Tell a Story, Change a Life

7 06 2012

When a healthcare professional explains the science behind the design and manufacture of vaccines in order to reassure moms and dads that vaccines are safe, many parents politely listen, nod, and go about their day with their thinking firmly unchanged. What they’ve just heard is abstract and they can’t relate to it. There’s no “ah-ha” moment.

When a mom whose child has died from a vaccine-preventable disease stands in front of other parents, either in person or on camera, and tells her family’s story, most parents, no matter what their beliefs are about the safety of vaccines, feel that pain, empathize with that mom, and bristle with protective feelings for their own children.

This mom that we’re listening to is just like us. She’s a normal person who’s had an exceptionally horrible experience. While watching and listening to her, we realize that the same event could happen to us. We have our “ah-ha” moment.

The evolving, or perhaps revolving, discussion around vaccine safety needs to marry the presentation of scientific fact with that of the human experience for a comprehensive picture of the need for vaccination and the results of not vaccinating.
 
Storytelling
 
Author Steve Denning in The Secret Language of Leadership discusses “narrative,” or storytelling:

“In making the case for narrative, I am in no way trying to undermine science or drag the world back to the dark ages of myth and superstition. On the contrary, I am committed to science and its self-correcting methodology. We need to apply double-blind controls in experiments, where neither the subjects nor the experimenters know the experiment’s objectives during data collection. We need to vet our results at professional conferences and in peer-reviewed journals. We should insist that research be replicated by others unaffiliated with the original researcher. In our reports, we need to include any evidence to the contrary, as well as alternative interpretations of the data. We need to encourage colleagues to be skeptical and to raise objections. If extraordinary claims are being made, we must put forward extraordinary evidence…

“…But when we’ve done all that, and it’s vital that we do it, how do we communicate the results of what we have discovered, particularly if our findings are highly disruptive to people’s lives? If we try to communicate those findings by the same methods through which the findings were derived, what usually happens? Pushback. Resistance. Cynicism. Hostility. If we use narrative intelligence…the results can be very different.

“It’s a matter of using science and analysis for what they are good at, and using the language of [narration] to communicate science’s findings and get them implemented. Just think for a moment. Would it be scientific to go on using the language of analysis for an activity for which it isn’t suited, while refusing to use a different language that does work? To adopt such an approach would be the height of unscientific behavior.”

Evan’s Story
 
Lynn Bozof, from the National Meningitis Association, shares her family’s story:

March 25, 1998, is a day that my husband and I will never forget.

It was a day marked by events that have left a permanent hole in our hearts. It was the day our son, Evan, called from college to tell us that he had a migraine headache.

Evan was 20 years old, a college junior and honor student, and a pitcher on his college baseball team at Georgia Southwestern University.

He complained of a horrible headache, the worst headache he’d ever had, and was nauseated. He said he couldn’t hold anything down. He said that the light in his dorm room hurt his eyes. Evan had never had a migraine before, but migraines do run in the family, so we weren’t overly alarmed.

By dinnertime, Evan was still feeling awful. We told him to get one of his friends to take him to the emergency room. We thought that at least he could get something for his nausea. During the next few hours, we talked to his baseball coach, who had gone to see Evan at the hospital, and the ER physician, who told us that Evan had a little virus.  The hospital had decided to keep Evan overnight so that he could have a quiet night to get more rest.

The next morning, I called Evan about 7 AM. The nurse answered, and said that Evan felt too sick to talk to me. I asked her to put the phone up to his ear. I asked him if he wanted us to pick him up and take him home for the weekend. He said he did.

Evan was on spring break, but really didn’t get much of a chance to have one because his baseball team had games scheduled during that time. We figured he must be tired, and a weekend home with us where he could rest and eat good food was what he needed. 

My husband and I were making arrangements to meet back at our house when I received a phone call just after arriving at work. I was told that Evan had meningococcal meningitis and was in critical condition.

When you get a phone call like this, your mind can’t even absorb what you’re being told. I knew so little about meningitis, that when the doctor said that it was bacterial, I thought that was the better type to have. I thought, well, at least there were antibiotics. I didn’t realize that bacterial meningitis, especially the meningococcal meningitis that Evan had, was much more deadly.

My husband and I drove the 3 hours to Evan, not knowing if he would be alive when we got there. We stopped mid way to call the hospital to check his condition. At that time, we didn’t have a cell phone to keep in constant contact with the hospital.

When we got to the hospital, administrators were waiting to talk to us. They wanted to prepare us for the way Evan looked and the criticality of his condition before we were allowed to see him. That frightened us even more.

Evan was in quarantine and was receiving oxygen with very labored breathing. He was covered with the telltale purple rash. He could barely speak; he was so tired. He told us that it took every ounce of energy he had just to roll over.

We were told that the next 24 hours were critical. My husband and I started the countdown. One hour down, 23 more to go. Calling our relatives to let them know what was going on. Trying to reach our younger son, Ryan, who was on spring break with friends in Panama City, Florida.

After a few hours, the doctors decided to transfer him to a larger hospital about 40 miles away, better equipped to handle bacterial meningitis. As he was taken to the ambulance, I said, “Love you, Evan.”  As weak and sick as he was, he said, “Love you, Mom.”  Those were the last words he said to us.

When Evan arrived at the hospital in Albany, Georgia, he was put on a ventilator and put into a drug-induced coma.  It wasn’t long before his kidneys shut down, then his liver and lungs, and eventually it was affecting all of his organs. His fingers, his toes, his ears, his nose, all turning black. Then his entire hands were black; then his entire feet; and the gangrene kept spreading up his limbs.

We watched our son fight to breathe, fight to live. After two more weeks, Evan was transferred to a third hospital, which had a burn unit. The damage to Evan’s organs from the meningococcemia was similar to the damage that burn victims suffer.

One day later, Evan’s arms were amputated above the elbows and his legs above the knees. We had to sign consent forms allowing the doctors to amputate as much as was necessary to save his life.

We had no choice; we would do anything to save Evan. Several days later, Evan suffered 10 hours of grand mal seizures. The seizures caused irreversible brain swelling. Evan was brain-dead.

This son of ours, loved more than we can put into words, had to be disconnected from the machines that were keeping him alive…had to be put into a body bag in front of our eyes.

After Evan died, we found out to our astonishment that a vaccine was available, a vaccine that would have saved Evan’s life. Not a new vaccine, but one used very successfully and safely by the military to control meningitis outbreaks for over 30 years.

The vaccine protected against four of the five strains of meningococcal meningitis. If we had known about this vaccine, Evan would have received it and Evan would be here today.

Please don’t let this happen to your child. Immunize and protect your loved ones. There is no getting over the loss of a child. It’s a wound with a scab that never completely heals.

Storytelling is human. It moves us to action as no other communication can, so please use it.

This article comes from PKIDs’ Communications Made Easy program.





Losing Evan

5 01 2012

As a new mom, many years ago, I was in awe of this little baby boy I took home from the hospital. As with all infants, he depended on his parents for everything, and everything is what we wanted to give him.

Time seems to spin faster and faster once you have children.  I was so enthralled with each new development—the first smile, the first time he rolled over, and then couldn’t roll back. The first sounds, crawling, trying to stand on those sturdy little legs.  I was so busy watching him, but also worrying.

As a parent, you hope and pray that nothing catastrophic will happen to your child.  Minor things like tubes in the ear—those you get through.  But being nervous by nature, I would worry about childhood cancers, accidents, or other tragedies. I was so lucky to have wonderful kids—two great boys, who were good students, kind and funny, and just the loves of our lives.

Our best memories were of the years spent watching them play soccer, baseball, and basketball—sometimes all three at the same time.  I wouldn’t change those years for anything.

Of course, my sons had their yearly physicals, and all of the vaccines that were recommended. From the day he was born, until the day he graduated from high school, I feel like all I did was turn around. How did 17 years go by so fast?

Time was speeding up, faster than I wanted. It was part of the natural cycle for my sons to go off to college, and I was happy for them. However, not happy for me. I definitely suffered from empty nest syndrome.

And then my son was a college junior—honor student, pre-med, and a pitcher on his college baseball team, and with a phone call, our world fell apart.

My son called me at work, complaining of a horribly intense migraine, nausea, and sensitivity to light. Several hours later, when he wasn’t feeling better, I asked him to have his roommate take him to the hospital. We were told by the ER physicians that Evan had a little virus, and they didn’t want to send him back to his dorm, so they would keep him overnight. We asked the doctors if we needed to drive down, and they said no. I was uneasy, but said okay.

The next morning, we received a phone call that Evan had bacterial meningitis and had a 5 percent chance of survival. Evan fought for 26 days before he passed away.

After he died, we found out that a vaccine, used by the military for years, could have saved his life. I was even more devastated, if that is possible, because I was overcome by tremendous guilt. Evan had every vaccine that was recommended before he went to college, but no one told us about meningitis.

Shortly after we had moved from California to Georgia, there was an outbreak of meningitis in the Atlanta metro area. My husband and I remember Evan coming in to our den and asking, “Mom, how do I know if I’ve got meningitis?”

I told him, “Oh, Evan, you don’t need to worry about that.” I can’t tell you how those words haunt me and always will. I should have looked into it more, instead of dismissing the idea. Maybe if I had investigated, I would have found out that the military routinely vaccinated recruits.

Would I have found a doctor to give him the vaccine, since it wasn’t recommended by the CDC at that time? I don’t know, and I’ll never know. But back to the racing of time that I mentioned earlier. Part of me will always be in 1998, with the vision of my son at 20 years old, when he passed away. He will always be 20. I don’t comprehend how 13 years have gone by. Again, I turned around, and this huge chunk of time has passed.

My message—make sure your children are vaccinated against all diseases for which there are vaccines. Be proactive and do your research. If the doctors don’t mention vaccinations to you, then speak up. It just takes a second for your life to change forever.

By Lynn Bozof, President of the National Meningitis Association

Images courtesy of the Bozof family