Happy Zipperversary Times Two

Most Chiarians who have had decompression celebrate what they call their zipperversary. This is the anniversary of their brain surgery, a momentous occasion, because it undoubtedly changed their life, for better or worse. Either way, it gives you a battle scar, and a badge of honor. Surviving brain surgery is no joke.

 

For me, I’ve got two zipperversaries. One in May 2015, and one in June 2016. So, celebrating them both, roughly mid-point seems good enough. Either way, it’s been 4 years, and three years, respectively, since someone’s poked my brain, removed bits of my skull and spine, and in one case, drilled some titanium into my head. It sounds so…horrible.

 

I still can’t look at images of patients in position for my surgeries, because it sends me into cold sweats, or straight panic attacks. Chiari surgery is performed with the patient face down, bolted to the table. BOLTED to the damn table. Just that thought makes me shiver. I was BOLTED to a table. My body, my head, was bolted to a table. I know this, because I had bolt scabs for days, both times, when I woke up. I touched them obsessively. For some reason, this little item always skeeved me out the most, knowing that I was treated like a piece of wood you needed to keep still, in a vice.  

 

The second surgery saved my life. If I’m honest, I’d probably have eventually killed myself. Living in the state of pain I’d been left in, and in the state of rapid deterioration, I’m not sure how long I could’ve held out. If not that, I’m not sure how long the rest of my body could’ve held out. I was already on massive amounts of pain killers, just to survive, and my brain was mush. People underestimate what happens to your brain when you are on doses that high. You lose yourself. You become depressed, stop making rational decisions, and you forget time, space, and all sense of logic. Who can last forever like that? I was being treated as if I were a cancer patient, in her last days. There are months of that period that I have no memory of.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

Celebrating these milestones is a strange thing. It’s double-edged. You recall that you survived and endured, and you remember that you overcame; yet, you also sit and remember that it means you are sick, and you were once sicker. It’s a weird dissonance. Recalling getting out of my hospital bed at Walter Reed in 2015, being forced to walk, to prove to the nurses that I didn’t have spinal damage, was terrifying. The fear that I might not be able to, is a memory that is part of my very core, because it wasn’t a “maybe,” it was a realistic possibility. The uncertainty of what was broken, what was going to heal, and what wasn’t, was very scary.

 

Now though, I know the extent of my “damage.” I’m healed, as healed as I’ll ever be, really. In fact, my UCLA neurosurgeons just reviewed my latest MRIs and reassured me that I wasn’t having new Chiari symptoms and headaches, and that my plate still looks great. My new headaches are because my neck, having been diced in half twice, is fucked up. It will only continue to get worse, over time. This happens with a spine that is weakened by surgery, and with muscles that have been hacked apart. But, I can feel “safe,” that it’s not my skull or brain. Phew. The point is that I will periodically fall apart, here or there, but I will likely be “fine,” from here on out…. probably. That’s what my annual MRIs are for.

 

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

So, I celebrate. I remember. I monitor. I remain vigilant. I remember that I’m the healthiest version of a sick person that I can be. I solider on.

 

This year, to mark the occasion, I go under the knife again with another major surgery. This time, I am having my Fulkerson Osteotomy on June 17th. It’s a ridiculous procedure that I think was invented in the middle ages, and hasn’t been modified since. It involves breaking my leg, installing some bolts, fully flipping my knee cap, and moving all my ligaments. As a bonus for all this torture, I get an entire new sheet (is that what it’s called?) of cartilage under my knee cap, grown and cloned from my very own cells.

 

It should take a full year to heal, so I’m super stoked for this. Supposedly, this was preferable to a knee replacement. I am trusting my doctor who basically told me that my knee was a disaster and he wasn’t sure how I was walking. Since it currently dislocates roughly 4-5 times a week, I’m ready for either this surgery, or an amputation.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

 The cool part, at least I think so, is that I’m like a celebrity at my local Physical Therapist’s office, because although I go there for shoulder work right now (remember that surgery too – I’m a disaster), they all know the Fulkerson is coming. It’s a relatively rare procedure, both because most people’s knees aren’t fucked up enough to need it, and because when they are, many people choose to live with the pain, rather than face the terrifying operation. However, the PT is kind of specialized, so they are really excited about it. Plus, they are crazy excited to see how the cloned cartilage works out, because this part is even more rare.

 

This must be what it feels like to be popular. It’s the same feeling I get when I go to my tailor and she compliments both my clothes and me, every time. She always tells me that I look pretty. Honestly, I pay a little more (I think) to go to her, just because she compliments me. I’m such a sucker for positive attention. Praise me! Someone once asked me why I enjoy education and school so much, and I said, “because that’s the place where you get A’s.” I thought it was a stupid question. I think this sums me up, in a nutshell.

 

Anyway, it’s awesome to look back and remember that I was once sicker. I once thought I wouldn’t make it until the morning, leaning over and begging Bryon to tell Collin I loved him. I once thought I might not be able to read for comprehension again. I once thought I’d have to use my cane, forever. I once thought that I wouldn’t survive surgery. I once thought I’d be on Fentanyl until I died…then, I thought Fentanyl withdrawal would kill me (don’t start Fentanyl, kids). But, it all gets better, at least a little. Look at me now, starting Harvard in less than a month!

 

I’m still slower than I used to be. I’m still racking up surgeries like I’m collecting hospital bands, or cats (which I am). I’m still in therapy for PTSD, depression and anxiety. I still have memory issues and pain problems. I still have days where my body forces me to just…. sit. I still have more health problems than anyone would care to listen to, and I would care to list. But, I get up, every day, and try. I’m alive to do it. That’s what a zipperversary is really all about, that you lived to fight another day.

 

So, if I’ve got any fellow Chiarians reading this, keep trying. Keep fighting. It isn’t sunshine and rainbows with unicorns farting glitter, on the other side. It’s going to suck, some days. Some days it’s going to be terrible. But, the days that it isn’t, it’s pretty great. Hang in there. It can be maddening to read stories of post-op patients who run marathons after they heal, or who climb Mt Kilimanjaro, or become astrophysicists; but they are freaks of nature, or liars. Do you. Your Mt Kilimanjaro might just be to get dressed today, and that’s just fine!