You can’t tell from the pictures, but my mom struggles every day of her life.
Almost five years ago, my mom was diagnosed with Primary Progressive Aphasia, or PPA. It is a disease that robs it's victims of their use of speech. For my mom it started off with a difficulty in remembering words. She would be talking and midsentence couldn’t remember what word to use. She would know exactly what she meant and what she wanted to say, but just couldn’t recall the word for it. It progressed (as it does). She soon couldn’t speak in public (something she was brilliant at before) and couldn’t read aloud. At this point, speech is very difficult for my mom, and comprehending speech is exhausting and very frustrating. She has a very hard time filtering out the noises around her to understand what is being said, so even gatherings with all the grandkids, while joyous for her, are also very hard.
When you first hear about PPA, you cannot fully imagine the heartache that it brings -the dreams that die with the diagnosis, the days of depression that it inevitably brings on the sufferer, who is fully aware of what is being taken from them day by day. Maybe someday I will write more about that, but let me write briefly about one of the tragedies of PPA.
My parents moved here two years ago to be close to family – three of their kids, and 13 of their grandkids (now 14). They left the small town that they had been home for almost 30 years. They left all of their church friends, one of my mom’s sisters, her parents, all of the church members who knew her as a stalwart member of the ward, and a town full of people that knew her from one way or another.
Moving somewhere new – leaving all of that behind – is hard enough. I can’t imagine doing it with PPA. My mom is a brave woman though. She still seeks people out. She still keeps her eyes open for ways of serving. She still smiles.
Sometimes when I am at church with her, or a baby shower, I see that smile on her face, and I hear her offer as many words as she possibly can to let people know that she cares and notices them. I love her for it, and it makes me happy, but I can’t help but think, “None of these people really know my mom. They have no idea how intelligent she is – how much humor she always brought to everyone around. They have no idea how much strength and wisdom lies under that smile.”
My mom has not just lost her speech, she has lost a great deal of her identity. This is a tragedy – that the world can’t fully know my mother.
Don’t we all want to feel understood? Don’t we all want to feel that the people around us know who we are?
So for my mom’s birthday, which on the 15th, I want her to have that. Some of the people who know her best will be sharing with the world who my mother is. It might be difficult for her to comprehend everything that will be written here, but I will be praying daily that she will feel the messages we have for her even when she can’t completely understand them.