This is what glioblastoma looks like:
this is good i can talk tvo dad vpattcccccicccceerybodyi lbgoveyouthemvvvvvvvvvvbostest
iloveyou xthe mbvvbovvvvvvvvvvvvvvvvvvv
i love you the mostest
It took my mom ten minutes to type that. I had to get the computer for her, as she is bed-bound. I plugged it in for her, opened up this blog to find a scratchpad, made the font size as large as possible, got her glasses, retaught her where the backspace, enter key, and letter “L” were, and waited. She used the pointer finger of her left hand, because her right, dominant side no longer works. She hit lots of wrong keys. She got frustrated, and she didn’t stop. I knew what she was saying, but she wanted it to be perfect. She was persistent.
She’s found workarounds every step of the way. We found a new way to communicate. She taught me the ASL alphabet when I was little which became our secret language as she lost her voice. She can hear, only if you speak slowly, loudly, and make the letters exaggerated with your lips. You must face her, because she has learned to lip-read. She had the “ah-ha” moment today that perhaps she could use the computer. And that’s what she typed.
I am so proud of every little victory she makes. I am so proud of her for kicking statistics in the dirt. The average life expectancy for patients diagnosed with glioblastoma is twelve months. Twelve. A year left on this earth if you’re lucky. And that was twenty months and two weeks ago. Tomorrow will be her 61st birthday.
Glioblastoma will try to rob my mom of every faculty. My mom cannot stay awake for long. But she was awake for a little and typed that.
So I typed this. I am sitting next to her hospital bed watching her drift off to sleep, but I had to type this. I am so proud of her. I cannot tell her enough.
I love you the mostest, Mom!! I always have and I always will. I am so proud to be your daughter and to be able to call you my mom.