I injured myself in a minor way yesterday, but lost some skin and may have needed a stitch or two (which I didn’t get). My paramedic friend asked me “when was the last time you got you tetanus shot?” I said “probably about fifteen years ago.”
Fifteen years ago today, Stephen would’ve been alive. At this very moment, he would still have been breathing and smiling and loving. Even if I don’t think about that day often, I can remember it like it was yesterday. Sitting, eating breakfast, expecting my mom to call to say she made it to the respite home he was at and will be home with him shortly. The phone rang, something wasn’t right, it took too long, was she late, did she make it there. My mom didn’t have a cell phone at the time, she does now.
Mom: ” Hi Marj.”
Marj: “Hi, you made it!” I wondered what took you so long.”
Mom: “Marj, I have to tell you something. Stephen’s gone”
Marj: “Gone where, pretending I didn’t know”
Mom: “Stephen’s dead. Come and meet me right now, they will pay for taxi for you.”
Marj: As I balled and stumbled around the apartment “damn straight they will pay for a taxi. How the !@#k did this happen? What did they do?”
Immediately I went into fight mode. I wasn’t sad in the least, I was mad and was ready to find the people responsible.
When I got there, he was in bed covered with a sheet. I said goodbye, which wasn’t real at all. I was forced to say goodbye to my dead brother, I hated it. I didn’t even kneel. We were then sat in separate room, away from the commotion. There were paramedics, police officers and we waited for a coroner to show up, who said it was natural causes. I’ll show you natural causes of death.
Their staff kept talking to me, trying to make me feel better. It’s a wonder that someone can’t read, no eye contact, subtle to no head shakes and body posture as ‘shut up. stop talking.’ I just wanted to get out of there. What were we going to do now, with all his stuff, who would we care for, how would life ever be the same, ever?
We called friends to come and get us. Cheryl, she was the first to arrive. She sat with my mom and is just wonderful. Dave our associate pastor took some of my brothers belongings home for us. His son Brad drove me home in his car, it was yellow at the time and a, I can’t remember the type. I know I called it Mello Yellow, because of the loud engine, but cool vibe.
Marj: “I’m not going to school tomorrow!”
Mom: “You don’t have to.”
Marj: “I am going to figure out what happened. there is no way he just died.”
Mom: “Mmhmm. You’re right.:
At the time we were both paralyzed. She never said so, but she went with me to every meeting I set up and backed me up while I yelled, took notes, asked really tough questions and put together time lines like a CSI agent. I finally got it, a confession to the truth. “One of our staff fed him by mouth. She didn’t read his file to see he had a g-tube.”
I believe I may have in to someone I never want to be, I wanted to see them suffer, make them pay. There’s no way he let someone get that close to his face and not push them away. He didn’t like eating and had the strength and arm control to hit people, trust me, I know. I brought up force feeding, but they denied it. I also wanted a name. No luck in that. But, I did hold them prisoner in that room for three hours asking for one, I hoped they knew what they were in for.
We wallowed for months, well a year. I dropped out of school, we were bored and I hadn’t found soul friends yet, that were for better or worse. Don’t get me wrong, I had friends, my youth group was a big source of friendship, but there was still something missing and it wasn’t Stephen.
Diane a wonderful friend to us, helped my mom clean out his room. It was the best gift anyone could’ve given us, I don’t think I could’ve done it. We set out to move, because now we were over housed, three bedroom and two people. Everything had become so impersonal and only necessity based.
Fifteen years and this is the first time I am telling this part of the story and some don’t even know the half of it. I still meet people who ‘have heard’ or don’t know and they say “yes, I understand. At least he is not suffering anymore. ” Or “he was going to die…he had one of those, I forget what you call it conditions.” Believe it or not, not everyone that has a disability, dies because of their disability. It can be age, accident or even someone’s fault.
Never give up if you believe something in your heart, always fight for it. He was worth fighting for and I know the people that were on the other side figured that out pretty quickly.