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!

Dreams

This is a beautiful song by the Allman Brothers. Written by Gregg Allman, it was the first song he had prepared when he joined his brother’s band. At the time, he was out in California trying to make it as a solo artist, after literally shooting himself in the foot to avoid the draft. When Gregg joined the band, everything clicked. They spent night after night refining their sound, usually with the help of mushrooms. They adopted the mushroom into their logo and all had corresponding tattoos. Of course, that was the late 60s, during the free love movement and war protests, when psychedelics were at their height. Music at that time was dominated by bands like The Beatles, The Byrds, The Rolling Stones . While there was a blues influence to some bands of the day, the Allman brothers took this genre and put it at the forefront of there music. Along with Gregg’s soulful vocals, his brother Duane was a master of the slide guitar. Duane had made a name for himself by playing with Wilson Pickett and Otis Redding, but they needed to create their own sound. The two complimented each other very well along with Dickey Betts on guitar; then the rhythm section of dual drums and bass provided the thriving backbone. They were just making a real name for themselves, after the Fillmore East recordings became a thing of legend. Tragically, Duane died of a motorcycle crash shortly afterwards, and their bassist died the same way a year later. Through all this, The Allman Brothers powered on and made music as a band until Gregg’s death last year. As a band they made an undeniable mark on music and influenced countless people, including me.

At the time I discovered them, I was coming out of a heavy metal phase and looking to find myself a little better. While I embraced the emotion of heavy metal, I didn’t always feel like I connected as well as I should. My father and I had been talking about music and some of his influences growing up. He had mentioned them, although they weren’t one of his favorites. I think I was excited that they had two drummers and wanted to see what that sounded like. So we went out to the store, and I picked up a few CDs. I got Live at the Fillmore East and was immediately enthralled. Gregg’s voice boomed through the speakers, full of hurt and despair, with the guitars accenting different phrases along the way. They built their songs to crescendos, the emotions just pouring out so much it was impossible not to feel. Dreams is a slow emotional journey, a simple chord structure played on Gregg’s organ with blistering slide guitars on top. The lyrics talk about getting away to solve your problems with a little solitude, fearful that your problems may overcome you and prevent you from reaching new heights in life. As the chorus goes:

‘Cause I’ve a hunger for the dreams I’ll never see, yeah, baby.
Ah, help me baby, or, or this will surely be the end of me, yeah.

I really connected with this; how all of your pain and anguish can be expressed into music but without rage. At the time, I was having trouble coming to terms with CF. I wasn’t sure who to talk to about anything, since almost no one I knew had any inkling of what I dealt with. Being a teenager was hard enough, without the added strain of a chronic illness. I was angry and confused, insecure about all the daily intricacies that come with the territory. It caused me to be more of an introvert, which I still am today. I have a hard time expressing my emotions, doubts, or fears. Sometimes I need solitude in order to come to terms with these feelings and cope. It’s as true today as it was back then.

It’s easy to let CF overpower you; it can be overwhelming. Figuring out how to deal with this illness while trying to figure out who you are as a person is a real challenge. Everyone needs a creative outlet of some kind, whether it’s art, theater, music, or something else. Music was always that for me, and the blues created a whole new path to coping with my illness. To this day, I will blast the blues in my car when I’m having a bad day. I will sing along to my favorites, like Buddy Guy, Freddie King, Eric Clapton, and Stevie Ray Vaughn. I connect with them on a visceral level, even though our experiences are totally different. The emotions feel the same, and relate to my life and struggles. This musical companion of sorts is with me whenever I need, like a comfortable blanket. And I have the Allman Brothers and my father to thank for that.

Smells Like Teen Spirit

My life has swung full circle. I am now a father, having recently crossed over into an old age (40). My son just just turned 13 and is a full blown teenager. As I look at him now, many things that come to mind. First, I am amazed at how fast he grows; both Mari and I realized a while ago we would soon be looking up at him! Next, I think about how much of us I see in him. Even though I am not his biological father, I see so many traits that remind me of myself. No matter how different he is from me in some aspects, in others I can see my influence. That can blow your mind sometimes, how you can raise a human being and always see parts of yourself in them. He is entering an age where he will hopefully find his true self.

Think about the mindset of a tween/early teenager. One is easily influenced at that time by both your peers and pop culture, still unsure of the person they are to become. It’s like a fresh ball of clay that has started to form but hasn’t taken a real shape. Hormones infiltrate and take over the brain, causing times where there seems to be little or no function. I look at Jackson at those times and wonder what (if anything) is going on in that head? There seems to be very little, mostly because he is tuning us out and thinking that he already knows what we are trying to tell him. However, at other times he can be very sensitive and focused. The wild swings between the two are mind-boggling! There are many more life benchmarks ahead, and Mari and I are both bracing for and trying to figure out how to best manage them as we go.

I recall when I was his age, during the early nineties. Pop culture was dominated by the likes of Milli Vanilli, Boys II Men, and R&B groups of the like, along with shows like Saved by the Bell and Full House. I wasn’t huge on this genre, but was also easily influenced and tried to get on board. I had my Z Cavaricci pants and short sleeve button downs. I rocked a mullet, which should never come back into style. I tried some of the dance moves like the running man and danced to NKOTB. Yeah, I was trying to be that kid.

But I knew that wasn’t who I really was. Then, suddenly and miraculously, Nirvana bust onto the scene in 1991 and instantly turned the music industry on its head. The music was raw, with plenty of angst and anger, highlighted by heavily distorted guitar and pulse-pounding drumbeats. Kurt Cobain screamed more than sang, voice cracking with emotion as he belted his dark and moody lyrics. It was a stark contrast from everything else at the time. Smells Like Teen Spirit hit the charts and spawned a new music genre, grunge. After the release, many other Seattle-based bands came to the forefront in their wake, like Pearl Jam, Soundgarden, Alice In Chains, and Stone Temple Pilots. That grunge sound really struck a chord with me. The songwriting was more melancholy and real, unlike the boy bands and bubblegum pop that was on the radio.

I was going through a lot at that time, both with my health and my family. My parents were unhappy, seemingly always fighting. They would split up shortly afterwards, which meant we weren’t moving to San Diego to all live together (another story for another day). At the same time I was trying to come to grips with my CF and its progression and its result of regular hospitalizations or tune-ups. While I was hospitalized many times earlier in life, they were primarily related to GI issues and not respiratory in nature. But I was starting to colonize strands of bacteria in my lungs, causing infections to consistently build up in my lungs. I tried to downplay it in my mind, but it affected me. I had to miss large chunks of school, and I was no longer able to successfully hide my CF from other.

Being a tween and early teenager is inherently about your insecurities and attempting to overcome them. This was nearly impossible for me, as I was reminded many times a day in class. Most days I would have productive coughs that made me sounds like I was a chain smoker. It would get the usual looks of disbelief or dread from my classmates, like I was going to infect everyone around me. I would attempt to hide this, either by excusing myself to the bathroom multiple times a day (which probably caused its own suspicions), or trying to “swallow” my coughs (not effective, just swallowing air and causing GI issues). I would also try to “breathe” through it, which took most of my concentration and probably affected my attention in class and probably sounded like a Lamaze class! Anyway I tried, it was nearly impossible to hide. As these issues were more apparent, I shied away from a lot of interactions, especially with girls. I was unable to let anyone get close to me for some time, affecting my growth into a young man I’m sure.

Now I know what you may be thinking. Everyone has issues at that age! And to any given teenager, at the time, those are the most difficult things they could imagine. That is true, and I realized later on that everyone had their own crosses to bear. But that doesn’t help one during that age, with so many changes in your physical, emotional, and mental self. So I try to think about this when looking at my son. That he is dealing with issues different from what I did, but no less challenging or embarrassing in his mind. And even if some of these issues seem trivial and not important, I need to think about it from his perspective. To go back to what it was like to be his age. To the era of grunge. And listening to Nirvana and Smells Like Teen Spirit helps me get there.

Thank You (Falettinme Be Mice Elf Agin)

I want to talk about some funk! My love of funk is deep, down to my soul. It just makes me happy, makes me bob my head and move to the rhythm, giving me a smile. The lyrics usually aren’t very deep, instead more silly and light-hearted in nature. The core of funk is the bass line and drums, highlighted by funky guitar riffs and complimentary horns. While there are plenty of funk bands these days, I mostly prefer the old school. I think of my “Mount Rushmore” of funk bands: James Brown and the JBs, George Clinton and Parliament Funkadelic, The Meters, and Sly and the Family Stone. Sly is who I want to focus on today. He was most prominent in the late 60s through the 70s, formed in San Francisco during the golden age of free love and hippies. Sly and the Family Stone brought funk to the masses there, bringing together people from different backgrounds. Their songs were soulful and happy, with great harmonies and horns on top of a funky rhythm. They cranked out plenty of hits, like Dance to the Music, Stand, Everyday People, Everybody is a Star, Family Affair, and the song I want to talk about today, Thank You (Falettinme Be Mice Elf Agin).

Now I know what you’re thinking: What the hell is Fallettinme Be Mice Elf Agin? Well, the song sounds more like ” Thank you, for letting me be myself, again!” With it’s driving baseline by Larry Graham, a funk pioneer in his own right who started the slap bass technique, the song instantly pulls you in. The accompanying guitar riff and horns all blend well together. That’s the secret to a great funk song; several small and non-complex melodies and rhythms melding together to create something great. Just like cooking, the end result is greater than the sum of its parts.

Thank You has great message, one that embraces individualism and differences between us all. What a crazy thought! In this world today that is filled with divisiveness and hate speech, we could all use some positivity. Messages of acceptance and unity, coming together as one rather than judgment and stereotypes that lead to a racist, sexist, and anti-Semitic country. Now, I don’t want politics to enter this blog, so I’ll just say this: no matter what affiliation you may have reading this, you have to admit that the current climate is not helpful. And both sides have to accept blame and come up with creative solutions for a better America. There!……off my soapbox!

When I’m funking out to this song, I think about the wonderful support system of family and friend that have helped me deal with CF throughout my life. Living with a constant sense of mortality and daily limitations can be daunting and depressing if you don’t have the right people near you. From my parents and family growing up, to the lifelong friends I made in high school, to my amazing wife and son today. Everyone has helped in ways they cannot imagine. Without them, I would have been lost many times over, and could have allowed CF to overwhelm me. With them, they allow me to live a more positive life, all while dealing with the constant curveballs that this illness presents. Through these positive influences, I can be me. And I Thank You (Falletinme Be Mice Elf Agin).

Happy Thanksgiving everyone!

Ripple

I chose this as the first, but not the last, Grateful Dead song to write about. It’s the gem of my all time favorite Dead album, American Beauty. This album was a change of pace from their previous efforts, going away from the psychedelic sound to a more acoustic and folk-centered theme. It is said that they were heavily influenced at the time by the Band’s Music From Big Pink, and wanted to create their own kind of American folk music. They accomplished just that, with American Beauty, filled with great harmonies and strong songwriting complimented by Jerry Garcia’s acoustic and steel pedal guitars. They even added in some mandolin, played by David Grisman, who would go on to be in a short-lived bluegrass band with Jerry called Old and in the Way. This album has always been a go-to of mine, one I have never tired of.

Ripple is the first track from the B side, for those of you who remember vinyl. The simple acoustic strum and baseline compliment each other well, with accompanying mandolin sprinkled in. Jerry’s vocals are a perfect fit for this sound, both simple in soothing. Although never a great singer, Jerry flourished on songs like these. He portrays Robert Hunter’s lyrics perfectly (they frequently wrote songs together), singing about walking life’s path.

There is a road, no simple highway 
Between the dawn and the dark of night 
And if you go no one may follow 
That path is for your steps alone

I think of these lyrics and how they relate to my life. Everyone has their difficulties and challenges through their lives, and I’m no different. A good portion of my challenges come from my daily battle with CF and chronic illness. There are plenty of obstacles constantly being thrown into your path, causing detours or delays towards your goals. “No simple highway” he sings, referring to the winding path of life that is anything but a straight line. And while CF can cause many detours and frustrations, one must still keep their goals in sight. It’s easy to lay down and forget these goals exist, or succumb to the illness; it can be exhausting to try to live a normal life with all of CF’s challenges. But if you can overcome, and still reach some or all of your goals, the success will feel that much sweeter because of the hard road you took to get there.

I feel like I have achieved a lot of my goals, both in career and in life. I am now married, a successful P.A., with a teenage stepson and a great life in Denver. However, it was difficult to get to this place, a lot of struggles and roadblocks along the way. And while I had a great support system growing up, I had to forge my own path in early adulthood and figure out how to balance life and CF alone. A big part of that was moving away from my family, forcing me to manage the illness and life on my own. There are a lot of intricate details that must be dealt with: medical bills, insurance woes, treatments and exacerbations, not to mention the daily hardships of symptoms. Through all that, I still worked and went to school for years, in the hope I would achieve the success I now have. And while that was extremely grueling and difficult, I felt that was the best way for me to evolve into a better person and a real adult. As the song goes “If you go no one may follow, that path is for your steps alone.”

I want to talk to the other people with CF who may be reading this blog: follow your dreams and achieve your goals. While there are constant day-to-day challenges with this illness, CF doesn’t have to define you and force your path. You can break through, however difficult it may be, to stay on your own road to success. And success can be defined in many ways; not just by big life items but also by the small stuff! So whether it is overcoming setbacks to finish school, finding a job or career you wanted, moving away to find yourself, or something else entirely. The important thing is to keep moving forward in life, not letting the incredible weight of this disease drag you down into the abyss and impede your personal progress. At least that’s what I think about it. And this song always helps me keep it in perspective. Preach on, Jerry!

Comfortably Numb

I. Love. Pink Floyd. I mean….who doesn’t? Their music has been transcendent through multiple generations. The mix of great lyrics accompanied by great instrumental work, augmented by what was at the time state of the art synthesizers and effects, could elevate you to a higher plain. It was, and is still, truly artistic.

I first discovered Pink Floyd in high school, and was hooked right away. I would listen to many of their albums in their entireties late at night or while going to sleep. Dark Side of the Moon, The Wall, Animals, Wish you Were Here, Meddle, and many more. Their albums were not really just a compilations of songs but rather an opus that flowed from beginning to end, each song falling into the next like it was meant to be. Their masterpiece, Dark Side of the Moon, is a great example. It was perfect, front to back. So much so that you could never imagine the songs in any other order. After Dark Side, The Wall was probably the pinnacle of their success. It became a movie and a concert experience, almost like a rock opera.

I want to talk about one song in particular off The Wall, Comfortably Numb. It is one of my favorites, and always puts me in the right mood no matter where I may hear it. Now, everyone thinks this song is about drug use. But it’s really about Roger Waters’ experience with anesthesia while he was sick on tour. While under heavy sedation, he related the feeling to a childhood ilness. Take a closer look at the lyrics below:

Hello,
Is there anybody in there?
Just nod if you can hear me
Is there anyone home?

Come on, now
I hear you’re feeling down
I can ease your pain
Get you on your feet again

Relax, I’ll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain you are receding
A distant ship’s smoke on the horizon
You are only coming through in waves
Your lips move, but I can’t hear what you’re saying

When I was a child I had a fever
My hands felt just like two balloons
Now I’ve got that feeling once again, I can’t explain
You would not understand, this is not how I am

I… Have become comfortably numb

There is a reason I am talking about this song. That’s because, as I write this, late at night, I am getting ready to fast for anesthesia tomorrow. In the morning, Mari and I will go to the hospital so I can have a port placed. For those of you who don’t know, a port is a semi-permanent catheter running to the tip of the heart. It has a hub underneath the skin on the R side of the chest. It will be extremely sore for a while, and I will have a constant reminder of it every time I look in the mirror.

Now this is a break from the normal routine, when I have had a PICC line placed in either arm. Even though that also goes to the tip of the heart, it can be removed after the antibiotics are finished. So when it is done I can forget, if only for a while, that I am constantly sick. Since I have had so many, however, my arms have a lot of scar tissue and my veins are thickened and narrowed. These factors make it more and more difficult to put in place. During my last hospitalization, they had so much trouble they needed to dilate my veins with a balloon to thread the catheter through. It was extremely painful, and I was awake the entire time. I listened to the doctor getting audibly frustrated, running out of options and calling in assistance from a colleague. All the while I was strapped to the table unable to move, trying not to freak out!

So subsequently I was told that a port was needed. And truthfully, I probably should have had one long ago. When the yearly exacerbations became more every like 6 months or even less, it was time. But I resisted, because the idea of a port signified a benchmark of progression that I was unwilling to accept. I guess I have to let that go; these things are out of my control. So I am sitting here writing, and trying not to let my anxiety get the best of me. I think back to the song.

O. K., just a little pin prick
There’ll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it’s working, good

Hopefully tomorrow all will go well, with no complications. Hopefully, this will be the last procedure I need for a while. Hopefully, the port will be an improvement for future exacerbations. Hopefully, during the procedure, I will become………..

Comfortably numb.

Many Rivers to Cross

This song is one of my all-time favorites, written and sung by Jimmy Cliff. Now, for those of you who know me well, you know that reggae is my jam. I can listen to it any day of the week and twice on Sunday. This song is from the soundtrack The Harder They Come, which is also an obscure movie from the 70s starring….you guessed it, Jimmy Cliff. Check this album out, it is outstanding. This particular song, Many Rivers to Cross has emotion and is filled with sadness and regret. His character is one of solitude who winds up alone and resorting to petty crimes to make ends meet. Jimmy’s voice is complimented tremendously by background singers who build the song to a great crescendo at the last chorus. These particular lyrics stand out to me:

Many rivers to cross
But I can’t seem to find my way over
Wandering I am lost
As I travel along the white cliffs of Dover
Many rivers to cross
And it’s only my will that keeps me alive
I’ve been licked, washed up for years
And I merely survive because of my pride
Now I know this sounds a little depressing and sad, as he is a low point and struggling to carry on. And this is true for myself as well. Early on in my young adult and adult life, I felt like I was wandering alone. Now I know what you’ll say: Chad, are you muthufuckin’ crazy? You had a tremendous family and a lot of friends who had your back! And while that was certainly true, and I am grateful for all the people in my life, I was still alone. Because no matter how well someone knew me, they didn’t know the illness. They can’t understand the day-to-day pain and struggle that this illness can cause. They weren’t able to realize the emotional uncertainty that comes with not knowing when the axe will fall, or if/when the illness would take hold. When the final moments would arrive.
I was always good at putting on a front and hiding the ugliness of daily life with CF. But there were many times when I would lay there struggling to breathe and wishing it would all be over. Or that I might have just a few days when I didn’t have this struggle or constant pain that followed me everywhere? Or not knowing when the progression would be too great to overcome, or an exacerbation would be too severe to fight off? There were many times I just wanted to give up and let CF have its way with me. But something kept me going; whether it was stubbornness, pride, the will to survive, or the guilt of letting my family (mostly my mother) down. I just can’t be sure. But there were dark times. And those demons still lurk their ugly head around sometimes.
OK, I know that’s pretty dark. And my family may not want to hear this stuff. Well, I need to get this stuff out. So if you can’t handle the raw and the bleak that comes with this then you probably shouldn’t be reading this blog! This needs to be a place where I express my emotions without judgement, both happy and sad, positive and negative. So DEAL WITH IT!
So when I hear this song, and I recommend you listen to it, I am mixed with emotions. I feel the wave of sadness that this song represents to me. Sometimes I well up, and I have to let it out rather than choke it down. Because I am in a different place now. I found myself, made my way through P.A. school, and have a great career. I met the most wonderful woman, and had an instant family with our son, Jackson. My life is full, and the future is bright.
But that doesn’t mean I don’t have my moments. If this illness teaches us anything is that nothing stays the same. You have to keep evolving and adjusting, and sometimes the badness may overcome. And that’s ok, to feel anger and sadness and just need to RAGE!! And afterward, you feel better and relieved. But just holding it inside is no good. It’ll keep building up to a volcano that explodes! And you might wind up doing or saying something you regret or can’t take back. So channel your frustration or anger or sadness into something creative. Paint, play an instrument…..or write a blog! But do something to deal with the hurt and sadness. Otherwise it’ll eat you up and spit you out.
Oh, and listen to reggae. If nothing else, it will usually brighten your spirits. 🙂

With a Little Help From My Friends

This is a great song, both in melody and lyrics. OK, granted, there are two versions. The original version, by the Beatles and sung by Ringo on Sgt. Peppers, is great. You gotta love Ringo, he’s just a kind man who seems to project peace and love for all. And Lennon/McCartney wrote a great song as these always did. But I’m not talking about that version. I’m of the belief that when Joe Cocker covered this tune and played it at Woodstock, it became his own. The arrangement is much different and highlights the raw emotion of his voice. He truly gives everything he has to this song, which is both remarkable and admirable. To see someone literally writhing to and fro with his stanzas is a sight to behold. It is one of the things I love about music, the way it both captures your emotions and allows for their release at the same time. And in that moment, you can feel the artist’s joy and pain, happiness and sadness, all at once.

When I hear Joe Cocker belting “With a little help from my friends,” I think about a particular time in my life. I remember vividly sitting around as a family and watching The Wonder Years, to which this was the theme song. I was probably 10 or so, and we had just moved to Chicago. Moving across the country meant trying to put down roots in all aspects of life. Home life, the neighborhood, school, temple, and of course, the new CF clinic. We had quite the transition when we started going to Children’s Memorial in Chicago. Their philosophies and treatments seemed both different and foreign. Whereas before, I was told to stick to a low fat and high calorie diet, which is really hard by the way, the new clinic wanted me to get as many calories as possible by any means necessary. They recognized that the better our BMI, the more likely we were to be able to ward off infections and exacerbation. There were new meds, new nebulizers, new ideas on how to battle this day to day. And my parents and I had to meet and become co-pilots of this world with a whole new CF team.

And along with that new team, of course, was a new hospital with new inpatient experiences. In New Jersey I only knew a couple of people that I knew with CF. None of them were my age, so we weren’t close. When I was admitted, I might be roomed with adults who have other illness. But at this new hospital Children’s, they made an effort to make children with CF feel as normal as possible. There was an entire floor that was mainly dedicated to CF children, and the nurses made sure that all the kids knew each other. Hell, they threw us in the playroom daily all together so that we would feel like a group. We would stay up late and talk about our lives, play games and sneak around the hospital. We got in trouble quite a few times. I remember one time this girl Jennifer Cherry and I broke into the morgue to check it out. I have know idea why; it was a bad idea and weirded me out to no end, but we did it anyway. There’s so much idle time while you are staying in the hospital that we would do anything to keep busy. But we would do it all as a group of friends.

The CF team even had an overnight camp every year! This was freaking amazing. I had never been to overnight camp because no camp could handle my needs, and as a result my brother never was able to go either. But we both went for a few years in a row, to a camp filled with CF kids and their siblings. Plenty of activities and bad food, late nights and shenanigans. I remember feeling not like an outcast, but just one of the crew. We all had T-shirts with our nicknames on them. There was group treatments morning and night, where all the cystics would do nebulizers and the camp counselors would perform postural drainage. All in the same room! The entire experience was a revelation, and something I always remembered. I kept some of these friends through life, and although sadly most of them have now passed they are still with me. Because I don’t feel alone with this illness.

Now, things are different. With more resistant bacteria, the camps were not allowed to stay open. CF patients were isolated to prevent spreading infection. Most of you may know what it looks like when I’m in the hospital nowadays. Every nurse, tech, RT, MD, or otherwise has to mask/gown/glove-up before entering my room, and any time I want to leave the room I must wear a mask. Patients aren’t encouraged to interact and if they do, must stand at least 6 feet away from each other. But it is frowned upon now, and the only social interaction is online and virtual. And while that is important, and I’ve met many people over the years, it’s not quite the same. Relationships can be fostered through social media but if that is the basis I don’t believe they are as meaningful. There is still something to be said for actual interaction and discussion, the occasional hug. Now I am all for taking precautions and making sure to limit spreading of deadly infections but I still break the rules. I like to see and hang out with a few of my CF friends, most of which I have made in the past several years. And I think that has to be something we do, even if it is considered taboo. People can still hang out, wearing masks and using hand sanitizer. Having friends who go through something you so, because it is so unique and relentless. Because it’s hard to stay positive and upbeat when something perpetually pushes you down. And relying on those closest to you, and those who have gone through it themselves, is critical.

As the song goes “Are you sad because you are on your own? No, I get by with a little help from my friends.” 🙂

Against The Wind

Bob Seger’s voice always gets me, resonating with soul and purpose. And I love this song. Even though it’s not about health struggles, I hear that song and it makes me think about the day to day struggle with CF. Since it is a progressive and chronic disease, things only seem to get tougher and tougher and the hardships more apparent as time goes by.

The main struggle for me is lung function. Two of the main components or benchmarks that CF teams go by is the FVC (Forced Vital Capacity) and the FEV1 (Forced Expiratory Volume in 1st second). Every time you go to clinic this is the first thing they do. And it can determine whether you get a relative clean bill of health for that day, or they decide to throw you in the hospital. It can be jarring too, because sometimes you feel pretty good and your numbers tell a different story. It can be pretty deflating. Now a normal person would have a FEV1 of 100%; most people don’t have obstructive pulmonary disease! So they might not know what we cystics go through. Imagine this: put a big spoonful of peanut butter in your mouth, attempt to take a deep breath, and blow out through a straw. Tough huh? Yeah it is, and it seems as time goes by my straw gets narrower and narrower.

I used to have a FEV1 of 50-60%, when I was a little younger and more of a spring chicken. Now on a good day I’m about 40%, and the bad days the percentage is markedly worse. No matter what I do, it seems I can’t fight the current and the progression. I have more difficulty with exercise and exertion, both in length of time and intensity. It feels like…….running against the wind. And not just a light breeze here. We’re talking 40 mph winds. Every step forward feels like you’re taking 2 steps back. It can be pretty deflating, and make you want to give up. But as Tom Petty says” You can stand me up at the gates of hell, but I won’t back down!” Sometimes that is easier said than done, but I try to keep that in mind when I don’t want to do my treatments or exercise. Even as my exercise routines are not as impressive anymore; I am pleased with a brisk walk these days!

But I can’t stand still, because that will only make the wind stronger, the quicksand deeper, the current more forceful. We all have our struggles that can make us feel like we are fighting against everything, against successes both big and small. These are some of mine. Like running against the wind.

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