This is my Dad. Douglas E. Beardsley. Towards the end of 2016 he was on the top of his world. He was serving as Bishop over the local church congregation. He was the head of the County Health Department with increasing roles and influence in Health services State and Nation wide. He had a healthy, united and growing family extending several generations in either direction. When everything is so good, where does one go from there?
For my dad, he came 2 centimeters away from brain dead.
November 6th, 2016 was the last time I had a conversation with my dad the way I’d always known him. My family tried to Skype with my parents every Sunday. Sometimes we miss a week or two, but I am so grateful we made it work that day. But even then at the time, dad was miserable with a headache, and couldn’t participate all that much. He thought it was just a sinus infection, perhaps.
The next day, the symptoms became much more serious. Dad didn’t feel well, but he still attempted to go to work. He ate a guacamole waffle for breakfast and packed himself a bottle of syrup for lunch. He didn’t get much done at the office, because he couldn’t figure out why none of the application windows would open on his computer; it wasn’t even on. These mix-ups are admittedly a little funny, but they did indicate that something was very wrong. Mom came in and convinced dad to take a car ride with her, and she took him to the Hospital.
The scans showed that dad had a potato shaped swelling in his right Temporal Lobe. The Temporal Lobe is used to connect meaning to objects, which explains why he had trouble figuring out which foods go with what. But that specific location and shape of swelling also pointed to Herpes Simplex Encephalitis (HSE). A rare (only 2 cases per million population per year) complication from the otherwise harmless cold sore virus. While cold sores are dormant, the viruses “hibernate” in nerve cells around the mouth area. But every once in a while, the virus might travel up the nerve and sneak its way into the brain.
I began to google HSE right away, and my findings made my heart drop. “Without treatment, HSE results in rapid death in approximately 70% of cases; survivors suffer severe neurological damage. When treated, HSE is still fatal in one-third of cases, and causes serious long-term neurological damage in over half of survivors. Twenty percent of treated patients recover with minor damage. Only a small population of survivors (2.5%) regain completely normal brain function.” – Wikipedia entry.
Statistically, he’d have better odds if he’d been shot through the heart with a gun (24.5% mortality rate) or had brain cancer (30-50% 5 year survival rate). I’ve graduated college with a degree in Biology and watched all 8 seasons of House twice, yet somehow this devastating illness has escaped my attention*. And it’s not like the virus is rare; over 50% of all Americans carry Herpes Simplex Virus I, it’s just that many are asymptomatic. This crisis was as “Out of the Blue” unexpected as possible.
*There was a House Episode featuring HSE, Season 2 Episode 19, but it was from the Herpes Virus type II (Gential Herpes) which is sexually transmitted and thus more avoidable.
Dad was rushed to the Neurology wing for treatment. Brain infections are difficult for both the body and doctors to treat, primarily because the Blood-Brain barrier limits what chemicals and antibodies can come in contact with the grey matter. Plus, viruses are already difficult to kill. The only medicine that really had an effect was Acyclovir, which interferes with the Viral DNA replication and slows it down, giving the body a better chance at catching up. Unfortunately, the only way the body can stop a virus in the brain is to kill off infected brain cells before they can spread the virus further. And every cell lost is permanent damage.
My brothers and I all flew/drove to Iowa as soon as we could. I first got to see dad on the 11th, which also happens to be my Birthday. The couple of days prior to my arrival, my dad’s condition seemed to be on the mend. But when my mom took me in to see dad, he’d had something of a lapse and was breathing through a tube as a precaution against seizures (the monitors had detected seizure activity, even though outward symptoms were not readily apparent).
Dad seemed miserable. He had a fever and a headache and just seemed exhausted. He couldn’t talk, couldn’t eat and couldn’t get out of bed (though he really tried his best and gave the nurses grief as they tried to convince him to stay connected to the machines). He hadn’t shaved since he was admitted, so mom brought his electric razor and gave him a trim. The blades caught and pulled on a few of his whiskers and made dad wince. It might sound odd, but I was so relieved to see such a familiar expression on his face, even if it was pain. It showed that my dad was still in there.
He got the tube out the next day, but he was still steadily feeling worse. His voice was weak, and he had trouble recognizing things, but he did manage to give me a “Happy Birthday Alan,” which felt so good it almost made me cry. Mom was a hero, because she got a doctor friend to take dad’s case and re-evaluate his progress. New scans showed that swelling in my dad’s brain was nearing critical levels. If it got much worse, he would be at risk of a mid-line shift (where the brain moves too far off center) or damaging pressure on the brain stem. They decided to give dad a Craniotomy and removed an iphone sized section of his skull to give emergency relief to the pressure.
Surprisingly, getting a 3″-5″ hole in his head made dad feel a lot better. He still was feeling really ill, but this was the point at which he started making a comeback. He began eating and talking more. He started getting up and walking around with help. At this point, the infection had spread to about half of his brain, but it seemed to be slowing down. And not a moment too soon, because the front line was only about 2 centimeters away from his brain stem. If it got to there, then it could very likely stop his heart and other vital functions.
I should mention that throughout this whole process dad’s sense of humor was spot on. I think he’d have to be dead before he’d be unable to throw out a quick pun. I was no longer scared for his life, barring any relapse of the infection. But the question on everyone’s mind now was how far could he recover?
Most of the friends and family seemed super optimistic. Maybe overly optimistic. A lot of people in the world can eventually make full recoveries from brain injuries, but many of those were cases of swelling from a traumatic injury or an infection of the meniscus layer around the grey matter. Once the pressure goes away, the brain can keep on just like before. But in my dad’s case, his brain would need to reteach itself a lot of skills and rebuild a lot of connections using the remaining healthy cells. Nothing is going to be gifted to him automatically.
Dad had to go 2 months before he could get his skull put back together. They’d kept the removed plate in the freezer until he was ready for it. In that time he’d already begun physical and speech therapy to help him get moving and gain some independence again. He made news headlines for using ballroom dancing as part of his exercise, using a traveling harness for safety.
So a quick list of things that my dad has retained, despite his injury: Dancing, a Quick Wit, his French Language skills, his Cooking skills, and his Religious Testimony. Things like his short term memory, naming objects and things, and getting the right date and location have been the most difficult, but those are hardly the really important things in life. He’ll still do funny things every now and then, like try to put two contact lenses into one eye or use the wrong condiment on his food, but those too are brief and easy to get past.
My father is a great man. He was before, and he still is now. The people who know him love him, and those who have worked beside him respect him. Proof of that came on March 7th, 2017 when Johnson County Iowa proclaimed March to be Brain Injury Awareness Month. Dad stood in front of a board of County Directors and gave a short speech about his experience. You can access a recording of the proceedings at this link:
Also, here is a link to some of the news coverage about the declaration:
I’m glad that my dad is still with us, both mortally and mentally. He’s going to be able to enjoy years of great experiences and be able to watch my children grow up. I hope that anyone reading this can have an appreciation for the miracle of modern medicines and medical care, and recognize the power of Faith.
Many of you may know friends or family with Brain Injuries, or perhaps you’ve experienced them yourself. Know that society does care about you and that awareness is spreading. So if your County or State wants to get on board with Brain Injury Awareness Month, share these links and these stories. Thank you.