It all started about two years ago. My brother and I lived in the southern part of Allica a region that is known for building the Asuja the tower that honours the god Asu. In Imela there are four regions each dedicated to one of the four Imelian Gods. Asu the god of the south. Baroc the god of the North. Cando the god of the east and Darco the god of the west. We live in general peace with each other. However two years ago everything changed with me and my brother when he was diagnosed with Lirkman's disease a progressive muscle and brain disease. Basically what this meant was that my brother Mica was going to die. My name is Jamon by the way. This is our story.
Chapter 1 Background
It all started like I said two years ago. At the time My brother was five years old and I was eighteen. A year prior to this our parents died in a car crash. Unfortunately our grandparents died when I was a baby and we have no known relatives as our parents were only children. However since I was seventeen and I would "age out" of the orphanage system in a year it was decided that I would be given what is called Exleparary Gurardianship. What this means is that I would gain legal guardianship of my four year old brother with a social worker checking in on us every week randomly. This is to make sure that I'm taking good care of my brother and feeding and clothing him etc. This went on for exactly one year. My parents ironically enough died the day after my seventeenth birthday so it was exactly one year. We then went to court with our social worker Mickel who advocated to the judge that I was a suitable guardian for Mica and that I would take good care of him. When the judge reviewed what had happened the previous year he said he saw no reason why I shouldn't be given guardianship. Therefore I became the legal guardian of my brother. We were very happy about this development. "Does this mean I don't have to live in a orphanage Jamon?" Mica asked me. "Yes Mica. This means that I am your legal parent and that you are my brother and ward." "Does that mean I have to call you Dad?" I laughed "No buddy. Im still your brother but because I am an legal adult I am also able to take care of you." Now some of you may be asking why are my brother and I so far apart age wise? Well lets just say that Mica was unplanned to say the least. Anyway we went home that night and slept for the first night as officially independent family. Then the disease started six months later.
Chapter 2 The first signs
The first signs started around August. We were at our family cottage that our parents had bought. It was a one storey cabin with three bedrooms. Ironically the one bedroom where my parents had slept was now mostly unused. We were sitting at the table that night having supper. It was spaghetti Mica's and mione's favorite. All of a sudden Mica got a distant look in his eyes. "Mica?" I asked "Are you alright?" He didn't reply. I went over to him. "Mica? Mica can you hear me?" All of a sudden he started laughing. At this point I got annoyed. "Mica this isn't funny. Stop laughing." Then I remembered something I had seen online. Some people who have seizures have what are called absent seizures. Sometimes one of the tics are laughing for no reason. I looked at my watch. The seizure had been going on for about five minutes. If it went longer than ten I was to call 911. Just like that he came out of it. "Mica are you alright?" "Yeah I'm fine." "Mica who am I?" He looked at me funny. 'You're Jamon my brother." Then all of a sudden he fell face first into his spaghetti and started shaking. I knew that this is what they called a grand mal seizure. I rushed to the phone and calluoed 911. The operator told me to lie Mica on the floor with a pillow underneath his head and all objects cleared from him. I picked him up and did just that. By the time the ambulance got to our cottage (which is in the country) the seizure had stopped. However since this was Mica's first grand mal seizure they admitted him to see what was wrong. After about three days of testing they diagnosed Mica with Epilepsy and prescribed some seizure control meds. However that was only the start. In September I noticed that Mica seemed to be limping and that he was falling more often. I decided to take caution and took Mica to the doctor. We did some more tests and a muscle biopsy. The results were terrifying.
"Jamon do you know what Lirkman's Disease is?" the doctor asked me. "No I don't" I told him. The next half hour was a nightmare that I will never forget. "Lirkman's disease is a muscular and neurodegenerative disease. Basically over a period of three to five years the body starts to degenerate the muscles and brain tissue. What happens is the patient experiences seizures muscle loss and eventually loses the five senses. Death usually occurs due to either heart failure or pneumonia. Basically your little brother will become a vegetable." "Is there anything we can do?" I asked the doctor. The doctor looked at me with sad eyes. "No. There's nothing we can do. Ther disease is rapidly progressive and Mica will eventually need a ventilator and a feeding tube just to survive. "How long does he have?" "No more than two years."
Chapter four Losing strength
I can honestly say I was devastated by Mica's diagnosis. I knew that Mica wouldn't survive to ten most likely but I wanted to make the most out of the time. I asked Mica what he wanted to do and if he wanted to be a vegetable or not. "Honestly I think I shouldn't be a vegetable. I mean if it's going to get so bad that I won't feel or know what is going on I don't think I would want to be kept alive." "Hold on Mica. Are you saying that when you get to the absolute worse point you want me to basically murder you?" He looked me straight in the eyes. "Yes." This shocked me. However I had to accept what he wanted as I don't believe in keeping someone alive who wasn't going to get better. Over the next six months his health continued to deteriorate. I had to watch my brother just start losing energy and muscle. At Christmas he lost his ability to walk. I still remember when it happened to. "Mica time for dinner!" "Coming!" he yelled back. At the time he had started using crutches to get around. CLANG! "OW!" "Mica are you alright?" I Asked running out to him. "Yeah I just fell." 'Can you suit up?" "I think so." I noticed how slow he was getting up. "Are you ready to stand?" He nodded breathing heavily. I got behind him and lifted him up under his arms. That's when I noticed his legs were shaking. I put him on his feet and let go. He collapsed on the floor and then had a seizure. After the seizure was done we tried to get him to stand for about ten minutes. Finally Mica said "Jamon stop. It's over. I can no longer walk." I hugged him as we both started to cry. Finally I just picked him up and carried him to the table. Unfortunately since it was Christmas Day the wheelchair shop was closed for a week for the holidays.
Chapter Five Senses lost
The following six months Mica had severe and rapid muscle loss. By June Mica could no longer lift his arms and in fact he couldn't even stand. The doctors had started talking about getting a nurse to help. I adamantly refused. "Mica is MY responsibility. I will learn how to take care of him myself." I attended a course every night for three months. Finally I was able to look after Mica by myself with a nurse on duty when I went out for my job or groceries. I would help Mica eat by having to feed him by hand and yes that includes bathroom trips as well. Then he started losing his ability to smell and taste at the same time. By August he couldn't taste or smell anything. At this point we discussed a feeding tube. "Mica what do you think about a feeding tube?" "I think I have to at this point." "Well no actually you don't. See you can still swallow so you don't have to have a feeding tube." He looked at me angrily. "WHAT'S THE POINT IN BEING ABLE TO SWALLOW IF YOU CANT TASTE THE FOOD!" With this he burst into tears and I went over to him and picked him up and held him. Eventually he calmed and we agreed to have him have a small surgery to implement a permanent feeding tube. Luckily I learned all about the feeding tube beforehand. After having a feeding tube installed in his stomach he continued to lost both muscle strength and mental strength. In September he started forgetting certain things such as what he was doing or repeating what he said. Finally that Christmas Mica lose his sight suddenly. It was the day after Christmas.
Chapter Six Lost of the most important Senses
"Jamon! Jamon help me!" I ran to Mica's room terrified at the tone of his voice. I stormed into his room crying "Mica what's wrong!" "Jamon where are you?" "I'm right here buddy. Can't you see me?" He stuttered "No I can't see anything." All of a sudden I realized he was blind. It was terrifying for both of us. Also Mica now needed me to help him with directing his wheelchair. Then two months later in February he lost his hearing. Luckily We prepared for this moment. We had studied finger sign language so that we could communicate with each other. At this point the doctors figured Mica didn't have long left. Then one day Mica said something that terrified me to my core. "Jamon I can't do this anymore." "What do you mean buddy?" "I'm tired of this useless body. I want to go home." I was terrified but I agreed this was no life for him. I leaned over him and asked if he was sure. "Yes" came the faint reply. So rather than wait for death I Picked up his head and removed the pillow. Then I used it to cover his mouth. It was about two minutes before he had a seizure due to lack of air. Finally he was still.