[LifeStyle] An Egyptian academic writes down his story with a rare disease that changed his life

[-Ace Ϟ ™]

In life there are many blessings that its owners are familiar with, and they do not realize their value until they are absent, so they feel the severity of the bereavement; Simple movements, smiling, talking, breathing, even pointing; All of them are innumerable blessings, and they remain normal as long as they remain, and if they are absent, life will be absent with them even if we remain alive.

 

This is a summary of what happened with Tamer El-Gendy, a professor at the American University in Cairo, who spent his time in research and lecture halls, and in his spare time between his family and his hobbies in travel and study; Life was normal for an ordinary man, but what happened next was not normal at all.

Suddenly, everything changed, and a new chapter began in the life of Tamer El-Gendy, 41, who left the academic capacity as an assistant professor at the College of Political Science at Qatar University, and became a “case” of a rare case of amyotrophic lateral sclerosis (ALS), an advanced disease. In the nervous system and affects nerve cells in the brain and spinal cord, causing loss of muscle movement control. It is the "deadly disease", so the doctors call it, because there is no way to cure it or know its causes, and it kills all signs of life in the body; Like the ability to move, speak, eat, and breathe, everything comes to an end gradually.

One day in 2017, the university professor suddenly discovered his illness, and after a long period of examinations, all concluded that he had no hope, and a new journey began for Tamer as a human being and not as a case, to write down his daily thoughts and human reflections on his Facebook page under the title "Thoughts.. My ALS that changed my life."

The discovery of the disease and the beginning of the journey
Not for the sake of the disease, nor for its consequences, Al Jazeera Net interviewed Tamer Al-Jundi after a journey of treatment that has been going on for 5 years, which the patient man went through with a different experience. The dialogue was coordinated by a friend who lives like the shadow of his friend, and Tamer replaced his tongue and hands with a tablet that works with eye movement, and we in Al Jazeera Net replaced the normal dialogue contexts, so that this talk became unusual about an experience worth telling.

About the distinguishing moments that separated his life and university work and being the head of a model family, and the years that followed 2017; Tamer al-Jundi says, "In the beginning, I was waiting for death, as it was the end that I expected and was waiting for quickly to end my journey with pain, but with time the situation stabilized, then my experience with different treatments began, and with it it was a journey of ups and downs that still has a rest until now."

 

 

In early 2019, Tamer was on a date with a new hope, as he was approved to participate in the first clinical trial of stem cell therapy at the University of California, and his health began to actually stabilize, but soon everything ended after Covid-19 took control of the world, And the dream ended in complete closure. With the beginning of 2022, the indicators of the condition began to be delayed after a long stay in the hospital, which resulted in a complete lack of speech, and reliance on artificial respirators and life support.”

Dr. Tamer El-Gendy has a rare case of amyotrophic lateral sclerosis
Dr. Tamer El-Gendy (center) and preacher Mustafa Hosni (Al-Jazeera)
Toby is my travel companion and savior from depression
All doors were closed in the soldier's face except for one, and God's mercy was in the gift of his friends, who gathered around their friend with new hope, and he was able to exploit the last point of light in his eyes; “Family friends gave me a tablet that tracks eye movement, called TOBII, so I was once again able to communicate with them relatively easily, and through it I was able to follow the world around me, and then write my thoughts and meditations.”

The door that opened through "Toby" was not only hope for Tamer, but it became a door wide open for everyone who wants to see a ray of light in the middle of a dark tunnel. And his private blog, in which he writes his thoughts and messages to his family, children and friends, became an outlet for many, until the number of his followers reached 12 thousand followers, whom he had never known, and his experience became inspiring to many.

 

 

 

Wife and friends.. Treasure of the journey
“Treasure on the journey,” this saying applies to a large extent to the course of Tamer’s experience with ALS, and represents the treasure in his friends, ten years of age, which began in college years, and they became side by side; Friends individually and then with their families.

Tamer tells Al Jazeera Net, "I am lucky that my friends have supported me since the beginning of my illness, and their families support my family, and their children for my children. I can't imagine what it would be like without them, without their presence, I wouldn't sit down now to write my meditations online, or even conduct this dialogue."

Friends were not only the treasure of the trip, the wife was also the biggest treasure, "friend" is not an adjective for her but her real name, a name that she had a share of. Fortunately for her husband, that share was enormous, so she believed throughout her life with him, and bore the burdens of ordinary life before and after his illness.

Tamer El Gendy family
The family of Dr. Tamer El-Gendy (Al-Jazeera)
He added, "I became another person, and I bore the consequences of my illness in which I did not want anyone else to see me, and she was bearing my emotions, my excessive nervousness, and my exaggerated sadness, all while she alone bears the responsibility for our children with the presence of a fading father."

The soldier's presence was a hope for ALS patients, and he was supportive of many of them, who contacted him on his Facebook page. Toby became his tablet companion for the long hours Tamer spent in bed.

The soldier continued, "It is amazing that I can communicate with the world in that state, and feel that I am still able to give and inspire others, and that there is someone on the other side of the world waiting for me to read what I write today, and ask about me and reassure me if I am absent. All these feelings I wouldn't have experienced it without the presence of "Toby" and my friends.This was all beyond any imagination that I could dream of one day, even when I was in full force, I had nothing on my mind but my ambition for my profession as a university professor, but God opened a door for me I was so desperate I guess it won't open.

LINK