My biggest pride and joy is my family. I have a lovely wife, a son and a daughter. I enjoy listening to music, playing tennis with friends, and gardening. I have a bachelor’s degree in Business Administration. I have worked in Information Technology, most recently as a contractor for HP.
ALS is a very rare disease. My first reaction on learning about this was complete and utter shock. As little as I knew about it initially, I could not bring myself to believe that I really had this. This was made even more difficult to accept because my initial diagnosis was not definitive, and it took months for my neurologist to finally tell us that I had ALS. It was difficult to share this news with family because of the realization of how this would immediately change our lives and our perspectives. I had to first accept it and I am still in the process of coming to terms with it. This was made so much worse by being in the middle of a pandemic. I could not have friends and family over to discuss, plan or even grieve.
All along, my biggest source of strength has been my wife, Farah. We have been married for many years now and she has been the one who handles my medical needs. But as if the diagnosis of ALS was not bad enough, in September 2020, my wife had a massive stroke that left her minimally conscious and in the ICU for a month. When she awoke, she was moved to a rehab facility.
It has been challenging dealing with both my mother’s stroke and my stepfather’s ALS diagnosis, as well as guiding my sister through high school. I am very worried about the future in terms of income, debt, treatment, care, support, etc. Simultaneously, it has been particularly challenging for me to let go of my personal dreams, ambitions, and plans. I stopped pursuing my graduate degree, gave up my apartment, relationships, and hobbies.
Thankfully, my family community is helping me with everything and providing guidance. I am not sure how sustainable this is, but any community support helps tremendously as I am young and naïve when it comes to dealing with this situation.
My sister is too young to assist with our parents’ care and I cannot manage it alone as I cannot afford to lose my job. I am an HSE Engineer at a chemical plant in Houston, Texas. My salary is the only one we are depending on for paying bills. I do not have the time or energy to provide support for both my stepfather and my mother. Our PALS grant for caregiving has provided the necessary care so that I can try to bring happiness back to my family life.