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Fading Memories
My name is Maryam, and ever since May 23, 2010, my life has changed on earth and been different than it was before. May 23rd in the year 2010 was the grand opening of the NGO I founded, which was for poor Palestinians suffering from Alzheimer's. I created this NGO in memory of my father, who sadly passed away from Alzheimer's disease on January 31st, 2009. This NGO was named the Samir Center for Alzheimer's. In my center for Alzheimer’s, we would provide free hospitality and caregiving for the poor Palestinians who suffer from Alzheimer's. At the grand opening, it was time for me to give a speech on the podium to the 500 people in Ramallah who attended the event. “Dear people of Ramallah,” I said proudly. I had no speech printed out, so I spoke from my heart. “Today is a meaningful day, not only to me, but to you. I am very excited to announce the opening of-” I stopped. I suddenly stopped. I forgot the name of the center I was opening. I just couldn't remember the name of the center. I just stood there trying to remember, so I asked my husband who was standing next to the podium, “What is the name of this,” he looked at me and said in a whisper voice angrily, “Are you joking or what, you are standing in front of 500 people opening a center for Alzheimer's under your father's name, and you make a joke humiliating yourself,” I suddenly just remembered the name, when he said opening a center for Alzheimer's under your father's name, so I went back to the podium to continue my speech.
Ever since that day, I was experiencing more moments where I would forget what I was either talking about or what I was even doing. My child, George, is 13 years old and lives with me, and my husband, Elias, who is 74, also lives with me. Ever since May 23rd, 2010, I have been forgetting a lot of things. Most of the time I would have conversations with my family, and I would forget the memories that were brought up, names that were brought up, and even places that were brought up. I would ask them, “We did that?” “Who is that?” or “Where is that?” I would forget more and more over the months. One morning, Elias came to me while I was drinking coffee on the porch of our house in Ramallah, and he came to me and sat down. He said in a soft voice, “Maryam, you’ve been forgetting a lot lately, and I'm starting to think you need to get tested for Alzheimer's, like what your father had, I think is happening to you.” I paused for a minute thinking what to do, then I replied in a quiet voice “I think It's for the best if I do,”
The next day, I packed my bags and decided to head down to Amman, to undergo different tests, like PET, CT, and MRI to see why I am forgetting a lot. To cross the border, I had to get Wasta to cross
the border on short notice because I only decided the day before. My husband has relations with the people that work at the Hussein Bridge, so it was easy for me to cross it. My husband couldn't follow along because he is very busy at work, and my son has to study for school.
After a long journey over the bridge, it was around 5 pm, and by the time I arrived at my hotel in the four seasons, it was 6 pm, so I decided to stay and rest for my tests the next day. I was nervous because when I was researching Alzheimer's when my father was alive, I read from the “Alzheimer's Society,” that it is quite likely for a child of a dementia patient to develop dementia. Each child has a 1 in 2 chance of inheriting it. I wasn't scared that I would get it, because my biggest fear was that my beloved son, George, could develop it.
In the waiting room of the hospital at 6 am in the morning, I started to think about how my life would be if I got diagnosed with Alzheimer's. I opened my mobile phone to research more about the disease. I was reading about treatments for Alzheimer’s and what Alzheimer's disease - Causes - NHS told me that there is currently no cure for the disease, but there are medicines to help reduce symptoms. I already knew that there is no cure, but I was happy to hear I can reduce my symptoms. I also read from them that to reduce the risk of developing Alzheimer's, you have to stop smoking, keep alcohol to a minimum, eat a healthy, balanced diet, including at least 5 portions of fruit and vegetables every day, exercise for at least 150 minutes every week by doing moderate-intensity aerobic activity (such as cycling or fast walking), or as much as you're able to. So with this information, I can teach George to not do these things just to reduce the risk of Alzheimer's developing. “ Ms. Maryam,” the doctor called in the waiting room. “ I am she,” I replied to her, and she replied, “Follow me, today is going to be a rough day for you, I’m assuming,” she told me, and I replied to her saying, “I know,”
In my different medical exams, all I thought about was one thing. When will I forget what I forget? This thought really scared me because I didn't want to forget my memories, my conversations, and my relationships. The exams took almost 6 hours altogether, with an hour break to grab lunch from the hospital café.
It was around 1 pm, and I was sitting in the same spot in the waiting room I was, but only this time, waiting to find out my results. In a couple of minutes, I would know the news that could change my life forever. A nurse,
the same one who took me to my medical exams in the morning, came up to me with a sad face and said softly, “Ms. Maryam, Dr. Alexandra would like to speak with you about your test results,” Just by her facial expression, I knew what I had to know. I just found out I have Alzheimer’s Disease. I followed the nurse into the doctor's office, and I saw a chair facing her desk, with tissues on a little stand on the right hand of the chair. I went and sat down. She was typing on her laptop. The nurse closed the door, then the doctor stopped typing and looked at me with a sad face, holding a paper with my test results. “Maryam, you have developed Alzheimer's disease,” she said softly. I didn't cry or wasn't even shocked because I already knew what she was going to say. “What are my next steps,” I asked. “Well, there are many symptoms of AD (Alzheimer's disease). The NIA can tell you more about it if you want to read about it. You will experience symptoms like Memory loss disrupts daily life, poor judgment leads to bad decisions, loss of spontaneity and sense of initiative, losing track of dates or knowing the current location. Taking longer to complete normal daily tasks, repeating questions, or forgetting recently learned information. I listed some medication for you to get in the hospital pharmacy that could make these symptoms mild. I am aware that you live in Ramallah, and there is an Alzheimer's center there called The Samir Center for Alzheimer's, which I am aware opened recently. They are supposed to have medication if you ever need some of the ones I listed in the prescription.” She said in a serious tone. I replied, “Thank you so much doctor for the help, and the great recommendation of the center I recently opened-” “It's your center?!” she said in a surprised voice as she cut me off. “It's not my center, because it's for everyone who donated to it, but I founded it in my father's name, Samir, as he died from AD,” I replied explaining to her. “I'm sorry to hear that, Maryam. I left my number at the bottom of the paper if you need anything, Habibti,” she said softly. “Thank you so much,” I said, walking out of the door. And that was just the beginning of the end.
When I got back home to Ramallah, Elias, and George were sitting at the dinner table. It was around 7.30 pm. “Welcome back, mama, how did it go?” George asked me. I went to the table and sat on the seat I always sit on, and told them. George started to tear up, which made me tear up. “Habibi, don't worry, I will always remember you,” I said, calming him down. Elias didn't say a word, but came behind me and gave me a tight hug, which made me feel that I was ok. “Listen, George, I want you to know that I do not want you to get it as well, so to do that, I need you to follow simple rules. I gave him a paper that was from medical associations like NHS and Medline plus, listing ways to prevent it. “As I was in the hospital, I did research when I was in the waiting room, and read that since I have it, you have a 50% chance of getting it. I listed some ways you can prevent the disease, like don't smoke when you are older, or don't drink a lot, read them and remember them to prevent anything from
developing.” “Ok Mama, I promise to follow these rules for the rest of my life,” He said, wiping his tears away. “I love you,” I told him softly while I put my hand on his cheek, “I love you too mama,” He told me as we both leaned into each other's arms and hugged.
For the next couple of years, I had to develop routines, so I would make habits to adapt to them because I would forget when to do this or that. So making routines and writing them down to practice every day was essential for me. I would wake up at 7.30 and eat breakfast. Then I would watch TV until 10.30. At 10.30 I would take my first batch of medication, then go back to sleep, but if it was a Saturday, I would go to Samir Alzheimer's Center to get more meds, then arrive home and sleep, till 1.30. At 1.30 I would have lunch with Elias, then I would go to my home office to complete the final paperwork for the Samir center, then I would play mind games for an hour to keep me thinking. Then I would take a shower, eat dinner, and go to sleep around 9. This was my routine every day for the rest of my life. This helped me through the day and remember to do things easier. Throughout these few years, my Alzheimer's obviously progressed, but it progressed rapidly. I remember that I once read from the Alzheimer's Association that there are three stages of Alzheimer, Mild, Moderate, and Severe. The more severe the stage, the more you forget, the more you are aware of your surroundings, personal history, and world events, and the less active you will become, and the more behavioral change will happen.
It's been 8 years since the doctor's appointment, which was around the month of December. My symptoms became really severe, so Elias got me a home nurse that would help me with my routines. I could barely walk anymore, so the nurse would have to hold me as I walked. Since Elias was retired, he would sit with me all the time. I didn't know how to talk to him because at that time I was in severe stages. I wouldn't know how to communicate with him anymore, so I would stay silent. I forgot how to eat, so I needed my nurse to feed me. I now have to use a wheelchair because I forgot how to even move any body part. The nurse would have to take me to the Samir Center for Alzheimer's every day to do a quick check-up.
On January 8th, 2019, I was doing a check-up when they found that I started to wheeze, so they did an X-ray. When I first opened the Samir Center for Alzheimer’s, it was a poor clinic, but many people now fund it, and it has developed to be in the top 20 clinics in the world for Alzheimer's treatment. In the X-ray they found that I have Aspiration Pneumonia which was caused by food particles I inhaled. The doctors decided to put me on a feeding tube, but that didn't change the fact that I had pneumonia.
The next couple of days, my pneumonia just got worse from there. My breathing was becoming worse, and I was even wheezing. On the evening of January 16th, 2019, I woke up in the middle of the night. I remembered everything. I remembered my life. I remembered every single detail from the second I was born till the second I was in. I started to fly into the ceiling, and when I looked down, it was my body laying in bed peacefully. As I was going in the clouds, I looked down, and I saw my beautiful town. I saw my house, my old school, and I even saw the Samir Center for Alzheimer's. And as I got further, my vision started to blur, so I closed my eyes, ready to say goodbye to my loved ones in their dreams as they slept deeply in their beds in Ramallah.
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