Alive within my Mind

On November 30th, my dad posted on Facebook that my brother Dean told a nurse he was not afraid to die, but he feared the impact it would have on his family: thoughtful words from a twenty year old diagnosed with a spinal cord tumor four and a half years prior.

I was thirteen when Dean was diagnosed. On his sixteenth birthday, he developed a headache in the back of his head. He thought it was the result of partying with friends the night before, and he did not want Mom and Dad to get mad at him, so he did not say anything. Our family drove from our home in Leduc to Edmonton with plans of going on the new roller coaster at the mall. As we were buying tickets, Dean backed out, confessing his headache and stating he couldn’t handle it because he had pressure on his head. I was shocked that he backed out because this was my brother who skied black diamonds with me. Why would he let a headache and some pressure on his head stop him from riding the Mindbender?

Over the next few days, his headache and the pressure became more severe, prompting my parents to take him to the University of Alberta Hospital.

The diagnosis was encephalitis, and he was immediately operated on to insert a shunt for fluid regulation. Over the next four and a half years, he had surgery at least once a year to replace the shunt, and that often led to infection, increasing his hospital stay. Every time, my grandmother raved to him about how good he looked with a shaved head. She was right; the look suited him, and I always thought the staples closing his surgical cuts looked cool.

After the diagnosis of encephalitis, the doctors ran tests to figure out what was causing fluid to build up in his brain, and that led to the discovery of his tumor.

My brother’s tumor was benign, so it would not go into his lymph nodes and spread to other parts of his body; however, during a surgery in an attempt to remove it, the doctors discovered the tumor intertwined with his spinal cord, and there was no way to remove it cleanly, making it cancerous in its location. In addition, the mere act of opening him up caused surgical damage: his right leg became partially paralyzed, and he spent several months in a wheelchair. When he was able to walk again, he needed a cane and a brace for his leg, but over the years, he became strong due to his faithful workout regime.

After his surgery for his spinal cord, my brother went for radiation treatments, and it did not cure him.

But he never gave up hope. And he maintained his sense of humor by constantly telling me to pray for a miracle. He wasn’t religious, but I was fanatically so at the time, and he enjoyed making fun me.

The saddest day of my life, other than the day he died, was when he woke up from his last surgery. At that point, his tumor grew into his brainstem, and the surgery was to buy him some time. I remember him looking at me with hope in his eyes, and when I could not reciprocate his hope, he looked away, and I knew he knew.

A few days after his surgery, he talked about dying, but still occasionally threw in the odd “pray for a miracle.” The ICU allowed us to sneak in our dog, Nova, for a visit, and for the last week, my mom and dad slept on chairs in his room while I slept on the floor. We occasionally went home to shower, and I walked across the street to attend my first year classes at the University of Alberta. I am grateful I had that time to be with him, as well as all the other time I had with him.

As for the impact of my brother’s death, I still get emotional in November, and I always look for the relief December brings. This year, I was so busy with work and my kids that I didn’t think about the anniversary of my brother’s death until the actual day, and then it hit me hard, causing me to not handle it too well. I am thankful for friends and family who posted condolences and for a friend of mine who stayed up late with me to chat on the phone to cheer me up. It meant a lot to me.

I can look back on my life and think things could have been different if Dean would not have gotten sick and died, but I could never know for sure. While I haven’t lived a happily ever after life, I am living a happy and fulfilled life.

And I have wonderful memories.

After Dean recovered from his spinal cord surgery, my dad got him an adapter for his car, so he could drive with his left foot, and we often went into the city to go shopping and have lunch. In Leduc, we went for a lot of walks, and we enjoyed hanging out at home listening to music, watching videos, and playing video games, Risk, and Trivial Pursuit. Above all, I enjoyed talking with him, especially about his two favorite subjects: history and politics.

One of my fears is that time will erase him, and I do not want that to happen. As painful as November can be, I am happy I still feel emotion because it keeps my brother alive within my mind.



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