There is a movie, You've Got Mail, that is single-handedly my most favorite movie of all time. I'm sure that I must have been the main character Kathleen Kelly in a previous life. Or, that had we lived close to each other, we would surely become best friends. During one particular scene of the movie, Kathleen writes a letter to a friend. A large chain bookstore has been built down the street from her small, independent children's bookstore. She wonders about her life and her business's future and writes:
Sometimes I wonder about my life. I lead a small life - well, valuable, but small - and sometimes I wonder, do I do it because I like it, or because I haven't been brave? So much of what I see reminds me of something I read in a book, when shouldn't it be the other way around? I don't really want an answer. I just want to send this cosmic question out into the void. So good night, dear void.
This quote resonates so deeply with me because I do lead a small, though valuable, life. I live with my family in the suburbs of Houston. We have nine (yes, nine) cats. I have a day job that both ardently love and can't stand at the same time. I also wonder if I continue living my life the way I do because I like it or because I haven't been brave.
You see, I have pulmonary arterial hypertension. Basically, I have a rare and progressive lung disease that causes extremely high blood pressure in my lungs. It is a very deadly disease that spans all ages, ethnicities, and genders. Those whose lung pressures do not respond to medication need a double lung transplant. In fact, that's what I was supposed to have when I was first diagnosed with this disease in 2011. A double transplant - two lungs and a heart. Those who are not diagnosed and do not receive treatment typically die within 5 years of developing the disease.
When I was first diagnosed I was 25. I was eager to find other humans with stories like mine - blogs, youtube channels, whatever I could get my hands on. I found a few - not nearly enough. I needed more representation of my story. Someone who knows what it's like to go through such a life-altering event and live that truth every single day of their life. So here I am, writing my own. Today is the day, friends.
I'm here because I want to be brave and share my heart with people like me. People who have Pulmonary Hypertension and who are going through this life the best way they can. I'm incredibly lucky. So far my body is responding very well to treatments. I currently take 6 medications for my disease each day, including a subcutaneous medication that is delivered via battery-powered pump that I wear 24/7. I am able to work, to exercise (with a few limitations), to go through my day without needing oxygen. Truly, I am fortunate.
This is my chance to show others what living a life with PH is like. To reach others who have PH and give them solidarity. A voice. To give myself a voice.
Hello, world.
-Nicole
No comments:
Post a Comment