"Tomorrow, I'm going to advocate for people living with Neurofibromatosis."
My mom had an appointment with her neurologist the other day. After reading Dad's e-mail summary, I said, "I still feel like I'm in the dark. I guess I'll feel that way as long as I live so far away."
Dad did his best to answer all my questions about the medication changes and how the occipital lobe tumors correlate to brain swelling, and possible causes of her confusion, memory retention issues, and shaky vision. It was a clarifying Q&A, but I think this disease will always be confusing.
Neurofibromatosis 2 is a chromosomal disorder that causes tumors to grow on nerve endings all over the body, especially in the brain and along the spinal cord. It's also characterized by tumors affecting both auditory nerves, so most people who have the disease lose their hearing.
When I lived nearby, I was less concerned about reports from doctors. I could channel my care and concern into caregiver tasks or just spend time with her, watching sitcoms and HGTV, being there, letting her lecture me on my life choices. You know, mother-daughter stuff.
I'm beginning to understand how all the grandparents feel. All of us down here in California, we can't brew her a cup of tea or bring her her pills. All we can do is wait for news. But I have to be here. I'm building something here.
So what can I do?
1. Send love.
My mom is homebound by her disability, except for doctor's appointments, and the symptom-permitting walk or lunch out with her amazing part-time caregiver, Jen. Mom's said that isolation is the worst part of the disease. I know from when I was there that it really does lift her spirits to get a card or gift. After her spinal surgery in February, I read her all the Get Well comments she got on Facebook and she smiled the whole time.
Children’s Tumor Foundation is the main charity for Neurofibromatosis research. In planning for this blog post, I found out that there’s an NF Walk in Los Angeles later this year. I started a team with a $1,000 fundraising goal. A week later, we’ve raised almost a third of that, my dad joined the team and is planning a special trip down from Seattle, and my grandmas are walking with us, too.
I called our team The Walking Deb because the event is Halloween week and my mom’s name is Deborah, (and I’m a big dork for The Walking Dead). No one’s been offended yet, so that’s good.
Write blog posts, poems, stories, articles, and comments to others affected by the disease as patients or as family members of patients. Just by announcing my team for the walk, I found out two of my friends have connections to NF I’d never known about, (one a best friend, one a nephew). Sharing our experiences is a great way to build community and support. I used to daydream about setting up a blog for my mom to tell her story. I’m not sure it would be much good now that she’s having cognition and vision problems.
To walk with me or donate, visit our team page at: