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Anticipatory Grief: Let's Talk About It

Updated: Jan 18, 2020

Father in Germany (2017)

(November 15, 2019 ) At a friend's apartment in San Francisco - Death can be lurking around the corner or a marathon away. Either way, I will never know when it will arrive. All I know is that I'm at death's doorstep.

It took me 2 years to accept Baba’s fate. After Doctor Dummy’s appointment, I pledged to myself to debunk his prognosis. It wasn’t fair. How could anyone tell me that my dad has 3 to 5 years, “at best.” As much as I really hated Doctor Dummy at that moment, and I seldom use the word “hate,” looking in hindsight, he was right all along. As he predicted, slowly, my dad lost his mobility to walk after a few months from the initial appointment. He reluctantly had to get a walking cane.

Later on it reached his legs. That’s when things got complicated.

The body’s decay crept in. First with eating. Baba was only able to eat with a spoon by holding it with his full hand. He needed someone to cut up his food as his left hand became the first victim of the disease. Later on it reached his legs. That’s when things got complicated. Especially when it came to the bathroom. Mama, the saint she naturally is, did not hesitate to prop my dad during his bathroom runs. However, she could only go so far with supporting father physically. This is when the man behind the wheelchair, Hisham, stepped up.

Hisham was our first and only driver when we moved to Sudan. In an undeveloped country like Sudan, the service industry is predominantly the main sector. To have a house maid and a driver is not a sign of wealth or elitism, as most westerners would believe. In fact, it is a common and affordable choice in Africa and the Middle East. Actually, it is practically common throughout eastern Asia.

Hisham is a different type of driver because we accepted him as family. For me, he was never my driver. He was my best friend. Yes, my parents paid him a salary to do a service but he loved what he did. You can just tell from his work ethic. Everyday he comes with a hard-working-and-fun attitude. Although he is paid quite handsomely in comparison to other drivers in Sudan, he has the thoughtfulness of a caregiver and the will of a warrior. He rarely admits hardship. He rarely accepts any failure. He is ultimately our savior. And he knows it.

As my dad’s body decayed, my family’s roles grew. More was demanded from us. Everyday we saw a subtle increase in life’s difficulty.

One thing I learned from Hisham over the years is patience. Patience is key with dealing with the disease and it’s treacherous journey. Patience, in terms of ALS, is the ability to accept every new challenge with grace without a nibble of angst. To find the light at the end of every dark thought you might think about your loved one. It is something that can not be learned over night but is more of a muscle that is trained everyday. Baba has mastered it by having the same level of mindfulness and spirit throughout his journey.

Patience is something I sincerely struggle with. Maybe I’m being too hard on myself but the challenges keep on coming. Like a waterfall, the new obstacles flood in every day effortlessly. I would get frustrated when my father would ask me to do a series of small tasks such as moving his head left, a tad right, adjust his shirt, wipe his mouth, put eye drops on, stretch his legs, help him pee, fix the pillow, move his head right. The tasks are periodic with a frequency of an hour and a half. I can’t complain because it is not his fault at all. So I would lose my patience and sigh. Not to mention my “cranky attitude” as Baba would say time to time (he swears this is true). In Sudanese culture, which is an Afro-Arab mixture, to sigh to your parents is rude and insubordinate because the thought-process is that you should always respect and appreciate the two very people who sacrificed so much for your upbringing. So the very least the children can do is listen to them. Definitely don’t see this type of behavior in any of my American friends’ households!

As my dad’s body decayed, my family’s roles grew. More was demanded from us. Everyday we saw a subtle increase in life’s difficulty. The bathroom situation was starting to strain my mom after several months. My dad could not stand by himself while he peed. This is where I came in and would assist my dad. You don’t understand how many times my dad pees in a day…

But still the #2 was handled by the backbone herself, Mama. Until we started to look for a caregiver, initially, Hisham was our interim caregiver because my mom was able to do some of the errands with the car while Hisham would look after Baba. Hisham gradually became the all-star caregiver who would train all the new caregivers. Hisham was quite simply the Lebron James of caregivers. He taught us to appreciate our small successes, slam dunks, when we get Baba’s head placement on his pillow right the first time. To us, one-touch successful execution is equivalent to a half-way court shot. Our reward was my dad’s victorious, silent smile.

His life took a flight to Doomsville and we don’t know when it will arrive.

Since his eyes are able to still move, he communicates through his eye-recognition monitor that uses his eyes to type on the screen. Now my dad’s voice has changed into a robotic British accent. Which is to some extent pretty cool. I can’t remember the last time I heard my father speak. There is a voice recording message saved on my phone from a couple years back. It is a minute long and my dad talks about what he’s proud about me and also what I should strive to improve. With Baba, there is no free compliment!

Despite being busy with new challenges that arose daily, it also made it difficult to not accept the inevitable end. The more Baba would start to cry more frequently and be naturally vulnerable with his feelings, the more we felt his departure. His life took a flight to Doomsville and we don’t know when it will arrive.

Then again, I thought about how it would feel if my father passed away all of a sudden without a “heads up from ALS”. I would honestly prefer the way it is now. Yes, my whole family is bleeding from the pain but at least he is fighting through it. We can watch him get through his daily challenges. If I lost my father all of a sudden, I wouldn’t be prepared to handle his sudden loss. A death’s heartache is an arrow to the heart. You can feel it bleed. The sinking feeling of your heart lingers as long as it wants. Now, imagine feeling that arrow slowly stop a nanometer before your heart. Light pressing into the heart where it creates a growing sense of tension. You can feel the arrow pressing gently to your heart where it starts to cut. Everyday you think the arrow is going to finally take it’s shot. But it doesn’t. It just lingers.

That is anticipatory grief.


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