I was recently inspired by the back of a t-shirt: “I run for John.” There was a message about what caused John to leave this earth at an early age.
Why don’t I do something like that!? I really don’t know why it hasn’t dawned on me before. Am I so wrapped up in myself and ‘winning’ that I forgot to embrace the fact that I CAN run, I CAN breathe, I AM alive?
So today, on the birthday of someone whom I love, I will tell you a story…and RUN for him. (Hood to Coast today…lots of running to do!)
Let me tell you a little story about an amazing person.
This person was the son of a wonderful single mother with no family nearby to help her raise this boy. Her husband had left her when this person was just a baby.
This person was very active, personable, witty, and full of life. He also had some pesky problems. He couldn’t gain weight, he got sick a lot, and he had some digestive issues. He was diagnosed with Celiac at the age of two.
This meant he couldn’t eat anything with gluten in it. This is not so strange of a story given the world we live in right now. Ten percent of the US population has Celiac disease….but I digress…
When he was a junior is high school, he was also diagnosed with asthma.
Despite his diagnoses, he was very active. He participated in Karate, was always outdoors…or at the movies. He led a fairly normal life…except, he still had those pesky problems. He had great friends, brought a smile to everyone’s face, and was a great addition to the staff at Roth’s IGA in McMinnville and Salem,OR. Still…those problems.
Finally, in the summer of 1991, at the age of 18, sixteen years after the diagnosis of Celiac disease, Brandon Godbey was diagnosed with Cystic Fibrosis. He was told at this time, he had 50% of his lung function and was given 5 years to live. Maybe he didn’t realize the extent and weight of a fatal diagnosis at the moment…but the first thing he asked was, “Does that mean I can eat anything I want?” That’s Brandon for you.
He wasn’t a whiner. Always looking for the positive in a situation.
Cystic Fibrosis – Incurable Disease
Cystic Fibrosis is an autosomal recessive genetic disease for which there is no cure. At the time of his diagnosis, the life span for people with CF was early 20s. With a lung/heart transplant, that could extend to late 20s, maybe early 30s.
The mutated gene that causes CF is the for the protein CFTR. This protein regulates the chloride and sodium movement between epithelial cells. The delicate balance of these ions affects components of sweat, digestive juices, and mucus secretions. CF can affect the pancreas, the digestive tract, but most deadly – the lungs. The usual signs and symptoms include:
- Inability to gain weight
- Poor growth
- Salty tasting skin (HALLMARK 1st sign) - Brandon took this test at age two and it came back negative
- Malabsorption of nutrients
- Diabetes (due to pancreas damage)
- Respiratory infections that are resistant to antibiotics
- Thick, sticky mucus
- Shortness of breath
- Bowel troubles
Today, newborns are tested for this disease as there are 900-1000 new cases in the US each year. The life expectancy has risen to 37.4 years of age. This is VAST improvement. Not that it helped Brandon Godbey…
Life – Live it
The diagnosis of Brandon was devastating. He was diagnosed so late! In fact, they declared him “end-stage CF” at his diagnosis. He was put on oxygen routinely in his early twenties. He carried an O2 canister in a backpack and wore a nasal cannula without any hesitation. It made him different and he was proud of it. He wanted to show people that no disease could dim his RADiance.
He continued to work at Roth’s. He hiked with friends. He became a volunteer police officer with the city of Amity. His final job was at Starbucks in the lobby of Doernbecher Children’s Hospital which was part of OHSU – his hospital “home.”He continued to brighten everyone’s day.
Life – Accept it
Yes, he pressed on, but from time to time he was sidelined by the disease. The lung infections landed him at Oregon Health Sciences University hospital frequently. He was a regular on 7CVA, like the other “older CFers.” Even in the hospital, his attitude was one of NO WHINING. What would that do for him? Absolutely nothing. So why waste precious energy on a bad attitude.
Life – Unexpected
This is where I met him. In 1998 I was a Certified Nursing Assistant at OHSU on the floor he frequented. I met him in June of that year. I was helping another CNA take something to his room. He had a cannula in his nose, was watching COPS on TV, and his cheerful mother was there by his side. He cracked a couple jokes and thanked us. I was confused. He looked totally ‘normal’, well, except for the cannula. I asked the other CNA, “What’s wrong with him? He doesn’t look sick?”
She told me about CF. I couldn’t get over the severity of the disease and how well he seemed to be doing. Especially when I heard how many times he had been on our unit over the past year and how long he usually had to stay.
I was intrigued. Brandon piqued my interest with his disease, because I was a medical nerd getting ready for Paramedic school, and his amazing attitude. It truly blew me away. Always upbeat, always smiling, always joking. Never a complaint out of him.
He would have coughing contests with other CF patients. Seriously, disgusting. The mucus of CFers is thick, dark, and takes a hell of a lot of help to get out. But he used it as a way to connect with others, make it ‘fun’,when it was anything but.
Flirting ensued. Note to self, don’t date patients…oh well, too late now.
We had our first date in June of 1998. We went to a movie and then to Starbucks. He didn’t wear his O2 tank and cannula unless we were in the car. He wanted to impress me. But, he already had.
I was enamored by his enthusiasm with life, his wit, and strength. And he never complained. Ever.
Life- Reality of Mortality
The harsh reality of the situation started to worry me. He was “end-stage.” Stupid or poetic, I was in love with him. Over the next 8 months, I worked as a CNA, went to Paramedic school, hung out with B – in and out of the hospital. February 1999, he was in again for yet another lung infection. The antibiotics weren’t working. His mom and I took shifts around the clock to be with him. I had to quit working on that floor because it was too intense.
Brandon was sick, but stronger than ever. His team of CF doctors, while doing their job, infuriated him. He called them the “gloom and doom” team. Finally, he had had it. He talked to his main doctor, Dr. Powers. He told him that it was unacceptable to come in with a poor attitude. If he crushed all B’s attempts at a positive outlook, they could no longer be a part of each other’s lives. He essentially told him, “Stop being a depressing ass or I will fire you.”
Wow. Who does that?
From then on, it was about working his ass off to get better. And that meant…transplant.
We made the trip via ambulance to Seattle in March 1999. Brandon was admitted to the University of Washington Medical Center. He was going through testing for transplant. It became obvious to us very quickly, that he would have to stay there while awaiting transplant. He got much sicker and wasn’t going to be able to be transported back to Oregon without seriously risking his life.
Now, let me just tell you this: I was there for all the tests and the one that ROCKED MY WORLD the most was the CT of his lungs. The tiny amount of lung tissue that was ‘working’….I couldn’t believe it. Literally, a speck of each lobe was working. “How is he even alive!,” I thought. I asked the tech if I was seeing that right. B saw the look on my face. He didn’t like it. “Don’t look like that,” he told me.
We played cards, we talked, we prayed, we enjoyed each other. So strong. So RADiant.
We took a stroll outside one afternoon. I pushed him in his wheelchair. He talked about the promise ring he gave me. He talked about being married. He looked at me and said, “If I die, I don’t want you to be with anyone else.” I was shocked. I didn’t even know what to say. That was the first negative thing I think he had ever said to me.
He was scared….and he let me in on it.
Then it got worse.
Saying Goodbye- Round 1
The morning we ended up in ICU was the most horrifying experience of my life, but I was very strong. Why? Because I knew B. I knew he would fight. And he did.
His CO2 level was off the charts, he was delirious, and eventually unconscious. He was on CPAP. He was essentially dying. The doctors pulled his mom and myself into the conference room. He told us B wouldn’t last the night. He told us they would bring in the Chaplain.
Brandon was given his last rites.
We played his favorite music. I cried and laughed and talked to him. I said, “It would be just like B to wake up.” I fell asleep holding his hand with my head on the edge of his bed, sitting in a chair.
It was 2am.
He woke up. “I’m hungry,” he said.
The doctors were shocked, but we weren’t. Be never quits. He never whines. He always wins.
Saying Goodbye – Round 2
The next 5 days we worked hard to get B strong again. There is a level of “wellness” you must have to be eligible for transplant. B was up for the challenge, but was more concerned about me. I had taken time off of school. He told me to go back and do my clinicals. That meant driving 3 hours each way back to Portland. He told me to go down, do a rotation, stay at home a night, and come back. Thinking about that about killed me.
But he insisted.
When I returned from the first rotation, he was okay. I felt better. We talked, we laughed, and we cried. He was fighting, but it was becoming increasingly difficult to even do the minimum.
He reminded me of his last wish and felt now was the time to fulfill it. He wanted to be married to me.
I drove back down for another rotation and while I was in Portland, I bought two gold bands.
I returned that evening. I didn’t want to wait until morning. He had been moved back into the ICU. I was frantic.
It was a Friday night. I showed him the bands. He smiled. We put them on each other. He was exhausted. He slept while I read him my vows.
The next day was tough. He kept saying, “I’m married,” and “Your my wif.”(That’s not a typo, he called me ‘wif’ not ‘wife.’ He thought it was funny) He was all smiles. He was also very restless. He didn’t want to sleep, he didn’t want to rest, he wanted to fight. He wanted to cough up the mucus, clear his lungs, get better, get out of there, go home, and live his life with me.
Within hours, the nurses suggested we give him morphine so he could rest. I was hysterical. NO! I knew if we did that it would suppress him more and he would not be able to cough. They reluctantly agreed.
I went back in to his room. He was different. Flaccid. My friend Joy (B’s favorite nurse who came up to help) and I went to turn him, like he have been, to prevent bed sores. He was dead weight. He didn’t respond. But he was still breathing.
That’s when I knew. His fight was over.
I cried to the nurses. “Please, give him the morphine. I don’t want him to feel anything!”
His high CO2 level pretty much guaranteed that he wouldn’t feel a thing. It causes a euphoric state of mind.
Monitors turned off. Leads removed. And finally, the oxygen mask taken from his face.
Brandon Jacob Godbey, the strongest, bravest, most inspiring person I have ever known died on April 4th, 1999 – Easter Sunday.
He left this world with the people around him he loved the most. And…he was married…to me. I was honored and forever changed by the amazing spirit of this man.
And I was not alone. The funeral was standing room only. He had touched so many lives and had inspired strength in others just by being himself. Brandon was not a whiner.
This my friends, is RADitude. Be grateful every day. If nothing else…RUN and BREATHE….because YOU CAN.
This post is dedicated to Brandon Jacob Godbey and Dianna Godbey who is still very much a part of my life.
I hope this post inspires you to love life, despite your circumstance. To see the good that God places before you. To appreciate your blessings. To understand that EVERY circumstance in your life shapes your forever.
There is really so much more to this story…you may read it in a book one day. But for today, just share it please. Spread his RADitude to others. If you know someone with Cystic Fibrosis, share his story. His courage.
If you would like to make a difference, you can donate your time or money to your local Chapter of the Cystic Fibrosis Foundation.