Reflection 10 – The Unbearable Burden of Being Attentive to an ALS Patient: The Role of a Sincere

Probably this will be the most difficult reflection to pull together. To put it bluntly, I’m not used to praising my wife nor expressing my emotions towards her freely in public (like most Arab men!). But ALS has helped me open up and made it easier to convey my feelings (in writing at least) overcoming some of my shyness. So where shall I begin? September 2017. My prospects look amazing. I just joined AUC The American University in Cairo (AUC) and I’m happy to be back in Egypt close to my parents and friends. On the professional side, I‘m doing quite good with recent publications and a decent job offer. My kids are set in their school of choice, and we are getting used to relocating back in Egypt after living seven years abroad. Practically, everything looks fine except for the continuous weakness in my right arm that began to encroach on my left arm. Up until now, the only explanation I got was lack of vitamin B. Despite being consistent with my medication, no signs of improvement are seen. Now, the story becomes gloomier. After seeing a couple of additional neurologists, they all agree that the issue is not confined to my hands but to my entire central nervous system suggesting ALS as the main possible explanation. At that time, I had no idea what ALS is; but my wife did. A year earlier, she had lost her uncle due to ALS. This meant that she had to bear this psychological shock a little bit earlier than myself. As we began reading more about it, the following weeks became devastating. We would cry almost on a daily level together not knowing what to do except praying. We had to conceal this from our kids hoping they don’t ask us what’s going on. Moreover, we were staying at my parents house and my initial strategy was to provide them with minimal details in order to keep their sanity in place. And so I did for the following three years. Now, let’s fast forward to 2019. May 2019. This is my third year in my ALS journey. My wife and myself just arrived in Irvine to begin an almost one-year long clinical trial at UCI (bear in mind, I was born in Irvine, did my PhD at UCI, and now being treated at UCI hospital facility). My condition is as follows: I can still walk with the assistance of a walker, I can still use my hands while eating with some external help, but all of my hygiene stuff requires my wife’s intervention. And remember ALS is progressive! This means that each day passes by, part of me fades away while the duties of my wife are magnified. Let me take you on a tour for some of those: Bathrooms: For almost the next a year and half, not once (with very few exceptions) have I used the bathroom without her help. And it’s not the physical pain alone of undressing, cleaning, and dressing up again, but rather an enormous time restriction on her schedule. In other words, we couldn’t stay away from each other! With the continuous lack of movement, I became more prone to constipation. These episodes lasted for months and would last in many times from three to four hours using multiple enemas and running back and forth between the bathroom and bedroom. They were not FUN at all (s*** in its literal sense). Waking up and Sleeping: Not being able to do them on my own, our schedules had to be very alike. I wasn‘t free to get up and sleep whenever I wanted nor was she. This brought us just a bit too close to close to each other leading to frequent tensions. Unlike other married couples where a partner can have a little break; she didn’t! Remember, I‘m still lying in bed waiting to stand up. Of course this whole activity required decent back muscles, (I think if my wife were to sue me, I would owe her a back surgery along with physical therapy sessions ). Feeding: She would feed me first! I always appreciated that she would always concern herself with my feeding first. The whole process must have been a hassle that would stay with us for the time to come. Just imagine every time you eat or drink, there is someone else next to you waiting for their share. I have to admit she always did it soft-heartedly with no grudges. Keep in mind that everything mentioned till now was not a one-time thing but rather repeated every day. That being said, it wasn‘t never the physical pain that got her (although it did get her of course many times), but the psychological and emotional toll that crawled into her life to stay! First, she had to accommodate me all along with all of my sudden nasty mood swings that more than often led me to desperate moments not wanting to live more. She had to comfort me and stay strong as she saw her husband’s physical status decaying in front of her with nothing to do from her side other than praying and displaying resilience in front of family and friends. Other than that, she couldn‘t forget her role as a mother that necessarily took a back seat. Besides the daily mundane stuff mothers do with their kids, she needed to keep sure that the kids’ psyche and emotional stability was in place. My parents also needed to be comforted as they grappled with new symptoms evident in their son. And above all of this of course, she had to collect herself and continue on with her life such as completing her MA in Education at AUC in the midst of all of this! This is just a sample of what she would go through in the last three years. But why am I bothering you with all of these details? I‘m not trying to showcase the champion in my wife nor do I aim for people to sympathize with her. The real issue is as follows: despite the clear and very vivid responsibilities she had to carry on her shoulders, I have to sadly admit that I simply couldn’t see it. ALS was too big a deal for me to see beyond. My area of concern was limited to my body. I always thought that whatever she was going through, I must have been going through much more. I was WRONG! May Allah forgive my mistakes towards my wife along with any belittling of her efforts, increase her in steadfastness and keep her sanity intact