It has been exactly a week since I had my Supra Pubic Catheter surgery, and some people have been a little surprised about my openness on such a typically delicate subject. I am one of the people researchers warn us about on the dangers of Facebook and other forms of social media, where there are no filters on what is posted.
The surgery went well, and so far, there are no complications. I sleep better at night because I don’t have to get up every two or three hours, and Cliff and I are out and about for several hours a day without worrying about my having to go to the bathroom.
What would my mother say about all of this? My mother died in August 1999. I sometimes wonder what she would say to me about my disease and what she would say about my being so open about the bathroom challenges. She came from a different generation, a different time when you didn’t talk about your personal issues. You accepted the hand you were dealt and lived it.
Being trained as a nurse during World War II was one of her proudest accomplishments. She loved her job at the Sacramento County Hospital, now known as UC Davis Medical Center, where she spent much of her time. Back then, they wore the white uniforms and starched hats with pride, and we were proud of her: the nurse and the mom who would do anything for her four kids.
What would she say about the ALS? She would be extremely sad for me. She would be here for me, and she would do everything she could to care for me. Giving to her children unconditionally was my mother’s way. We took advantage of her and didn’t appreciate her as she deserved. What she wouldn’t have done was ask many questions, challenge opinions, or go against the norm. It was not in her; she would have accepted the inevitable.
And she would never have let anyone know there were challenges in the bathroom. I remember in 4th grade finding out about sex at a slumber party. I tried to get my mother to talk to me about it, but she never did. I am still waiting to learn the facts of life.
The ALS would have broken her heart, but she would not pity me; she would have just carried on doing what she could–just carrying on. That is how she lived her life; she just carried on accepting the hand she was dealt without saying much.
I miss her.
–Susan
