My new life.

[Guest guest]

Two months ago I was at the gym with my brother followed by a shopping

trip with my mom. We worked out and I did really well. I was on IV

fighting something but really it was just a cough. The IV in my hand

bothered me. I felt different and that my freedom was being taken away

from me. (if I only knew then) What I did not think about was that I

was walking at any pace that I wanted to without problems breathing,

and without a thought about it. I was a MILD CF case. I hurried out

of the gym after the work out since I had to meet my mom up-town, so I

sped down the stairs to the subway without a thought. But I remember

how fast I did it. How fast I sped in and out, how fast I changed into

my clothes, how fast I put on my make-up and my stilettos (since I

never used to wear flat shoes, only high heels) and got to the place

that I met my mom. Today, I walked up and down the hospital hallway

faithfully holding my oxygen. My chest hurts, even when I want to

handle the pain, I simply CANNOT take a deep breath. My lungs don't

want to work.

Today I walked alone for the first time. I went downstairs to look

around the gift-shop. It took me awhile. But that's fine. It was in

the elevator that I saw my reflection. What happened to me? I thought.

Why can't I breathe, why so suddenly. I was so well, and now I can't

imagine not having the oxygen on my face. When I try it, not using the

oxygen, the air is hot, shallow, the air itself seems to want to hurt

me. Each time I hope that something has changed.

So can I call this my life? My new life? Or is this a stage. I

thought about this last night. It's unsafe that I call this a phase,

since I know it will change only marginally. But I don't want to get

down on the situation. I need to stay level-headed I tell myself. the

truth is that I feel that this is my new life. And now that we are

waiting for transplant stuff to move forward and that this is going to

be fairly swift, I feel that this is gods way of getting me ready. I

am finally the CF patient that I was not all my life. I respect the

disease. How hard it is, and how it can cripple. Until now, I did

not get what the big deal was. I was well enough not to get it. I

enjoyed a great standard of living. I had choices. And I guess that's

what it's about. Having choices. Today I feel I have few. I don't

even have the choice to be tired and give up even for a day. The cost

of the following day would be too much.

I don't like my new life, yet I feel privileged to have lived it, to be

living it. How I see the world now is the way the world should be seen

I think.

What I wish. Well, first thing in the morning I cry sometimes since I

think everything is back to normal. I have 10 seconds every morning

right when I wake up, that I think I am in my condo, in my own home and

that I am normal. That this was all a bad dream. When I sober up I

just wish that I could breathe. Back to the point in my CF that I

could breathe. As the day progresses I wish things like good blood

sugars, and a good post or an email from a friend. Long term I wish

that I battle this gracefully. It's not enough to go through this.

The more gracefully it's done the more benefit you will get from it.

And that I get my new lungs within the next year and a half and that

these give me new life. Even if it's only for a few years, I need to

feel what it's like to breathe easy. And then there are things that I

want to do. (my older brother) and I are going to do everything

we've wanted to. I also am going to find love and get married. That

is what I wish long term.

Natalia

24 w CF