I Know a Fighter: Advocate for NF Awareness Month

"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.

2. Walk.

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.

3. Write.

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.

I’ll do my best to be an advocate for her.

To walk with me or donate, visit our team page at:

http://ctf.kintera.org/nfwalkla2015/thewalkingdeb

Why Am I Cranky?: The Validating Quality of Awareness

"Tomorrow, I'm going to be less of a cranky-pants."

Lately I've been saying things like, "I've developed tools for dealing with the emotional aspects of chronic depression, so it's mostly a fatigue problem now."* I questioned whether I have the authority to make that statement since I just went through a major depression in March, but I'm damn proud of how I dealt with that, actually.

I've come to understand that struggle is not a disease to be cured; it's part of life. And that's made me a lot happier overall.

So here's what I'm gonna do: I'm having a bad day. I woke up cranky and haven't done anything, (except stock my Zulily cart and then empty it when I realized I don't want stuff). Instead of distracting myself further, I'm going to logic myself into a better mood.

The 'Why I'm Cranky' List:

Positivity's all well and good, but sometimes I need to make room for it by addressing the negative. The 'Why I'm Cranky' List is a great exercise to help me productively work through unpleasant feelings. (This is my example:)

1. Inflammation and Discomfort from the Common Cold:

Inflammation anywhere in the body can mess with neurotransmitters and make it difficult to regulate mood. (My psychiatrist in Seattle told me about that.) I can forgive myself for not being sunshine and smiles with a mucous army stationed in my lungs.

2. Isolation:

I haven't attended any of my social groups in a week because I've been sick. I know that forming and maintaining bonds is essential for health and happiness. When my cold symptoms are in check, making an effort to socialize could improve my mood.

3. Disneyland Last Week:

What goes up, must come down. I don't regret my day at Disneyland. I got to spend it with one of my best friends who lives in a different state, which is so, so, so valuable to me. But, it's possible the wave of adrenaline has crashed and now I must seek calmer waters.

Okay, I feel better. I feel validated. Understanding the legitimate reasons for my bad mood keeps me from catastrophizing, (like, "I'm losing my mind," or, "I'll never be happy"). I stop adding to the list when I feel better, and then I address the issues and move on.

Hang in there, kid. I'm off to cross-stitch a Fluttershy!

*Today's example is about working through a mild state of irritability. If you are experiencing a more-serious depression or anxiety and this doesn't help you, THAT'S OKAY. Something will. Don't give up trying.

Live Your Legend Local: Goal-Setting With Group Support

"Tomorrow, I'm going to live my legend."

The first Live Your Legend Local (LYLL) meeting I attended took place on February 3rd. The event description said: 

Come prepared to answer our three big questions.

1. What are you building?

2. What's your next step?

3. How can we help you?

I commented on the event page, "Is it okay if I have a really hard time answering those questions?" 

The host responded, "Absolutely!" When I got there, I'd had a can't-get-out-of-bed-I'm-so-depressed day. I showed up half an hour late wearing mismatched clothes. What I found was authentic people with admirable goals like:

-Become an advocate for environmental sustainability.

-Become an advocate for early childhood education.

-Start a family and market organizational tools for working parents.

I said, "Look, my mom is having spinal surgery in a week and I'm going back to Seattle for the month to take care of her. Can my goal be to be okay, like to stay sane?"

Based on the values and attitudes of most people I'd met in L.A., I expected, "No, you must lose thirty pounds, start a nonprofit, and write two novels!" 

But what I got was, "That's a huge goal, Sarah. That's a great one."

I returned to L.A. the night before the March meeting. The surgeon had successfully removed the cluster of tumors from C1 and C2 of Mom's spine. Each family member had had some kind of freak-out over the course of the month, but for the most part, we held it together. So I was surprised when I couldn't find the energy to unpack, get groceries, make plans with friends, and I never made it to that March meeting. I retroactively list that month's goal as "Recover Sanity."

I'll save the details for another story, but ultimately I did get through that depression, and I showed up at the April meeting ready with the concrete goal to "Write 30 Poems in 30 Days for National Poetry Month." AND I DID IT! Half of them were too rough to post on my creative writing site (www.sweetlovetruly.com), but I did it; I wrote them!

At the May meeting, I declared, "I'm ready to call myself a writer." The host repeated my statement back to me to celebrate the gravity of it. I majored in Creative Writing. Like, it was probably pretty obvious all along that I wanted to build a life around writing. Oh well.

I call this month's goal "Spring Cleaning." I have a to-do list, at the end of which the surface layers of my life will be totally organized, like a blank slate. (You're allowed to use cliches in goal-setting. I'm confident about that.) I also made a goal to write two blog posts. Ta-da!

I haven't explored all of the resources on LiveYourLegend.net. Except for Creator Scott Dinsmore's TED Talk, all of my directon has come from having a monthly group meeting to give me something to work toward, and those three big questions.

1. What are you building?

2. What's your next step?

3. How can we help you?