ForeverMissed
Large image
His Life

A Blaine Memoir – Part 3 by his Dad, Michael Newsom

January 7, 2015

Blaine and Chess

Blaine showed remarkable abilities at chess. He could see all move combinations 5 moves or more out. He was a master at the trap.

One day I took him to a group lesson from International Master John Donaldson. It was a group of about twenty people, mostly older adults, some playing at the master level. Everyone hovered around a small table. Blaine in his wheelchair was allowed to be at the table across from John. Others wedged in. John would play games illustrating different openings. He illustrated each opening with many games, some dating to the mid-nineteenth century. He would show the first 30 moves or so, then stop and ask, what did so and so play next. Immediately Blaine answered pawn to g4. John said that is correct. Then in a flash, John would reset the game to about the tenth move, then play the next 20 or so moves of a similar line of play, from a version of the game in a different decade. Again he asked, what was the next move, and in a similar flash Blaine answered, Knight to f6 (or something of that sort), and John said that is right. Then John reset the game again to some point further back. Now this is especially remarkable because John is playing all these games from memory. After about the tenth demonstration, all solved by Blaine, I heard whispers, who is this kid in the wheelchair. John knew Blaine but he was not letting on; his wife, Elena Donaldson, also an IM, tutored Blaine on a few occasions.

We try to describe intelligence using a variety of adjectives: creative intelligence; intuitive intelligence; native intelligence, etc. The history of the game of chess is closely tied to war. When chess players talk about intelligence, they talk about strategy and tactics, two English words taken from Greek words associated with military campaigns. Strategy is about planning, tactics about execution of the plan.

A common feature of the brains of spina bifida children who had complications due to hydrocephalus is the loss of the strategy function of the brain. The diagnosis is oddly called non-verbal learning disability. Somewhere deep in the cerebellum there is this instinct for cognitive planning. No one completely understands the processes, but the development of strategy intelligence seems to be closely tied to motor skills. Perhaps Blaine did not obtain the strategy ability because of his motor impairment. If chess was all about execution, Blaine could have been a grand master. But chess requires strategy above all, a plan associated with a particular type of opening. Computers that play chess dominate with tactics, but computers must be taught strategy by humans, in order to beat humans.

Blaine learned to cope. Without strategies Blaine played gambits. Gambits are a way of simplifying the game, of offering a piece in order to simplify a position. If Blaine could reach the late middle game or the end game, watch out, because there late in the game tactics dominate. He used these tactics to win the Oregon high school championship on 1st board, quite an honor for a kid with ‘half’ a chess brain.

Blaine placed second in the seventh grade OMSI tournament. First place went to a young boy from Roseburg. His team also won the team title. His father coached their team. I coached Blaine’s team. Winning teams throughout the country were invited to play in the national chess tournament. Each winning team could choose one player from another team for travel to the nationals. The Roseburg coach chose Blaine.

I accompanied Blaine to Chicago with the Roseburg team where approximately 1000 middle school kids competed for both individual and team titles. It was intense. In the evenings before the tournament the Roseburg team practiced. Then over two days they competed for the titles. The Roseburg team did not win a trophy; east coast teams dominated the team competition.

Each player played five games. In his second game Dad helped Blaine to the bathroom four times where Blaine vomited from nerves. I cleaned the vomit from his clothes and he wheeled back to the board. In chess you play against the clock as well as your opponent. Blaine’s clock ticked off valuable time each trip to the bathroom. Under time pressure he made a questionable move. His opponent who eventually tied for first place took advantage of the mistake and won. Blaine won his next three games. He ended with four wins and one loss and tied for forth place.

Blaine loved to play chess. He played people at work on breaks and at events sponsored by work. He played on the Internet. He taught and played with his brother Casey. We played regularly. He beat me often.

A Blaine Memoir – Part 2 by his Dad, Michael Newsom

January 7, 2015

Some Medical Stories

Blaine’s spinal cord failed to ‘zip up’ completely leaving him paralyzed from his lower chest down. This birth defect is called spina bifida, literally split spine. Commonly in spina bifida, as in Blaine’s case, the spinal cord escapes its vertebral surrounding and abnormally attaches to tissue surrounding the spine, and as development occurs in the womb, the cerebellum and the 4th ventricle of the brain are pulled into the narrow opening where the spinal cord connects to the brain, causing spinal fluid to back up in the brain, resulting in the condition called hydrocephalous. Blaine’s first surgery implanted a shunt or tube in his skull to drain spinal fluid from his brain to his abdominal cavity.

Sometimes the shunt fails or becomes infected and has to be replaced. The symptoms of shunt failure are difficult to detect. Is his drowsiness due to a bad night’s sleep or to a blocked shunt? At other times, the shunt area can become infected if an infection elsewhere is transmitted to the area through the bloodstream. Is the fever he has due to the flu or to a local infection around the shunt? We were constantly on the alert for both problems – any delay in treatment for either condition could result in severe brain damage.

I read incessantly every popular and scientific document I could find on spina bifida and hydrocephalous. Remember, this was 1979 and the internet was not available. After reading extensively about shunts and shunt failures, I began work with a fellow engineer on a shunt with a piezometer that would warn parents and patients when the shunt is failing. Our design never reached the manufacturing stage. Meanwhile significant improvements in shunt design foreshadowed ours. Blaine was lucky. His shunt did not fail. He had one shunt surgery, after he grew considerably in length, to add an extension to the tube to reach his abdominal cavity.

We hoped that Blaine would walk using crutches. After many attempts we became resigned to the fact that he would be confined to a wheelchair. I built a very primitive but functional wheelchair ramp connected to our front porch. I loaded Blaine into the car and the wheelchair into the trunk for trips.

Frequently these trips were to the doctor or medical clinics. Because of the paralysis, Blaine was incontinent. We had to learn all the tricks of the incontinence trade – catheters, plastic gloves, etc. At clinics his urine was sampled, his shunt was evaluated, and adjustments were made to his wheelchair. He had scoliosis, and therefore the curvature of his spine was measured and recorded at each visit.

Soon, for many reasons, not all related to the nurturing of Blaine, his parents divorced. Dad asked for half-time custody and the court agreed that this arrangement was in Blaine’s best interest. From age 11-21, Blaine spent a week with his mom, the next week with his dad.

Blaine faced several major surgeries the first few years after the divorce. He was scheduled for one very difficult, dangerous, and somewhat controversial surgery to the region of his neck where the cerebellum had been pulled into the narrow opening. The cerebellum plays an important role in motor control, such as swallowing and other bodily functions that we so often take for granted. It also plays in role in some cognitive functions such as attention and language. Again I hit the books trying to learn as much as I could about this condition called Arnold Chiari. Although Blaine clearly had symptoms of the condition, his symptoms in my opinion were not worsening. I asked to take Blaine to the Children’s Hospital where doctors at heir clinic were experts in this condition. After an all-day thorough examination by several doctors at the clinic, they agreed that the surgery was not needed at this time. His new neurosurgeon at OHSU conceded. Blaine never had the surgery.

His most intense surgery was the implant of a rod in his back to control scoliosis which if unimpeded could have resulted in loss of internal organ function, as his body began to curl in on itself and compress the organs. The surgery was successful, but the procedure is horrendous. First Blaine was sliced open in the front, practically from the top of his chest to the bottom of his abdomen, to connect wires to his vertebrae to hold the rod in place. Then he was sewn up, flipped over, and sliced open the same length in the back, to insert the rod and secure it with the wires. It was a long surgery with much blood loss on a frail young boy.

Blaine recuperated in the hospital and at home for months. In the hospital, on one of the alternate days under my care, I noticed that he was exceptionally quiet. I asked him to describe how he feels. He said, “I want to die.”

Blaine was paralyzed from the mid-chest down. Everyone including medical staff assumed that he could not feel pain in much of the surgical area. The nervous system is very complex however. I had been reading about the sensation of pain by patients like Blaine through the autonomic nervous system – the involuntary nervous system that also controls our fight or flight reactions. I reasoned that Blaine was taking flight and needed more pain medication. After receiving the medication, Blaine perked up and became his humorous self again.

Blaine had many problems in later years, mostly with bed sores that could be attributed substantially to his weight gain that began around 2005. But he persevered until Monday December 29, 2014, halfway to his 36th birthday, when an infection due to a punctured bowel resulted in his death on December 31 2014.
 

Some Family Stories

I remarried in September of 1992. Blaine’s social life with peers was limited beforehand to the chess club activities that I managed in his middle and high schools. Now he had two stepbrothers, one a year older, and one a year younger. Although Blaine could not participate in much of their lives, the three were often gathered at the tv in Blaine’s room, playing games and watching sports. Then in 1993 a half-brother was born, and the baby brother provided plenty of entertainment for all of us, especially around birthdays and Christmas.

Life also became very hectic. My wife also had half-time custody of her two boys. We did manage to schedule our parenting weeks to coincide, thanks entirely to the flexibility of her ex-husband. On our parenting weeks, we were now chauffeuring four kids, including the baby to day care, as we both worked, and attended school as well.

All in all, it was a great experience for Blaine. He had additional social opportunities; he had a wonderful baby brother who adored him always.

A Blaine Memoir – Part 1 by his Dad, Michael Newsom

January 7, 2015

Blaine was a beautiful baby. As I sat on a stool next to his incubator at OHSU, with my hand thrust through the small opening, my pinkie finger in the grip of Blaine’s hand, I still could not believe the events of the past day – the unanticipated Caesarian birth, the ambulance ride from St. Vincent hospital to OHSU, a ride into the world of spina bifida, unknown to his well educated but nonetheless quite ignorant parents.

As I waited for the neurosurgeons I anxiously read about spina bifida in medical books available at the critical care facility. One text quoted a British neurosurgeon’s long-term study of the treatment of spina bifida. He had a systematic evaluation guide for neurosurgeons. I compared Blaine’s medical chart to the guide; the recommendation was not to treat a patient with his profile, in other words, passive euthanasia.

I was in a state of lonely panic. His mother’s transport to OHSU was delayed until she was able to travel. Finally the neurosurgeon arrived. His name was Tony Gallo. We would learn later that he was a renowned pediatric neurosurgeon and teacher. In tow was a cadre of his student interns. I listened to his academic lecture on Blaine’s condition. When I found a time to interject, I told him of my reading and asked him what he recommended. Surprised by my question, he turned directly to me and said, “Of course we are going to treat; we are scheduling his surgery immediately to implant a tube to drain the fluid from his brain.” That was it – said and done. He briskly walked off with his interns to the next case.

It is a great irony that Blaine’s irreligious parents by a quirk of fate had a Catholic neurosurgeon at OHSU as Blaine’s professional servant, for that is how Tony Gallo viewed himself, as a servant of god as well as, and almost secondarily, a neurosurgeon. Blaine would be treated under Dr. Gallo’s care; elsewhere Blaine may have had a very different course of treatment, possibly euthanasia.

Hydrocephalous now is treated in the womb if discovered. Untreated before birth, the child almost always experiences some level of brain impairment. Blaine’s impairment level would only be revealed through time. Over and over however we were warned not to expect much. He may be trainable but probably not educable was the usual advice.

Blaine seemed alert. He laughed like any other baby when we played goo goo gaa gaa games. But intelligence is not measured in laughs. Even as adults, measures of intelligence are impaired by our biases and our ignorance of how the brain works.

As parents we were compelled to treat him normally. We read books, bought the normal assortment of play toys, and hoped. We pasted a map of the world on his wall above his diaper-changing table. We would point to the countries on the map and say their names. I was learning unfamiliar geography. I had regularly pointed and named the countries of South America, the continent within his reach, immediately above the changing table. One day I asked, where is Uruguay? Blaine reached out and touched the map where the name Uruguay was boldly printed. Where is Brazil? He pointed to Brazil. He knew every country in South America. I practically screamed with joy. Blaine laughed with surprise at my shriek, a typical Blaine laugh, deep from the chest. He was most definitely educable!!

Blaine’s mom taught him chess moves. Soon I was playing and learning chess with him. We bought chess books. Blaine memorized game after game. Soon he could beat his parents – easily. We obtained lessons. We learned of the OMSI state chess tournaments. We entered Blaine in the elementary division.
Then we were advised that Blaine needed a surgery. His surgery was successful but meanwhile he missed the deadline for his regional qualifying chess tournament. We pleaded with the OMSI tournament director to let Blaine compete in another qualifying tournament. Reluctantly he agreed but conditionally – to be fair to the other participants Blaine was required to win all his games, and win the tournament with the highest point total, in order to qualify for the final tournament. Blaine was still recovering. He would throw up during and after every game, from nerves, but also as a symptom of digestive problems he would have his entire life. Nonetheless he won all five games and the tournament; he was headed to the state tournament. It was the start of a life-time obsession with chess. I would ‘coach’ his middle school and high school chess teams. Blaine would win the high school 1st chair title his senior year.

Blaine loved reading about dinosaurs like most kids. We took him to Dinosaur National Monument for his sixth birthday. He loved fishing too.