Reflection 21 – My New Friend That Transformed My Life

Sometime early 2020. I have recently finished my stem cell clinical trial at UCI, and was looking forward for another promising trial that would take place end of March. However, COVID hit and lockdowns began to be implemented everywhere leading to the postponement of the trial indefinitely. Meanwhile, my wife begins to persuade me to try out what is known as an eye-tracking device. Basically, it’s a device that enables ALS patients and other similar diseases to use the movement of the eyes to navigate their way on the device whether it is typing or surfing the net. In addition, it has a speaking option that can say out loud what is being typed on the screen. It is definitely a piece of art to say the least! At that time, we came to know of certain NGOs in the US that provide older versions of Tobii (name of the device) for ALS patients for free. Typically, new ones cost a little less than 20k USD. To be frank, I wasn’t really that enthusiastic about it as I would always try to stay away from things that made me feel ALS is taking over. Anyhow, my wife was adamant about it (knowing it would be a MUST one day!). A friendly Latino guy along with his wife pay us a visit and give us an informative tutorial about how the device works and provides us with a device to use. However, as long as I was easily talking and my condition was relatively stable, I never really saw an urge to use it and was very reluctant to use it as long as I had my wife and kids helping out with my regular laptop. In other words, using Tobii for me was to admit I’m deteriorating and that sooner or later my speech will cease to exist! That feeling killed me.
Now, fast forward to May 2022. I am lying in bed in intensive care after my health deteriorated significantly. Now, I have a tracheostomy attached to my neck and have fully lost my speech; something I tried to rule out of my mind for so long. Now, what shall I do? I can’t even use sign language since I can’t move my hands. The only way of communication is lip reading and I can’t tell you how frustrating that is when those dealing with you can‘t make any sense of what you are saying! The other possible way is that people ask me yes or no questions, and then I would nod my head accordingly. My cousin also came up with an ingenious way to deal with the situation. Someone would open up the keyboard on the phone, and then we go letter by letter until a single word is formed. Of course, you can imagine how slow this process was. Anyhow, I manage to finish that intense period and I return back home. Soon after my return, I am able to get hold of a Tobii and then life would change dramatically.
Even before I lost full speech, my talking was very limited. It was more of words rather than sentences, and only a handful of people were able to make sense of what I am saying. So in one way or another, I was pretty silent for the last year more or less. But now finally, I can talk via Tobii to my wife and let her now my needs and wants. I am able to explain what kind of pain I am going through if any and so she can act accordingly. My kids finally can have a decent conversation with their dad without having to guess what I‘m saying. Other family members are now able to communicate with me via Whatsapp; something they haven’t done in years. My friends of course are now beyond happy as they feel they have regained a link with me in one way or another. And then came this exercise of writing my reflections that opened for me a totally new horizon that I have never thought of. Rather than being silent at home with a couple of people around me, I can now share my thoughts and feelings with thousands of people. To be frank, it feels a bit awkward for me to share pretty intimate details of my life as this is totally contrary to my personality that those around me are familiar with. I would rate myself more leaning towards the introvert scale. However, sitting behind a screen makes people more willing to share stuff they would normally not.
As I look back to the last couple of years, two events stand out for me. First, in the last two years I have been an addict of listening to Quranic tafseer (explanation) by Nouman Ali Khan ( Bayyinah ) As I used to listen to him, I had mixed feelings. On the one hand, I was overjoyed comprehending all this new information; and on the other hand bit sad that I am not able to convey what I am learning to others not knowing the day will come where I get to express my thoughts to everyone being heavily influenced by him. The second thing is that I used to be pretty depressed that one day I won’t be able to work anymore in academia and that my relationships with my students would be disrupted. However, it turned out what I feared would be the end of communication with my students and the outside world in general was the BEGINNING of a new episode in my life where I can fully communicate with everyone! And this is all due to Allah‘s mercy of providing me with this new friend!