The First Doc Appointment with Baba: The Death Sentence

(November 2016) Some Stanford Hospital - “You have about 3 to 5 years, at best” said the emotionless doctor to Baba. This was the day where I saw my dad fight for his life.

In an artificially lit room at the Stanford Neuro Hospital, sat the Doctor, father, Uncle Mustafa, and myself. The news hit my heart like a train. At first, I didn’t know how to make sense of it all. I was too busy trying to slyly record the session with my phone so I could WhatsApp it to mother. She was all the way in Sudan and needed to be present in the appointment. In my mind however, my body was slowly shutting down. The doctor, who will be named Doctor Dummy (just because), was a middle-aged, stern-faced, somewhat accomplished Neuro Specialist Doctor that is adequately experienced with motor neuron diseases such as Multiple Sclerosis, Motor Neuron Neuropathy, Amyotrophic Lateral Sclerosis, and so forth. 

And then this feeling of anticipatory grief crept into my thoughts. This is when I truly felt the “clock ticking”.

The issue was that my father refused to accept Doctor Dummy’s prognosis because he had “kids to look after, a wife, a college tuition to fund”. My father clenched his jaw, as he usually does when disgruntled, and continue to debunk the Doctor Dummy’s prognosis. It was heartbreaking to watch Baba go through his interrogation about his own life. The pain of realizing, at such a young age that your dad’s mortality is finite is just so devastating. Glancing over my shoulder, Uncle Mustafa was speechless and stoned-faced. He wasn’t the one to show weakness through emotions. And then this feeling of anticipatory grief crept into my thoughts. This is when I truly felt the “clock ticking”.

"Mohamed. This is the reality. You need to accept it" stated Doctor Dummy simply but blunt.

“How experienced are you with ALS?...How many patients have you had?...Is there a cure?...How sure are you about this?”, the questions kept pouring in like the waterfall of tears I wept internally. Baba interrogated Doctor Dummy. 

“Mohamed. This is the reality. You need to accept it, Doctor Dummy stated simply but blunt. During the moment, we all resented him. But after 3 years, looking in hindsight, I am able to comprehend how painful that conversation must have been for him. Looking into the Baba’s fearful eyes and telling him he won’t be able to live long enough to see his grandchildren. 

After 30 minutes of them arguing, Baba and Doctor Dummy came to a consensus that “more data is needed in order to determine life expectancy”.  Probably not the happiest note to end a doctor appointment but “promising”. 

The car ride back to Uncle Mustafa’s home in Pleasanton (California)  was dead silent. But, for some reason, I could hear my father’s thoughts flooding the car:

How will I provide for my family when I lose my ability to speak or move? 

How can I live with this? 

How long do I have? 

Will I be able to make it till Hatim’s graduation? 

Will I ever see my grandkids? 

Who will take care of mama when I’m gone? 

What about Ahmad’s college tuition?

How will I live?

The worst part about ALS is that there is absolutely no cure. No cure. No antidote of any sort. No hope. A simple death sentence.

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