This blog was written by my 12-year-old daughter, Jamie Trossman.
Growing up, I learned to treat Jacob like I would if he didn't have Pelizaeus-Merzbacher disease (PMD) -- except I know not to beat him up. Most girls my age ignore their older brothers. I stopped playing with mine not because he's my big brother, because he's always surrounded by nurses and he never pays attention to me.
Before he got sick and spent almost a year in the hospital, I remember pretending that my Barbie was his girlfriend and learning that he loves the sound of sneezing, swimming, music and bright colours. I knew his preferences as well as I knew my twin sister's.
Over the course of the last few years, Jacob spent over 200 days in hospital. I spent a lot of time with him then, trying to cheer him up, reading to him, watching movies with him and lying on his bed with him. When he was in the hospital, I began to realize how sick my big brother was and what PMD really meant in terms of quality of life.
And then, a few weeks ago, our roles were reversed. He finally got a chance to be the healthy sibling visiting his sick sister in the hospital. That's when I really began to understand my brother in a way I hadn't thought about before.
We -- my parents and I -- drove down to Sick Kids because I had appendicitis. Obviously, we knew where to go. I was a little nervous because I've never been a patient in the hospital, but I was determined not to show it. How could I be scared to have a tiny appendix surgery when my brother's smallest operation was getting a feeding tube permanently placed in his stomach? How could I be afraid of staying in the hospital for a couple of days when my brother spent almost a year there?
It has been like this for his entire life. This is his norm.
After we were assigned a comfortable examination room in the emergency department, the doctor introduced herself. I couldn't help wondering if Jacob's nurses and doctors introduced themselves. I was allowed the privacy of a bathroom to do my business, and once again, I compared this to Jacob. He has always had women looking at his private parts without asking him if it was OK. Over the course of his life, many nurses were tasked with changing his diaper, whether he knew them or not, whether he minded or not. I hope Jacob doesn't mind. It has been like this for his entire life. This is his norm.
I had many opportunities to ask questions, verbalize my concerns and I was provided with plenty of information.
Do they do this with Jacob? No, they don't. Despite their best intentions, I've seen doctors and nurses assume that since he is non-verbal, he doesn't understand what is going on. Jacob was only told about what they had done after they had done it -- if they even told him then.
When a nurse doesn't ask Jacob's permission to touch him, my mom has to stop them and ask them to explain what they are about to do to him. Jacob likely feels very grateful for Mom, but a little annoyed that he can't advocate for himself and angry that the nurse didn't think to tell him anything in the first place.
As the days went on, I started thinking about how his experiences compared to mine. I had a lot of free time to think about it.
I didn't love being a patient. I felt so sick the whole time, and had next to nothing to do. I didn't like when they woke me in the middle of the night to take my blood pressure and check my temperature. I think this would bother Jacob, but maybe he is used to it. If he doesn't like it, I can't even imagine how frustrating it would be not to speak up about it.
It would be infinitely harder if I was unable to communicate my needs, fears and worries. I had a tiny taste of this the night after my surgery, when I woke up in the hospital room.
My eyes opened and I stared at the ceiling for a moment. I wondered where I was and I slowly remembered what happened. The last thing I recalled was being in the hospital about to have a surgery to remove my appendix. I then remembered getting hooked up to machines, counting down from five. And then nothing. Emerging from this sleep felt like emerging from a warm, misty shower. It was the most relaxed I had felt in a long time.
This feeling didn't last long. Just as I figured out where I was and what happened, I explored my senses. A baby cried softly in the distance. Machines beeped. I was suddenly aware of a stabbing pain in my belly button. I shut my eyes, waiting for it to pass, but it didn't. It burned on for another minute and then lessened considerably.
My mouth itched and felt entirely dry. I tried to conjure up some saliva, but my throat throbbed and seared. Why was my throat so raw?
I realized my mom was two feet away from me. I tried to ask for water, but my throat only let out a croak.
"Mom?" I said weakly. This sent a searing pain down my throat.
I began to panic. If I couldn't wake her, how would I get water? I felt as though my throat would explode if it didn't get liquid immediately. I was like a camel who had gone a year without water and could not find an oasis. My mom was my oasis; I called for her, but barely made a sound.
Then I realized that this was what it was like for Jacob. If he wanted something, he couldn't get it or tell anyone that he needed it. He just had to cope with it, which I was finding impossible. I felt beads of sweat drip from my body, soaking the bed.
"Mom?" I whispered helplessly. She woke up and got me water. I must have waited for her for only a few minutes, but it felt like much longer. I felt guilty that I could wake her to get help, and Jacob can't -- that I can drink and Jacob can't. I felt guilty that I could tell people what I need, and Jacob can't.
This experience has made me far more sensitive toward Jacob's situation.
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