So I’ve been gone from this blog for a bit, since I was released the hospital. I just needed some time away from it all. CF encompasses so much of my daily life, especially leading up to and during any hospitalizations. When I get out, and I’m feeling more at my baseline, I try to not think about my illness for a while. I was hoping for a little more of a “vacation” from CF, but it wasn’t cooperating. It only lasted a week. I developed another cough and my day to day difficulties crept back in well before I was ready for them. Now, I’m back to increasing my therapies to reduce my cough, trying to prevent another downslide and keep myself out of the hospital. And this is my life, every freakin day of it. I’m just tired of the grind.
As my symptoms started to creep back in, I was trying to figure out how to express my frustrations and thoughts about wanting to escape CF. I was in my car driving, and this song came on, Fly Away by Lenny Kravitz. It’s a song about escaping the difficulties of the day, even for a while, and getting away with the people you love. While that is not steeped in reality for most, who cannot just charter a flight to a great getaway on a whim, it is more the thought that works for me. Trying to escape my CF, even for a little while in my mind, to help make the bad or frustrating days a little easier. I learned early on in life that even 10 minutes of meditation, sitting alone and focusing on nothing but breathing can make a big difference. Ironic, it seems, as breathing is the cause of most of my difficulties! Even though it is difficult to do, I feel a little more balanced when I’m able to. So….I’m listening to this song as I’m feeling really frustrated about my cough and symptoms. Not only is the song a great message, but Lenny in general is a great person of positivity with a great story to tell.
Let’s face it: Lenny Kravitz is really cool. He so cool, he’s a bad mutha……..Shut yo mouth! (Couldn’t help a shaft reference there). Kravitz grew up in New York to a white Jewish TV producer and African American actress mother, Roxie Roker (She was on the Jeffersons). Growing up in this world, he was exposed to more culture than most people his age. Immediately he was drawn to music, influenced heavily by funk, jazz, blues, etc. He started in the mid 80s with his debut Let Love Rule, but didn’t make a huge commercial mark until Are You Gonna Go My Way. He had long dreads and sung about love and peace. It didn’t hurt he married Lisa Bonet, who was super popular at the time as a star of The Cosby Show (when it was on top of the world well before everyone knew about Mr. Cosby). He was totally cool; guys wanted to be him and girls (I assume) wanted to be with him. By the time he came out with his 5th album, on which Fly Away was a track, his stardom had continued to rise. Yet he continued to be philanthropic, and to spread his message of peace and love, which he continues today.
Back to the story at hand. I think about trying to get away from things. Not that my life is bad, by any means. I feel extremely lucky and fortunate, having found the love of my life, Mari. We have built a great life for us and our son in Chicago and now in Denver, and I have made it to 40 years old. I have a wonderful extended family and great, supportive friends. I am a medical professional and a CF advocate. Most days I am happy to take all that on; but on other days I don’t want to be that person. I don’t want CF to rule my life, I don’t want to take care of others; I just want to go away with my family somewhere far away. To where I’m healthy and can run around and play without coughing fits. To where I don’t have to worry about getting a minor illness that could catapult me into the hospital before I know it. To where I can just be, living a regular existence without the constant roller coaster that is CF.
But I know that’s not reality, so I have to get it in small doses. Whether that’s not being involved in CF and advocacy for a few days to a week, or not being in constant communication to everyone about the status of my health, or even just taking a day where I don’t do anything! (Although even those days I have to do my treatments, so I can’t even escape then!! UGH!). Sometimes, we all need a break. To get away, or fly away in this case. Hopefully, the people around you will see and allow for this. Because CF or chronic illness or just life is hard, and we all need a break sometimes.
I promise not to take too many breaks from this blog, but if I do you will know why 🙂