Sunday, July 22, 2012

A few MINOR thoughts, before a MAJOR week.

In light of the events this week, and some others that I have been a part of recently, I've had a lot of thoughts rolling around in the ol' grey matter lately so I figured I might as well update this whole blog thing.  Besides, I promised I would try to do it more often whether it is being read or not.  Hey, baby steps right?  This one will be pretty long again, so i suggest if you want to read it all, get yourself a beverage, a comfy seat, and put on your thinking caps and follow along with me into the realm of Mr. CF Rider.  WARNING: there will be a lot of randomness and rabbit chasing going on here, but I will try to wrap it all up at the end in some nice special package that might make a little sense.

So a couple of weeks ago, Mrs CF Rider and little CF Rider were over in Georgia visiting GiGi CF Rider (that would be grandmother for those who don't know) and I was left all alone at the homestead.  Deciding it might be a good time to go up and visit with a great friend in TN, I sent him a text to see if he was going to be in town so I could come up and talk some CF Rider business.  Well, turns out he wasn't going to be at home, but would be over just outside of Nashville for a little Singer/Songwriter event that is being put on to raise money for what is called the Darryl Worley Foundation.  My friend invited me up to come and hang out and to catch the show and just to have a little bit of fun.  I immediately said sure thing count me in and I started the plan to get up to Murfreesboro.  Well the night before I started up with a cough and felt like it could be something coming on as Mrs. and Little were both having some kind of battles with allergies or sinuses or colds or something.  I went to bed thinking that riding to TN for one night and turning around and heading back the next morning probably wasn't the best thing for me, especially given the weather forecast, scattered and numerous thunderstorms all over.  I had all but made up my mind to back out of going, you know playing the safe and secure card and letting CF get in the way of me having a good time.  Funny, I woke up the next morning feeling great and with a new attitude.  Maybe my subconscious gave me a pep-talk in the middle of the night and reminded me that I have LIFE now and don't have to choose to sit around and feel sorry for myself and give in to the fact of having CF.  Maybe it was something else speaking to me entirely, but I was determined to hit the road and enjoy every minute of it.

I  packed up my road bag, strapped it on the bike o' life, and commenced to putting my knees in the breeze.  I had planned it out to stop at a couple of other Harley shops on the way to rest a bit because I knew it would be pretty hot on the road.  The sun was shining, the tunes were playing, and the bike was roaring.  Don't get much better than that.  I stopped at Rocket H-D in Huntsville first which was almost 100 miles.  Browsed around a bit, got a drink, and as I was leaving started chatting with a couple of the ladies in motorclothes.  I told them about CF Riders and what we are all about.  One of the ladies was an RN so she knew all about CF and really couldn't believe that I was 39 with CF and out and about on a Harley.  We chatted a bit more and then I hit the road again.  Not 5 minutes back on the road, mother nature hit on me.  I wish she would have bought me dinner first, but she jumped right on my bones.  Thunder, wind, rain, BAM, everything that makes someone driving a car look at a biker and say, "Man, I'd sure hate to be that guy right now".  I stopped under an overpass and put on the trusty rain gear and kept on down the road.  I passed a few folks who passed me at the overpass and sprayed water on me and thought to myself, "Man, I'd sure hate to be that guy right now".  It rained on and off for the next 50 miles and I had spent more time at my first stop than I planned so at the second stop, I just got out, used the biker boys room, quickly looked over the store and hopped back on the bike.  I made it to Murfreesboro right on time and quickly changed into my evening wear, which means I took off the rain gear and swapped shoes.  This wasn't supposed to be a formal event, thank goodness.

See I told you this was going to be a long post.  I'm not even near close to being halfway done yet.  That reminds me, I saw a thing on Facebooger recently that I really liked.  Some folks see the glass as half full, some see it as half empty, I prefer to see it as having room for more drank.  Speaking of drank, back to our story...

So the evening begins and I hook up with my buddy who proceeds to introduce me to everyone there.  I really felt like a VIP being treated to all the backstage stuff.  I ate with some of the songwriters of tunes that everyone knows, I drank with the Master Distiller at Jack Daniels, and more importantly, got to hang out with a bunch of really cool people who care about doing things for a great cause.  I didn't mention earlier that one of the benefactors of the Darryl Worley Foundation is the CF Foundation itself.  I was more than grateful to be there and was able to personally say thank you to these folks for helping someone like me to live.  We shared stories and laughed a lot.  I was able to talk to a lot of folks about CF Riders.  It was an incredible eveningalready, but it was just getting started.  Well it was time for the show to start and some opening remarks were made.  My buddy, who I owe a butt kickin' for putting me on the spot, made some truly thoughtful and wonderful words about yours truly.  I won't be able to put it as eloquently as he did, but he said something along the lines of the fact that we were all there that night to raise awareness of CF and that a little over a year ago he met a guy who wasn't so much coping with CF on a daily basis, but more like kicking CF's ass on a daily basis and because of the generosity of folks there that night that I was able to do what I am doing.  I'm not sure about the ass kicking part, but I agree with everything else.  Those people were there to help folks like me.  Picture this folks, a Harley shop with all the bikes moved to the warehouse and tables brought in for people to sit at.  A bar, a fully catered spread, and wait staff to get whatever you needed.  I mean this is what should be on CMT or VH1, a true singer/songwriter event.  I was truly in awe....this was for me, and this was for everyone else who fights CF daily.  This was to honor those who have died in battle with CF and for those who will be born with CF tomorrow.  Sometimes words fail to accurately portray emotions that are felt.  This was one of those nights.  You see folks, CF can be a very lonely disease.  Most folks don't understand what we deal with on a daily basis.  We very often hear the words "well you don't look sick" or " wow you look great for having CF".  You know the phrase, you never know a man until you walk a mile in his shoes...well, I think a CFer could have coined that phrase.  CF hurts.  CF hurts physically, emotionally, and spiritually.  It invades every aspect of your life and only a special few can walk with us in battle against this disease and really know what we deal with.  I don't say it near enough, but Mrs. CF Rider is a gift from God above and I know this.  Most folks couldn't handle the weight of CF.  Heck, I'm not even sure I would be strong enough to handle parenting a CFer, knowing what all it entails.  To those of you who have or are in the process of, I tip my hat and acknowledge you as the heroes of our stories.  Thanks to my mom and dad, and my brothers.  To them, I was just a normal kid and allowed to be such.  All this to say to my fellow Cysters and Fibros...we have allies in our fight.  There are others out there raising money and doing great things for US!  We just have to keep up the fight.  Eventually we will win and CF will be talked about in medical history books as a thing of the past.  We are closer than we we were yesterday, but still further away than we will be tomorrow.  To my TN family, I will never be able to thank you enough for such an inspiring night and for allowing me to be a part of your family.  All I can do as repayment is to stay in the saddle and keep fighting the good fight.

Flash forward to the events of this week and other current issues.  The tragedy in Colorado makes us all take pause and realize just how precious life is.  Like many of you, I awoke Friday morning to the news that some idiot had shot up a theater full of people.  Like many of you, I went through the normal emotions that follow something like that, and like many of you I began to pray for the families of the victims.  I had some of the same questions and said some of the same words when I saw this guys face who took the lives of innocent people.  After that, I began to move on and continue with my life.  That sounds cold you say?  To that I say you are the cold one for only thinking about how precious life if when an unspeakable tragedy occurs.  You see one of the blessings of having CF is that we realize how precious life is everyday.  I wake up each day knowing that it is an incredible gift that I don't deserve, but have somehow been given.  I may not always say thank you to the one who gave it to me, but I try to honor Him by trying to make the most of it.  Somedays making the most of it can be just getting out of bed, other days it's riding somewhere to spread awareness of Cystic Fibrosis.  Sometimes, it's working all day and sometimes it's simply giving thanks for the food we eat.  Life happens everywhere in between all that and most normal people only pause to think about the gift of life when something crazy happens.  We're shocked, we want justice, we grieve for the families, then we forget about it and become self absorbed in our own little world again and take up the sword for whatever the current issue of the day is.

That leads me to a post i put on Facebooger the other day.  I said "If we start boycotting businesses because of what they believe in, we're gonna have a bunch of broke companies and an economy in the crapper. Dig deep enough into any company and you're bound to find something you don't like. As for me, I choose to worry about bigger things, like life."  Yes, I am referring to some of the hoopla going on about Chick-Fil-A.  Now, I'm not so vain to think that what I post might actually piss people off, but I did consider that some folks might see this as callous and narrow minded.  To those people who read that at face value and not put thought into it, you're right, it is.  All I can give is my opinion and my outlook on things and I'm simply saying that there are bigger and more important things to worry about than what whoever makes your chicken sandwich thinks about the issue of marriage equality.  The fact of the matter is that whoever is making YOUR chicken sandwich might just agree with you on your view of marriage equality, then again they might not.  Either way, it's a damn good chicken sandwich and little CF Rider loves to eat there and she is happy and it makes her smile when she and daddy go on a "date" there.  That's good enough for me.  At the end of the day if we analyze and pick apart every company that we support with our hard earned money, there is going to be something that we don't like.  If you boycott one, you should boycott all.  Do your research and form your opinion.  If you are bothered by it that much, boycott.  Just don't be selective and jump on the train of the news du jour.  As a buddy of mine put it "I think comfortable people without real, life-altering problems worry about that kinda crap. Some of us actually have to fight everyday to stay alive. The wonderful thing about this country is that folks have a choice. I choose to eat where the food is tasty and support businesses that treat me well."  Well said my friend, well said.  Stop being comfortable and walk a mile in someone else's shoes... for me, tomorrow morning I will wake up to a machine that is made of parts all made in China or Taiwan.  I will turn on the lights in my bathroom provided to me by a company that generates electricity by a source that pollutes our environment (of which I am employed by).  I will wash myself with products purchased at a store that supposedly underpays it's employees so much that half are on welfare.  I will put on clothes and shoes that were produced overseas by workers with inhumane working conditions.  I will drink coffee at an establishment that supports my right to carry a firearm on it's premises.  I will pay bills to credit card companies and banks who cheat people on a regular basis.  I will ride my motorcycle that is a noise pollutant and strap on a helmet that my government forces me to wear.  I will travel on roads that are underfunded by a corrupt city government and go to a hospital who will charge me outrageous amounts of money for providing a service that should be a basic human right.  

But I will do all this, and do it willingly because my life depends on it.  You see tomorrow morning I start a journey that frightens the absolute hell out of me.  I've been scared of a lot of things in my life.  As a kid, scared of complete darkness, as an adult, snakes and spiders, but that fear doesn't compare in the least to what I face starting tomorrow morning.  Tomorrow morning I will start the journey toward double lung transplantation.  For the next 3 days, I will undergo tests ranging from my breathing capacity to my mental capacity.  They will evaluate how strong my heart is and how strong my support from loved ones is.  They will measure  everything to determine if I will be allowed to be given a second chance at life, that is once my current lungs are deemed to risky to continue with.  I will have to be sick enough to warrant a transplant, but well enough to be able to survive it.  As you can imagine there will be a lot going on the next few days and the rest of my life depends on what happens.  I have known for almost all of my adult life that this day would come, and truth be told, I am blessed beyond measure that it has.  Am I worried....yep.  Am I know it.  But like everything else that this life has thrown at me, I will look it all in the face and say "Let's Do It!"  After all, what is my alternative?  I have quite a few examples of people that give me hope and inspiration who have been put in my life recently, one of the redeeming values of Facebooger.  My buddy Kyle who had transplant and is doing great.  My friend Jerry who just ran a 10K race...only 3 months post transplant.  My new Cyster, Emily, who was released from the hospital only 9 days after transplant.  There are numerous stories about everyday heroes that you may not encounter.  If you are lucky enough to have the privilege, count your blessings, for you have just encountered the love of God himself.  He's proven to be pretty good at giving second chances.

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future."  Jeremiah 29:11

Dream Big, Ride Free, Breathe Easy my friends....and practice Life everyday.


  1. Great post and prayers all goes well.

  2. God Bless Brian... Will be putting in extra prayer time for you over these next few days.. Just know you are not alone & have a fan base that spans many states.. You got this!

  3. Mom July 22, 2012 @ 8:33 PM CST

    Well Written and Well Said My Son. I send to you my Love and Prayers for the days you face this week, as well as the Rest of Your Life. "Dream Big, Ride Free, Breathe Easy"! All Will Be Well.

  4. We lost our beautiful 23 yr old daughter to CF 2 years ago and I know what you go through .God Bless You! and i pray everything goes well with your transplant.Thank you for writing this.Becky Arnold.Bruceton Tn

  5. Wow- this all puts a big lump in my throat - a little hard to get the coffee down now. You are certainly in my thoughts and prayers, and most importantly in the Lord's hands. Thank you for sharing this journey with us.

  6. Praying for you this week. You are (and always have been) so brave & have such a good outlook on life. Hoping that this week is the start of a new, wonderful chapter in your life. Much love & prayers. :) Melanie Searles

  7. My husband and I enjoyed the Darryl Worley & Songwriters night at Bumpus HD in Murfreesboro this month but your post truly brings to light exactly what it is all about. May God continue to Bless you and your family.

  8. WOW. What an inspiring article. I hope you are making a journal of your thoughts and activities such as this piece. Ill keep you and your family in my prayers for better than expected test results and a very successful surgery. Keep on doing what you are doing. Peace to you.