Illness As The Ultimate Trump Card

This weekend, I had the opportunity to go up to Mackinac Island with some friends (you can find information about the Island here). I interned at the newspaper there for two summers in undergrad and have grown rather attached to the place.

The only “real life” example I can equate the Island with is the Cheers Bar. It’s the place you go where everybody knows your name. When I was there two years ago, it was like I had never left. People greeted me by name on the street, who I hadn’t seen or talked to for a year. It was a great feeling, especially because I know it is so rare to find that these days.

So as this past weekend approached, I realized that the fear and nervousness I was feeling, none of it had to do with the situation(s) I was acting upset over. In the end, it all came down to unresolved issues with illness. How was I supposed to feel, going back to a place that the last time I was there, I was working 100 hours a week, walking probably close to at least six miles a day, and not thinking that life could or would need to be any different? How do you go back to a place where the memories that exist are memories of a different person, in a different time, and maybe even a different life?

The Island felt the same as it did two years ago, despite the fact that I was too sick to visit last summer. I ran into many people I knew, who remembered me. And that was nice. It was comforting. But more than one person commented on how different I seemed. And the truth is, I’m not the same person I was when I went back to visit two years ago, or the person I was three or four years ago when I was living and working there. And maybe that’s the kicker. It’s hard to explain the perceptible changes when it’s the imperceptible ones that explain them.

And this visit, more than it reminding me of what I’ve gained, unfortunately reminds me of what I’ve lost. Health is something precious, and you don’t realize that until you don’t have it anymore. My recent flare really sent me into a depression because it made me realize how good I had felt the past few weeks, and how much I longed to feel that way again.

In some ways, the Island was the beginning of my journey with chronic illness. I’ve mentioned before that I had a severe episode of vertigo, which I have since discovered was autoimmune inner ear disease, a rare pre-cursor lupus symptom. That happened my second summer on the Island.

*****

I’ve been forced to do a lot of soul searching lately because a lot of things have been happening in my life. And the truth is, because everyone else’s judgments and opinions became so important, it became easier to fane talking about illness in favor of the status quo, in favor of me wearing a brave face rather than cracking under the pressure.

And the reason illness messed me up so much is because what little shred of self-esteem I actually believed in without other people having to tell me, was gone. And so, in looking to others, I looked for answers that I couldn’t find because none of these people could possibly relate. And in some ways, I’m glad. I had to fall pretty hard and fast to realize that if I rely solely on others to build me up, I might as well stop trying now. Especially with illness, I’m not going to be the person that some of the people in my life want me to be. And that’s not a bad thing. But they have to understand why. And that’s something I haven’t done a very good job of explaining.

And this has become a theme in my life. A 15-year friendship is in shambles. Because I’ve changed. I’m not the person I was then, and I’m not the person I was six years ago when I graduated from high school, and I’m not the same person I was two years ago when I graduated from college and thought that embarking on graduate school would be the best decision I ever made. And lately, no one is respecting my life decisions. And the real problem with this is the fact that no one has been listening very well to me the past two years. I’ve found myself more often than I would like at a level of unhappiness I never thought was possible and in a state of utter confusion. Illness can do a really good job of messing a person up. And if you are young, I think you really have to know and be secure in yourself to sustain such a heavy blow without it setting you back.

*****

We all have a trump card. We all have something we will not compromise on, and won’t demote past number one. I’ve learned this recently, the hard way. Realizing that you’ll never be higher on someone’s list than a four or a five is a pretty harsh reality. It makes you think about the things that you won’t give up, no matter who comes in and out of your life. And what I’m realizing is, for better or worse, illness is my trump card. It’s the one thing I can’t (and won’t) compromise on. But up until recently, I have been.

I don’t mean to say that illness trumps everyone else’s problems or priorities. But in the hand I’ve been dealt, illness is my “ace in the hole” (not exactly, but I’m certainly having fun with these “playing card” analogies). Getting back to the judgment idea, the one major thing that I’ve been judged on that I haven’t paid attention to are those who have rebuked my being on medication and lamented the potential problems I could have in the future from being on such powerful drugs. The thing is, if I spent my time worrying about this, I’d either be too depressed to function, or I wouldn’t be able to function at all because I would be too sick not being on medication. The moral of this story is that I can’t let other people’s judgments matter.

And it’s taken me a long time to get to the point where I could deliver the ultimatum that I’m about to, but I’ve realized that it has to be done. The people that want to stay and be in my life are going to have to do their part to attempt to understand. And the people that don’t see the need are going to have to get out. Because I can’t live forever with my trump card being the elephant in the room, the thing that everyone knows is there, but isn’t willing to talk about or acknowledge. It’s just not healthy for me, and it’s not really healthy for any relationships I hope to cultivate. So how about we all cut the crap and get real…

It’s hard to give up on people, and it’s hard to admit when someone is causing you pain, both physically and emotionally. But the truth is, no matter how I feel about a person, if they are consistently the common denominator in making me flare, they’ve got to go. Because when you are chronically ill, especially for me with lupus, relationships literally do become toxic. And my health and my life have to be worth more to me than someone else, no matter how difficult it is for me to put myself first. On the other hand, though, sometimes recognition and understanding comes from the most unexpected of places…

*****

It’s weird the times when the reminder of illness hits. A bill for blood work comes in the mail. It’s $89. I don’t have to pay it. And yet I find myself in tears. I thought I was over these phases already. Thought I was over feeling sorry for myself. But maybe the truth is, I’m never going to be over this because it’s always going to be with me.

Then there are times when the constraints are more obvious, and seem even more unfair and unacceptable. Times when I wish I could have a reprieve, if only for a few hours so that I could just feel normal. Times when I wish I could throw a rock through a window, and shatter everyone’s skewed view of who I am.

The truth is, when my friends are out living their 20-something lives, I live with the very real fear that illness-wise, things could get a lot worse before they get better. And I just want someone to get it. I want someone who will be there for me when I’m at my best and at my worst, and I want someone who I don’t have to wear the brave face with all the time. Because I’m exhausted, so tired of pretending that illness doesn’t matter and that my life hasn’t changed. And I want to know that when I can’t take out the trash (lame, I know) that there will be someone there to do it for me.

Illness makes time swirl around me, and makes me feel that everything is of great urgency and means nothing, all at the same time. And “normal” people don’t get this. They don’t spend time staring at the wall, wondering what new symptom will crop up, or what activity they’ll suddenly find themselves unable to do. They don’t have to worry about time the way I do.

*****
Sorry for the long post, but I’ve been having a hard time blogging lately, and this post really helped me get back into it and realize how beneficial blogging can be. So thanks for reading and sharing this crazy journey with me!

“It Does Not Say Lupus On My CV”

I was asked to write a guest post for lupus awareness month by my friend Maria over at My Life Works Today. The post, entitled, “It Does Not Say Lupus On My CV,” will not be posted on my blog, so be sure to hop on over to Maria’s blog to read it.

And while you are there, be sure to check out all of the other guest posts, which address various experiences with lupus.

Thanks Maria, for letting me be a part of your efforts!

The Need To Disengage

May (which is shockingly half over already!) is both lupus and rheumatoid arthritis awareness month, which is a little weird for me since I have both illnesses. I’ve been busy and I haven’t had much time to blog, but overall, I’ve sort of felt the need to distance myself from being forced to think about my illnesses.

I’ve even found myself avoiding my daily onslaught of reading blog updates. Why? I think it’s because this whole illness deal has all become a little too routine. I really have felt like I’ve been dealing with this for years, decades maybe.

Hmm…where do I begin? Let’s see… Parts of my life have become totally cliché and often seem akin to an after school special. How’s that for a one-sentence recap?

Things in my life have been weird lately. I recently started taking anxiety medication because, well, my life was kind of out of control. Everything felt overwhelming and I was in what can only be described as a constant state of “wigging out.” I was constantly on guard, waiting for the next disaster to strike.

I think my more relaxed self has become a bit snarky, maybe even too snarky for some people. But you know, I’m okay with that. Snarky is much better than drab, melancholic, depressed, unhappy, fatalistic – you pick the adjective.

Certainly, I’m not thrilled to have added a new medication to my ever-expanding repertoire. The downside to this latest development is that there are more side effects that I have to worry about and pay attention to. But all in all, I’d say that this was a successful move on my part. And I have a feeling that if you knew me in person before and saw me now, you’d say I seem more “chill” than I did before (at least I hope you would).

More than anything, though, this experience has made me realize that I need a vacation. Then I need to come back and become re-engaged. While I think that an occasional dose of escapism can be helpful, full on escapism can be detrimental. I need to be in control of things that I do have some modicum of control over.

Last year was so completely and utterly consumed by illness because I knew nothing else. I was walking around in pain, sick all the time. In some ways, it’s hard for me to reflect on that time because I’m really not sure how I made it through.

It’s funny when you start writing a blog post and then reality sets you straight. I’ve become adept at knowing that I have a certain window of time for each medication I take that I can flub up and still feel okay. I’m not running to my rheumatologist every time a new symptom crops up. I’m feeling more independent. And while all of this is true, yesterday I was hit by a flare that seemed to come out of nowhere. The nausea that ko-ed me on the couch in the morning didn’t clue me in. The unbearable fatigue that caused me to nap for two and a half hours didn’t either. It wasn’t until I woke up from the nap and my whole body was in pain to realize that I was flaring. And this is a bit frustrating because it makes life difficult – the lack of spontaneity that being chronically ill allows is something that I am still struggling with.

It’s times when I am caught totally unaware by a flare that I am socked back into reality, that I realize I can’t ignore my illnesses. It’s funny because I was never spontaneous before and it didn’t bother me. It’s like one of my favorite songs says, “Don’t it always seem to go/That you don’t know what you got till it’s gone.” But anyway, now that I have things and people in my life, reasons to be spontaneous for, it’s frustrating when I can’t be. And it’s conversations about that, which I dread. Where do I begin? How do I make someone understand that I can’t be up until 3 a.m., no matter how much I want to be? How do I explain that I look healthy, but that a lot of times, my immune system is wigging out? How do I get them to understand the connection between my physical and emotional pain? And how do I explain the disconnect between the two that sometimes occurs?

There are a lot of people in my life as of late who refuse to talk about issues. And at some point, the viability of each of those relationships is going to come into question. And in some ways, I think this is sort of a smaller version of the way my entire life is right now. At some point, I’m going to have to full thrust, grab my life by the balls and look at it for what it is. Just like these relationships are going to have to get unzipped and opened up, or thrown out. I’m going to have to get unzipped and open up to myself.

At some point, I will have to have the internal conversation with myself that goes something like Yo, Leslie. You have lupus and rheumatoid arthritis. Life is doable, but you have to acknowledge lupus and rheumatoid arthritis before they are breathing down your ass and knocking you off your feet.

Quite honestly, this conversation scares the hell out of me, because I know that not only am I going to lose a part of myself with this admission, but by trying to explain my illnesses, I’m going to lose others, as well. And I know I shouldn’t want people in my life who are going to bring me down or refuse to understand, but I’ve acted thus far as if these conversations don’t need to happen; that relationships wouldn’t have to change and that life would be easier by avoiding the subject altogether. Now I know that’s not true…

The question is no longer Do I stay or do I go?, because quite frankly, that’s not an option. It also isn’t whether these illnesses stay or go, because I’ve got them, so now I have to deal with them. The question is whether I live my life with illness at the forefront of my mind and get so bogged down that I can’t think about anything else, or whether I live well with certain constraints and hope that the people I decide to surround myself with attempt to understand and are willing to accept that this is the way my life has to be. Because clearly, avoiding the subject altogether is neither healthy nor productive. In fact, it’s just plain stupid.

I’m not going to lie and say that on the really bad days I won’t disagree with every word I’ve written here, because I probably will. But the first step in getting your shit together is admitting that you don’t have it together at all.

I can’t say right now when these conversations will happen or the form they will take, but I hope that the people they need to happen with can handle them. Sometimes I think we all need to take a step back, disengage and re-energize, in order to get back in, reengage, and face reality head on, no matter how hard reality is to face.

Learning To Stand On My Own

“Oh, why you look so sad? Tears are in your eyes […]

Don’t be ashamed to cry, let me see you through

Cause I’ve seen the dark side too.

When the night falls on you, you don’t know what to do,

Nothing you confess could make me love you less

I’ll stand by you, I’ll stand by you, won’t let nobody hurt you,

I’ll stand by you.

So, if you’re mad get mad, don’t hold it all inside,

Come on and talk to me now.

And hey, what you got to hide? I get angry too

But I’m a lot like you.

When you’re standing at the crossroads, don’t know which path to choose,

Let me come along, cause even if your wrong

I’ll stand by you, I’ll stand by you, won’t let nobody hurt you,
I’ll stand by you”

- “I’ll Stand By You,” The Pretenders

*****

“When the daylight’s gone and you’re on your own
And you need a friend just to be around

I will comfort you, I will take your hand

And I’ll pull you through, I will understand

And you know that

I'll be at your side, there’s no need to worry

Together we’ll survive through the haste and hurry

I’ll be at your side

If you feel like you’re alone, and you’ve nowhere to turn

I’ll be at your side”

- “I’ll Be At Your Side,” The Corrs

*****

I’d be lying if I said that this hasn’t been a difficult couple of months. Nearly four months ago to the day, my cousin died from radiation-induced dementia, a cousin that I had become close to because, as I’ve said before, we were “partners in illness.” This weekend was his daughter’s Bat Mitzvah. I went home to “celebrate,” but it was difficult. I know that Jeff was the type of person who would have wanted the party to happen, but it was hard to celebrate when there was such a deep void.

My cousin Cindy (Jeff’s wife) is incredible. She’s so strong on the outside, but I know on the inside she’s crumbling. And in many ways, I relate to her. I feel like I put the brave face on a lot of the time, but inside, I feel lost, hurt, and scared. There are times when I have cracked, when I have let the hurt show. Some wounds aren’t as quick to heal, as we would like to believe…

Aside from losing Jeff, the past few years have been spent dealing with a lot of turmoil; losing family, losing friends, losing my health, and at times, losing myself. Some people are in our lives for a brief time to teach us something about life that could only be learned through them. Others show us brief glimpses into ourselves and the people we want to become. Others still are in our lives for the long haul; they aren’t quick to leave. And some you can’t get rid of, no matter how hard you try (LOL!)…

I’m realizing that one of the most difficult parts of growing up is learning that it’s not as important to land on two feet, as it is, sometimes, to stand on your own. And to sometimes admit that you’re powerless to change certain aspects of your life, like illness, no matter how hard you try.

Most of the time, when I tell my friends things, it’s not so much for advice as it is for commiseration. If I’m excited about something, no matter how unexpected or off the wall it may seem, be happy with/for me. There have been some unfair judgments as of late, from people I never would have expected. People who have known me for years and years, and who have judged me on terms that I no longer feel I am capable of living up to.

I never realized that over a year of unknown illness could be easier than the first real year of actually dealing with illness as a reality. This year has been a difficult one. I feel as if school went by without me accomplishing much at all.

I can’t help but feel that many of my closest friends have gotten the short end of the stick and that over the past (almost) two years, I’ve taken more than I have been able to give. My life has been filled with physical and emotional upheaval, which at times has felt like more than I could handle.

And for those newer in my life, I often wish that they could have known me before, pre-illness. But since that’s not possible, I guess they’ll have to see beyond the walls that I’ve become so adept at putting up.

I’m grateful to everyone in my life in more than words can say, for the love and support, and the laughter and the tears, but there are some things that I have to do on my own. And I know that many people might not always agree, but I ask that you respect my choices and be confident that I know what is best for myself.

I have changed a lot in the past two years – surprised my friends in ways that no one, including myself, could have ever suspected. There are some things that have happened over the past several months that will probably never be talked about here. But the truth is, illness made me realize that life is too short to be flat-line all the time. Because lately, that’s how I’ve come to feel. Until recently, my world has been a dismal shade of gray. I’ve had to bribe myself to get off the couch. This has never happened to me before, and this is not the person I want to be.

In some ways, much of this is late-bloomer rebellion. But in other ways, it’s because I am still at the anger stage of coping. Some days I’m just plain pissed off…at everything and everyone…

I’ve realized as of late that I have done all I can to convince myself that illness won’t change my life. But at some point, the power of “positive thinking” turns into denial, which in turn becomes self-defeating. And I can no longer be that self-defeating person.

While I have always relied on others to boost me up, as many have, it’s time that I do some of the self-esteem boosting myself. It’s time that the chapter of my life spent dangling between young adult and adult comes to a close, and that I begin to live my life as an adult, making the big decisions for myself.

I’m saying goodbye to the old me and saying hello to the new me. Most of the changes are on the inside, but hopefully they’ll show a bit on the outside, too.

Good friends are hard to find, and even though many of us are geographically farther apart, you are still close to my heart, and I’m not sure I say often enough how much I appreciate those of you who have stood by me, and attempted to understand.

But the reality is that you aren’t always going to understand my decisions or my thought processes. But you have to trust that I know what is best for myself. In a lot of ways, I don’t really know who the hell I am. And that is something only I can figure out.

I’ve been working through a lot lately, realizing that I have been pretty depressed, and trying to have a more positive outlook on things. What I’ve realized recently is that chronic illness is just one of the many journeys that my life will take me on. I’m 23 years old. This isn’t the end. This is only the beginning.

*****

On a slightly unrelated note, I haven’t been blogging that much because I’m teaching a class spring term, which meets three days a week and is totally exhausting. I’ve also had some medication changes, which is keeping things interesting, as always. But more about all that another time!

The Struggle For Recognition

On the journey that is chronic illness, there are many struggles to be had. To me, the two biggest are the hard-won battles against ourselves and others.

I have been fighting with myself for over a year now, trying to make myself understand and recognize the fact that I am sick, that my life is different than it was pre-illness, and that it has to be that way if I am going to survive. This hasn’t been an easy task. But recently, I’ve forced myself to take part in activities that are illness related.

I was told at a meeting recently that for all intents and purposes, I could go without disclosing my illnesses if I really wanted to. And while that is true, and appealing in many ways, it seems wrong to simply sit idly by if I can prevent others from having the struggles that I’ve had.

And realistically, my health is pretty good at the moment, with a few flares here and there, which are mainly self-induced. Because I know what these diseases can do to people, if I have the strength to work on these projects now, I should.

After all, if we’re not willing to speak for ourselves, who else will?

*****

Last Saturday, a friend of mine and I completed the Arthritis Walk. We walked three miles in 80-degree weather. But it was an important step for me in acknowledging that my life has changed. Last year, I briefly considered the Arthritis Walk, but it was happening just a few weeks after I was diagnosed, and I didn’t feel physically or mentally able to do it. This year, though, I was determined. And I hope to put together a bigger team for next year.

I also attended the Fifth Annual Chronic Illness and Postsecondary Educational Symposium at DePaul University, where I presented on “Personal Problems As Public Issues: Dealing with Chronic Illness in the Academy.” You can access a PDF version of my presentation here.

Much of my presentation addresses what I have been working on in terms of chronic illness advocacy stuff here on campus. The projects are somewhat slow going. But I guess that’s what happens when trying to navigate the red tape of bureaucracy.

The keynote speaker at the Symposium, Karen McCulloh, who is the Executive Director of Disabilityworks at the Chicagoland Chamber of Commerce (http://www.disabilityworks.org/), was incredible. McCulloh has Multiple Sclerosis, and has severe vision and hearing problems as a result.

I so wish that other schools could have programs like DePaul’s Chronic Illness Initiative, which facilitates the successful education of students with chronic illness.

I definitely felt overwhelmed at times. So many people doing incredible things despite illness. There were times during the day that I wanted to escape to have a good cry. A lot of positive energy has been released from a lot of crappy experiences. It was amazing to see the physical and mental toll that illness has taken on people younger than me.

Overall, the conference was a good experience. Plus, I got to meet fellow chronic illness bloggers Laurie Edwards (A Chronic Dose) and Jenni Prokopy (Chronic Babe).

More than anything, though, I appreciated being in an environment where I didn’t have to explain everything, where I could just be myself. I still have this awful bruise from my blood draw over a week ago, and if I would have been presenting anywhere else, I probably would have made a point to cover it up somehow. But as I was getting dressed for the conference, I thought to myself: These are my people. I don’t have to worry about that. And I didn’t. And it was nice.

Even now as I sit here writing this, my arms are hating me after a long day of carrying my few purchases up and down Michigan Avenue. And it’s reminders like this that hammer home the point that I’m sick. The change of scenery, though, was much needed and very much appreciated.

*****

Recently, one of my good friends was ill and she called to tell me how strong she thinks I am because she couldn’t imagine having to be productive when feeling as bad as she did for any protracted length of time. This is one of those moments of connection that are rare. As McCulloh said in her speech, “We don’t know how much strength we have until we are called upon to use it.” I think this is very true. And sometimes, I don’t think we recognize the strength we have even after it has been deployed.

She also said, “We will always be in the position to educate.” I think this is true, as well. For chronically ill people, everyday is an example of continuing education. We try and stay up-to-date on information regarding our illnesses, we try and meet people who are like us, and we try to educate those around us. At times, this can be exhausting. But the truth is, we don’t fight illnesses. We fight the ignorance of people who only worry about issues that directly impact them. And the truth is, at one point or another, everyone’s lives will, in some way, be impacted by chronic illness. It might not be your issue today, but it might be your reality tomorrow…

Just thought I’d put it out there that today, May 1st, marks the beginning of Lupus Awareness Month, so it’s very fitting to be engaging in the struggle for recognition.

And don’t forget to check out this week’s Grand Rounds, which was hosted by Kerri from Six Until Me, and includes one of my posts.