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Brianne: Surviving Daughter of a Scleroderma Patient (Canada)

"My dreams are riddled with memories. I still hear
the high pitched hum of his oxygen machine."

I think I was eleven when my dad had to go to Edmonton, Canada, for tests. They did not know what was wrong with him, just that he was sick, and they did not know how to make him better. He was gone for little over a week. When he came back he had lost over fifty pounds and looked so sad. After he had gone to bed my Mum sat us girls down. There were three of us in the room. (Five sisters all together, but the other two sisters were in town.) She told us that, "Daddy was very sick and was going to need our love and support." At the time I did not think anything of it.

We had to move from Grande Prairie, Alberta to Nanaimo, British Columbia because he needed the moisture in the air.

We moved into this giant brown house two blocks from my school. Dad had to go on twenty-four hour oxygen. When you walked into the house you could hear a high pitched humming noise, but after a while you did not even hear it anymore. I did not hang out with my friends, or go to parties or school dances, because my dad was my life. Mum worked full time and if she was not home, I was.

My sisters (two still lived in Grande Prairie, and two were older than me) were always out of the house. I do not think that they wanted to deal with the disease or with him dying. I remember once when when I was fourteen, Dad got up to go to the washroom. I was watching TV with him. I heard this loud thump from the washroom. I sat outside the bathroom door for 45 minutes continually crying and asking my Dad if he could hear me. He finally came out of the bathroom and went to bed for what seemed like eternity. Later I found out from my mum that he had passed out and was lying unconscious on the floor for most of that time and because he locked the door I could not help him. Another time I had to help my mum drag him from the bathroom to the bedroom were we laid on the floor with him for five hours until he could get enough energy to climb into bed. I have had to hold his head up and hold his tongue so that he did not choke when he passed out.

He eventually lost movement in his legs and feet. His brain started to harden as well. He would say things that he did not mean and then he did not remember saying them. One day I did not want to go to school because I knew something was wrong, but my mum told me I had to go. So I went. I came home for lunch and I did not want to go back, but I went. When my principal walked into my English 10 class, I knew. I packed up my stuff and walked out behind him. When he said, "I am sorry, Brianne, but your mother just called and your father has passed away…" I do not know how I got there, but I was sitting on the floor. Then I remembered my sister (who was in twelfth grade) and I ran down to the office and she was there crying. I held her in my arms and repeated that it was going to be okay, then we went home. My mum was waiting at the top of the stairs for us. My other sisters both left to be with their boyfriends.

I went to go see my dad. He was still lying on the bed. I walked up to the bed and held his hand and said all the things that I wanted to say before he left. I cried beside him and told him all the things that I wanted to do and become. Then I kissed his face and left the room.

Sixteen days later I celebrated my sixteenth birthday, alone, with my mum, crying.

I am now nineteen and remember every detail of it all. My dreams are riddled with memories. I still hear the high pitched hum of his oxygen machine.

Thank you for your time.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Sherry Jo Young

Sherry Jo Young was the ISN Story Editor for this story.

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