Monday, June 30, 2008

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.


  1. Good morning ...

    Wanted to let you know I gave your blog a shout out. You can check it out here.

    Have a great week!


  2. I've found that, for me, acceptance is more of a journey than a destination. Every time I think I've accepted my chronic illness, I'm set back again, back to denial, anger, depression - the whole bit.

    I try to take things a moment at a time. That includes both dealing with my constant pain and trying to accept it. Some days, I'm in a lot of pain and can accept it - not happy about it, but that's my life right now. Other days, I have low pain and can't accept it. Or maybe high pain and low acceptance, or low pain and high acceptance. All have happened. To me that means that, at least as long as my migraines are flaring out of control, some days will be better on the "acceptance" path than others.

    It is difficult to be young and chronically ill. Like you, I very much mourn the life I feel I've lost. Learning that there isn't going back has been very difficult for me. I still have a lot of anger and resentment toward my chronic illness, which at least helps me find the energy (most days) to keep fighting it.

    Thanks for a thoughtful entry, Leslie. It helps me to connect with others like me, to know I'm not alone.

    Be well,

  3. Thanks for your nice comment, MJ!