A “Strange Bedfellow”
Chronic illness, especially if you are relatively new to it, forces a person to do a lot of soul searching to find out what you really want and need in your life. Sometimes this soul searching also leads to thinking about what you want and need from other people, as well…
My sister and I don’t always get along. Especially when I was still living at home, we were always competing for everyone’s attention. And honestly, in an attention competition, my sister wins hands down.
But ever since I moved out, we have become much closer. Over break, she and I were up late, talking and laughing, just like sisters who are close in age do. But my sister and I are nearly 10 years apart, and she is quickly becoming bigger and better than me (even though she’s the younger one).
Somehow, our conversation got onto the subject of boys/men, and she asked me what qualities I thought the ideal man for her would need to have (keep in mind that she’s 14). I thought about it, told her what I thought, and then we moved on to me…
And my sister said something like, he’s got to be able to handle your diseases. I haven’t talked to my sister that much about lupus or rheumatoid arthritis, so her comment sort of took me by surprise. My response was something like, are you trying to be daft? You make me sound crazy (or like I have an STD)…
But she was being serious, and she’s right.
Something I haven’t really shared with readers of this blog is information about my personal life. And I only do it now because it relates to chronic illness.
But don’t get too excited. It’s not that exciting, I promise!
I’ve been dating here and there (read rather sparsely) recently. There hasn’t been anything serious, but it has really helped me realize the kind of person that I need and want in my life.
I went out on one date with a guy*. The date was fine, but there’s not much more to be said about it. When asked if I wanted to see the guy again, I politely said no.
While I felt like the guy wasn’t my type, and that overall, the date lacked chemistry, I felt bad. Maybe I had been too snap in my judgments. But one comment he made resonated with me. He was talking about his work (he’s not a doctor or in the medical profession) and mentioned that whenever he has to get blood drawn, he has to take anxiety medication in order to calm his nerves. The fear of needles, I completely understand – I used to have it myself (minus the need for drugs, although I do recall some handholding – 27 vials at once certainly makes that fear go away real quick) – but the reality is that someone that I have a relationship with is going to need to be able to handle a variety of health related issues.
And disclosing the fact that you’re chronically ill isn’t exactly first date material!
(I haven’t actually figured out the logistics of disclosure in a romantic relationship that lasts more than one date. But I’ll cross that bridge when I come to it…)
And I know that it’s going to be difficult to find someone who wants to be in a committed, long-term relationship with someone who is chronically ill. (I know that person is out there, I just haven’t found him yet) People go into relationships knowing that the possibility of illness may arise at some point. But it’s going to take a certain kind of person to be able to go into a relationship where that cloud is already looming.
So in many ways, my sister’s comment is spot on because accepting (and even loving) me with all that comes with me, good and bad, (sickness and health), is really the best that I (or anyone) can hope for.
So, while this particular guy and I did not connect, I feel a connection with my sister that I’ve never felt before, that only sisters have. We are kindred spirits in a way in which even best friends don’t have. I’ve often said to my sister of others, she’s my friend, but she’s not my sister.
So it’s nice to know that in a world where there are doctors and men to drive me crazy, and all of the other people that may walk in and out of my life, that there are people that really do get me. And it’s really nice, now more than ever, to know this, given the fact that I recently lost a member of my in-person support system (see Unfortunate News and Making Sense Of The Senseless).
I do still feel bad about turning the guy down for a second date, as I would not have wanted to be in that seat if the situation was reversed. However, I think it’s important to know what you need and want from a relationship, and also, be willing to put the time and effort into it if you think it’s going to work; and to know when to throw in the towel when it’s not.
Chronic illness isn’t an easy thing to deal with, and it can have a wide-ranging impact. So I can’t begrudge a guy who can’t handle it, it’s just that’s not what I need in my life. I need someone who is going to stand by me and be there for me. And quite frankly, there have been several people in my life giving me mixed signals, and honestly, I don’t have time and energy to pursue nothing, so it’s good to be honest and up front about what you want and what you don’t.
I tried unsuccessfully and for too long to deny the reality of my illnesses and their consequences. But in order to move my life forward, and make it as productive as possible, I have to know and admit to others that things have to be different. And that includes my relationships, romantic or otherwise.
I guess, illness or not, a girl’s got to do what a girl’s got to do. Am I right?
Sometimes the best self-care is knowing who or what is best for ourselves.
* This post is in no way meant to embarrass this person, especially considering that the details have been purposely kept vague, I only met him once myself, and he probably will never read this blog.
My sister and I don’t always get along. Especially when I was still living at home, we were always competing for everyone’s attention. And honestly, in an attention competition, my sister wins hands down.
But ever since I moved out, we have become much closer. Over break, she and I were up late, talking and laughing, just like sisters who are close in age do. But my sister and I are nearly 10 years apart, and she is quickly becoming bigger and better than me (even though she’s the younger one).
Somehow, our conversation got onto the subject of boys/men, and she asked me what qualities I thought the ideal man for her would need to have (keep in mind that she’s 14). I thought about it, told her what I thought, and then we moved on to me…
And my sister said something like, he’s got to be able to handle your diseases. I haven’t talked to my sister that much about lupus or rheumatoid arthritis, so her comment sort of took me by surprise. My response was something like, are you trying to be daft? You make me sound crazy (or like I have an STD)…
But she was being serious, and she’s right.
Something I haven’t really shared with readers of this blog is information about my personal life. And I only do it now because it relates to chronic illness.
But don’t get too excited. It’s not that exciting, I promise!
I’ve been dating here and there (read rather sparsely) recently. There hasn’t been anything serious, but it has really helped me realize the kind of person that I need and want in my life.
I went out on one date with a guy*. The date was fine, but there’s not much more to be said about it. When asked if I wanted to see the guy again, I politely said no.
While I felt like the guy wasn’t my type, and that overall, the date lacked chemistry, I felt bad. Maybe I had been too snap in my judgments. But one comment he made resonated with me. He was talking about his work (he’s not a doctor or in the medical profession) and mentioned that whenever he has to get blood drawn, he has to take anxiety medication in order to calm his nerves. The fear of needles, I completely understand – I used to have it myself (minus the need for drugs, although I do recall some handholding – 27 vials at once certainly makes that fear go away real quick) – but the reality is that someone that I have a relationship with is going to need to be able to handle a variety of health related issues.
And disclosing the fact that you’re chronically ill isn’t exactly first date material!
(I haven’t actually figured out the logistics of disclosure in a romantic relationship that lasts more than one date. But I’ll cross that bridge when I come to it…)
And I know that it’s going to be difficult to find someone who wants to be in a committed, long-term relationship with someone who is chronically ill. (I know that person is out there, I just haven’t found him yet) People go into relationships knowing that the possibility of illness may arise at some point. But it’s going to take a certain kind of person to be able to go into a relationship where that cloud is already looming.
So in many ways, my sister’s comment is spot on because accepting (and even loving) me with all that comes with me, good and bad, (sickness and health), is really the best that I (or anyone) can hope for.
So, while this particular guy and I did not connect, I feel a connection with my sister that I’ve never felt before, that only sisters have. We are kindred spirits in a way in which even best friends don’t have. I’ve often said to my sister of others, she’s my friend, but she’s not my sister.
So it’s nice to know that in a world where there are doctors and men to drive me crazy, and all of the other people that may walk in and out of my life, that there are people that really do get me. And it’s really nice, now more than ever, to know this, given the fact that I recently lost a member of my in-person support system (see Unfortunate News and Making Sense Of The Senseless).
I do still feel bad about turning the guy down for a second date, as I would not have wanted to be in that seat if the situation was reversed. However, I think it’s important to know what you need and want from a relationship, and also, be willing to put the time and effort into it if you think it’s going to work; and to know when to throw in the towel when it’s not.
Chronic illness isn’t an easy thing to deal with, and it can have a wide-ranging impact. So I can’t begrudge a guy who can’t handle it, it’s just that’s not what I need in my life. I need someone who is going to stand by me and be there for me. And quite frankly, there have been several people in my life giving me mixed signals, and honestly, I don’t have time and energy to pursue nothing, so it’s good to be honest and up front about what you want and what you don’t.
I tried unsuccessfully and for too long to deny the reality of my illnesses and their consequences. But in order to move my life forward, and make it as productive as possible, I have to know and admit to others that things have to be different. And that includes my relationships, romantic or otherwise.
I guess, illness or not, a girl’s got to do what a girl’s got to do. Am I right?
Sometimes the best self-care is knowing who or what is best for ourselves.
* This post is in no way meant to embarrass this person, especially considering that the details have been purposely kept vague, I only met him once myself, and he probably will never read this blog.
Monday, January 19, 2009
An (Un)Happy Anniversary
“I hope you know, I hope you know
That this has nothing to do with you
It’s personal, myself and I
We’ve got some straightenin’ out to do […]
The path that I’m walking
I must go alone
I must take the baby steps ‘til I’m full grown, full grown”
- Fergie, “Big Girls Don’t Cry”
Ten days ago marked the 0ne-year “anniversary” of my “seeing” Doctor C. It’s pretty funny that this is my longest relationship with a member of the opposite sex. How sad is that?
(I’ve tried to keep my doctors gender neutral, but I’m sure many of you have figured it out already)
In some ways, I feel like my reliance on Doctor C, over the summer, for instance, was because of my own insecurities. I guess I wasn’t so much worried about being able to take care of myself, but rather, I was worried that I couldn’t, and wasn’t, managing my lupus and RA symptoms.
In retrospect, I think that being cut loose was in some ways liberating because it forced me to take control of the things that I could be in control of and wasn’t, and resigned myself to the fact that there are and were some things that I just simply don’t, and maybe never will, have control over.
Since my appointment in November, it has been my longest stint of feeling well most of the time, and the longest I’ve gone without seeing a doctor, since all of this started. It’s nice to (finally) have tangible proof that I am making strides, no matter how slowly or awkwardly.
It’s funny, though, in an ironic kind of way, to think back to my life a year ago. Before then, I never knew it was possible to extract 27 vials of blood from a 90-something pound person. I never really knew what lupus was, or that rheumatoid arthritis wasn’t the kind reserved only for older people. I didn’t know that one day the body could be fine and the next it could be going crazy.
I’ve come to think of it something like this:
My body was like a train speeding down the track. Suddenly, the track forks. There are two ways to go. A simple decision, right? Not when you can’t see what the other side of the fork holds. So one way leads to a smooth track so the train can keep speeding along. The other leads to a track that is broken, an unfinished track that leads the train off a cliff. And what switch does my body pick to flip?
I keep thinking a lot about forgiveness, too. I’ve come to realize that Doctor C really does have my best interest at heart. And although the diagnosis giver, he is not responsible for the diagnosis. But there is, then, the lingering question of who is. And for some reason, I can’t seem to forgive myself. I can’t get off the fact that maybe there is something I could have done to prevent all of this from happening…
I think back to my job writing for a newspaper the summers before my junior and senior years of undergrad. I worked at least 80 hours a week because I didn’t know any differently and didn’t think to care that maybe such a work ethic was causing permanent damage to my body. And a pretty nasty habit that I gained from college was not eating when I was stressed. Most people who have stress related eating issues binge when they’re feeling overwhelmed. I stopped eating. Most people worry about gaining weight their freshman year (“the freshman 15”). I lost ten pounds that I really didn’t have to lose. So I have to wonder if any or all of these things contributed to my current health status? I probably will never know for sure.
In some ways, this whole lupus thing makes sense. But in other ways, I still shake my head when uttering the words. How is this really happening? There is definitely still a part of me that wonders what might have been without having lupus and rheumatoid arthritis in my life. But even as the thought crosses my mind, it is overshadowed by the fact that I will never know the answer to that, because I will never know a time when I don’t have these illnesses in my life.
So, as I reflect on this moment, I also try to stick to my New Years resolution and not ruminate too much about the past. I’d like to think that both good and bad have come from being chronically ill.
It’s strange because I left my last appointment with Doctor C incredibly frustrated and angry. But since then, I’ve started feeling a lot better. Is that a sign? What does that mean? I’ve talked often about considering seeking out a new rheumatologist. But as many of you know, I’m sort of a creature of habit who doesn’t deal well with change. So at the moment, I have no immediate plans to switch doctors.
The truth is, I had written Doctor C off a long time ago. And I shouldn’t have. Because the reality is that while Doctor C was doing the best job that could be done, I was the one who was unrealistic about things. It’s crazy to think that you can be healthy one minute and then the next you are never able to feel that way again. Maybe the real truth, though, is that both Doctor C and I had unrealistic expectations. It’s hard for anyone, especially someone to has spent their life with the goal of helping and healing, to see health go out the window, especially for a young person.
As I’ve talked about before, the doctor-patient relationship is a hierarchical one, but it doesn’t have to be. Just as our doctors need to put themselves in our positions, we also need to put ourselves in their positions. And when you look at things from that perspective, you come to realize that chronic illness isn’t easy for anyone involved. I think both Doctor C and I were misinformed in our thinking that things would be perfect. Things are fine, much better than last year at this time, but there are still (and probably will always be) issues that have to be dealt with.
So here’s to you Doctor C, and many more years together (maybe).
Friday, January 16, 2009
Breaking My Silence (And Possibly Other Things)
Okay, so the “other things” part is only half serious. Yesterday, I fell in my apartment. It was one of those times that I was glad I was alone – because as of late, I’m feeling a little bummed about being by myself most of the time – but this was one of those moments where you look around to make sure no one saw, even though there was nobody else there. Although I’m fairly sure the people that live below me must have heard it.
This is not a glamorous story. I basically missed my rolling desk chair, lost my balance, and fell sideways. And of course, I had to land on my right hip and elbow, the body parts that give me the most constant and consistent trouble. And this makes me not believe that “the bigger they are, the harder they fall,” because I fell pretty darn hard.
Floor meet Leslie. Leslie meet floor. Hello…floor.
Come to think of it, my hair dryer fell off my bathroom shelf the other morning, and smacked my left wrist. Maybe I should just stay on the couch. That seems to be the safest place for me lately.
Other than a little bit of bruising, and a fairly big bruise to my ego, I’m fine, although I’ve been feeling a bit off these past few days (both emotionally and physically).
The past few weeks have been difficult, to say the least. I had started writing a few posts that I had intended to finish, but then my cousin died, and everything else took a backseat. I haven’t really had time to adjust to the new semester, and it has been difficult to reflect on some of the topics that I wanted to write about.
Walking to campus for the first time since break really tired me out. I really felt out of shape. My ankle was sort of swollen by the time I got home, which has never happened before. And the first day of school, I woke up and felt “wasted.” And if you have lupus, you know exactly what I’m talking about. My head just didn’t feel right, like I’d never slept, and I felt vaguely hungover.
On the other hand, though, the last few times I’ve exercised, it has actually felt energizing, rather than energy depleting for the first time in over a year.
Given the physical (lack of sleep) and emotional toll that the past few weeks have taken, I am surprised that I haven’t flared.
That’s all I have…for now…
This is not a glamorous story. I basically missed my rolling desk chair, lost my balance, and fell sideways. And of course, I had to land on my right hip and elbow, the body parts that give me the most constant and consistent trouble. And this makes me not believe that “the bigger they are, the harder they fall,” because I fell pretty darn hard.
Floor meet Leslie. Leslie meet floor. Hello…floor.
Come to think of it, my hair dryer fell off my bathroom shelf the other morning, and smacked my left wrist. Maybe I should just stay on the couch. That seems to be the safest place for me lately.
Other than a little bit of bruising, and a fairly big bruise to my ego, I’m fine, although I’ve been feeling a bit off these past few days (both emotionally and physically).
The past few weeks have been difficult, to say the least. I had started writing a few posts that I had intended to finish, but then my cousin died, and everything else took a backseat. I haven’t really had time to adjust to the new semester, and it has been difficult to reflect on some of the topics that I wanted to write about.
Walking to campus for the first time since break really tired me out. I really felt out of shape. My ankle was sort of swollen by the time I got home, which has never happened before. And the first day of school, I woke up and felt “wasted.” And if you have lupus, you know exactly what I’m talking about. My head just didn’t feel right, like I’d never slept, and I felt vaguely hungover.
On the other hand, though, the last few times I’ve exercised, it has actually felt energizing, rather than energy depleting for the first time in over a year.
Given the physical (lack of sleep) and emotional toll that the past few weeks have taken, I am surprised that I haven’t flared.
That’s all I have…for now…
Sunday, January 11, 2009
Making Sense Of The Senseless: Things Left Undone
First and foremost, I would like to thank everyone for your words of encouragement and support during this difficult time. They are appreciated more than words can say.
*****
Several months ago, I had addressed an envelope to the wife of my cousin, preparing to send her a card of encouragement. I couldn’t imagine where she drew the strength to care for a sick husband and four young children. The day I went to send the card, my parents informed me that my cousin was doing badly, so I opted not to send it. The card had been in a drawer, and I had yet to write and send it. The morning my cousin died, before I had been informed of his passing, I finally wrote the card to his wife. But then my day got crazy and I wasn’t able to send it.
At first, I felt relieved that my lame platitudes, at what was really an awful time, had not been received. I felt that nothing I could say or do in such a time of uncertainty was enough. But as I started reading “When Bad Things Happen To Good People” by Harold Kushner, I realized that maybe such a card, telling my cousin what a strong and amazing person I think she is, is exactly what she needed.
In such times of despair and anguish, what is it that we really need to help us through? As much as I am broken up about the death of my cousin, I can only imagine the pain that his wife and children are feeling.
I don’t really feel like I’ve been endowed with the capacity to cope with something like this. I haven’t gotten dressed in days, and if I’ve had to, it has been with minimal effort.
To quote myself in an e-mail to a blogger friend, I wrote, “It’s funny how when you’re ill, you think you know all the right things to say – and then life presents a situation where you are powerless to make it better. It’s odd, too, because right now, lupus and RA don’t seem so bad. That’s pretty sick, isn’t it?”
****
A few years ago, after the death of a high school classmate, my mom suggested that I read, “When Bad Things Happen To Good People.” I refused. When I got sick, my mom found a way to sneak this book into my apartment. But it wasn’t until I was trying to process my grief over the death of my cousin that I pulled the book from my shelf to read.
As I peeled back the cover, my hands were shaking. Can a book induce fear just at the sight of it? Maybe it’s what the book contains that scares me – answers to a question that seems unanswerable. I don’t want to ask why because I don’t think that there is any answer that will be acceptable.
*****
What has bothered me most about the death of my cousin is the suffering he went through, which ended up having the same outcome as if he would have refused treatment altogether. The other thing that gets me is the effect his death has on those he has left behind. So many good people… so much sadness… and no one deserved any of it.
When people in our lives, or ourselves, are senselessly struck down, it’s easy to question.
When I got sick, I turned my back on religion, partly out of anger, but mostly out of confusion. So you can understand my squeamishness at reading a book authored by a rabbi.
*****
I would say that this is really the third (major) time in my life that I have had to deal with the passing of a loved one. When I was seven, my grandfather, my mother’s father, died unexpectedly. Just the week before, his doctor had given him a clean bill of health, and guaranteed him 20 more years of life. Just one week later, he was gone.
Before that, I don’t think I really understood death. My notions of it were confused and it was a harsh reality to face. Then, when one of my high school classmates died my senior year of undergrad, I had a really difficult time dealing with it. Again, there were so many things I didn’t understand. While we hadn’t spoken or seen each other since our graduation from high school four years earlier, I remembered her being one of those people who transcended groups. She literally was a friend to everyone. I was in her group for the fashion show for marketing class, and I remembered her bubbly personality. She died just a few days short of her 21st birthday. Why would she never get to celebrate that milestone? I began to think how unfair it was, all the opportunities in life she would miss. And of course, I wondered why. And now, as my life is touched, again, by the loss of a loved one, I wonder why the world can be so cruel.
*****
Because Jewish law requires burial as soon as possible after a person dies, my cousin died early Wednesday morning and the funeral was held on Thursday. There was no way for me to arrange a ride to get home in time for it, but I wanted to.
I ended up going home for a few short hours on Sunday in order to pay my respects to his family. I was able to hold it together while talking to his mother and three brothers, but when I got to talk to his wife, I lost it.
There I was, in my cousin’s time of grieving, and she was comforting me, telling me that we would find the strength to get through this.
And I can only imagine that when friends and family leave, and my cousin’s children go back to school, that the realization of his death will finally hit my cousin’s wife. And I can only hope that she will find the strength she needs from those closest to her.
*****
One line from “When Bad Things Happen To Good People” that really resonated with me was something early on: “[…] when we cry out to G[-]d in our anguish, G[-]d responds by sending us people” (xi).
As I have said often, illness (or any other difficult life passage) is a great way to weed out those who are not true friends. However, it is also a way of discovering who will be there no matter what.
“But, of course, we cannot chose. We can only try to cope [….] [and] the really important question is not why bad things happen, but where we will find the resources to cope when they do happen” (xiii, xiv).
And I think this is true of this blog. While I think we all attempt to answer the “why” question at one time or another, we are much more focused on what we can do to help ourselves and others cope with experiences that we have already had.
As I think about the fact that I have not had my diagnosis for a year, or that I have not been on all of my current medications for a year, I realize that as time goes on, the “why” piece matters less and less. Because it isn’t why we have to deal with the cards we’re dealt, but how we deal with the cards that is what really matters.
*****
Beyond sadness inevitably lies fear. If a wonderful man, an adoring husband and father, a successful lawyer, one of kindest people you would ever want to meet, is taken away so tragically, it makes us realize that it can happen to anyone at any time.
In some ways, I feel like life is always about the cards we don’t send or the things we don’t say or do, until we realize that the window of opportunity has closed and we are no longer able to do them.
Unlike most of us, my cousin and his family had no financial strings. They had the power to seek out any doctor in the entire world. And still, there was nothing that anyone could do to change the situation. My cousin didn’t die from cancer. He died from radiation-induced dementia, a condition that can debilitate someone who has had high levels of radiation to their brain, depriving it of oxygen.
It really makes me think – and wonder – about whether the treatments we are presented with by our own doctors are really worth it. Do we really understand the risks? I think we understand percentages, but I don’t think we ever stop to consider that we might just be that 1% who is hurt more by the treatment than the actual disease.
But I don’t think drugs and treatment are an absolute. I think that at some level, in the back of our minds, we all have a point that we are willing to go to. And the one thing I can say about this situation is that I don’t think my cousin would have wanted to continue in the state he was in for an indefinite amount of time. But that doesn’t mean that he deserved cancer and to die, to never see his children grow up, to never live another day on this planet.
*****
“Innocent people do suffer misfortunes in this life. Things happen to them far worse than they deserve – they lose their jobs, they get sick, their children suffer or make them suffer. But when it happens, it does not represent G[-]d punishing them for something they did wrong. The misfortunes do not come from G[-]d at all” (60).
In opposition to everything most of us have been taught, Kushner suggests that “sometimes there is no reason,” that even G[-]d is sometimes powerless to change situations (63). He goes on to suggest that when a plane crashes, we like to think that all of those people were cosmically connected somehow, and that those who were supposed to be on the plane and missed it by chance, were somehow better than those who were on the plane, but that this line of reasoning is completely untrue.
In some ways this is reassuring – that G[-]d does not will the tragedies of the world on people. On the other hand, though, if G[-]d is not responsible than who or what is?
Kushner further suggests that the events in our lives that anger and sadden us are the same events that anger and sadden G-d because “G[-]d finished His work of creating eons ago and left the rest to us” (75).
In some ways, it makes me feel better to know that all of the headlines I read each day with people killed here and there are random acts of violence. But if there is nothing controlling the universe, then how do we stop it from spinning out of control? Maybe the answer is that we don’t.
Lupus, cancer, and all of the other diseases in the world do not have consciences. They don’t pick their victims based on the moral worth of that person. They happen because the genetic conditions are ripe for them to occur. It’s not more complicated than that, although somehow, even understanding this explanation, we manage to complicate things by searching for answers to questions that no one can provide the answers to.
*****
While Kushner doesn’t always tell us what we want to hear, the book is written in a gentle, almost soothing way. And it becomes obvious that the reason for this is because he has suffered, as well.
In some ways, Kushner’s conclusions are found wanting. We try to find meaning in situations where truly no meaning exists. We try to find words and actions for situations where our capacities as humans fail us. We are ever caught up in a cycle of suffering and coping, and we aren’t always good at doing either.
There are two lessons that I take from “When Bad Things Happen To Good People”. They aren’t as earth shattering as I had hoped they would be, but they do give me some sense of hope. The first is that sometimes, no matter how hard we try, we are unable to make sense of things. Sometimes there is no reason. But in the face of suffering, we are lucky if we have people around us to support us.
And maybe we get to see who people really are when they are faced with adversity. I feel like I have such a unique bond to my cousin and his wife because in their adversity, they let me in. They let me see them at their worst, and I think I actually got to see the best in them.
*****
(Kushner, Harold S. When Bad Things Happen To Good People. New York: Schoken Books, 1981.)
*****
Several months ago, I had addressed an envelope to the wife of my cousin, preparing to send her a card of encouragement. I couldn’t imagine where she drew the strength to care for a sick husband and four young children. The day I went to send the card, my parents informed me that my cousin was doing badly, so I opted not to send it. The card had been in a drawer, and I had yet to write and send it. The morning my cousin died, before I had been informed of his passing, I finally wrote the card to his wife. But then my day got crazy and I wasn’t able to send it.
At first, I felt relieved that my lame platitudes, at what was really an awful time, had not been received. I felt that nothing I could say or do in such a time of uncertainty was enough. But as I started reading “When Bad Things Happen To Good People” by Harold Kushner, I realized that maybe such a card, telling my cousin what a strong and amazing person I think she is, is exactly what she needed.
In such times of despair and anguish, what is it that we really need to help us through? As much as I am broken up about the death of my cousin, I can only imagine the pain that his wife and children are feeling.
I don’t really feel like I’ve been endowed with the capacity to cope with something like this. I haven’t gotten dressed in days, and if I’ve had to, it has been with minimal effort.
To quote myself in an e-mail to a blogger friend, I wrote, “It’s funny how when you’re ill, you think you know all the right things to say – and then life presents a situation where you are powerless to make it better. It’s odd, too, because right now, lupus and RA don’t seem so bad. That’s pretty sick, isn’t it?”
****
A few years ago, after the death of a high school classmate, my mom suggested that I read, “When Bad Things Happen To Good People.” I refused. When I got sick, my mom found a way to sneak this book into my apartment. But it wasn’t until I was trying to process my grief over the death of my cousin that I pulled the book from my shelf to read.
As I peeled back the cover, my hands were shaking. Can a book induce fear just at the sight of it? Maybe it’s what the book contains that scares me – answers to a question that seems unanswerable. I don’t want to ask why because I don’t think that there is any answer that will be acceptable.
*****
What has bothered me most about the death of my cousin is the suffering he went through, which ended up having the same outcome as if he would have refused treatment altogether. The other thing that gets me is the effect his death has on those he has left behind. So many good people… so much sadness… and no one deserved any of it.
When people in our lives, or ourselves, are senselessly struck down, it’s easy to question.
When I got sick, I turned my back on religion, partly out of anger, but mostly out of confusion. So you can understand my squeamishness at reading a book authored by a rabbi.
*****
I would say that this is really the third (major) time in my life that I have had to deal with the passing of a loved one. When I was seven, my grandfather, my mother’s father, died unexpectedly. Just the week before, his doctor had given him a clean bill of health, and guaranteed him 20 more years of life. Just one week later, he was gone.
Before that, I don’t think I really understood death. My notions of it were confused and it was a harsh reality to face. Then, when one of my high school classmates died my senior year of undergrad, I had a really difficult time dealing with it. Again, there were so many things I didn’t understand. While we hadn’t spoken or seen each other since our graduation from high school four years earlier, I remembered her being one of those people who transcended groups. She literally was a friend to everyone. I was in her group for the fashion show for marketing class, and I remembered her bubbly personality. She died just a few days short of her 21st birthday. Why would she never get to celebrate that milestone? I began to think how unfair it was, all the opportunities in life she would miss. And of course, I wondered why. And now, as my life is touched, again, by the loss of a loved one, I wonder why the world can be so cruel.
*****
Because Jewish law requires burial as soon as possible after a person dies, my cousin died early Wednesday morning and the funeral was held on Thursday. There was no way for me to arrange a ride to get home in time for it, but I wanted to.
I ended up going home for a few short hours on Sunday in order to pay my respects to his family. I was able to hold it together while talking to his mother and three brothers, but when I got to talk to his wife, I lost it.
There I was, in my cousin’s time of grieving, and she was comforting me, telling me that we would find the strength to get through this.
And I can only imagine that when friends and family leave, and my cousin’s children go back to school, that the realization of his death will finally hit my cousin’s wife. And I can only hope that she will find the strength she needs from those closest to her.
*****
One line from “When Bad Things Happen To Good People” that really resonated with me was something early on: “[…] when we cry out to G[-]d in our anguish, G[-]d responds by sending us people” (xi).
As I have said often, illness (or any other difficult life passage) is a great way to weed out those who are not true friends. However, it is also a way of discovering who will be there no matter what.
“But, of course, we cannot chose. We can only try to cope [….] [and] the really important question is not why bad things happen, but where we will find the resources to cope when they do happen” (xiii, xiv).
And I think this is true of this blog. While I think we all attempt to answer the “why” question at one time or another, we are much more focused on what we can do to help ourselves and others cope with experiences that we have already had.
As I think about the fact that I have not had my diagnosis for a year, or that I have not been on all of my current medications for a year, I realize that as time goes on, the “why” piece matters less and less. Because it isn’t why we have to deal with the cards we’re dealt, but how we deal with the cards that is what really matters.
*****
Beyond sadness inevitably lies fear. If a wonderful man, an adoring husband and father, a successful lawyer, one of kindest people you would ever want to meet, is taken away so tragically, it makes us realize that it can happen to anyone at any time.
In some ways, I feel like life is always about the cards we don’t send or the things we don’t say or do, until we realize that the window of opportunity has closed and we are no longer able to do them.
Unlike most of us, my cousin and his family had no financial strings. They had the power to seek out any doctor in the entire world. And still, there was nothing that anyone could do to change the situation. My cousin didn’t die from cancer. He died from radiation-induced dementia, a condition that can debilitate someone who has had high levels of radiation to their brain, depriving it of oxygen.
It really makes me think – and wonder – about whether the treatments we are presented with by our own doctors are really worth it. Do we really understand the risks? I think we understand percentages, but I don’t think we ever stop to consider that we might just be that 1% who is hurt more by the treatment than the actual disease.
But I don’t think drugs and treatment are an absolute. I think that at some level, in the back of our minds, we all have a point that we are willing to go to. And the one thing I can say about this situation is that I don’t think my cousin would have wanted to continue in the state he was in for an indefinite amount of time. But that doesn’t mean that he deserved cancer and to die, to never see his children grow up, to never live another day on this planet.
*****
“Innocent people do suffer misfortunes in this life. Things happen to them far worse than they deserve – they lose their jobs, they get sick, their children suffer or make them suffer. But when it happens, it does not represent G[-]d punishing them for something they did wrong. The misfortunes do not come from G[-]d at all” (60).
In opposition to everything most of us have been taught, Kushner suggests that “sometimes there is no reason,” that even G[-]d is sometimes powerless to change situations (63). He goes on to suggest that when a plane crashes, we like to think that all of those people were cosmically connected somehow, and that those who were supposed to be on the plane and missed it by chance, were somehow better than those who were on the plane, but that this line of reasoning is completely untrue.
In some ways this is reassuring – that G[-]d does not will the tragedies of the world on people. On the other hand, though, if G[-]d is not responsible than who or what is?
Kushner further suggests that the events in our lives that anger and sadden us are the same events that anger and sadden G-d because “G[-]d finished His work of creating eons ago and left the rest to us” (75).
In some ways, it makes me feel better to know that all of the headlines I read each day with people killed here and there are random acts of violence. But if there is nothing controlling the universe, then how do we stop it from spinning out of control? Maybe the answer is that we don’t.
Lupus, cancer, and all of the other diseases in the world do not have consciences. They don’t pick their victims based on the moral worth of that person. They happen because the genetic conditions are ripe for them to occur. It’s not more complicated than that, although somehow, even understanding this explanation, we manage to complicate things by searching for answers to questions that no one can provide the answers to.
*****
While Kushner doesn’t always tell us what we want to hear, the book is written in a gentle, almost soothing way. And it becomes obvious that the reason for this is because he has suffered, as well.
In some ways, Kushner’s conclusions are found wanting. We try to find meaning in situations where truly no meaning exists. We try to find words and actions for situations where our capacities as humans fail us. We are ever caught up in a cycle of suffering and coping, and we aren’t always good at doing either.
There are two lessons that I take from “When Bad Things Happen To Good People”. They aren’t as earth shattering as I had hoped they would be, but they do give me some sense of hope. The first is that sometimes, no matter how hard we try, we are unable to make sense of things. Sometimes there is no reason. But in the face of suffering, we are lucky if we have people around us to support us.
And maybe we get to see who people really are when they are faced with adversity. I feel like I have such a unique bond to my cousin and his wife because in their adversity, they let me in. They let me see them at their worst, and I think I actually got to see the best in them.
*****
(Kushner, Harold S. When Bad Things Happen To Good People. New York: Schoken Books, 1981.)
Thursday, January 8, 2009
Unfortunate News
I found out tonight that one of my cousins, who was diagnosed with a brain tumor several years ago, passed away. He would come to Ann Arbor for treatment, so nearly every time, he and his wife would take me out to lunch. Here, while their family was struggling with illness, they were making sure that I was taken care of. And as I embarked on my own illness journey, my cousins were there to listen to and support me, despite having their own issues.
I became really close with them and felt like my cousin and I were partners in illness, which is not the kind of bond that you can have with just anyone.
I am having difficulty processing this now, so I probably will not be blogging for some time.
Sometimes life just does not make any sense...
(Click here for more information)
I became really close with them and felt like my cousin and I were partners in illness, which is not the kind of bond that you can have with just anyone.
I am having difficulty processing this now, so I probably will not be blogging for some time.
Sometimes life just does not make any sense...
(Click here for more information)
Monday, January 5, 2009
"Why Does Distance Make Us Wise?" A Lesson In Letting Go
I have never really been “into” New Years resolutions, not because I can’t follow through on them, but because I usually decide to change things about myself that are not really amenable to change. But this year, I’m in the mood to make a resolution that I make a concentrated effort at following through on – because I can.
I’m at a crossroads in my life where I can either take a leap of faith or not. It’s like when you’re a kid and you’re hanging from the monkey bars, too afraid to reach for the next bar, and too afraid to let go of the bar and land on the ground. So you’re just… stuck…
So whether its letting go of people in my life who I no longer have the things in common with that held us together, being okay with making choices in my life that others don’t agree with, or letting new people in, I have to follow my own intuition more, listen to others less, and know when my energy is better spent elsewhere and on other things.
That’s where I feel my life is right now. And I think I have a pretty good idea about why I am where I am.
So my resolution is to become better at letting go of things. I’m an over-analyzer; I analyze, re-analyze, and analyze some more. I’m not good at letting go of people or things. It’s a pretty non-discriminating quality.
But I have been thinking a lot about the people that have hurt me lately and the fact that I give them far more energy than they deserve. And I have been evaluating the friendships and relationships in my life that are truly meant to last.
And because there is always a lesson in “Sex and the City,” here is Carrie Bradshaw’s take on letting go:
I’m at a crossroads in my life where I can either take a leap of faith or not. It’s like when you’re a kid and you’re hanging from the monkey bars, too afraid to reach for the next bar, and too afraid to let go of the bar and land on the ground. So you’re just… stuck…
So whether its letting go of people in my life who I no longer have the things in common with that held us together, being okay with making choices in my life that others don’t agree with, or letting new people in, I have to follow my own intuition more, listen to others less, and know when my energy is better spent elsewhere and on other things.
That’s where I feel my life is right now. And I think I have a pretty good idea about why I am where I am.
So my resolution is to become better at letting go of things. I’m an over-analyzer; I analyze, re-analyze, and analyze some more. I’m not good at letting go of people or things. It’s a pretty non-discriminating quality.
But I have been thinking a lot about the people that have hurt me lately and the fact that I give them far more energy than they deserve. And I have been evaluating the friendships and relationships in my life that are truly meant to last.
And because there is always a lesson in “Sex and the City,” here is Carrie Bradshaw’s take on letting go:
“Maybe the past is like an anchor holding us back. Maybe you have to let go of who you were, to become who you will be.”
The past is just that – it’s the past. It’s done, it’s over with, and it’s time to move on. And while I know that, that is much easier said than done, I’m at a point in my life where I can no longer afford to ruminate about past slights and hurts, which I have done to others and others have done to me, decisions and indecisions, and all of the other things that are preventing me from moving forward in my life. I need to concentrate on the future. My future. And hopefully 2009 is the beginning of something great!
Wishing everyone a happy and (as) healthy (as possible) 2009. Sorry I’ve been a delinquent blogger these past few weeks. The holidays, getting together with family and friends, a slow Internet connection, and a lot of reading pretty much did me in. But it’s a new year, and I promise to be more consistent with blogging (and my medication schedule)!
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