Saturday, April 14, 2007


Although everything I have written in these posts is true, sometimes I feel that they lack the true emotion that I felt when I was actually experiencing the things I discuss. I am no longer sick and I can't always remember how I felt about things when I was going through my hardships. I have started looking through my many journals and have found one consistency: inconsistency. I had days when I was very optimistic, days of being grateful and days of being completely fed up. Despite how vulnerable it makes me feel, I have decided to share parts of my journals, just snapshots. It's my hope that reading the entries will serve as a window into the private thoughts and feelings of one facing or overcoming illness. I will present them by year as I often didn't write the date. I will start with the earliest: 1997-1998. I was listed for a lung transplant but, in my heart, had no intention of getting one. I was working to keep myself healthy enough (emotionally, spiritually and physically) to avoid the surgery altogether. I was living on the opposite coast as my family and that sometimes made me feel very empowered and other days made me feel very alone.
I would love any feedback as to whether or not these kinds of journal entries are helpful and should be included in the book. Thanks!

Pre-Transplant Journal

Sometime in 1997 or 1998

My fear makes me stand in the way of my true self being able to speak. I will put fear aside and listen to the voice that needs to be heard.

I will not invent my problems about the future. I will only live in the now.

I do not need recognition or congratulations from others to know my spiritual growth. I will be my own cheering section.

From today on, I will allow myself to recognize what is too much for me. I will give myself permission to walk away when I am tired, speak out when I am hurt and hug when I am happy. I will listen to me. I will take care of me. I will set limits with others and let go of all the guilt that brings. I will have the courage to act on what I need.

Speaking my truth can cost me friends or jobs. Not speaking my truth can cost me my truth. I will give myself permission to change my mind later but speak my mind now.

I must let go of the fantasy that I can fix other people’s lives. I may sometimes help to guide or illuminate but I am not capable of healing another. Only they can heal themselves. Only I can heal me.

I can’t breathe very well so I can’t take care of myself. I can’t be myself when I feel this way. And the scary, scary, scary part of it is that I see no relief. Transplant? I really don’t want that. Alternative therapies? I have so little energy for that. Excuses. Such a fine line between excuses and being realistic. How much is it ok to let myself wallow and when do I need to start getting tough on myself?

All I feel like doing today is sleeping or staring off into space. I don’t want to think about my health anymore. I don’t want to be responsible for eating anymore. I don’t want to be strong anymore. I don’t want to get dressed. I don’t want to do laundry. I don’t want to deal with the gum stuck down in my bathroom sink. I don’t want to die…I just want a vacation from my problems. I want a miracle so I don’t have to work so hard.

So, with CF making an appearance in so many of my daily choices, how do I take back control of my life so I don’t feel like I’m at the sidelines while CF plays the game? CF does not own me but it sure feels like it rents me!

I must not confuse fear to move forward with lack of desire!

This disease ticks in my head like the ticking dynamite in a suspense movie. Tick, tick, ten more years, tick, more pain, more discomfort, tick, tick, oxygen tanks should be rolling in soon, tick…don’t even bother time is almost up.

Nobody knows how close these thoughts are to my consciousness every waking moment. If I’m not thinking about my mortality, whatever I am thinking about will soon bring me right back to it. I’m scared out of my mind.

I would like to know what it feels like to run for a long time, stop and then be able to catch your breath by sucking in deeply a few times.

As I get older, I think about things in terms of how hard will the task be to accomplish without having a coughing fit.

CF always has the last laugh.

I saw the image of two lovers tightly holding hands, seemingly afraid to let go. They held on as if their lives depended on it. I glanced into the corner and wished I could hold his hand like that. Because I need a life-line too.


Megan said...

Where's the dog, biatch?
I like the journal entries. It makes it more personable. Less. . . general. I'm going to leave it at that, because I'm about to stop making sense.

Megan said...

Oh, and I was totally 7-8 when you wrote that. YOU'RE OLD! <3

Sebastien Millon said...

I like the journal entries. Please keep them coming. I liked your previous entries though too, where you look back and reflect. I think it's interesting, to have journal entries, but I also like it when our current self-analyzes those past moments, it's like two different selves interpreting the same situation and sometimes the gap or what has been learned over time, it's just enormous.

Unknown said...

I really like the old journal entries but then I like when you talk about where you are now, how far you've come, how your perspective has changed or whatever that journey is.
I'd like to talk to you more about this in detail but it's too late at night for me to call you - I'm on NYC time. I have a very specific opinion about this, something we talked about in my writing class.

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