A Life Worth Living or A Death Worth Dying
The ups and downs of long-term care
My baby brother is in the hospital again. Baby…my 42-year-old baby brother.
He is in many ways still a child. Multiple health problems have left him severely disabled and unable to live a normal life.
Sometimes I feel like death would be a better option for him. He has been losing his vision and is now, for all intents and purposes, completely blind. He is deaf thanks to injuries caused by seizures. The Cochlear implants help; they make communication possible, but it is by no means ideal or easy.
His epilepsy is generalized and difficult to control. He cannot walk on his own. The left side of his body is almost useless.
My brother hasn’t always been this way. Other than vision and coordination problems, he had a fairly normal early childhood….after recovering from surgery to remove a brain tumor. That ordeal lasted over a year.
Before the tumor, prior to his 1st birthday, he was my baby brother. I was 5 years old when he was born. My mom says I used to climb into his crib to comfort him when he cried. Sometimes I even managed to get him out of the crib and carry him around the house. I told everyone he was my baby doll and I was taking care of him.
Then life changed for all of us. He changed. His development reversed course. My brother suddenly disappeared, whisked away to the hospital for tests, surgery, and recovery. I don’t even remember seeing my parents much while my baby brother was away.
Finally, they returned, my parents carrying my baby brother. He was not the same. I remember thinking his head was too big. There was also something on his head that terrified me. It was only a scar, but it looked like a huge worm to my childlike eyes, and I thought it was eating his brain. I had been told about the tumor, but as a six-year-old in the early ’70s, I had no tangible understanding of what that was. So here I was finally reunited with my baby brother, and I was afraid of him.
The fear didn’t last long. We grew up and grew close. I have watched my brother deteriorate just as quickly as he has grown over the years. I have watched him change from an independent young man to a man aged beyond…
