I had quite a bit of a scare last night. My little (in his 20s) brother, who is mentally and physically disabled, has Duchenne Muscular Dystrophy. The genetic illness is a terrible one, and for those who don't understand what it is, I can offer a basic explanation. It isn't exact, but it gets the idea across. My brother's muscles don't make or know how to use the necessary nutrients to sustain themselves, so they shrivel away and fat takes their place. This happens in the extremities first, and slowly moves inward. Usually the heart and lungs are the last to be affected. The lung problems are usually what turn out to be fatal.
By the way, his name is Matthew. We call him Matt or Matty or Taco if we want to tease him. He used to refuse to tell people his name because he was so shy, so we would tell them his name was Taco. When he could still walk, he would stomp his foot and yell "NOT TACO! MATT IS NOT TACO!" It was adorable. He can't walk anymore. He hasn't since he was around 12. He's on a breathing machine too, but that's less because of the disease and more of an accident he had. The day I got my acceptance letter to college in 2009... July 7, actually... He put aftershave on and then flicked a lighter that he had hidden from me. He knew he wasn't supposed to have one, so he hid it. He wasn't being malicious or anything. He just thought it was pretty. It ignited his shirt and gave him third degree burns from his belly button to his chin before I could put it out. He was in the hospital for quite a while.
So last night, around 8-something, my mother calls me. She lives about 90 miles away with my brother, and she teds to call either 3-5 times a day or not at all. Odd, right? Anyway, I kinda glared at the phone because it was the 4th time she called me that day, but I answered it. She said my brother was having chest pains, and that his heart rate was 54. 60 is usually the low range for normal, unless you're very physically fit. Obviously Matty isn't. She was letting me know she was taking him to the ER.
I stayed calm on the phone, and freaked out when I hung up. Any kind of illness, even a common cold, is dangerous for Matt. I posted on Facebook to let people know what was going on, and had to stop doing homework because I was panicked. I ended up taking a valium to stave off a panic attack. (That's why I have them. They're low-dose and fast-acting, to ensure that they stop my panic before it gets too high to stop, says my doctor.) She called again. Matty refused the EKG and she signed off on it. His burned skin is very sensitive, and even the sticky pads from an EKG will rip it open and leave wounds that take months to heal. So they pulled blood and called for chest x-rays.
The next time Mom called, she said that they were going to do a CT Scan with ink, to see what was going on. Matty has fluid in his lungs, she said. I don't know what that could be, I answered.
Pulmonary edema. Fluid in the lungs can mean several things. Pneumonia. Congestive heart failure. Not good.
It was after midnight the next time she called. They canceled all the tests. They were going to send Matty home. They got the blood results back (finally) which told them he had an infection. At two in the morning, I found out the doctors determined that Matt has Bacterial Pneumonia. Luckily my mom did NOT wait to bring him in. They said it is still in the early stages, so they put Matty on some heavy duty antibiotics. He's going to see his regular doctor this week.
I did not sleep until around 5. Now I'm up. I have an exam at noon. I haven't really studied. I'm missing a class as I write this.
I don't care. I just want Matty to be okay. It's a foolish thought. I want him to live and run and play and be silly. I know he won't. My brother is dying. There is no cure for this. No matter how many times I go through the stages of "losing someone," every time something happens, my brain shuts down. I can't deal with it. I'm terrified that I won't be there when he does go. I hate myself for some of my thoughts. I know they're normal. It doesn't matter. I would trade places with him in a second. I want to. I swear that the first person who comes to his funeral and tells me they "know how I feel" is going to get punched. And I'm not even going to feel bad for it.
I know this is supposed to be a news blog. I apologize for hijacking it today. When my brother does pass away, I will probably stop the blog for a while. I'm sure you all understand. This could happen in days, months, or even years. I will, of course, let you know when the time comes.
My only wish is that it never would.
Much love and solidarity,