Fly Away

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 🙂

Wiser Time

This is a beautiful ballad by one of my all time favorite bands, The Black Crowes. They burst on to the scene in 1989 at a time when there weren’t many mainstream rock bands. Their first hit was a remake of Otis Redding’s Hard to Handle. They were brash and in your face, fronted by the brothers Robinson (Chris on lead vocals and Rich on backup vocals and guitar). The Robinsons grew up in Georgia, influenced heavily by The Allman Brothers, Derek and the Dominoes, Lynyrd Skynyrd, and others. Chris had such a raw power to his voice, you swore he was older and bigger than he was. To look at him then, he was a beanpole that looked like a strong wind could blow him over. Nevertheless, he could belt out anything he wished, from soul, to a great ballad, to a great rock tune. The band as well embraced their newfound fame, bringing back the excess and debauchery that dominated the 70’s rock bands. Their best album in my mind was their sophomore effort, The Southern Harmony and Musical Companion. This album kicks some serious ass from start to finish, with highlights such as Remedy and My Morning Song just to name a few. During the recording of their third album, Amorica, (which Wiser Time was one of the results), their drug excess led them to a bit of a spiral. The brothers were always fighting and the band broke up a few times. However, they still managed to crank out some great songs.

Wiser Time is my favorite track on Amorica. It has a Southern rock feel, with slide guitar and dual percussion accenting the great harmonies of the brothers, reminiscent of The Allman Brothers. Chris and Rich wrote this song about traveling on the road and all the adventures and personal growth that come along with it. As the title seems to imply, one gets wiser and older when you step out of your comfort zone and push forward into the unknown.

No time left now for shame, horizon behind me, no more pain
Windswept stars blink and smile, another song, another mile
You read the line every time, ask me about crime in my mind
Ask me why another road song, funny but I bet you never left home

As I read these lyrics again, I think about how I came into my own. I had just finished college, where one obviously becomes more of an adult and needs to care for themselves. For the first time, I had been in charge of my health and daily care of CF. There were ups and downs, admittedly I had times where my daily routines were ignored. That may have been in part due to my parents. They were always there, within a few hours; the safety net there in place. Whether I was at San Diego State or Iowa, my parents at that time still helped me with insurance and the like, carrying the majority of the heavy weight that is CF on my behalf. While that was comforting, I knew I needed to grow and figure it out completely on my own.

So, after college, I decided to take a road trip. I packed my Corolla and traveled for approx 2 months and over 6,000 miles, driving solo through the western part of the country while I looked for my next place to land. I would stay in hotels or camp, having my medical supplies at my side. While on the road, I had countless hours to myself to think and reflect, on everything from life and death, my family and friends, and my CF. It was in Boulder, CO that I saw possibility for a different and healthier lifestyle. I hiked in the mountains and did some rock climbing, enamored by the environment and atmosphere. I already had a few buddies that had settled there, and decided then to join them permanently.

While there would be many subsequent bumps in the road, that experience was invaluable. Living completely independent of my family was absolutely needed for my evolution at the time. Obtaining my own insurance (and having to deal with all the intricacies therein), and figuring out how to support myself through the good days and bad. Managing my increasing daily and long term medications, I supported myself physically and financially all while handling hospitalizations and exacerbations alone. While not easy, I felt I had to accomplish this myself. I think back to Wiser Time:

On a good day, it’s not every day,
We can part the sea
And on a bad day, it’s not every day,
Glory beyond our reach

I take from these lyrics that the bad days are not as bad as they may seem, while the good days and the accomplishments achieved will propel you forward to new heights.

I think about that experience and time in my life, as I walk these halls of the hospital filled with fellow CF patients. I feel very fortunate of my path, forcing myself to grow into a more independent person battling a disease that can be very hard to manage. Many cystics may not feel comfortable going out on their own, but I think it was crucial to my overall development. And I encourage all people with CF or other chronic illness to try.

Remember, it is better to try and fail then never to have tried at all. If you fail, or if things become too difficult, the people closest to you will be there to pick you up. But you will become stronger and better for persevering. And you will be wiser for the road travelled.

Bouncin’ Round the Room

So, here I am, back in the hospital, yet again. I prepared for this one, taking time off work. It’s more of a tune-up or an “oil change” so to speak. I’ve had to accept that I need more frequent hospitalizations to maintain any kind of lung function and normal everyday life. As I sit here looking at these strangely familiar walls of my room, I often think of this song.

It’s a Phish song, written by Tom Marshall, who writes a majority of their lyrics. The origin of the song is about his experience in a bouncy house where he was inadvertently knocked unconscious. Sounds a little dark I know. However, the music is written in a major key, highlighted by a great drumbeat as always from Joh Fishman. When they play this song in concert, the mood is light and the crowd is always into it. The song features all four members singing different lyrics and melodies in a call and response theme. (If you’re not familiar with this, just think of row, row, row your boat, gently down the stream…). It’s a crowd favorite, since everyone can pick their favorite part to sing. The call and response continues to repeat, building up to a crescendo. The energy in the crowd is palpable.

I remember when I first was exposed to Phish. I had heard my friends talking about them, probably Sophomore year of high school, 1994 or so. They were raving about their unique sound, mostly gushing about how great they were live. Mostly, they raved about Trey Anastasio and his guitar solos, and how he was as good as Jerry Garcia (Trey is amazing and all, but I don’t know about that). So I went out and bought an album, A Live One, because I thought that would be the best way for me to hear and evaluate them for what they have always been, a jam band that is best heard live. The first track on that album just happened to be Bouncin’ Round the Room. I liked this song a lot, as well as a few others. Soon I was hooked, and would wind up seeing them more than a couple dozen times in concert over the next several years.

Now, back to the present. As I sit in this hospital bed, yet again, I have a feeling of deja vu. I have been here in these rooms, that all look and feel the same, more times than I care to count. This is the life of a cystic, the constant exacerbations and hospitalizations. This stems primarily from the consistent buildup of bacterial lung infections that will never cease. Just in the past 12 months, I have probably spent 2 of them in here, constantly hooked up to IVs, doing nebulizers, and having the sputum literally beaten out of me. It can be exhausting and demoralizing at times. You sit here and try to keep busy, just trying to keep your mind occupied. It can be really hard to sleep, even though that’s what you need the most. Sometimes, you are just goofy and slap happy. That’s when I hear the lyrics to this song:

Then before and now once more, I’m bouncing round the room
That time then and once again, I’m bouncing round the room
That time then and once again, I’m bouncing round the room
That time then and once again, I’m bouncing round the room

I hear it like it’s being looped over and over again. While I always had enjoyed the song in concert, I don’t always love it while here in the hospital, because of how I feel in those moments. While it can be easy to get into that negative headspace due to the environment and circumstances, it can often be much harder to get out. So I try to transition from hearing those lyrics to thinking about many of the great moments I can remember from those Phish concerts. Some of them are a little more cloudy than others, but still I can remember being part of the energy and community which kept people coming back to their shows over and over again. That time then and once again, I was there in the crowd. And can revisit those times whenever I need a boost of positivity. These are some of the tricks I use to help me through yet another hospitalization. If any other cystics are reading this, I hope you find your own way to remain positive and keep out of the negative headspace that often comes from being in here. Keep calm and carry on!

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