Element of Speech, Bethany Dudek

 

Day 1, February 1999

First observation of symptoms. Subject is a Caucasian male, 3 years old as of today (February 20th), outwardly healthy, one younger brother. Plays relatively well with other children, no observable developmental disabilities. No general symptoms that can be easily correlated to any standard physical disorder. However, subject prefers not to run; rather, he gallops, his right foot staying in front of his left. Subject is capable of running, and it appears to be pure preference that he chooses to substitute this gallop, which he calls “easier.” This is occasionally an early sign of muscular abnormality, but it is as of now the only symptom Cavan is experiencing. Will continue observation.

 

Day 187, August 1999

Subject is friends with several other boys around his age, and has demonstrated several things in his interactions with them. First, he is naturally social, and demonstrates normal behavior with his friends. Second, he is, in fact, slower and weaker physically than his peers, which goes undetected unless there is some direct comparison, such as a race or play-fight. Third, he gravitates more toward drawing and electronic games over physical play, and when alone prefers to read, as there are few electronic games in the house. Additionally, he apparently taught himself to read with a set of beginner’s simple reading books, asking his parents’ help with letters he didn’t know, which suggests the absence of any learning disabilities. Will continue observation with a focus on the physical.

 

Day 610, October 2000

Subject was injured today. He fell about ten feet from the higher branches of a tree he was climbing with a friend. His face impacted the seat of his tricycle, which happened to be underneath him at the time. Subject appears mostly uninjured, though his soft facial tissue is damaged, and there is serious bruising. If his face had impacted a few centimeters in any other direction, it is likely his injuries would be far more severe. Will continue observation.

 

Day 885, September 2001

Subject began elementary school today. His reading, and thus rudimentary knowledge base, are at about a third-grade level, and he finds school more boring than interesting. He brings books to class with him, and reads or plays his Game Boy during recess most of the time, preferring still to avoid physical play. He still participates occasionally, but is clearly, if slightly, less physically capable than his peers; he is slower, less strong physically, and becomes tired faster. Neither of his two brothers (one 1 year old, one 3 years old) show symptoms of any kind. Signs point to some type of genetic muscular dystrophy or defect, but as of yet we have no solid diagnosis. His family plans to move during the Christmas break. Will continue observation.

 

Day 1,061, February 2002

Subject has taken to his new school environment with little trouble, and is interacting with it similarly to his previous one. None of the doctors he has been taken to in Georgia so far have had any better success diagnosing him than the ones in New Jersey. In fact, his school put him through a short occupational therapy session, one of the school’s counselors having training in the area. The counselor had no new insight into his physical condition. The family has changed focus from general practitioners to physical therapists and neurologists. Cavan’s parents are frustrated and worried by the lack of a diagnosis. Will continue observation.

 

Day 2397, July 2005

Cavan was diagnosed today. Apparently his symptoms are consistent with a form of degenerative muscular dystrophy called Spinal Muscular Atrophy, also called autosomal recessive proximal spinal muscular atrophy and 5q spinal muscular atrophy. It is a relatively common form of muscular dystrophy which effects approximately one in 10,000 babies born every year. Most of these babies die in infancy, as the most common type of SMA, Type One, is fatal within 18 months of birth. The muscles in the lungs are too weak to properly respirate, and the child suffocates. SMA Type Two is less severe, leaving its victims unable to walk unassisted from birth, and eventually killing them by or before the age of 25. SMA Type Three, Cavan’s SMA, does not typically result in a reduced life expectancy, and will not kill him. 

However.

Cavan will slowly lose muscle function until he can no longer walk. He will continue to lose muscle function until he can no longer stand. Eventually he will lose the strength required to live independently. This decline can be slowed significantly by physical therapy, but not stopped. 

He will lose his independence. 

And he doesn’t appear to be very bothered by it.

Will continue to observe Cavan. 

 

Day 3,234, February 2008

Although he is able to walk and run without difficulty, Cavan has been participating still less in physical play, and shows an increased interest in reading and videogames. Additionally, he has been displaying an increasing amount of anxiety over the past year. Middle school has been a difficult adjustment, as despite his natural intelligence, he has displayed an unwillingness to do homework, complete class projects on time, and adhere to the instructions on his assignments. Since his family adopted a dog, the problem has become exacerbated, and he has shown an inordinate amount of worry over the dog’s health and safety. Will continue to observe his mental as well as physical condition.

 

Day 3,512, November 2008

Three days ago, Cavan refused to participate in math class, went to see his school counselor, and insisted that his mother come and take him home. Today, he went to a psychiatrist, who diagnosed him with generalized anxiety disorder. She prescribed him a 20mg daily dose of Fluoxetine (the active ingredient in Prozac). Will continue to hope for a positive change.

 

Day 4139, July 2010

Cavan has been going to a small private school for the past year and a half, and will be going back in two weeks to begin his first year of high school there. His anxiety disorder was significantly eased by the changed environment of his new school, likely due to its extremely reduced size (68 students, 15 teachers) and more relaxed academic environment. Noticeable symptoms of Cavan’s SMA have emerged, primarily as a substantial decrease in stamina. He has become noticeably overweight as a result of an unchanged diet and less physical activity, which tires him further. Also notable in terms of his independent function is his difficulty standing up after a fall. He now requires a chair to pull himself into, from which he can then stand. To address this and his stamina issue, Cavan will be using a walker at school from now on. He seems content with this arrangement, noting happily that as his walker has a basket attached, he can use it to hold his books. He has also begun taking acting classes. Will continue to observe his progression.

 

Day 4,204, October 2010

Cavan fell in an elevator today. He was unable to use his walker to stand up, due to the small space. He could not reach any of the buttons to open the doors and crawl to a better-suited area. Luckily, he could reach the emergency phone button near the floor of the elevator. He called for help, and was only trapped for 30 minutes while his predicament was communicated to the nearest fire department, who retrieved him. He jokes that the response was “a pretty incredible overreaction,” as he “just needed someone to press the ‘open door’ button. Like, what if there was an actual emergency? Half the fire department would’ve been off opening a working elevator.” He seems more or less unaffected by his misadventure. Will continue to dread an “actual emergency.”

 

Day 4,521, August 2011

Cavan has transferred back to a public high school for 10th grade. He is excited to be back in the same school as his elementary and middle school friends, and believes he is more mature and capable of handling the stricter environment. Cavan’s SMA means that a large school will be unfeasible to navigate on foot, even with the walker, and he will be using a motorized mobility scooter to get from class to class from now on. He continues to avoid physical activity, and has become more overweight, which is only exacerbating his condition. He will likely lose more function before he graduates. Will continue to monitor his physical degeneration.

Day 4,723, March 2012

Cavan has not had any further trouble with school. His teachers mostly like him, but complain that he does not apply himself, and he gets average grades. His social life is robust. He has continued to act, and starred as Ebenezer Scrooge in his school’s rendition of A Christmas Carol. He used a cane for the play, as his walker would not fit the time period in which it takes place. Cavan’s SMA has worsened considerably. Cavan is no longer capable of standing up from most chairs by himself. He uses a powered wheelchair at school capable of elevating to a height from which he is able to stand, and no longer uses regular desks. He has also fallen several times at school, and required help from school staff to get back up. Will continue to hope for the best.

 

Day 6,519, May 2014

Cavan graduated from high school today in a ceremony on his school’s football field. He was irritated by what he viewed as the unnecessary grandiosity of the event, and played the contrarian the entire way through, which deeply annoyed his mother. He received several academic accolades. He even made the principal’s honors list, which shocked both his parents, who’d thought his grades were worse. He rolled his eyes at the valedictorian’s speech, and clapped for the salutatorian’s, which was much less pretentious. The only time Cavan’s SMA interfered with the celebration was when he drove his wheelchair to the stage to be given his diploma. The principal had to come down to him, as there were stairs up to the stage itself. Cavan thought this was hilarious. 

Will continue.

 

About the Author

Cavan Miller · Georgia College

Cavan Miller graduated from Georgia College and State University in 2018 with a BA in Theatre. He was diagnosed with Spinal Muscular Atrophy Type 3 when he was 8 years old. “Medical Observations” first appeared in Peacock’s Feet.

About the Artist

Bethany Dudek · Canisius College

Bethany Dudek, known to most as Beth, is an alumna of Canisius College.