If I was hoping for some kind of vacation – even temporary – from pain after surgery, my nerves had other ideas. Just a few weeks after coming home from the hospital, an occasionally sore spot in my right thumb erupted into an almost constant electrical storm up and down my entire arm. Even before neurosurgery I knew my weird thumb pain would be an eventual problem, but crap. I thought it’d be more eventual than this.

I was looking forward to enjoying the Seattle summer before having to deal with this garbage again. It was such a wet, miserable winter and I only got through our nonexistent spring by concentrating on recovery. I pushed through months spent beneath the gross dome of cloud cover; cajoled myself out of the regret of not being able to take my kids home this year by pinning every last shred of hope on the way Seattle blooms in the sunshine. Heck, I scheduled my surgery for the end of March specifically so I could be well enough to enjoy my first pain-free summer with the kids.

But if this weekend was any indication, I am no closer to being pain-free than I was the day before I had my tumor removed. I found a painful trigger point a little above my elbow while idly rubbing my arm, and just that little bit of pressure put my arm excruciatingly out of commission for the rest of the day.  And a wee bit of gardening took two full days, after which I cried in the shower while trying to quiet the burning. Is it a tumor? We can’t know for sure until we get an MRI, and my insurance company is being like every other insurance company during this infuriating health care climate, so I’m not sure how long it’ll take to get an MRI of my arm approved.

If you follow me on social media, that whole MRI business might seem confusing. Didn’t you just tweet about having an MRI last week? Why yes, I did! I got imaging of my cervical and thoracic spine on Friday even though I was pretty certain I don’t have any tumors in either of those places. And while it’s a relief to have that confirmed (look Ma, no tumors!) it’s more than just annoying that my insurance would more easily approve a spinal MRI that I didn’t particularly want, rather than the arm MRI I do.

After going confirming that whole no spinal tumor thing, my neurosurgeon’s nurse did a pain and strength test. My right hand – my dominant hand – is surprisingly weak. Like, I never even realized how weak it’d been; I was just concentrating on the pain. But now at least the pain makes a little more sense. I’m working my hand harder than it’s capable, just to do things like brush my teeth and eat my dinner. It’s taken me hours to type this blog post, resting between getting a line or two down. It took me all of last week to get five hundred words in on a story I’m writing, even though my brain is in a space where the words are slick and spilling. I didn’t even realize that was the problem until I “failed” that strength test. And I can’t tell which feels worse to me: not having the words, or not having the ability to get them out.

I’ve been spending a lot of time looking at tools like speech-to-text software and electric toothbrushes, determined to not let my bastard of a limb keep me down too far for too long. I’ve got more exercises from my Physical Therapist and I joined a gym to keep my body as functional as I can. There’s a lot I still can do, even if I can’t do it for many minutes at a time.

Right now I’m waiting for the next steps in figuring out what is going on with my right arm. I’ve got other suspicious pains ready to take center stage once this thing with my arm is resolved. I’ve always known my this condition meant being in and out of surgeries, but of course like any other human being I held out hope that I would be different. That I would somehow be one of the lucky few among the unlucky few to get this tumor condition. Some people with NF only develop a single tumor in the whole of their lives. And duh, I totally wanted to be one of them. But I guess I can’t be too greedy and ask to dodge the no- spinal-tumor bullet and the no-multiple-tumor bullet. Dammit.

Now after taking three and a half hours to write this post, I have to ice my hand and take more ibuprofen. And then I’m going to sit in my back yard, underneath the shade of my Japanese maple, and I am going to enjoy whatever I can. I am going to pet my enormous cat and eat something delightfully sweet. I am going to listen to my dear friend’s audiobook and feel like she’s right there telling me all her stories. I am going to breathe and laugh and talk story with my son. I am going to feel awful and sad about my declining abilities, but I am also going to feel, deep in my naʻau , that my body is a blessing, even if it did come with a weird little genetic mutation that makes living inside it an enormous pain.

And I can live with that.

image is a picture I took of geese and goslings in the grass by Greenlake in Seattle, WA.


  1. Sending love. And letting you know it means a lot to me to get these updates – thank you. I know it’s not just for people reading – the writing itself matters, but I wanted to let you know I appreciate it, too. Thank you for spending your spoons on it! <3

  2. I just read this. I know you only through your posts, but I’m paying attention. I hope in the last week there has been some easing of your pain, maybe the beginning of an answer to what’s/where is it going on and what’s next in addressing it. Life takes a lot of courage anyway, and your life requires more than many of ours. You exercise it a great deal of the time, from what I read. It ebbs and flows, yet can continue growing stronger and stronger. That is my little prayer for you, that your courage grows, that you are ever surrounded by love and caring.

    1. Thanks, Holly. So far there are more questions than answers, but better management of pain so I’m pretty happy about that. I love the prayer you sent, and I am so grateful for it. And you. <3

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.