An UnderLeaf Frog: Dina Stander
“Welcome to Gimp City!” my father once exclaimed when I visited him in the hospital after a surgery. Being disabled, it turns out, is a family affair. I entertain this idea that my disability doesn't show so much, despite the cane. Then I catch a glimpse of my reflection passing a window in town. Not so invisible, Gimp Girl!... then a haughty quip back at myself, still make it look pretty good most days. After this next round of surgery I expect I'll need more mobility aid devices and, just like aging, I won't be able to hide these changes or make it look good. So maybe it will help to write about it a little bit, so y'all know more about whats happening before you ask about whatever new rig I'll be sportin'.
I'm gonna get my hair cut way-way short, ahead of my own surgery date next week. Because I don't want to have to bother with hair for a few months. I hesitate on this because people who see me in real life may think I'm 'sick' in a dying way, and I'm not. Then again, it may be a useful visual clue that all is not well in my universe. Since I've mentioned the surgery on social media, people have been asking me whats up with my spine. I usually don't talk about my list of conditions... because its a freakin' list! and personal, and everything on the internet is public. And I don't really need the Hive to mind about me all that much. However, as I head into the hands of surgeons (who can help but not fix) and spend a bit more time in the facebook group of people who share one of my rare conditions, it occurs to me that in this moment more disclosure could serve the common good.
I coach people with chronic and terminal illness who are planning for or contending with end-of-life. We work on wayfinding for planning and self-care, to explore grief, to make good decisions about health care proxies and whether or not to sign a DNR. We rehearse conversations to have with family and friends. I have been having to practice what I preach this week, in ways that are too close to the bone. Its hard to talk to your kid about body disposition preferences when you are not dying, but just in case, since surgery always holds the risk of ending. We laugh. We hold hands. I promise to come home again.
So, um. yeah, the broader educational moment: These conditions and processes that send me again to the neurosurgeon all start with an unnamed glitch in my dna that causes poor collagen development which leads to degenerative disc disease. Another part of the congenital glitch is a narrow spinal canal and a tendency towards persistent bone building in the canal, causing more narrowing. This disease process is called spinal stenosis. The variety of stenosis I have is a super efficient hard worker. I also have post-surgical cauda equina syndrome and fibromylagia, spondylosis and spondylolistheses, intermittent CSF leaks, and thoracic and cervical myelomalacia. I've already had two lumbar and two thoracic spine surgeries. The icing on my cake of rare conditions is OPLL (ossification of the posterior longitudinal ligament), which is most prevalent in a small proportion of older east Asian males. It ate all the way through the dura in my lumbar spine (peeky-boo, arachnoid!) and will make the upcoming surgery in my neck more delicate. I recently consulted with an endocrinologist, himself an east Asian male, and we had a good laugh about me being an Ashkenazi Jewish woman with this disease. What all this adds up to for me is a progressive spinal cord injury. But you can walk, people say, so how is this a spinal cord injury? Its not a severance, for now. Just an affliction. Thats how I can walk.
I have been contending with pain from a narrow canal since I was a child. When I was 18, Xrays revealed spinal degeneration usually seen in people over 55. I was 18 so of course I didn't give it much thought at the time. I needed surgery at 39. My skeleton hit old age long before my head and heart. Which brings us around to wayfinding. Finding a way through this next round of surgery. Navigating fear of being paralyzed by it. Girding my loins for a long recovery. Paddling through the shoals of uncertainty; will my limbs still work, will my brain still work? Will heart-head-hand-page still be a road I can easily travel? Will I be able to adapt to whatever the changes are in how it feels to embody this sack of flesh, bone, and je ne sais quoi? Then it gets dark… where will we put a wheelchair ramp? Will I want to live if I am ventilator dependent? Its good I have a sense of humor.
People ask whats wrong with me but since the answer is complicated it doesn't mean much. I have this problem with health care providers too. If I am your patient my needs will sometimes be complex, certainly beyond your training. This being said, if you find yourself curious about my list of maladies and want to learn more, please start with the OPLL and myelomalacia. People with these conditions live in bodies that are afflicted by a progressive interior wrongness that is hard to see on imaging and causes an unusual array of suffering. We are often undiagnosed, misdiagnosed, and (seriously) told its all in our heads. We get more information about how to live with these conditions from each other than from doctors. We even get told by primary care providers that the diagnosis of myelomalacia is an insignificant finding, “if it means anything at all,” said one, because they'd simply never heard of it before (e.g. how to know when your doctor is a bad match for you). Here is a link to a short video (7 min) that explains how myelomalacia is caused and progresses and what patients may experience, that also gives some perspective on how frustrating it is to get good care. https://www.youtube.com/watch?v=Q647OvR07Us
A box came in the mail the other day. A person we are making a pair of burial shrouds for had been walking on the beach near her house. I had asked her, during a phone conversation, to relay a hello to the ocean from me. Nested in the box mailed across the state to my dirt road up a hill in the woods, was a carefully wrapped delicate white scallop shell, unusually smooth, with a touch of wampum purple at its root. A gift from the sea. Her gift, held gently in my hands felt like a tether line cast so I can pull myself back into the work of Wayfinding and Shrouding as I recover and reconvene myself after surgery. I have never been more aware of the circle of care that I have spent this lifetime cultivating. People from all over who are helping me spin the prayer of healing. At the close of every day I take a moment to let myself receive these good intentions.
When I was choosing guiding principles for this year I landed with the word forward, and because the going is so steep right now I kept last years word on board too: steady. Both words are posted on the wall above my desk, in the same room where my post-surgical hospital bed will be nestled in (to make caring for me easier on my family). Just below that bit of stoicism is a wink in purple ink: MAKE GOOD TROUBLE. I have myelomalacia and OPLL, I'm heading into a surgery that has significant risks. I am taking my own advice and preparing advance directives. I am letting my people know how much I love them, and I am letting myself receive all the good juju, love, and soup. Welcome to Gimp City. I am finding my way.