Remembering Brian Johnson

In Brian Johnson, the world lost a dear person on September 23, 2014. You can learn more about Brian, his mission, and his impact on the world at CF Riders

I was fortunate and honored to be asked by his wife Christie to deliver one of his eulogies.  Below is the text of that message. 

     I’ve been asked by Christie to come and talk to you people about Brian Johnson first and foremost and also about the disease, cystic fibrosis.  Let me give you a little bit of background as I tell you “my Brian story”.  My name is Scott Bumpus and I’m a Harley-Davidson dealer in Jackson Tennessee.  I am also a husband, and a father of three beautiful children.  My youngest child is Brandon, and he and my wife Angie are here in Birmingham with me today.  Brandon is 14 years old and, like Brian, he also has cystic fibrosis.  CF is not something they acquired, but rather, they were born with it.  A child has cf from the moment of conception, a chance meeting of two rogue mutant genes, one carried by the father, and one by the mother.  We knew there was a problem in Brandon the moment he was born.  Others, like Brian, are not diagnosed until later on.  I’ll talk more of cf later.   

     As I said, I am a Harley-Davidson dealer.  I make my living in a fun business.  I’m in the dream business.  The act of riding a motorcycle, especially a Harley-Davidson invokes feelings and images of freedom, of escape.  That’s why we ride them.  We are living life.  What I am not, is a doctor, or a scientist.  I’m just a dad.  When Brian was diagnosed, his parents, Ms. Mary and Mr. Paul, and by the way (my most deep condolences to you, from one CF parent to another).  Mary and Paul were faced with the prospect that their son probably would not live to graduate from High school.  At the time Brandon came along, we were faced with similar life expectancies in the early 20’s.  These are things that motivate parents, not to find cures, but to activism.  Doing the little things that we can do to fight the fight and lessen the suffering.  So now, besides being a parent/caregiver, I became a fighter in the struggle to raise money and I would do so through my business, and the motorcycling community.  And I’d like to add, this activism augmenting science has taken those mortality rates and shoved them higher and higher, to the point where now, we even have light at the end of the tunnel, as Brandon is currently taking a trial drug that could for all intents and purposes be the closest thing to a cure for CF that we’ll ever see.  Activism works.

     Anyway, several years ago, another cf parent in west Tennessee sent me a link to a website called CF Riders.  She told me that I might find this interesting in that it was run by a guy in his 30’s that not only was he into Harleys, but he also had CF.  That was interesting.  I lightly perused the sight, and before long, we had made contact via Facebook.  It was in the very early months of 2011 that I first talked to Brian on the phone.  He introduced himself and told me that he’d heard about a Tennessee Harley dealer that had a CF connection and that he’d like to set an appointment with me to discuss what he was calling his Nationwide Ride for Life.  Now, keep in mind, I had scanned over his website, but hadn’t delved too deeply into it.  I’d seen the link for the ride, but had assumed it was like the dozen or so cf poker runs that I’d done over the years.  We agreed to a meeting date and before you knew it, my wife and I sat in my office across the table from Brian and Christie Johnson, and a completely disinterested Hayden… I should say, disinterested in our conversations, but totally enamored with everything else around us.  We talked and talked for what must have been hours that day.  We talked about CF, we talked about the miracle that Hayden was in their lives.  We talked about CF riders.  Brian told me of his drive home from Atlanta one night.  He told me of his conversation with God, the challenge he received from God, that put up or shut up moment.  He told me of coming home, setting Christie down in the floor and telling her that God had given him a direction. He explained to her that God had told him the time had come for him to learn to ride a motorcycle, that God had told him he was to buy a motorcycle, and his mission would be to use that motorcycle as a conduit, to ride, to spread the message, to bring awareness to the disease and to help people who were fighting the fight.  Now, keep in mind, I’m listening to this.  Keep in mind, I sell Harley-Davidson motorcycles for a living.  I’m quite good at talking wives into nodding that head in the affirmative direction and finally agreeing to allow their husbands to buy that Harley, or at least to not kick him to the curb.  I thought to myself, this guy is either telling me the truth, or this is the finest job I’ve ever seen on selling the wife….  Well, it didn’t take knowing Brian Johnson long to know he was telling it as it was.  Now, I can try all I want to deliver that testimonial the way Brian could, and I’ll always come up short.  If you’ve never heard him tell it, I suggest you go check out that video on the CF Riders website.   

     

     Well, he’d done it.  He’d learned to ride and thanks to the good folks here at Heart of Dixie, he found the bike and started riding.  CF Riders was born.  He then started telling me about what this nationwide ride was all about.  It was not a poker run.  No, this was Brian Johnson channeling Forrest Gump.  This was Brian, fighting the good fight, and riding his Harley to all four corners of our nation.  He told me every detail that he had planned.  He would start in Birmingham, and head for Jackson TN, he then had a path that would drag him through Louisiana, Texas, the southwest, up through California and the west coast, across the Rockies, the northern plains, through the Midwest, the rustbelt, into new England, down the eastern corridor, Appalachia, back into our southland and culminating in a great homecoming in Valdosta.  Along the way were events, press conferences, public speaking dates, guest sermons…… 14,000 miles and he would do it in 10 weeks.  I repeat, 14,000 miles in 10 weeks.

     Now, there are two things that I felt I was good at.  One was road tripping on a motorcycle.  I have hundreds of thousands of miles of riding experience under my belt.  I’m here to tell you that the trip that Brian had planned was going to be grueling at best, and at worst, dangerous to the unseasoned rider, perhaps even deadly.  This was not going to be like a ride from Birmingham to Panama City, or even to Nashville.  This was a ride across the American west.  Deserts, mountains, frigid cold and scorching heat.  Weather that pops up out of nowhere, altitude and seemingly never-ending stretches of highway.  I’m also good at being a dad and caring for a kid with CF, and knowing what the regimen was, and what could be considered risky behavior.  I put my “dad hat” on and began to question Brian, “Are you sure this is a good idea?  This is a titanic order for a veteran rider who doesn’t have to think about breathing treatments, chest therapy, respiratory distress, and malabsorption.  Are you sure this is what you want to do?”  Brian’s answer?  He’d never been more sure in his life, in fact, it wasn’t even a choice, it was his calling.  Well, if Brian was in, I was too.   

     

     On April 15 of 2011, Brian launched out of Birmingham on the Nationwide ride for life, spreading the news that CF was real and big, but those who suffered from it were bigger, and God even bigger than that.  Brandon and I also hopped on our bike and spent 4 precious days on the road with Brian.  It was a life changing event for all of us. Four of the best days of my life, memories of riding with my son, and with my friend, and his family and our merry band, doing God’s work.

     Now, Brian did not achieve what he’d set out to do.  He made it deep into the northwest before his health caught up to him and he had to be hustled back to Birmingham and checked into UAB.  He was worried that he’d failed, but the truth was far from that.  He’d made it far enough.  He’d proven himself faithful, and he’d proven that CFRiders was real, a force to be reckoned with.  Though it didn’t have the outcome he’d originally sought, his trip was perfect. CF Riders was not on the same mission of the CF Foundation.  The foundation has but one goal, find a cure.  Period.  Brian’s vision for CFRiders was not about cures, but about care.  Helping those in need.  You’ve heard it out of Brian’s mouth.  CFRiders was to be there for the mother who was having to choose between buying food, or buying medicine.  CF Riders was there for the family little Dalton Wallace.  When Dalton finally succumbed to the disease at the obscene age of 11, CFRiders and Brian Johnson was there, to not only stand at the podium to give comfort to a grieving family, but to also hand over a sizable amount of the money it was going to take to bury him. (See Doing Something For Dalton )

     CF Riders would be a source of scholarship money for people with CF to learn a trade, or go to school, or receive assistance in job placement in a world that might not be too kind to someone with a chronic illness.  CF Riders was about others. 

     

     I witnessed something else happening on that ride, in just those few days Brandon and I were with him.  Part of CF, is what is known as pancreatic insufficiency.  You see, CF creates a thick, sticky slime that clogs the respiratory organs, the reproductive system, and the digestive tract.  When the pancreas is clogged, the necessary enzymes for digestion can’t make it to the stomach.  In order to absorb food, CF’rs must take supplemental enzymes when they eat, at least they are supposed to, every time.  We were out to eat in Memphis on our first night of the trip.  We’d met up with Briana Caldwell, a young lady with CF in her 20’s and were all enjoying each others company, talking about CFRiders and  Brian’s vision, and the days of traveling to come.  

Brandon pulled his little bottle of enzymes from his pocket and took his 4 or 5 pills, prior to eating.  Brian watched him, and said something to me to the tune of, “Uh oh, I’d better go and take mine”, or something like that.  Brandon and I had our bike loaded down, not only with our clothes and riding gear, but also an air compressor for breathing treatments, a medicine bag packed with pills, antibiotics, anti inflamitories, steroids, antihistamines, antacids, and vitamins, tools for loosening the crap that builds up in the lungs, and all other implements of destruction.  We’d do his treatments early in the morning before we left, and late at night before bed.  On the last evening before Brandon and I departed the group, the two of us and Brian sat in my hotel room, offering toasts to each other, and frankly dreading the next day when we had to part company.  Brian talked with Brandon as he blew into his flutter.  Brian told us that having Brandon on the trip made him far more cognizant of keeping up his own treatment regimen.  He said that talking the talk was not enough, he also had to walk the walk.  If he was going to talk of CF and its effects on the body, he’d well better be sure he was leading by example.  He knew people would be looking to him.  He was a leader and if he was to inspire others, he had to do it by example.  He couldn’t let Brandon and other youngsters with CF see him not doing the right thing.  He thanked Brandon that night. 

     That’s the thing about Brian Johnson.  Nothing was ever about him.  It was always about others, and most importantly, about Him.  Brian never sought credit.  The welfare of others was always first and foremost in his heart.

      Like all of you, I’ve quietly monitored Brian and Christie’s journey as lung transplant became an option, and eventually, the only option.  That sticky mess that causes inflammation of the lungs is the choice weapon of CF.  Once lung tissue is damaged, it can never be repaired.  Brian’s lung functions continued to dip, finally down to where his system was functioning at less than 20% of that of a normal adult.  If you’re trying to imagine what that would be like, just stop.  You can’t, nor can I.  Unless you’ve been the victim of a near drowning, you can’t know.  As we all know, Brian was hospitalized for the final time on July the 4^th.  He fought and fought and fought to get himself to the level of health to where transplant could be a viable option. 

     This past Monday morning, I dropped Brandon at school and left west Tennessee for Birmingham.  I walked into Brian’s room, all quiet but the soft sounds of his vent, the occasional beep of a monitor, and sports center playing on the TV.  His eyes were closed.  I embraced Christie and asked her if he could hear me.  She said yes, and I turned to my friend and said, “Hey buddy”.  Brian opened his eyes, still crystal, beautiful blue, and sharp.  He said he was glad to see me, and then said, “Don’t let Brandon end up like this.  Don’t let it get this far”.  Here is this warrior.  I’ll say it again, Warrior. The strongest man I’ve ever met, tougher than nails, grappling in a death match with the monster, and pinned to his back…..  And what does he do?  Does he complain?  Is there any sign of woe is me?  No.  Not even. His thoughts are with Brandon, and all of the others he has been fighting for.  

     That afternoon with Brian was precious.  That night, Brian decided that he’d done all he could do.  He was ready for what was next.  I returned to see him Tuesday morning.  We again talked.  We reminisced about the ride.  We talked of those days being among the best of our lives.  I told Brian how he’d changed me.  Brian stared death down.  Brian was not afraid to die, he had no need to be afraid.  Brian’s only fear was that he had to leave behind the two most important people in the world, and that someone might think he had given up. 

     Given up?  Are you kidding me?  Given up?  No, sir.  Brian Johnson never gave up on anything.  As I’d said, he didn’t give up on his trip when it finally came to a halt up in the northwest.  He’d traveled as far on that bike as his body would allow.  And Brian did not give up on this life.  He did not give up on you or me.  He did not give up on his loving wife, nor his beautiful child.  He just traveled as far as his body would allow.  You see, the real Brian Johnson did not have cystic fibrosis.  His body did.   

     A beautiful rose living in a broken vase.

      It lived in his cellular structure, in his DNA, not in his soul.  CF didn’t beat him.  It did not beat him back in 2010, when he and God pulled a fast one on the monster, shifted gears, changed direction, and he headed down the CF Riders path, with me and a lot of us here in tow.  And it damn sure didn’t beat him this past Tuesday afternoon.  Once again, Brian called the shots.  Brian was in charge, and Brian proved that he was bigger than the disease.  In May of 2011, Brian climbed off the bike, conceded that his body was broken and took his fight to another arena.  He did the same thing on Tuesday September 23^rd of 2014.  He again, conceded his broken body and took his fight to another arena. 

     You see, Brian knew something that CF didn’t know.  And though his body is no more, Brian Johnson is alive.  Alive and well.  There are no vents, no needles and tubes.  No pills and treatments.  The air is clean and his breathing is easy.  The wind is at his back, the skies are fair, and the roads are smooth.  Happiness abounds. 

     When it came time for me to leave, I kissed my friend on the forehead and told him goodbye.  He thanked me for everything I had done.  Once again, are you kidding me?  No sir, thank you.  As a left, I looked at him and he said, we’ll ride again.

     Indeed we will, my brother.

     Remember this:
1.  Listen and obey His voice when He tells you to do something. 
2. Walk the walk, for you never know who’s watching.   
3. Put others before yourself. 

And

4. Don’t wait till it’s too late.   

Do these things and you’ll have taken a small step towards being more like Brian Johnson and God knows, we need all the Brian Johnson like people in this world that we can get.  

     Christie, you were his rock.  You loved him deeply and he never spoke of anything with more passion than he did when talking about you and Hayden.  And Hayden, you sweet little miracle child.  We all love you more than you may ever know.  It is the job of all of us here to stand in the gap for these two, and stand in that gap we shall.

 

     Always remember Brian K Johnson, and always Dream Big, Ride Free, and Breathe Easy

Ride Safe and with Purpose