CCa #4: Who knows better than you

Sometimes the best advocate you could possibly have is the one who empowers you to be an advocate for yourself.  I have been extremely blessed with a mother who is the best advocate in the world, and completely fearless. We all have to learn to be our own advocates though, and the best way to do that is to stay true to yourself. 

Think about this: Every day we are faced with decisions to be made; some small and seemingly inconsequential and some are large and life altering.

Do we have our doctors, our nurses, our families, our teachers, our counselors and our friends be the ones who make decisions and be responsible for what happens to us?  Or, do we listen, learn and stay in tune with ourselves and our needs and make those decisions for ourselves? 

True story time:

My doctors wanted me to have a BIG surgery.  They talked to my mom.  They talked to me about it every clinic visit for months.  They also brought it up during hospital visits.  Apparently, this was one of those huge-life-altering-don’t-make-the-wrong-decision situations. 

My advocate is my mom.  She advised me to take a look at my options and educate myself on the procedure and then, after having all the data I needed I could then make an informed decision.  So I did.  And then I told my docs that I was declining the surgery because after looking at the data I didn’t see how it would improve my condition and it was way more risky than just living with what I had.  I could tell they felt strongly about it, but they respected my decision and told me so.

That was five years ago.  A few months ago during a hospital stay one of my docs came in to see me on rounds.  He told me that I had made the right decision not to have the surgery; that if I had gone through with it I may not be here today.

I believe that you have to stay true to what you believe, what you feel, and what you think is right. Having personal integrity has been one of the only ways I have been able to remain in control of this unpredictable situation of having a chronic illness.  I think it’s a good way to go.

Love,

Phoebe

Cca #3: Creating the future

All my life I have been creative, and not just artistically. There are infinite ways to create in life. My favorite is creating the future, and putting it out in front of me with no end in sight. Maybe this sounds odd, so let me explain myself.

When I was a little kid, maybe 5 or 6, I was told I probably wouldn’t be living past the age of 8. After I got past being afraid of what my body was going to do next, I began thinking of the future; my future.

That was the first time I seriously contemplated what I wanted out of life, and the things I wanted to do later on. I began creating my future, making my hopes and dreams the foundation for it. For me there was never an end to my existence, especially not at 8 years old. Since then I have continued to create my future, and here I am 15 years later about to celebrate my 20^th birthday. I have accomplished many things in my life, but my biggest accomplishment to date is the future I’ve created for myself.

It doesn’t matter what it is you are creating, but putting things in your future is very important. It can be anything from your dream vacation to Disney World, to eating ice cream next week. The vital thing is that you’re putting it there for yourself, giving yourself something to look forward to.

A lot of people go through life never really knowing what they want from it, or where they want to end up. That has never been me, and I feel that I owe my miracles to my perseverance and creativity.

You won’t get anywhere if you don’t know where you’re going.

Love,

Phoebe

Cca #2: Courage & Strength

Sometimes, those with chronic illnesses find themselves in a literal fight for their lives.  I have found that there is a certain disposition someone has to have in order to survive. Some people refer to it as courage, or strength. Because I don’t think the dictionary defines them adequately, I’m going to give you my personal opinion of what those words mean.

Strength: An inner power we all have that aids us in many of our endeavors, but the most basic of them being to survive.

Courage: Facing what you must and doing what is required to win (or, survive).  Courage has an aspect of action too, for in order to demonstrate courage, one must do something about it.

You have to have strength, and you have to have courage. Without them the unexpected turns of life will catch you by surprise, and knock you off your feet.

When people say that someone is courageous I think of people I know who are courageous. I think of the people I know who continue to fight every day, no matter what, without regrets. I think of people who have done things they are afraid or reluctant to do in spite of the fact that it’s difficult. Courage is rare in a lot of people, but common in people with chronic illnesses, and I am strengthened by their examples. 

These people understand that in spite of everything that has happened to them or how hard their lives are, one constantly must fight to conquer the next thing; these extraordinary people are putting the future there for themselves and for those they love.  They are living in the moment, never becoming complacent about their lives.

I can tell you from my own experience that I do it because I have to, because I have a desire to live, because I refuse to be a victim, and because I want the future I’m always putting out in front of me.

We are strong because we must be to get through life. We are courageous because we do what we have to do. And we are these things so we may live; without regrets, for as long we can.

Love, 
Phoebe 

Cca #1: Trophies & War wounds

While going through my pictures the other day, I found a picture of me in my high school graduation gown. Oddly enough, my first thought was “Oh yeah, I graduated”. Then I remembered how difficult it was to finally get on that stage so I could receive my diploma. Because of my CF I had a very hard time staying current with the other students in school. Partly because I was gone a lot and in the hospital, or because I didn’t have enough time to learn the things we were doing. So after being in and out of school, being home schooled for 5 years, and just barely getting all my credits in time, I made it!

Seeing that picture reminded me of a very valuable lesson:

It’s easy to get caught up in the things we don’t, wont, or can’t have, maybe even the things we have to do, or the treatments we have to get through. We’ll end up tangled in so much that we forget to stop and take note of our trophies, and war wounds. I’m here to tell you that it’s natural. But I’m also here to tell you that every once and a while you have to stop and take note.

Remember your accomplishments! Remember where you’ve been, what you’ve achieved, what barriers you’ve broken down, what hard battles you’ve won, and how strong you are now because of it. If you remember that, there’s nothing you can’t do, and no fight you can’t win.

Keep your sight on the things you want out of life, but don’t ever forget what you’ve already attained.

Love,

Phoebe