Raw Honesty

Life is not always easy. Even in the spirit of optimism and reframing, there are still (and will always be) occasional dark moments. I am committed to sharing my experiences openly and honestly so I'd like to share why the past few days were so tough for me. 

Slowly, over the course of years, the upper lobes of my lungs have been losing volume, incapable of taking in as much air. If you put your hands and wrists together then, keeping your wrists together, open your hands so they make a straight horizontal line that's how our upper lobes are supposed to lie. Now, if you raise your hands to make a 'V', that's how my upper lobes look. 

Both of my upper lobes also have atelectasis (small pockets of collapse) and bronchiectasis (scarred, hardened, and damaged areas). All three of these conditions are permanent and irreversible. 

Last week's x-ray showed some increase in said permanent damage and explained my persistent lung pain. 

This is not something I normally give a lot of energy or focus to. However, each time I learn of added damage, it takes me back a bit. I've learned over the years that I need to feel it, accept it, then release it, but the thick of it is often super emotional. 

In these moments it feels like I'm running in a race against the clock. While there are so many exciting and promising advances coming up the pipeline for CF care, if there is too much permanent damage in my lungs, I won't benefit much from them. 

This race now feels like a relay race. I can "run" with all my might (do all my therapies, take all my meds, etc.) and yet, whether or not I win the race depends on my teammates who are beyond my control: science, government, care teams, and luck. A true test in feeling powerless.

You can see how this could become overwhelming. And in some ways, it was. There were many tears shed which helped me feel the intense emotions. I also shared with a close friend, was given a much-needed reminder of the importance of presence vs. 'going through the motions', and connected with others.

I was anchored by gratitude--remembering that to be 38 years-old with the lungs I have is luckier than so many others and grateful that my lung function is stable despite these changes, something that mystifies my CF team.

That gratitude prevented me from being dragged under by the strong current of fear and disappointment and, like my good friend said, was a necessity for balance. Acceptance.  

Now I'm in the release portion of the program and find myself in a much better place. I'm climbing back onto land, connecting with the things that matter most to me...the sweet spot. 

Fitting as it may be, I came across this quote yesterday. It really spoke to me--not in a morbid way, but as a beautiful reminder--so I thought I'd pass it along:

"Nothing you have today will last forever. Not your job, your house, or your car. Not the people who are closest to you. Not even the people who vowed to never leave your side. 

Take a moment and accept the fact that life is short and you don't have a lot of time to be with your loved ones. Someday all those people will no longer be around you and you can't possibly know when. Cherish them while you can."
                                                            ~ Mai Pham