Sunday, May 30, 2010

I wish my life were more "normal"

In about ten days it will be six months since my transplant, and it's been about eight months since I found out I relapsed. Eight months since I put my life on hold, again, for the third time. The third time I've had to withdraw from classes, the third time my plans have been moved from the "in progress" box to the "indefinitely suspended" box. The third time I've found myself with nothing meaningful to fill my days - no work, no school, just medical stuff. Otherwise my time is mine and I can choose between internet, books, movies, TV, and the Wii for diversion.

Last time around I got completely stir crazy six months after my transplant and this time around it's the same thing. I'm ready for a change. This is why I don't really mind going to the hospital nearly every day of the week - it gives me something to do! People to interact with! A place to go!

I wish I were living the life of a "normal" almost 26 year old. Over the past six years the only time I felt somewhat "normal" was for a few months about five years ago, before I relapsed for the first time and had my first transplant, and the period from about two years ago until I relapsed in the fall. What do I mean by "normal?" Mostly not having my life be consumed by health issues all the time. Being able to go out and do things - grocery shopping, the post office, restaurants, which I can do now but since I'm not living on my own I don't have to. But mostly I mean the things that people in their 20s do - work, go to school, go out to bars, meet people, make friends, date, travel, have fun!

This is not to say that I've been miserable for the past six years. Obviously not. In fact I've made opportunities for myself that most people never have the balls to pursue, like living in France for two years. I just wish that my time in France didn't feel like an anomaly, like I had a break of two years bookended by years of treatment and hospitals and doctors. I feel so old. While most people my age only worry about what bar to go to this weekend and how to pick up a guy or girl, I worry about my blood tests and chemotherapy sessions and if I should make a living will or not (the answer is yes but I honestly don't know what I want to put in it. To be like Terri Schiavo or not?).

I just wish I could be more like everyone else. I would like my life to be less serious. It would be such a luxury to worry about homework or boy drama instead of my pulmonary function or getting rid of the leukemia in my CNS. To go out every night instead of spending every day at the hospital.



Anonymous said...

I have no idea what to say except hang in there. You sound like a very strong person and I'm sure in a few years time (if even that!) you'll be taking the world by storm. Bon courage!

Andromeda said...

I think we all have our "someday" feelings, especially at this age, so you're perfectly normal! We are all waiting for something to happen, money, school, love, and I know that you are worrying about that on top of all the health stuff, but everyone has something they wish would happen sooner. So while I can not even begin to imagine what it is to be in your situation, I understand (on a smaller scale) the frustration of living a life you wish was something different, and doing what you can to change it but it's not really up to you so sometimes you wonder why you even bother to try.

Since you're saying "someday" instead of "never", I think you still have lots of hope, and I am hoping for you too!

getyourselfconnected said...

One's health is the biggest concern. It all starts there. Plenty of people take so much for granted and get sidetracked on little things sometimes I want to scream!

Sorry you are feeling the weight of it all; Not sure how you do it but you do it.

Look on the bright side, in a more "normal" life you may have become a hopeless FaceBook addict! The horror!

Anonymous said...

Definitely someday, and hopefully soon! Hang in there. One day you will look back and see that yes, these months were a huge pain, but that you learned so much from all that and that it made you a stronger person.

From an external point of view, I do not feel your life was 100% on hold, even though it may look this way. You fought, you tried hard to get better and you will! Now I agree, dating & going to the movies is way more fun. But you will to!!!

au soleil levant said...

Kim - thanks!

Andromeda - I think the difference between me and other people who are waiting for something to happen is that they are in the process of doing things that will eventually result in a desired goal. You, for example, are in school and have an internship. You may not have your dream job, but school and the internship will eventually get you a job in a museum. I can't work towards any kind of goal right now - I'm at the hospital too often to take classes or work. I'm in limbo. Thanks for the good wishes.

GYSC - Ha! True, I could be one of those people who sends forth a constant stream of gripes about my life on every social networking site there is. Thanks goodness I'm not one of them! Thanks for the kind words.

Zhu - interesting perspective, that things weren't on hold. Hmmm. I'll have to chew over that one. From a certain point of view you're definitely right. If the ultimate goal is just being alive, then yeah, I've been working pretty hard towards that goal! Thanks.

getyourselfconnected said...

Having to put a life on "hold" is very hard for most to understand. I should not be telling this story, but here I go....

About 3 years ago I thought I had had a serious health issue. After an endless set of tests I was good to go with one minor med. At the hospital they asked me how long I have been running (based on cardio output) I told them I have never ran!

But for that 1 month, I was not talking to people, I would not connect with my wife, and I just wanted to be left alone.

Its a hard road. You have to feel the power inside you to pull you through. I know you got it.

au soleil levant said...

GYSC - thanks for sharing your story. It is indeed sobering, shocking, and quite isolating to deal with health issues. I'm glad everything worked out for you.

Leesa said...

Hi Mira..

I'm going to send you an email instead of commenting here...