Eric’s Diary IX : I am on death row

“You are on death row” is the statement that was blurted out from a classmate of mine after we had a heated argument. I will not say that I blame him.

However, when people decide to use certain aspects of life that cannot be altered to enable them win an argument then the matter at hand does not seem worth discussing because of the myopic reasoning involved. Of course, I was enraged because I knew I was right and my family history of ALS had nothing to do with the argument.

I stormed out of the class and went into hiding to reflect on my life.

My name is James.  I’m only 16 and I love to play basketball. In fact, I met my good friend Eric on the court so don’t be alarmed to see me writing in his diary. Now, back to the wonderful sport.

I have no idea what keeps my love for the sport alive despite the risks involved. Maybe it is just the thrill of one day becoming a LeBron James. I used to do long-distance running too but I put that on hold so that I could concentrate on my studies alongside being able to play the sport I love.

My father had been diagnosed with ALS five months ago. He had to urgently seek medical attention after a lot of people complained of his nasal tone and his boss once reprimanded him for being too slow with his tools while working as the lead engineer on the Electrify Africa Project.

Then he started to have a ‘slapping’ gait and would involuntarily laugh or cry without provocation.  During one of our family tennis games, he kept missing the ball and fell to the ground five minutes into the game. I was scared that he might have had a heart attack.

He did not want anyone to know what was going on after he was diagnosed so he quit his job to divert attention and went into teaching. But he could not endure standing in a classroom for close to 3 hours because his involuntary motor actions gave him away. He still persevered despite the illness and when anyone asked how he was doing, he would reply: “Never been greater”.

I was really curious about what was going on so I decided to research on the illness. Not like I was eavesdropping but I overheard him discussing it with our family doctor over the phone. That was the first time I had heard the acronym – ALS.

Given that I live in an era where information is easily accessible, I resorted to my best friend (Google) who never disappoints me and sometimes even overwhelms me with information. Here is what I found.

ALS stands for Amyotrophic Lateral Sclerosis (also called Lou Gehrig’s Disease) and it is described as a fatal and degenerative motor neuron disease.

It could be inherited (due to the A4V mutation) with a mean survival of 12 months after onset or it could be sporadic with a mean survival of three years. Patients with the familial form have early onset at ages 46-55 while those with sporadic origin have theirs around age 65. The risk factors for the sporadic form include smoking, sports (mainly boxing and Amerian Football) as well as military service.

Some patients may experience the following symptoms besides the ones that I have already mentioned regarding my father’s case – wrist drops, muscle cramps, muscle wasting, drooling, tripping, stumbling and awkwardness when running.

ALS is very difficult to deal with aside the fact that it is incurable at the moment. A drug called Riluzole only slows the progression of the disease but it does not halt it altogether.

Regardless of these gloomy facts, I draw inspiration from great people like Prof. Stephen Hawkings, a theoretical physicist and cosmologist, who has won many awards including the Albert Einstein Award and Medal alongside being a lecturer despite being struck with this illness.

With this evidence, I can confidently say that having tendencies to develop ALS in the future or battling ALS does not mean that there is nothing to life anymore.

I will not allow the thought or the probability that I may develop it in the future deter me from what I want to achieve. ALS cannot imprison my future so I am definitely not on death row.

By : Naa Adzoa Adeley Boi-Dsane