Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Saturday, July 25, 2009

Spontaneous Recall and Then It's Gone

I found this post written back in July. It was the beginning of a time of introspection. I went away for awhile because I had to make some hard decisions, and in the end, only the person and their God can help them move in the place they need to be. Read this and understand.


I am sure there is a more medical, scientific name for what happened in our house last night, but all I can call it is spontaneous recall.

It was an ordinary evening. Dinner was done, the kids were in the living room watching television. I was at the computer, trying to download all the research for a paper due Sunday. I had just reminded my son to go take his shower. If you are not familiar with my youngest son, he has dysautonomia/POTS, a rare autonomic nervous system disorder. It is not fatal, but there is no cure. One of his worst symptoms, one that has led others to think he actually had suffered from Traumatic Brain Injury (TBI), has been the complete loss of memories of his childhood. Coupled with that was the inability to remember anything short-term either. He needed a phone with constant reminders, even to remember to eat lunch.

It has been a heartbreaking FIVE years since he first told me he thought he was losing his mind and couldn't remember anything. No one could give us a definitive answer, and back then as his health continued to deteriorate, they even looked for tumors. A neuropsych evaluator said that she only saw deterioration like this in terminal, progressively degenerative disease. His therapist counseled me to treat him like an early Alzheimer's patient.

As a mother, I was devastated. Here was the same little boy who tried to memorize his times tables in kindergarten, now getting hung up on spelling the word "the." The entire house became his memory system, and he relied on everyone to keep him oriented. I played music that we all loved. His brother, though annoyed, let him play certain things over and over again. We bought him a phone, not so much for the ability to make calls, but for the ability to keep reminders of everything. Reminders to take his medication. Reminders to feed the dog. Reminders to take a shower.

School became useless. No one has ever answered my question: How can you learn if you can't remember. 5th, 6th and 7th grades were completely lost. Anything he wrote down, he couldn't even recognize his handwriting.

I took old pictures and scattered around the house. I wanted him to at least be comforted by the images. Even though, he would pick them up over and over again, and ask me the story behind each one.

As days turned into years, I stopped using the words, "Don't you remember?" In fact, the word remember was stricken from my vocabulary. We all tried to help him live in the present, even as each new moment became the present all over again. The best analogy came for the neuropsych evaluator. She said it was like his mind took a Polaroid snapshot of each moment and then threw it away. Each moment was never connected to the next.

Then came that night.

All I can remember is that it was like a damn broke and everything flowed with the flood of recognition. Childhood memories that included the feeling of the backpack hitting his shoulders as he walked down the halls in first grade. Holiday celebrations in homes in other states. Smells of food that he no longer liked to eat. There was no rhyme or reason to it, just stacks and stacks of memories. Some as disconnected as ever, but others attached to more memories in odd, disjointed ways. Like how the feeling of the backpack led to a description of the school walls and how they felt.

He went on for the better part of the night. After awhile, I just listened, not daring to speak, hoping that the more he spoke, the more he would remember...and retain. The elation on his face of realizing he did have a past. He didn't just pop up one day, 13 years old. He hugged me again and again, like a long-lost friend. He went around hugging everyone and fingering household items like he saw them for the first time. He went to bed with such a look of satisfaction, I just sat there for more than a half hour, looking at him.

The next morning, he remembered the event, but not the memories. In a week, the event and the memories were gone.

I cannot even write about this anymore! I am in such anguish at his loss and mine. All I know is for more than two hours, one evening, a little boy was connected to his mind. I will never forget that look on his face. The confidence. The serenity.

Today, we are back to square one. I try not to remember in front of him. He tries not to think about how he can't remember. We use reminders for everything. The pictures lay scattered around. And, he asks me again, what day it is.