Sunday, July 8, 2012

Another go at this blog stuff....the highs and lows.

So here I go again on my own...  HA! Did that just to get the old Whitesnake song in your head.  Now that you have a cheesy 80's hair rock song rolling around in your grey matter, I will get around to typing what I really have to say.  As you can see in the title, I'm going to try again with this blogging stuff, if nothing else just to get my thoughts down on something other than my shoulders.  A note to the punctuation police, I wasn't that good in English class and should have taken to heart what Ms. Moser said to me a long time ago, "You have a lot of potential young man, you just need to apply yourself a little more."  Truer words I never heard as a young 'un.  I'm going to ramble, I'm going to go off on tangents, and I'm probably going to lose some of you in the process, but that's okay because I heard a quote recently, "not all who wander are lost."  Well, I'm still wandering, and wondering, so that means I'm still here.  See what I mean...oh and for those of you who actually read and pay attention to this, let me know if you want more, or less, or none at all.  Comment on here, hit me on Facebook (CF Riders page) or find me on Twitter (@cfrider).

So earlier today I helped pack up my two loves so that they could go over and visit the best mother-in-law that I've ever had (her words exactly and i think so too) for a few days and so that means Mr. CF Rider gets to chill for a few days.  Now before you start thinking all that "while the cats away" stuff, remember, I'm  a pretty boring guy who doesn't really know much beyond my sphere of influence, which is obviously very limited, but currently expanding.  Well in the course of events that followed the lovelies' departure, I had to remove myself from the house and go for a therapy session.  Luckily my counselor is available 24/7 and works real cheap (most of the time).  Heck I think I paid less then $3.00/hr today.  Find a better rate and I'll.........well, good for you then.  For those of you who are slower in the uptake department, such as yours truly, yes I got out and rode my motorcycle for a while to clear the thoughts and cobwebs out of my brain, along with a couple of good oysters who seemed to take up residence in my lungs (CF reference).  I found myself thirsty and hot so I ended up somewhere familiar.  Yep, the Starbucks where Mrs. CF Rider works.  Don't you sit there and tell me that's lame for a biker, it helps me to miss her a little less, besides I thought if someone was here working that knows I am married to the best little barista in Alabaster, AL, my iced coffee might come free.  No such luck, to the ones on this shift I'm just another average 5'5'', 125 lb., guy with tattoos and an 800 lb. steel horse who fights for his life and for others on a daily basis.  You know, we're a dime a dozen and my coffee still costs more than $5.00.  Damn!

But I digress, regress, recess, and any other ess I can think of right now and want to get real here for a bit.  Many of you know what CF Riders is about, heck I hope if you are reading this, then all of you should know what CF Riders is about.  If not, then Google CF Riders, go to our website, like us on Facebook, follow on Twitter, whatever you gotta do to get your information (shameless plug).  So the past two years have obviously been a roller coaster ride for us and I will expound more on all that in the coming editions.  For now I want to talk about the past 3-4 months and how that has been captured for me personally in one day.

We all have our ups and downs and we just hope that the ups far outweigh the downs and are more frequent in occurrence.  I knew going into starting a non-profit foundation and especially waging war on something as heavy as Cystic Fibrosis that I would be put through the gauntlet of emotions.  I have experienced one of the toughest things in this world and one of the best in this world over the past few months.  Back in April, I was honored to be a part of a funeral for an amazing 11 year old boy who I had never met.  This my friends was hard.  Very hard.  I choke up to this day thinking about it, but it was something that I was meant to be a part of.  I will detail this more in the future as I promised myself and my buddy D.W. that I would.  That was a very low point, but I consider myself blessed to have been a part of it, and as God usually does, He made a mark on my heart forever in a good way that day.

Fast forward from April to this past weekend.  I was able to take part in an event that, again, humbled me to even be a part of.  I was able to ride from our HQ here in the 'Ham, AL up to a small town in the extreme southern part of Ohio.  That meant a lot of riding for Mr. Softass himself.  If you know me personally, you know I have no junk in the trunk per se.  I had to talk Mrs. CF Rider into letting me fly a solo mission and, as usual, she was supportive, albeit with some concerns.  I was able to go up and participate in a group ride that was put together by some absolutely amazing people in a matter of two weeks all to raise funds for another CFer who had just had a double lung transplant.  I was blessed to see a group of REAL people who care about a common purpose come together to do something amazing for someone in a time of need.  The whole time I had people thanking me for riding all the way to Ohio to participate and make a donation, but the real thanks goes to them for showing me what can be done when good people get together to take care of one of their own.  Again, I will blog about this further in the future, because I want to and frankly because these folks need to be bragged about a little more.

So how does all this come down to today Mr. CF Rider, you ask?  Okay, i'll admit, you probably didn't ask that, in fact you probably said " get to the damn point already, i gots other things to do!"  Well okay, okay, don't get pissy with me, i'm sorry for being long fingered.  I can't be long winded anymore with lungs like this now can I? 

So today, again, I am run through the range of emotions, albeit, at the same time.  I find myself ecstatic and so thrilled for a young couple in Georgia whom a wife and mother just received her second chance at life with lungs that were given by a selfless person who made the decision one day that with their death someone else may live...hmmmm, where have I heard that one before?  From all reports that I've seen she is doing wonderfully post transplant and things are progressing better than expected.  Again this is someone I have never met before, but hope to one day for I know that she will make the most of her gift.  Yay for God, yay for good.  May we never forget that there is a grieving family on the other end of a good transplant story.  Father, please thank this person for me as I know only you can and help to heal the void that is left in their loved ones souls.  Amen.

Still the other side of the coin is the one stuck in my craw (it's a southern thing, look it up).  I have been chatting with another CFer and other members of the family on and off the past couple of days.  It started out just commenting on a post that another CF friend of mine posted on because it seemed this person needed a bit of encouragement.  I admit it, we all need it time to time.  Mr. CF Rider needs it almost everyday, which is why Mrs. CF Rider bakes cookies, cupcakes, and Rice Krispy treats so often.  MMMMmmmmmmmm good.  Well in the course of further discussions, this CFer is sick and needs to be admitted to the hospital, as we sometimes do.  I find myself worried and praying for her and her family often and anxiously awaiting word on what is going on and why she is so sick.  I then come to find out this person is post transplant but yet is neglecting to take the proper medications to prevent rejection.  My first reaction was total and complete anger and I made this known.  Honestly part of me is still rather angry about it.  I mean how can you receive a gift of new lungs from someone who paid the ultimate sacrifice so that you could live, and to treat that so callously by not even caring enough to take your proper medications.  I was hard on this person.  I was hard on her mother.  Maybe I should have been, maybe I shouldn't have been, either way, it is what it is and it was what it was.  Maybe this person needed to hear what I had to say, maybe they didn't, either way I hope it was heard and received with the love that it was given, harsh as it may have sounded.  You see I have lost friends who would have given anything for those healthy lungs.  A family lost their little boy because he had bad lungs.  A wife and kids, lost their daddy because he had bad lungs.  Friends lost someone who gave them hope because she had bad lungs.  You name the situation, they have lost someone to this incredibly horribly disease which most folks still don't even know about.  They have endured incredibly pain, unbearable nights in tears, and countless questions without ever getting their answers.  And here is someone who isn't interested in doing what they need to do to continue life.  You see, these drugs are necessary after a transplant to continue living.  They help your body to not reject the new lungs.  In essence this person was consciously and knowingly rejecting them with their mind.  

Okay so I was pissed.  I got on the bike and rode a while.  I came to Starbucks got some coffee and started to write.  While riding I thought about what I was like at this persons age.  God knows I didn't do all of my treatments, but I was never so sick that a round of oral antibiotics didn't knock it out.  I was rarely sick at all....I was a normal kid.  I did stupid stuff with my friends.  CF never held me back from anything.  So the question begs, if CF did hold me back from being normal, would I have been different?  Would I have rebelled against this disease and cursed it day after day?  The answer is................................

........................I don't know.  That wasn't the hand I was dealt.  I like to think though that if I had to have a transplant at an early age that I would have been mature enough to do what needed to be done to stay alive.  If not for me, but for my parents who still try everything they can to protect me to this day, for my brothers who kicked my ass, locked me out of the house.........NAKED, stranded me on the roof after fetching a ball and making me jump down, for my friends who never saw me as anything but a friend, and for all the others I have encountered in my life.  I endured all that to make me the person I am today.....a FIGHTER.  I am thankful for each and every trial i've had because they have prepared me to do what I am doing today.  They have prepared me for the ups and downs and everything in between that I am experiencing today as we struggle to start our non-profit.  They have given me a voice, a character, a strength to persevere, and a will to fight for others.  

I just don't want anyone else to be deprived of that themselves, especially if we have the choice.  If you have a dream, follow it.  If you have a voice, speak it.  If you have a calling, answer it.  And if you have a battle, FIGHT IT.  You'll be amazed at your own strength and who you will meet on the battlefield to help you out.




  1. Amen Brian, Amen...
    You, dear sir, are an inspiration; I thank God for placing you here at this time & in this way.. May He give you the desires of your heart, you so deserve them..

  2. I appreciate you verbalizing your thoughts for us and sharing so much. I do totally understand your frustration, anger, etc. I think about so many people I have come to know & my own son who may someday need a transplant. I also have family who have donated & received organ transplants. My brother died much too young at age 29 from a brain tumor. He left behind two very small children. His organs changed or saved the lives of 6 different people when he died. I would hope that those people made the most of their lives. I think that the gift of receiving an organ to save your life should be treated with the upmost respect. There are so many people just waiting for that gift and hanging on with each breath....literally. On the other side I am not in those shoes and I know that with some transplants you are trading one set of medical issues for another. This is something that should be expected though and understood before transplant. I have heard of some young adults not wanting the transplant, but parents pushing for it. That is another conversation in itself.