On What Ifs And Never Agains

My birthday was last week.  It came and went.  I’m 26.  Big deal.  I’m feeling pretty down about it.

Last year at this time…

Last year at this time I was planning for a future that no longer exists.  

As much as the dreams of getting married and having children are at the forefront of my mind, I refuse to indulge these thoughts.  I won’t buy wedding magazines until I’m engaged.  And I won’t buy baby name books and baby clothes until I’m having a baby.  The reality of possibly never having either of those things is too harsh to act like they are a guarantee, only for them to turn out not to be.

I can’t let the dream get ahead of me.  I can’t wish for it to happen and wish for it to happen only to have it not happen.  Everybody’s getting married.  Everybody’s having babies, and I’m just trying to hang on and get my shit right (literally and figuratively).

The bottom line is that we do what we do based on the information that we have at the time.  That’s all we can really go on.  We can’t change the past, and we can’t predict the future, no matter how much we would like to think we can.

So is there a part of me that questions what the medications I’m currently on are doing to my future odds of having a child?  Absolutely.  But the reality is, if I’m not alive, I can’t have a child.  So I have to focus on the fact that at least on most days, I am functioning with the meds. 

I’m kind of messed up right now.  I don’t want to be one of those bitter, single people.  Worse, I don’t want to be a bitter, single, chronically ill person who can’t get a man and is sleeping her life away on the couch on Saturday night. 

Love is like heartburn.  Or heartbreak is like heartburn.  Or something like that.  I think there are some guys who don’t know the difference between love and indigestion.  It feels the same to them. 

Heartbreak feels like shit.  Heartbreak feels like getting sick all over again.

Is that weird?  Am I crazy that I compare the two?

When my life turned into an after school special a few years ago my life was everything I had always hoped it would never be.  My life became a cliché.  And I hated it.  And I fell into the arms of someone I thought I could trust.  And he lied and cheated, but will maintain to his dying day that he is an upstanding human being.  And then I met my ex, and I don’t really know what else to say about him.  I’m so conflicted.  Love.  And hate.  So much pleasure, and yet, so much pain.  

And you know what is so fucked up about this?  I’m not the fucked up one.  These guys are totally fucked up.  AND NOW I’M FUCKED UP BECAUSE OF THEM!

And I’m fucked up because of illness, too.  It was so much easier to fight when the fight mattered to someone other than me.  And I know that it should matter to me when it’s just me in the picture.  But it’s so hard.  It’s so hard to fight to feel good and to stay strong.

Where Do You Go When You Don’t Have Any Fight Left?

But then I realize these words do not express who I really am.  They express me when I am down in the dumps.  They are me after I was dumped by a man I dated for over a year, who I loved deeply, and thought was “the one.”  

From the first moment I was born, I came out kicking and screaming, and fighting.  

I thought that I would fight until the end, to the death, for everything that I believed in.

Where did that person go?

I let myself believe that my life was going to get better. 

And I believed that.  And was seduced by that.

Where is the person who was always waiting for the next shoe to drop, anxious and on guard, but ready for anything?  

What happened to that person, who wanted to make it through graduate school if it killed me, who now feels content to fade into the background and disappear?  

Where is the snarky 20-something who questioned my rheumatologist at every turn, who now feels like being so agreeable?  

Where is the person who put it all out there, on the floor, who wanted to live life with no regrets, only to succumb to the heartbreak of being with a boy disguised in the body of a man?

I need to cut my losses, pick up the pieces, and move on.  But I wonder how much more heartbreak I can take, physically and emotionally.  I’m fighting with GI hoping that they’ll throw me a bone.  And I’m fighting with the universe.  A bone.  Just one.  Is that so much to ask?  

I don’t want to be so caught up in what ifs (the future) that I miss the present.  And I don’t want to be so caught up in never agains (the past) that I miss the present, too.  So how to cope with the unfortunate things that life has thrown at me, all the while remaining positive, upbeat, and happy?  How do I make myself a better person, despite the hurt and pain that others have caused?

How do I battle back against all odds? 

Give And Let Give

“You can’t know how you would behave in a crisis until it drops out of the sky and knocks you down like a bandit: stealing your future, robbing you of your dreams, and mocking anything that resembles certainty. Sudden tragic events and even slow-burning disasters teach us more about ourselves than most of us care to know” (7).

- Lee Woodruff, “In An Instant”

*****

As I mentioned at the start of the summer, I have been doing some volunteer work at a local hospital. I really want to talk about the experience, but I am going to keep this sort of general and vague, in order not to violate the privacy of anyone involved.

That said, I have been truly amazed by this experience so far. For me, I wanted to do something fulfilling (and outside of academia), and I also wanted to try and make the hospital a less imposing place for me to be. I didn’t want all of my hospital experiences to be as a patient, to be only on the side of the vulnerable and helpless.

And I’ve seen it now, from the other side. Patients’ families have their own private clubs. It’s like the way it used to be at the airport. They step off of the elevator and run into each others arms. They share in each others joy and sorrow. They celebrate progress made, organs procured. And they mourn losses and setbacks. And they do this together.

I know from my experience as a patient, it is worse to be a family member; watching, waiting, hoping, praying. And to see how these families persevere, given great odds and uncertainty, is truly amazing to me. You’re never quite as alone as you may feel that you are.

I’ve also seen patients come back to visit nurses, to show their appreciation. Patients that were on the brink of death. And I’ve seen nurses smile such large smiles, a combination of pride and admiration, a side so rarely seen. And this is what it’s about. It’s not about what happens in the open, when doctors come to tell families how surgery went. It’s about the moments that happen behind closed doors; the moments when doctor, patient, family, nurse, and all others involved become one, coming together to make sure that the patient gets the best possible care and treatment.

Having seen it on all sides, it’s not easy, no matter which way you look. But it is possible. It is possible that all parties involved will have one common goal; to see the patient through this medical crisis. Despite the minimal information provided, I will say that in the unit I volunteer in, the patients are critically ill.   And I feel lucky that, given my own improvement in health, I am able to donate some of my time to others.

There are multiple sides to every story. What keeps me going is knowing that illness isn’t easy for anyone involved. It’s a journey, a constant evolution of learning and education. And because illness can be isolating, I think we sometimes forget that it isn’t just about us. It is also about our doctors, who try to help and heal us, our family and friends who try to support us, and even those naysayers, who try to make us feel like we are less human because we are sick. The patient experience is informed by all of these entities. And I’m not sure I would have been able to really see that if I hadn’t viewed things from the other side.

There are times in life when you do things, regardless of what may or may not come from such experiences.  Sometimes, in order to get, you have to be willing first to give.  Such is the case with my volunteering. I didn’t go in necessarily expecting to get something in return, and yet, I have. I have enjoyed this foray into the other side of things, viewing the chronic illness experience for perspectives other than that of the patient. And I think this experience has made me appreciate just a little bit more all of the people that are a part of my team, who help me live the best I can with lupus and rheumatoid arthritis.

*****

[…] I’ve looked at life from both sides now,

From win and lose, and still somehow

It’s life’s illusions I recall.

I really don’t know life at all”

- Joni Mitchell, “Both Sides Now”

Time Is A Luxury We Don't Have

“[…] I will remember you
Will you remember me?
Don’t let your life pass you by
Weep not for the memories […]”

-“I Will Remember You,” Sarah McLachlan

It’s spring, well at least technically, because if you’re in Michigan right now, it’s pretty freaking cold. But anyway, it’s spring. And with spring comes new life. No where is this more evident than in my blogging circle, as there are several bloggers who are pregnant/having babies. This is super exciting, but also gets me thinking a lot about time…

I recently read “Have a Little Faith” by Mitch Albom. I loved “Tuesday’s With Morrie” and decided to read Albom’s other books. In “Have a Little Faith,” he talks a lot about a second death, and not being forgotten after death.

And this made me wonder. Is this one of the reasons, maybe subconsciously, that many of us blog? On the surface, most of us do it to share our stories, and to help and inspire others. But could a small part of it also be that we worry, especially if we are taken before our time, that we will be forgotten? That the trials and tribulations, and the celebrations in our lives, will end up being and meaning nothing?

Time is different for those of us who are young and chronically ill. It’s no longer such an abstract notion, like it is for many healthy people our age. It is something more concrete, staring us in the face, and sometimes, if we listen hard enough, we can hear it ticking away.

I no longer measure time as far ahead as I used to. Days of little pain count for more than single days used to count for.

Maybe it’s not so much that we don’t have time, as it is that we don’t have the pleasure of being oblivious to the ticking of the clock. Maybe my friends won’t wake up tomorrow and realize the feebleness of the body, but 30 years from now, they’ll wake up, stunned that they are no longer the picture of youth. Hair grays, skin wrinkles, muscles become soft and weak, bones become brittle and stiff.

I know I am not ageless. My illnesses prove that to me everyday. I knew that less yesterday, and I will realize it more tomorrow. And I will be reminded everyday that some systems will work better than others. And eventually, some will fail, maybe even all will fail.

It’s not so much a question of if, but rather, of when. I’m not okay, per say, with this course of events. But I have no choice. That’s the way life is. And if time stops, there is no life at all.

Or maybe it’s that I wonder what causes so many of us to broadcast our lives, often very intimate details of our lives, over the Internet, to complete strangers. Is it because, when all is said and done, we are worried about being forgotten?

I stumbled across this article, which talks specifically about young people with terminal illnesses blogging about death, and chronicling their final days. The article states that our culture is very close-lipped when talking about death, but blogging is making such conversations more acceptable.

And there are many books these days – examples include “90 Minutes In Heaven” by Don Piper, and “The Five People You Meet In Heaven” and “For One More Day” by Mitch Albom – that in both fictional and non-fictional contexts, explore the question of what happens after life ends.

I’m not interested here in getting into what I believe or don’t believe about life and death. But I am interested in how the uncertainness of time impacts who blogs and why.

Why do we feel that this is our cross to bear, while most people live with their illnesses in anonymity?

Clearly, this is not a new question or concern. But who is exploring such concepts, and how, is new. Just as Facebook profiles come to immortalize those who have died, blogs too, become living records of those who write/wrote them.

So what do I want to leave behind? Right now, I’m just trying to figure out how to live life with illness the best I can. But we all have a legacy to share. And maybe, for me, this blog is a small part of that.

So how do you want to be remembered?

And how will make sure that happens?

(This summer I have plans to start a non-profit organization that deals with similar issues as those addressed in this post. More details to follow…)

Chronic Illness Is A Marathon, Not A Sprint

Recently, one of my good friends got a tattoo to commemorate running her first marathon.

I’ve been thinking about getting a tattoo for awhile, one that symbolically represents lupus and my illness journey. And my friend’s explanation got me to thinking about the fact that having lupus is like running a marathon…every day…for the rest of my life. Or living with any chronic illness really.

Acute illness is a sprint. You run hard and fast for a short period of time. You lose stamina, but you gain it back.

But chronic illness is a marathon. It’s a long haul. You need to learn how to pace yourself so that you’ll survive to the finish line.

Running a marathon takes discipline and training. It takes as much mental, as it does physical, agility.

While I may never actually take part in a “real” marathon – although I would like to try to walk a half-marathon at some point – I think the analogy of chronic illness as a marathon is a fitting one.

And some of the advice for marathon runners is fitting for “sick” people, too: get plenty of rest, drink plenty of water, practice self-care, and always wear comfortable shoes.

It’s hard to imagine that people who want and put their minds to running a marathon get tired of training. But they do. So just imagine how chronically ill people feel. They’re training for something they didn’t ask and weren’t prepared for.

So if we think about the courage and strength it takes runners to undertake such a feat, it should give us hope (and pause) about the courage and strength that we, as chronically ill people, have to get through each and every day.

We don’t always make it through on the top of the leader board. Sometimes our illnesses get the better of us. But ultimately, we push through and move on. And if we think of each day as a leg of the journey, we always have our eye on the prize and are focused on the end goal, whatever that may be.

(And in case you’re wondering, the jury is still out on my tattoo. I know what I want to get, and where on my body I want to get it, but there’s something that’s holding me back. I’m not sure what it is, really. A tattoo is so permanent. But then again, so is lupus. And lupus wasn’t a choice. So stay tuned…)

Holding Ourselves (And Others) Accountable

For me, there has been a lot of self-blame that has come with illness. It’s easy to see how that can happen when people who are young and healthy abound. That said, I think it’s important to step back and acknowledge that our illnesses don’t only affect us. They have a broad impact on our lives, including the people we surround ourselves with (even those who are young and healthy, and who act like they don’t care).

As I’ve counseled several friends recently in various aspects of their lives, it feels good to finally be able to give advice to others. I feel like I’ve had the monopoly on being the advice getter for a while now, so to be in the position of advice giver feels pretty good. And I think this is key. Sometimes we need to look at our situation from the outside in order to gain the clarity we need – or we need to look at the situation of others in order to look more positively and compassionately at our own.

From Patient to Doctor (Sort of)

I think sometimes we need checks on ourselves. Not like, “Oh, am I still breathing?” kind of checks, but rather, “Am I doing the best I can?” kind of checks.

Being chronically ill, rarely leaving the role of the patient, holds a person accountable. Every day, I am accountable to myself: Did I take my meds? And did I take them at the right time? Am I eating well and/or enough? Am I getting enough rest?

It is certainly tiresome and annoying to never turn off that voice inside my head that cycles through all the things I should be doing to be as healthy as possible. It is frustrating to have to be that disciplined. Because let’s face it, when you’re chronically ill, staying healthy can be a lot of work. But it is also good to have built in checkpoints for myself. When dealing with a set of unpredictable illnesses, it is often easier to deny having any control at all than to take responsibility for the small aspects that I do have control over.

Running around for eight hours on two Pop Tarts and coffee, for instance, is not smart. And at the end of the day, I pay for those kinds of lapses in judgment. I can’t push my body to the breaking point anymore. If I push, my body pushes back at me even harder.

And after round five*, I’m down for the count.

From Insider to Outsider

I’ve gotten used to the fact that only the people that truly care about you ask how you are doing. And it’s hard when you’re chronically ill, because that question is kind of a red herring. But when someone actually offers real compassion and concern, it really strikes a cord. And it is difficult to see the pain and anguish on someone else’s face when they really want to help, but there’s nothing they can do. If I could reach out to those people, I would tell them that just being there is enough. Because it so rarely happens that a person asks how you are doing in more than an obligatory fashion.

It’s hard when someone is asking how you are and they are standing face-to-face with you expecting an honest answer. Trying to be tough and fighting back tears, it seems the only real answer I’m able to give most of the time is I’m okay. I’ll be fine, even when my whole body hurts and the pain is so intense that I can’t think about anything else.

And I can imagine that when I do end up in a serious, long-term relationship, it will probably be much harder for that person to deal with my illnesses than it is for me. I think at this point I have a pretty high pain threshold, although I do tend to get cranky when I’m really in pain. But for a person to have no other choice but to sit idly by when a situation seems to demand action is difficult for anyone.

I know this because I’ve heard that same despondency in the voices of my parents many times. Just tell me what I can do for you. Isn’t there anything I can do? And usually, there isn’t. It’s hard to live in a world where few people are willing to help, show care or concern, and those who are and do, can’t really do anything. I feel the pain of that, too. And I definitely wish that I could spare them that pain.

From Doctor to Patient

I recently spoke with a doctor I know who is dealing with illness. This isn’t one of my personal physicians, so it’s not so weird. But I definitely felt bad, as this person expressed finally knowing what it was like to be a patient, and not liking it very much.

In some ways, I almost wish that at some point, all doctors could experience this. Not that I wish sickness on anyone, but I wonder how care and demeanor would change if doctors knew 1/100th of what it was like to be a patient.

Unfortunately, I guess I’ve gotten so used to being sick, that I forget that people can potentially go their entire lives without having a major health crisis. It seems unlikely, but I guess it does happen. So it definitely makes me wonder how many doctors have actually experienced what it is like to be a patient, especially in a long-term scenario.

I wonder: Do doctors get better care than we “non-physician” patients do? Are doctors’ bad patients or do they actually comply with the orders they are given by their own doctors?

It’s difficult for me to imagine how things would look if the situation was reversed and doctors became patients, but I can only imagine that it would give a whole new meaning to compassionate care.

From Patient to Care Giver

Lately I’ve been having difficulty managing my health. There are a lot of reasons for this, but it strikes me as odd because if I was a caregiver to someone else, I certainly wouldn’t shirk, or at least I hope I wouldn’t, on taking care of that person.

If it were an immediate family member or any other important person in my life who was ill, instead of me, there would be no decision about what would come first in my life. The priority would be obvious and straightforward (hopefully). Even if they didn’t want me to, I would probably try to drop work or school (or whatever) to be there for that person. So why can’t I do that when it comes to my own health? And why do so many of us push through, even taking on additional care giving tasks along with being chronically ill, yet so often put our own health and well-being at the bottom of the list?

“How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these.”

- George Washington Carver

Because the role of being a patient is ever-present for those of us who are chronically ill, I think we tend to forget that we are held accountable for other aspects of our lives, as well. As people, we are held accountable for our attitudes. No matter how little control we have in our lives, the one thing that we always (for better or for worse) have the power to control is our outlook on life. Because the truth is, doctor or patient, insider or outsider (etc.), we are the makers of our own happiness.

* how many times a day I take meds...

Picking Up The Pieces And Rebuilding Myself

“How many times can I break till I shatter?
Over the line can’t define what I’m after […]

Give me a break let me make my own pattern
All that it takes is some time but I’m shattered […]”

- “Shattered,” O.A.R.

*****

“I was bruised and battered

And I couldn’t tell what I felt

I was unrecognizable to myself

Saw my reflection in a window

I didn’t know my own face […]”

- “Streets of Philadelphia,” Bruce Springsteen

There has been a lot going on in my life lately. Between school and work, a crazy schedule that is no ones fault but my own, and everything else, I’m feeling completely overwhelmed. And something that I’ve realized is that while attempting to appear emotionally numb and unavailable, the truth is, I’m an emotionally needy person.

I’ve kind of had a major freak out, both physically and emotionally, and now I’m trying to pick myself up, and find the pieces missing from this puzzle that I call “me.” I guess you could say that right now my life is somewhat of a beautiful disaster.

I’ve also realized that in the pursuit of attempting to conquer the demons of my illnesses, I’ve lost myself. With illness came a profound sense of not knowing who I was. And while I was cognizant of that, the truth is that I never bothered to stop, go back, and find out who I actually am. And lately, and mistakenly, I have turned to others to validate who I am or convince me of who I am supposed to be.

I have been having people tell me things about myself that are 100% true, shockingly so. But it’s crazy that others have had to tell me those things in order for me to realize them. I know that sometimes we can only gain clarity by stepping outside of our own situation, but how do you step outside only to realize that there’s nothing on the inside that you recognize?

Self-discovery, or re-discovery, can only be done by me. No one else can do that for me. And it’s especially difficult to realize that at times, especially recently, my physical and emotional pain are indistinguishable. Illness brings up a lot of unresolved feelings, some that you don’t even recognize until much later when seemingly completely unrelated events bring them to the fore of your world.

What happens when you fill one void in your life, only to open one much bigger, that you never expected to find? I know that someday, and I hope it is very soon, I will find the answers that I’m looking for and I will be strong enough to take down the demons that are haunting me.

“Humpty Dumpty sat on a wall; / Humpty Dumpty had a great fall. / All the King’s horses / And all the King’s men / Couldn’t put Humpty together again!”

And just as Dorothy (Judy Garland) said in The Wizard of Oz (1939) upon her return to Kansas, “The next time I go looking for my heart’s desire, I won’t look any further than my own backyard; if it’s not there, then I never really lost it to begin with.”

I realize now that my physical health will not be okay until I rid myself of the self-blame that I am harboring. The feeling of being broken, damaged, and less than perfect, will continue to weigh me down unless I find a way to recognize that what has happened over the past several years of my life is no ones fault, including my own. To me, the scariest part of the last few weeks of my life has been feeling myself begin to flare, and literally, sending myself spiraling into a flare. Actually having control in the palm of my hand, and not being able to execute it. It’s difficult to have the knowledge that I can make myself feel better, and I don’t; that I should be taking care of myself, and that for many reasons, I haven’t been.

Right now I’m working on finding my way back to myself. And hopefully sometime soon I won’t feel quite so lost or alone as I do now. But this is something that I have to do… because life goes on whether I like it or not…

It appears that ten months after my diagnosis, I am no closer than I was then to accepting and dealing with the repercussions of these illnesses. But I can finally talk about them without crying, so that’s a step in the right direction…

Just consider this identity crisis number two million and one! Illness can be a real mind (you fill in the blank)...

Fighting Old Battles And Waging New Wars

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.

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.)

Left Of Center

“[…] I can’t stand to fly

I’m not that naive

I’m just out to find

The better part of me […]

[…] Even heroes have the right to bleed

I may be disturbed...but won’t you concede

Even heroes have the right to dream

It’s not easy to be me”

- “Superman,” Five For Fighting

***

“[…] I don’t know why I was so ashamed

Such a waste of time

And I don’t know who I was trying to be

All those lies […]

Oh and there’s always something

Or somebody right behind

Well we’re not meant to be everything

We’re just a piece […]

Oh I don’t know why I was so afraid all the time […]
I used to carry the weight of the world

And now all I wanna do is spread my wings and fly”

- “Weight of the World,” Chantal Kreviazuk

My life feels off kilter and unbalanced and I’m not sure what to do about it…

I’ve realized that having attempted (and sometimes succeeded) at superhuman feats in my not-so-long-ago past life, I’ve set the bar incredibly high for which to judge myself and for others to judge me.

And now, when I’m no longer physically capable of such acts, it’s no wonder that people can’t possibly begin to understand why (not). In some ways, I feel like I set myself up for (inevitable) failure, whether caused by myself directly or by forces out of my control.

As a senior in college, I wrote a 125+ page honors thesis. And it never occurred to anyone to tell me what a terrible idea that was. And now it haunts me that the person who wrote that, whose blood, sweat, and tears created it, no longer exists – I can no longer afford to be the person I once was.

And it’s ironic (I think) that so many of us “Type A-ers” are the ones that get autoimmune diseases. Because when we are no longer able to compete at our previous levels, all there is, is disappointment.

And we are, in effect, asked to make a lifestyle change. For me, though, that doesn’t mean changing something small. It means changing who I am as a person. It means taking my expectations of myself (and by extension, everyone else’s), packing them up, and burying them. And maybe the truth is that those “profound” lifestyle changes were changes I should have made a long time ago.

This line of thinking is related to the recent backlash I have received from people. Another possibility for this treatment is that while they would never admit it, the people who have been less than helpful know they wouldn’t be as strong as I am. I don’t say that in an “I’m so great” sort of way. What I mean is that they are afraid of how they would react, being in my position. On the other hand, maybe they’ve dealt with things in their lives where they received little support and are angry and take it out on those most vulnerable because they can.

And I hope that if that’s the case, regardless of what my experiences have been, that I will never do that to others. That I won’t become so bitter and resentful that I refuse to give others a break because I didn’t get one.

But the truth is, I think it’s admirable to admit when a specific part of your life infringes on all other aspects of it and you don’t pretend like things are fine when they aren’t. And I realize now that, that is what the problem is. I’m doing fine in my program, I’m pretty much on schedule. If I were flunking out, maybe then people would pay attention.

I’ve never been one of the “popular” kids. Throughout life, I have had various personal appearance (frizzy hair, glasses, braces on my teeth for far too long, etc.) and personality (smart, etc.) issues that warranted “dork” status.

When I got to grad school, though, in some ways, I felt like I had left that complex behind. Even though there were many times in that first year when I questioned my own abilities, by virtue of having been accepted into such a highly ranked grad program in my field of study, I was suddenly thrust into the spotlight. At every turn, professors who had read or heard about my thesis would go on and on about me.

And then I got sick and my tenure as a member of the “in crowd” receded once again, relegating me even farther down the food chain than I was before – from “dork” to pariah.

And that’s where I remain.

(And I don’t mean that to garner sympathy. I say that because I have a feeling that some of you out there will know exactly what I’m talking about.)

I’ve had so many thoughts and feelings swimming through my head lately.

It’s not as simple as burning pictures and banishing memories from my head. It’s about admitting to myself and others that the person I was before can no longer be. And it’s about learning to not be ashamed of that. And about learning to ask for help, even when I don’t want to.

When I was doing all my reading of books about lupus, rheumatoid arthritis, and prednisone, about how to dance with the devil and still make it out of hell, I wasn’t grieving. I was still trying to be an “outsider,” viewing my life from someone else’s perspective and not my own.

And I struggle with the fact that I have an appointment with Doctor C on Wednesday, and while I’ve thought of every possible way to get out of it, it seems that hiding or attempting to run from my problems is the unhealthiest way to deal with things.

The whole concept of “premature aging” pretty much sucks, but learning to accept your own fallibility, is unfortunately, a valuable lesson to learn. And I’m not sure that there are ever enough tears that can be shed or that we can ever truly accept the fact that we are only human.

And yet again, disclosure is a complicated thing. It’s hard to decide how open to be about such things. But what really frustrates me are the people who have no right to think they know what my life is like, and yet they compare themselves.

There are, however, friends I’ve made from the chronic illness virtual community who sometimes shock me because they get me so well. Even though we don’t communicate face-to-face, they can sometimes fill my wordless void and come up with the right words for me. And then there are people in-person whose unsympathetic, unsupportive words hit me like a ton of bricks. Shouldn’t the roles be reversed? How can someone that I’ve never met before get me so well, and someone I see on a weekly basis not know me at all?

Then there are those, who, in their own quiet way, are watching, and listening, and appreciating the effort that it takes just to get through the day. But inevitably, they are the ones who are all too familiar with the “identity shift” that takes place when you go from “healthy” to sick.

So, I guess what I’m trying to say in my own convoluted and verbose way is that I’m deeply confused. I’ve realized that I have to let go of my “pre-illness” self and learn to adapt to life as a new person and I have to learn which battles are worth fighting and which are not.

Fighting for control in a situation that you don’t have control over is like fighting for air with a plastic bag over your head. And the truth is, I haven’t exactly taken the bull by the horns with the little part that I do have control over. I’m just not that good at the self-care part.

That was then, this is now…

Heal thyself.

Life and let live.

(I’m not even sure how much sense this post makes because it has been written in fragments over the past week or so, but I figured it was long overdue, so I posted it anyway…)

Seeds of Change, Roots of Hope

I have attempted to keep my blog as apolitical as possible, but in light of yesterday’s election, I felt like I wanted to say something about the power that we have as bloggers.

For the first time in a long time, I am hopeful about the future. And given the physical and emotional ups and downs of the last year and a half, that is saying an awful lot!

And I’ve been trying to figure out why my generation (20-somethings) is so affected by the current political climate. And then I think about what my parents and grandparents have lived through – they have seen and been at the forefront of many important changes that this country has seen over the past half-century.

But I can’t say the same for myself. Sure, I was 16 when September 11th occurred and that profoundly affected my views on the world. But in a world where strife and hardship are a daily occurrence, I don’t feel like there has been any movement away from that.

And Barak Obama highlighted this historical trajectory in his victory speech (which you can read via NPR) early this morning – “A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination” – and it is this technological revolution, which has probably been the greatest change of my generation, which helped Barak Obama win the election (see BBC story about Internet strategy and the primaries). And it is that same technology that helps us advocate for people who are chronically ill everyday.

No matter what minority group you are a member of, even those that have yet to be spoken for, it is us, the everyday people, that have the ability to make change happen in America.

In a world where we daily fight for a shred of recognition, where some of us live in constant pain, without health insurance, people that don’t always understand us, doctors that speak another language, cures that don’t come fast enough or that are worse than the diseases themselves, by telling our stories and supporting each other, we set the stage so that change truly can occur.

I was thinking back to my parents growing up during the 1960s and the influences of that time that they have injected into my family. And the first thing I thought of was folk music. I think of songs, like “The Times They Are A Changin’” by Bob Dylan, which 35 years after it was originally written, holds as much meaning and promise as it did then:

For the loser now

Will be later to win

For the times they are a-changin’.

If you don’t know all of the words of the song, I strongly suggest you read them here.

And so it is not only the outcome of yesterday’s election that gives me hope. Everyday I have hope because of all of the people that I have been able to meet in the chronic illness community; people who support each other and who give each other hope that tomorrow can be better than today.

So no matter what your political affiliation is, we all have the power to create change.

Showing Up

Friday night I sat down to write a “poor me” post. I was alone in my apartment trying to recover from an exhausting week. But I didn’t end up finishing that post (as is evidenced by my lack of posting in recent days). Because the truth is, there were more ups than downs this week. And for once in a long time, the odds may finally be stacked in my favor.

As I’ve been writing about a lot lately, I’ve been having problems with getting my department on board about my illnesses and all that goes along with them. I had finally gotten a meeting with someone at the level of the graduate school. However, in talking with someone who has sort of been along with me during this entire process (even last year), I caught a break. The person I was talking to was very frustrated that I had been jumping through all these hoops without any help and offered to make a call to “a friend in a high place” on my behalf.

A half-hour later, I was in a meeting with that person, explaining the entire situation. And guess what? In two days time, more was accomplished than had been in the previous six months. This person called dozens of people for me, directed me to what forms had to be filled out by Doctor C, and was coordinating all of it. And Doctor C turned the form around in not even 24 hours worth of time.

Apparently, I’ve been talking to the wrong people all along, because I shouldn’t have been the one having to do the coordinating. But what is most interesting about this situation (other than the fact that it’s not what you know, but who you know) is that I was commended for taking the initiative to get “all my ducks in a row” before there was some emergency where they needed to be. While that was my whole point all along, I didn’t really see any positives where my abject failure is concerned.

However, in a roundabout way (about as roundabout as all of this coming together so quickly and seamlessly – finally!), this leads me back to an earlier lesson from this semester…

In my academic publishing class, my professor has stressed to us the importance of “showing up” for our daily scheduled writing times. In the beginning of the semester I rebelled against this notion. With a medication schedule and a newfound curfew/bedtime, I resisted any other attempts to further routinize my life.

But I’ve been doing some soul-searching these last few days, and I have realized that despite all evidence to the contrary, showing up really is key and I have a profoundly stupid ability to do so.
As I’ve tried to explain to several people, sometimes just my being able to be present in class, to drag myself to campus, to show up – is a big thing. And as I talk to others who skip class for no good reason, I realize that while others have to give me a break, I have to give myself a break, too (a shocking realization, I know).

But… [sigh] old habits die hard. And Thursday was a perfect example. Whether it’s the extra sleep I’ve been forcing myself to get over the last month and a half as per Doctor C or my newfound coffee habit (bad, bad, bad – I know), I do find myself with more energy than before. To me, though, extra energy still means exploit it, not conserve it. So I put in a 17-hour day. And it wasn’t until I hit my bed that I realized how exhausted and in pain I was. And I definitely paid for it all weekend.

Now the whole point of that is to say that now that my department is on board, I have to be more willing to ask for help and concessions when I need them. I didn’t just spend that last six months, and the last month in particular, trying to work these things out for nothing. And I should be more willing to take a day off when I need one. Everyone else does, so why shouldn’t I? After all, my whole purpose in this situation was to forcibly end my (and everyone else’s) denial that my life hasn’t changed since I’ve gotten sick. Because of course it has.

And now that things with my department are no longer on the fritz and I have people on my side, working to make sure that there are contingency plans in place, should I ever need them, I feel much more relaxed about things.

Of course, there are still hurdles to be jumped – personally, professionally, and medically – but for that matter, there will always be hurdles. At least for today, though, the hurdles are more my size. And even if I stumble along the way, at least I had the tenacity to show up in the first place.

* P.S. – Check out the first stop on the Women, Work, and Autoimmune Disease: Keep Working Girlfriend” virtual tour over at Rhymes With Migraine. The theme of that post goes really well with my post for today.

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

Why Do We Insist On Pushing Ourselves?

Why do we do this? Pushing our bodies harder, faster, farther, only to be hit with the realization that our bodies push back. And they usually push harder, faster, and farther than we had intended to push in the first place.

At least for me, this is a competition within myself. It’s not a competition to be the next supermodel or Olympic athlete. It’s about being better than myself. It’s a game I know I can’t win. And yet, I keep playing a game with myself that has an impossible course.

The past week or so has been busy at work, preparing my presentation. And since I’ve actually gotten a lot accomplished at the office, I’ve been taking the nights off. And I think, why can’t I do that more often? Because I’m a Type A control freak, that’s why.

It’s funny because I used to push myself, really push myself. I would tell myself that without feeling pain, I wasn’t really trying hard enough. But one day, that pain lasted for more than a day after exercise. And then soon enough, that pain was all I knew, whether I exercised or not. It felt like I was running a marathon, even if I was walking only a few steps.

And so, this thinking leads (some of) us to believe that we have made ourselves sick. But maybe, for me, at least, this constant nag to push is what keeps me going. It is no longer to see how many miles a day I can walk, but to see how many stairs I can climb with little pain, without wincing at every step, without feeling like a miniature firing squad is poised and ready to take down my knees.

I think we push and push and push, only to realize that it’s the small strides that really count. But in the intense academic environment that I find myself in, it’s hard to admit this when I’m surrounded by people just like me. Rather, I’m surrounded by people who are just like the person I used to be.

I haven’t lost all of my “push”. I still stress too much about things I shouldn’t, but I’m trying to work through this. For me, I push so I don’t have to justify myself to others. I guess I shouldn’t have to do this, regardless, but it makes me feel that I don’t have to answer questions that people don’t ask.

Reflections On An Altered Life

“So take a good look at my face

You’ll see my smile looks out of place

If you look closer, it’s easy to trace

The tracks of my tears”

(Smokey Robinson & The Miracles)

Maybe someday I will look back and not be able to imagine my life following any other trajectory than the one it is currently on.

But right now, that seems impossible. Right now I feel like I’m being led very slowly… nowhere. I still can’t believe that it hasn’t even been a year since I started having severe symptoms, since I knew that something was very wrong with me. It feels like a lot more time has gone by than that.

Acceptance is a hard pill to swallow. I say with caution that I think I have accepted my illness. What I haven’t accepted is myself with that illness. I haven’t accepted the loss of the person I was or the knowledge of the person I’m becoming. To some of you, maybe you ask what the difference is. I think I am able to say I have lupus and rheumatoid arthritis. What I haven’t learned how to do is live my life accordingly.

Sometimes when I go to Doctor C, I want to say that I wish we had met pre-illness. I mean, I wish we had met in the context of knowing who I was before all of this. I think a part of me is missing now, a part of me that I will never get back. Maybe I’ve lost the innocence and naivety that had once so gracefully carried me through life.

I try to spare others my pain. I can usually hide the pain from my face, but not from my voice and maybe not from my eyes. I have tried, and I think failed, at sparing my parents the pain of my illness.

No one asks for a sick child, let alone a twenty-something one newly on her own, yet so clearly unable to take on the world. I think while our parents are supposed to be there for us, they too, have their own lives to live. I know my parents will disagree with all of this, but it’s how I feel.

My parents spent four months by my side in the neonatal intensive care unit when I was born. I managed, completely subconsciously, to fight my way out of that. I didn’t know any better. I didn’t know anything at all. But now, I’m forced to wonder if there is any subconscious fight left in me. I can only hope that somewhere deep inside, there is a part of me that is bigger than these illnesses, a part of me that is fully prepared to take them on.

These are the things I am trying to keep in mind:
Others have it far worse than I do.
I haven’t been dealing with all of this for that long. It’s okay to feel the way I do about things. I just hope that sooner or later I come to some of sort of deal with myself, because I am going to be dealing with this for the rest of my life.

As I sat in my apartment, prisoner to the couch, I thought, maybe I’ll put some non-pajama clothes on and go to Starbuck’s. But the thought of an eight-block trek was too daunting. It’s funny. My friends are running marathons. I’m trying to tackle walking to Starbuck’s. I used to think that the only way to get through this would be to push myself to my limits. I’m not sure that’s the way to go anymore.

When I was at the doctor on Friday, Doctor C said, Well, I don’t want to change too much right now. There’s a part of me that believes getting off all of the medication and starting again might be smart. Another part of me thinks that’s really a dumb way to go.

Everywhere around me, life is moving, meanwhile, I’m sleeping my life away. I don’t disagree with Doctor C that more “restful” rest is necessary. But my life has never been about sitting by and watching others live my dreams. However, this most recent stint with the guys and gals in white (doctors) made me realize that pushing myself too far gets me absolutely nowhere.

I’ve realized that no one is going to tell me how to live my life. I have to figure that out on my own.

What I’ve come to realize is that whether the glass is half full or half empty, it is still a glass. So whether I see my life as impossible or worth living, it is still my life.

A while ago, someone told me that I had a mind shift. I had gone from seeing my diseases as taking over my life and being my life, to living my life with illness. Honestly, given the way I feel at the moment, I think that was the Prednisone talking more than me. And I’ve resigned myself to the fact that the physical pain will not resolve on its own, without medication. But I want to be sure that when the emotional pain resolves, it is because I have resolved it, not some drug that is supposed to be doing other things for me.

I have to say that I gained more respect for Doctor C after this last appointment. There were things there that hadn’t been there in the past. There was mutual respect. Doctor C seemed to actually care about me, asked what was going on in my life, listened to what I had to say about the Prednsione. I think that maybe Doctor C is starting to realize I’m not some dumb kid who complains all the time. I waited nearly a month of feeling pretty awful before I went to any doctor. I’ve given the Prednisone seven months to prove me wrong. I’m not rash. I don’t jump in and out of things. I think things through.

Honestly, most of this post was written pre-weekend. I am feeling a lot better than I have been the past few weeks. But this most recent flare or whatever you want to call it made me realize that things aren’t going to be easy. If the necessary thing to make me feel human again is a muscle relaxant/sleeping pill, I’m okay with that. I guess I’m still trying to read my body’s signals and figure out when I really need the help of a doctor or not. And it wasn’t until Doctor C asked me how I’d been sleeping that I realized, while I’d been attempting to get a good amount of sleep, it wasn’t working all that well. But last night, when my head hit the pillow, I didn’t have to think about anything but sleep, which is something I’ve been missing for a long, long time.